Thanks Ron! Looking forward to getting to know all of you.
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- Thread starter Cat-a-Tonic
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Cat-a-Tonic
Super Moderator
Good luck, Adadzio! I hope you enjoy your big lunch! And of course I hope the scopes go well and that you get some worthwhile results!
Hi Angela1435, welcome to the forum. Your onset of symptoms sounds really similar to mine - I was a similar age (30) and mine also happened at a high-stress time (I had thought I was going to lose my job because they were doing a lot of job cuts at my company, it turned out I didn't get laid off but basically the rest of my department did get let go so I had survivor's guilt plus tons of extra work because somebody still had to do everything). Stress isn't the cause of IBD (Crohn's/colitis), but it can trigger flare-ups, so I think that's part of what happened with me, the stress helped set some underlying things in motion.
Out of curiosity, how high was your CRP? Have they done any other bloodwork on you? What about stool tests, have they checked your fecal calprotectin? I wish you lots of luck with the colonoscopy next week - please keep us posted on how everything goes! And let us know if you have questions about the scope or the prep.
Random question for everybody: Anyone else have a lot of sinus issues? I have had tons of sinus issues all my life and I guess I really have no idea why. I broke my nose when I was a kid and it never healed right, so I've always blamed my sinus issues on that, but honestly I have no idea. I get a lot of sinus migraines - in fact, I complained about that to my GP the other week and he did a sinus CT scan on me, but it came back totally normal, so I still have no answers. I ended up with a horrendous sinus migraine on Wednesday and I'm just about over it now, but my sinuses are still stuffy and weird. I've been blowing my nose a ton since the onset of the migraine, and I must have been blowing my nose too hard or something? Because I got a horrible nosebleed this morning! Literally, the worst one I've ever had, I wasn't sure that it was going to stop bleeding and I was saturating tissues with blood. Not a fun time. It seems to finally have stopped bleeding, but it was slightly scary for a bit. Anyway, I forgot where I was going with this, I guess just interested to see if there might be any connection between sinuses and my other health issues, or if anyone else has similar sinus issues and what, if anything, you do for your sinuses.
Also, ha ha, I finally stopped bleeding out my ass, so I guess I had to start bleeding out some other hole!
Maybe next I'll just start bleeding out my ears or eyeballs or something. So ridiculous. It's like my body hates having blood and wants to get rid of it any way it can.
Hi Angela1435, welcome to the forum. Your onset of symptoms sounds really similar to mine - I was a similar age (30) and mine also happened at a high-stress time (I had thought I was going to lose my job because they were doing a lot of job cuts at my company, it turned out I didn't get laid off but basically the rest of my department did get let go so I had survivor's guilt plus tons of extra work because somebody still had to do everything). Stress isn't the cause of IBD (Crohn's/colitis), but it can trigger flare-ups, so I think that's part of what happened with me, the stress helped set some underlying things in motion.
Out of curiosity, how high was your CRP? Have they done any other bloodwork on you? What about stool tests, have they checked your fecal calprotectin? I wish you lots of luck with the colonoscopy next week - please keep us posted on how everything goes! And let us know if you have questions about the scope or the prep.
Random question for everybody: Anyone else have a lot of sinus issues? I have had tons of sinus issues all my life and I guess I really have no idea why. I broke my nose when I was a kid and it never healed right, so I've always blamed my sinus issues on that, but honestly I have no idea. I get a lot of sinus migraines - in fact, I complained about that to my GP the other week and he did a sinus CT scan on me, but it came back totally normal, so I still have no answers. I ended up with a horrendous sinus migraine on Wednesday and I'm just about over it now, but my sinuses are still stuffy and weird. I've been blowing my nose a ton since the onset of the migraine, and I must have been blowing my nose too hard or something? Because I got a horrible nosebleed this morning! Literally, the worst one I've ever had, I wasn't sure that it was going to stop bleeding and I was saturating tissues with blood. Not a fun time. It seems to finally have stopped bleeding, but it was slightly scary for a bit. Anyway, I forgot where I was going with this, I guess just interested to see if there might be any connection between sinuses and my other health issues, or if anyone else has similar sinus issues and what, if anything, you do for your sinuses.
Also, ha ha, I finally stopped bleeding out my ass, so I guess I had to start bleeding out some other hole!
Maybe next I'll just start bleeding out my ears or eyeballs or something. So ridiculous. It's like my body hates having blood and wants to get rid of it any way it can.I've always had tons of nosebleeds, but not really any other sinus issues. I've had to call paramedics TWICE because I had such acute bleeding that just wouldn't stop. It's definitely scary. I had to have some inflatable... thing shoved up my nose until I could have it cauterized. After that though I've had less trouble.Good luck, Adadzio! I hope you enjoy your big lunch! And of course I hope the scopes go well and that you get some worthwhile results!
Hi Angela1435, welcome to the forum. Your onset of symptoms sounds really similar to mine - I was a similar age (30) and mine also happened at a high-stress time (I had thought I was going to lose my job because they were doing a lot of job cuts at my company, it turned out I didn't get laid off but basically the rest of my department did get let go so I had survivor's guilt plus tons of extra work because somebody still had to do everything). Stress isn't the cause of IBD (Crohn's/colitis), but it can trigger flare-ups, so I think that's part of what happened with me, the stress helped set some underlying things in motion.
Out of curiosity, how high was your CRP? Have they done any other bloodwork on you? What about stool tests, have they checked your fecal calprotectin? I wish you lots of luck with the colonoscopy next week - please keep us posted on how everything goes! And let us know if you have questions about the scope or the prep.
Random question for everybody: Anyone else have a lot of sinus issues? I have had tons of sinus issues all my life and I guess I really have no idea why. I broke my nose when I was a kid and it never healed right, so I've always blamed my sinus issues on that, but honestly I have no idea. I get a lot of sinus migraines - in fact, I complained about that to my GP the other week and he did a sinus CT scan on me, but it came back totally normal, so I still have no answers. I ended up with a horrendous sinus migraine on Wednesday and I'm just about over it now, but my sinuses are still stuffy and weird. I've been blowing my nose a ton since the onset of the migraine, and I must have been blowing my nose too hard or something? Because I got a horrible nosebleed this morning! Literally, the worst one I've ever had, I wasn't sure that it was going to stop bleeding and I was saturating tissues with blood. Not a fun time. It seems to finally have stopped bleeding, but it was slightly scary for a bit. Anyway, I forgot where I was going with this, I guess just interested to see if there might be any connection between sinuses and my other health issues, or if anyone else has similar sinus issues and what, if anything, you do for your sinuses.
Also, ha ha, I finally stopped bleeding out my ass, so I guess I had to start bleeding out some other hole!
So it if keeps happening in the same spot/nostril, then definitely I'd recommend that. The cause for my frequent bleeds was a cluster of vessles that sat just below the skin and kept bleeding if I so much as nudged my nose, or if I had a cold or blew my nose or something.
Angela - welcome! Sorry for all you've been through. I hope you get some quality answers, and soon.
Cat - no idea on your sinus issues, my headaches and migraines lately center around my right eye.
I am sort of freaking out. I have had 4 explosive watery D's in just over 2 hours, with some mucus. The last time it came this fast and furious, I had C Diff. Please oh please let this be some sort of virus instead. I'm trying to sip on water, but I'm already worried about getting dehydrated
Cat - no idea on your sinus issues, my headaches and migraines lately center around my right eye.
I am sort of freaking out. I have had 4 explosive watery D's in just over 2 hours, with some mucus. The last time it came this fast and furious, I had C Diff. Please oh please let this be some sort of virus instead. I'm trying to sip on water, but I'm already worried about getting dehydrated
Cat-a-Tonic
Super Moderator
Izzie, wow, thank you for the nosebleed info. That sounds awful! Fortunately my bleeding stopped after 20ish minutes and I didn't have to call for help, how horrible that it got that bad for you. It's my left nostril and I will keep a close eye on things. For now it's stopped and I'm just going to leave my nose alone for awhile no matter how sniffly I get! I'm hoping it's just a combination of, my sinuses are messed up from the migraine, plus the winter air is super dry. Hopefully it's nothing worse than that for me. I'm glad to know that there is at least one treatment option, although cauterization sounds painful and unpleasant too.
Wildmtn, if it were me, I'd be going to the ER or urgent care to get some tests done right away. Maybe if they do tests while it's this bad, they can catch whatever the cause is. Can I ask, does your stool have a weird smell? I have a friend who is a CNA in a hospital, and he's described c diff stools as having a sickly-sweet smell, "like sweet and sour chicken that's gone bad". That's my little tidbit of knowledge about c diff. I really hope it isn't c diff for you. But if it is, do look into fecal microbiota transplants - they have a high cure rate for c diff and little/no side effects (the standard front-line treatment for c diff is harsh antibiotics which obviously do have side effects). Good luck! Please keep us posted.
Wildmtn, if it were me, I'd be going to the ER or urgent care to get some tests done right away. Maybe if they do tests while it's this bad, they can catch whatever the cause is. Can I ask, does your stool have a weird smell? I have a friend who is a CNA in a hospital, and he's described c diff stools as having a sickly-sweet smell, "like sweet and sour chicken that's gone bad". That's my little tidbit of knowledge about c diff. I really hope it isn't c diff for you. But if it is, do look into fecal microbiota transplants - they have a high cure rate for c diff and little/no side effects (the standard front-line treatment for c diff is harsh antibiotics which obviously do have side effects). Good luck! Please keep us posted.
Yeah it's unpleasant for sure. Though I've been so used to it that it hasn't been that scary for me. My mother however still tells me about the time she found me covered in blood when I was a baby and how freaked out she was before she figured out I had a nosebleed. :tongue: Another tip to get it to stop faster is ice! Press an ice pack on the outside of your nose on the side that's bleeding (not cold enough for for long enough that it hurts of course) the vessels contract and the bleeding usually stops or at the very least isn't as intense. Also there's hemostatic gauze or clotting sponges specifically made to stop nosebleeds faster and it usually works unless you're bleeding so much that you bleed through it before it can take effect.
Cat, it seems like lots of days I have issues with my sinuses.
Cat-a-Tonic
Super Moderator
Izzie, that must have been terrifying for your mother! Thanks for the tip, I will make a note to use an ice pack next time. This happened right as I got to my desk at work so all I had handy was some tissues, but there are ice cubes in the fridge at work so I will grab some and make an ice pack with ice cubes and a paper towel if this happens at work again. I'm also going to look into those gauze and sponges you mentioned - if they're not too pricey I think I will get some just to have in my first aid kit. Better safe than sorry, right? Thanks again for your help!
Ronroush, good to know I'm not alone. Are your sinuses just bad during winter, or all year round? It seems like mine are bad all year round. I don't know why since my CT scan was normal. It's just frustrating.
Anybody else REALLY happy that January is almost over? This month has been awful! I've bled out my ass more than I ever have before, and I've now bled out my nose more than I ever have before. My body has jettisoned more blood this month than at any time in the past. I really hope February is better than this month has been. Sheesh.
Ronroush, good to know I'm not alone. Are your sinuses just bad during winter, or all year round? It seems like mine are bad all year round. I don't know why since my CT scan was normal. It's just frustrating.
Anybody else REALLY happy that January is almost over? This month has been awful! I've bled out my ass more than I ever have before, and I've now bled out my nose more than I ever have before. My body has jettisoned more blood this month than at any time in the past. I really hope February is better than this month has been. Sheesh.
Well, I am returned from the clinic and feeling pretty disappointed. Everything went smooth with the scopes but the problem is I have no idea what my GI said to me, I don't remember anything at all. My dad relayed some of it, but he never thinks my health issues are even mildly concerning.
So, this is all coming from him:
GI removed some polyps and they are in the lab, but other than that everything looked normal. The mucus/bleeding is not a concern to them, and no one seemed concerned that my small bowel is distended with abnormal structure (distal ileum to be exact, as found w/ the barium x ray).
In my dad's wonderfully frustrating words: "There's nothing wrong with you."
So, diagnosis: IBS. Treatment? Basically, I need to take fiber and exercise and eat better/regular meals. The sedation meds are still messing with me, but damn..I am somewhat amused by it all. I'm supposed to eat more regularly and take care of myself, and everything will magically get better? How can I do that, when the whole reason I don't eat is because I lost my appetite a year and half ago and no one knows why and the experience of eating now gives me anxiety? It's pretty tough to "take better care of yourself" when your body rejects food, your body is covered in bruises and joint pain, and the pounds are constantly dropping off.
It's a vicious cycle, I will tell ya. I'd like to see what my GI tells me at my followup. But I'm feeling pretty discouraged. It's not even the IBS diagnosis. It's that I literally don't have to energy to care anymore about being underweight and non-functioning. I'll suck it up and deal with it, if it means I don't have to deal with this medical BS anymore!
So, this is all coming from him:
GI removed some polyps and they are in the lab, but other than that everything looked normal. The mucus/bleeding is not a concern to them, and no one seemed concerned that my small bowel is distended with abnormal structure (distal ileum to be exact, as found w/ the barium x ray).
In my dad's wonderfully frustrating words: "There's nothing wrong with you."
So, diagnosis: IBS. Treatment? Basically, I need to take fiber and exercise and eat better/regular meals. The sedation meds are still messing with me, but damn..I am somewhat amused by it all. I'm supposed to eat more regularly and take care of myself, and everything will magically get better? How can I do that, when the whole reason I don't eat is because I lost my appetite a year and half ago and no one knows why and the experience of eating now gives me anxiety? It's pretty tough to "take better care of yourself" when your body rejects food, your body is covered in bruises and joint pain, and the pounds are constantly dropping off.
It's a vicious cycle, I will tell ya. I'd like to see what my GI tells me at my followup. But I'm feeling pretty discouraged. It's not even the IBS diagnosis. It's that I literally don't have to energy to care anymore about being underweight and non-functioning. I'll suck it up and deal with it, if it means I don't have to deal with this medical BS anymore!
I don't have much to tell you besides that this sounds very familiar to me. I had my first scope almost a year ago and was told nothing was wrong. Here I am, still with symptoms. :shifty-t:
Do try the advice you get from doctors, if it sounds at all reasonable to you. In my frustration I've sometimes ignored little bits of advice here and there that later on have turned out to be at least a little helpful.
Do you see a therapist? I figure even if a therapist can't help you with your physical symptoms, one could perhaps help you deal with the anxiety and fed up feelings you're having regarding food and this whole process of looking for answers.
Also don't be afraid to call your doctor and ask about the results. I too had very poor memory after my scopes and didn't want to rely on my mother's account of events, so I called and asked.
Cat-a-Tonic
Super Moderator
Adadzio, I'm so sorry to hear you didn't get any answers today. How frustrating! I wish I could say something to make this suck less. What I can say is that I've been there and I know how crappy a feeling it is, to know that there is something very wrong but to be told that you're fine and normal. You just want to scream, I am not fine!!
With your mention of the distal ileum, it sounds to me like you've got some involvement with your small intestine which they just aren't able to really get to (only the very beginning and end) with the scopes. So, I do encourage you to pursue further testing. It's not easy to visualize the small intestine - double balloon endoscopy, pill cam, or MRE (MRI enterography) are your best bets. When is your follow-up with your GI? Hopefully he's a good enough doctor to know that normal scopes don't necessarily mean that it's automatically IBS. Push your GI for further tests, let him know that you're suffering and that it's not acceptable to brush you off with the old "eat more fiber and you'll be fine" line.
And seriously, I'm ranting now, but fiber is *not* a cure-all. I have psyllium husks and oatmeal every day plus I exercise regularly, and all that fiber and exercise certainly hasn't cured me (they do help somewhat, but it's naiive to presume that a person's ailments can magically go away with some fiber and gym time). And if you have active inflammation, fiber is going to make things worse and could even cause a blockage. It's because of insoluble fiber that I started bleeding out my ass in the first place. Just, ugh. I'm seriously frustrated on your behalf. I've been there myself and it's so ignorant of medical staff to brush things off as IBS and to also propose fiber as a cure. You don't lose that kind of weight with IBS, for one thing, and it doesn't impede your ability to eat to that degree. There's clearly something else going on and I really hope you can get some proper answers, soon.
Do you have a plan for right now? Sometimes it helps to play the role of the compliant patient. Try some (soluble, in small amounts) fiber and some mild exercise if you can, just so that you can report back to your doctor that you've tried and failed to magically be cured via those methods. If your doctor is halfway decent, they should then come up with a new plan (medication trial, more tests, etc) which is hopefully much more helpful.
Oh, one more thought. Did they take biopsies? There's always the chance that the biopsies might show something. I don't want you to get your hopes up, because in my experience my hopes always get dashed by normal test results, but it's possible they'll find something.
With your mention of the distal ileum, it sounds to me like you've got some involvement with your small intestine which they just aren't able to really get to (only the very beginning and end) with the scopes. So, I do encourage you to pursue further testing. It's not easy to visualize the small intestine - double balloon endoscopy, pill cam, or MRE (MRI enterography) are your best bets. When is your follow-up with your GI? Hopefully he's a good enough doctor to know that normal scopes don't necessarily mean that it's automatically IBS. Push your GI for further tests, let him know that you're suffering and that it's not acceptable to brush you off with the old "eat more fiber and you'll be fine" line.
And seriously, I'm ranting now, but fiber is *not* a cure-all. I have psyllium husks and oatmeal every day plus I exercise regularly, and all that fiber and exercise certainly hasn't cured me (they do help somewhat, but it's naiive to presume that a person's ailments can magically go away with some fiber and gym time). And if you have active inflammation, fiber is going to make things worse and could even cause a blockage. It's because of insoluble fiber that I started bleeding out my ass in the first place. Just, ugh. I'm seriously frustrated on your behalf. I've been there myself and it's so ignorant of medical staff to brush things off as IBS and to also propose fiber as a cure. You don't lose that kind of weight with IBS, for one thing, and it doesn't impede your ability to eat to that degree. There's clearly something else going on and I really hope you can get some proper answers, soon.
Do you have a plan for right now? Sometimes it helps to play the role of the compliant patient. Try some (soluble, in small amounts) fiber and some mild exercise if you can, just so that you can report back to your doctor that you've tried and failed to magically be cured via those methods. If your doctor is halfway decent, they should then come up with a new plan (medication trial, more tests, etc) which is hopefully much more helpful.
Oh, one more thought. Did they take biopsies? There's always the chance that the biopsies might show something. I don't want you to get your hopes up, because in my experience my hopes always get dashed by normal test results, but it's possible they'll find something.
It seems like it is all year round. I will be glad when we get closer to spring because the remnants of the blizzard have not been easy.
Cat-a-Tonic
Super Moderator
Ronroush, we're supposed to get a blizzard here next week! Really not looking forward to that. It's supposed to hit us on Groundhog Day, so I guess that means we're not getting an early spring. Yuck. They said we could get up to a foot of snow. How much snow did you guys get?
Really not looking forward to that. It's supposed to hit us on Groundhog Day, so I guess that means we're not getting an early spring. Yuck. They said we could get up to a foot of snow. How much snow did you guys get?
Cat-a-Tonic
Super Moderator
Holy cow, that's a lot of snow! My dog loves snow too, but me, not so much. I like snowshoeing and ice skating, but it's a pain to have to shovel that much (all that bending really upsets my GERD) and I hate driving in snow, too. Gotta take the good with the bad I suppose.
Hi Cat,
I have had sinus problems ever since I was a kid. I have been treated all of my life with drugs like polaromine and have had so many different types of nasal sprays it is not funny. Nowdays I take two phenerghan 25mg daily and use either dymysta or rhinacort nasal sprays twice a day. The allergies have had a damaging effect on my nose and at one stage I was in emergency every six months for uncontrolled nosebleeds. I was still seeing my colorectal surgeon for followups at the time and he referred me to a collegue who was an ear nose and throat specialist. He used nine of those quarterising sticks (silver iodide or something like that) to deal with an annurism inside my nose.. I haven't had a bleed since then but I still have to take the anti-histamines and spray. the phenerghan also helps to alleviate vertigo that has hospitalised me twice. Ron.
I have had sinus problems ever since I was a kid. I have been treated all of my life with drugs like polaromine and have had so many different types of nasal sprays it is not funny. Nowdays I take two phenerghan 25mg daily and use either dymysta or rhinacort nasal sprays twice a day. The allergies have had a damaging effect on my nose and at one stage I was in emergency every six months for uncontrolled nosebleeds. I was still seeing my colorectal surgeon for followups at the time and he referred me to a collegue who was an ear nose and throat specialist. He used nine of those quarterising sticks (silver iodide or something like that) to deal with an annurism inside my nose.. I haven't had a bleed since then but I still have to take the anti-histamines and spray. the phenerghan also helps to alleviate vertigo that has hospitalised me twice. Ron.
Cat-a-Tonic
Super Moderator
Wow, Ron, that sounds horrendous! Sounds like your solution was the same as Izzie's - cauterization. I've had a hard time with nasal sprays, I feel like they just irritate my nasal passages even more. Maybe I should give them another try though. Something to think about for sure! Thanks for your reply.
Some people swear by the saline nasal sprays. They are not medicated but they do wash away all of the stuff causing the aggravation. I can't use the steroid based sprays continually with out a break as they do thin the blood vessels same as prednisone. I sometimes use them only at night so that I can clear my sinuses. I use a cpap every night and I have the mask with the nasal pillow so I need to start out with clear sinuses every night. Ron.
To whoever asked, my c reactive protein was 3.48. Also I got high on the ESR and that was 29. Not sure what that even means. Lol
Thanks Cat. My follow up is in 3 weeks, and I really do think this GI is a good one, that he cares and will listen…so I'm not giving up just yet. But I'm playing good patient and doing everything I should in the meantime.
He did take some biopsies—my dad said it was "tissue," and didn't seem to know if that meant they were from the polyps or the bowel itself? So, not holding out much hope for anything significant, but at least he did it.
Apparently he confirmed healthy the portion he was worried about (ileum, I'm assuming). But I know better than to think he could see the entire small bowel, especially because my terminal ileum seemed fine before, it was only the first part that showed issues!
Like I said, all of this was passed on to my dad, and he's not too knowledgeable about this stuff…so I'm hoping to speak with the office soon and beg them for some new kind of meds that will help me eat…otherwise I don't know how I can "force myself to eat regularly."
Another ordinary day still passing liquid stools. BP yesterday was 147/100 this morning it was 167/115. My stupid gp keeps on saying oh that is not too bad. I keep asking not bad for what , someone who is untreated or someone like me who takes 5 bp meds a day. See my nephrologist Tuesday ,see what words of wisdom he has to offer. Ron.
Interesting health day for me. Reflux still bad, also suddenly have D, which is rare for me. Feel weak and shaky and SO tired and icky overall, but managed to spend some time with family which was nice.
Have to travel tomorrow though which I don't love when closeness to a bathroom is required.Also the weak and shaky feeling always triggers anxiety for me. Or I think it IS anxiety and assume I'm anxious which makes me more anxious and then it's really just physical stuff and I should chill but that's easier said than done.
Really trying to foster a positive attitude though. I allow myself to feel bad about things when they're bad, I don't think it's healthy to push yourself to always be happy and positive even when things are legitimately shit. But things have been shit enough lately and I just want to have a brighter outlook even if things continue to be difficult, I suppose.
How do you guys deal with long periods of suckiness? I honestly feel like I'm generally a positive person, or I was before this illness stuff started, but I'm struggling with being positive when I look around and things are... maybe not ideal.
In the past 3 months I've had a death in the family, serious anemia that had me fainting at work and feeling like the walking dead, got hit by a car which completely knocked me out for a full week and had me walking on crutches for another few, had the flu over the holidays, an ear infection that my hearing hasn't fully recovered from yet, some other kind of virus with a horrible cough that I'm slowly getting over and right now I'm in the middle of a flare up of my stomach issues. Especially this time of year, I have such a hard time turning things around mentally.
My strategy has been to just stay insanely busy with work and school and social things - because most of the time not being alone and spending time with people helps me. But honestly I'm realizing I don't have the energy, which is very hard for me to accept. I don't know how to adjust my life so that I can feel comfortable and not too stressed, and at the same time not completely isolated and lonely because I'm stuck at home too much.
How have you guys had to adjust your work/home/social lives since you got sick?
Have to travel tomorrow though which I don't love when closeness to a bathroom is required.Also the weak and shaky feeling always triggers anxiety for me. Or I think it IS anxiety and assume I'm anxious which makes me more anxious and then it's really just physical stuff and I should chill but that's easier said than done.
Really trying to foster a positive attitude though. I allow myself to feel bad about things when they're bad, I don't think it's healthy to push yourself to always be happy and positive even when things are legitimately shit. But things have been shit enough lately and I just want to have a brighter outlook even if things continue to be difficult, I suppose.
How do you guys deal with long periods of suckiness? I honestly feel like I'm generally a positive person, or I was before this illness stuff started, but I'm struggling with being positive when I look around and things are... maybe not ideal.
In the past 3 months I've had a death in the family, serious anemia that had me fainting at work and feeling like the walking dead, got hit by a car which completely knocked me out for a full week and had me walking on crutches for another few, had the flu over the holidays, an ear infection that my hearing hasn't fully recovered from yet, some other kind of virus with a horrible cough that I'm slowly getting over and right now I'm in the middle of a flare up of my stomach issues. Especially this time of year, I have such a hard time turning things around mentally.
My strategy has been to just stay insanely busy with work and school and social things - because most of the time not being alone and spending time with people helps me. But honestly I'm realizing I don't have the energy, which is very hard for me to accept. I don't know how to adjust my life so that I can feel comfortable and not too stressed, and at the same time not completely isolated and lonely because I'm stuck at home too much.
How have you guys had to adjust your work/home/social lives since you got sick?
Angela - I think Cat knows more, but it is my understanding that those just mean active inflammation going on.
Adadzio - good luck with the followup and the diet going forward.
Ron50 - Sorry to hear you're having a rough time with D and your BP.
Izzie - It's nice to hear that you are able to give yourself some time and space to breath and just be. I think we all need that.
I am hanging in here. The D slowed down yesterday, and I just rode it out. In part because I had a hair appointment today and I didn't want to miss it. So now that I've done that, I've also tried to eat a bit today - some rice, and now some dry cereal. I still don't feel quite right, though.
Adadzio - good luck with the followup and the diet going forward.
Ron50 - Sorry to hear you're having a rough time with D and your BP.
Izzie - It's nice to hear that you are able to give yourself some time and space to breath and just be. I think we all need that.
I am hanging in here. The D slowed down yesterday, and I just rode it out. In part because I had a hair appointment today and I didn't want to miss it. So now that I've done that, I've also tried to eat a bit today - some rice, and now some dry cereal. I still don't feel quite right, though.
Cat-a-Tonic
Super Moderator
Izzie, I'm somewhat fortunate in that I'm a massive introvert, so I don't mind at all staying home by myself on days that I'm not feeling well. So I'm not really able to answer that, as I'm sort of the opposite as you in that regard. I never had much of a social life to begin with, and when I got sick, it was almost nice in a way to have an excuse to get out of social events. Sorry, can't come, I'm just not feeling well! That's actually been one of the nice parts of being ill, for me anyway. I'd wayyyyy rather spend an evening on the couch in my pajamas with my pets and my crocheting, than go out and have to face people and do things.
As for dealing with long periods of suckiness, I know it's really difficult. You just have to keep going and find little things that make you happy in the midst of the suck. I think I've talked about this before, but I tend to buy myself little gifts. For awhile I'd get myself a new bottle of nail polish every time I'd have to go to the doctor, hospital, or pharmacy. Long story short, I ended up with tons of nail polish, so now I buy myself a variety of little gifts every time I need a pick-me-up. Cheap jewelry, new clothes, accessories, shoes, etc. It's pricey sometimes so only get yourself something you can afford, but it really does seem to help me to get myself something nice. A little treat. My co-worker who has UC has said that laughter really helps him, too. He said he always watches a comedy movie or TV show whenever he's feeling down. So yeah, find little ways to be happy and to laugh, that's my general advice.
Adadzio, tissue biopsies should be from your intestinal mucosa, meaning not from the polyps. So that's good, hopefully something there will provide a worthwhile result. Keep us posted on the biopsy results and also on how you're doing while playing at being a good, compliant patient. How's the fiber thing going?
Angela, yes, those numbers mean that you've got some inflammation going on. They're general readings of inflammation anywhere in the body, so all they really mean is that you have some inflammation, somewhere. If you had a test such as fecal calprotectin, that's a more specific test of inflammation - it looks at inflammation markers specifically in the digestive tract. So that might be a good test to ask for next.
So I had another bleeding episode this weekend, but fortunately just one. I got together with my parents on Saturday and we ate and drank too much. We went chocolate shopping, then we had lunch, then we went to a winery and had a wine tasting and I'm sure I had too much wine. I just had too much in total that day, and bled out my ass once that evening. Spent Sunday feeling pretty rough but no more bleeding fortunately. I'm *still* on the steroid suppositories, not going to take myself off of them until I feel fully healed, and it's just like I am getting to the point where I don't know if or when I'll ever be healed. It's getting frustrating. But at least the steroids are keeping me from bleeding tons, I guess that's the silver lining. They're making me gain weight, though, and I wonder if they're contributing to the migraines. I don't know. I see my GI one week from today so I'll ask his opinion then. And I see the colorectal surgeon at the end of this month so hopefully she can help, too. In the meantime, bleh.
As for dealing with long periods of suckiness, I know it's really difficult. You just have to keep going and find little things that make you happy in the midst of the suck. I think I've talked about this before, but I tend to buy myself little gifts. For awhile I'd get myself a new bottle of nail polish every time I'd have to go to the doctor, hospital, or pharmacy. Long story short, I ended up with tons of nail polish, so now I buy myself a variety of little gifts every time I need a pick-me-up. Cheap jewelry, new clothes, accessories, shoes, etc. It's pricey sometimes so only get yourself something you can afford, but it really does seem to help me to get myself something nice. A little treat. My co-worker who has UC has said that laughter really helps him, too. He said he always watches a comedy movie or TV show whenever he's feeling down. So yeah, find little ways to be happy and to laugh, that's my general advice.
Adadzio, tissue biopsies should be from your intestinal mucosa, meaning not from the polyps. So that's good, hopefully something there will provide a worthwhile result. Keep us posted on the biopsy results and also on how you're doing while playing at being a good, compliant patient. How's the fiber thing going?
Angela, yes, those numbers mean that you've got some inflammation going on. They're general readings of inflammation anywhere in the body, so all they really mean is that you have some inflammation, somewhere. If you had a test such as fecal calprotectin, that's a more specific test of inflammation - it looks at inflammation markers specifically in the digestive tract. So that might be a good test to ask for next.
So I had another bleeding episode this weekend, but fortunately just one. I got together with my parents on Saturday and we ate and drank too much. We went chocolate shopping, then we had lunch, then we went to a winery and had a wine tasting and I'm sure I had too much wine. I just had too much in total that day, and bled out my ass once that evening. Spent Sunday feeling pretty rough but no more bleeding fortunately. I'm *still* on the steroid suppositories, not going to take myself off of them until I feel fully healed, and it's just like I am getting to the point where I don't know if or when I'll ever be healed. It's getting frustrating. But at least the steroids are keeping me from bleeding tons, I guess that's the silver lining. They're making me gain weight, though, and I wonder if they're contributing to the migraines. I don't know. I see my GI one week from today so I'll ask his opinion then. And I see the colorectal surgeon at the end of this month so hopefully she can help, too. In the meantime, bleh.
Sorry guys, now I can't really internet surf at work, I find I'm quite rubbish at replying or even posting. I could probably login at lunchtime as I seem to read and reply better on a PC, rather than my phone or tablet.
Hope you're all okay. Sorry to hear you're not feeling well, Izzie.
As for me, still frequent toilet breaks with hard stool, despite being on Laxido. Had a bad weekend and broke this low-fodmap rubbish diet. Now I'm suffering. It's 9pm and I'm already in bed because I have a horrible gnawing (kinda like hunger) in my mid-abdomen (Gaviscon didn't help, so can't be indigestion). I just feel so totally drained, ugh. Tried to go gym tonight, but just didn't happen. Hoping to go tomorrow. Can't even be bothered to watch my TV show right now!
Hope you're all okay. Sorry to hear you're not feeling well, Izzie.
As for me, still frequent toilet breaks with hard stool, despite being on Laxido. Had a bad weekend and broke this low-fodmap rubbish diet. Now I'm suffering. It's 9pm and I'm already in bed because I have a horrible gnawing (kinda like hunger) in my mid-abdomen (Gaviscon didn't help, so can't be indigestion). I just feel so totally drained, ugh. Tried to go gym tonight, but just didn't happen. Hoping to go tomorrow. Can't even be bothered to watch my TV show right now!
Just got back from seeing my GI -- if I hadn't been seeing him today, I would have been going somewhere, likely the ED. The D and pain is just awful He thinks it's diverticulitis again. Instead of radiating me again (I've had, like, 5 CT scans in 2 years) he went ahead and just wrote the Rx for Flagyl and Cipro for 10 days, with instructions for me to call him back if I don't get better soon, and I see him again in just 2.5 weeks anyway.
I hope this works. I hope I don't get CDiff again.
He also said if this keeps going on, he would consider referring me for surgical evaluation, to get rid of the diverticulum.
He thinks it's diverticulitis again. Instead of radiating me again (I've had, like, 5 CT scans in 2 years) he went ahead and just wrote the Rx for Flagyl and Cipro for 10 days, with instructions for me to call him back if I don't get better soon, and I see him again in just 2.5 weeks anyway. I hope this works. I hope I don't get CDiff again.
He also said if this keeps going on, he would consider referring me for surgical evaluation, to get rid of the diverticulum.
Cat-a-Tonic
Super Moderator
Kelleh, how did the trip to London go? I'm with you on having a rough weekend, although I recovered enough that I was able to go to the gym today. I hope you feel a little better tomorrow! Are you going back on the low-fodmap diet? It sounds like it might have been helping if you're suffering since you came off the diet?
Oh, that's good! Like I said, I have a strong feeling nothing will come of the biopsies (as usual…) but I'm glad he took them.
Some good things…I actually had a decent appetite last night and today! Now it's late afternoon and all the food isn't sitting so well, but I'm hoping this is the beginning of an upward swing…other good thing is I had one BM since my scopes on Friday and it wasn't bloody! Still tons of mucous, but it looks like the blood was from the polyps after all. So, trying to count my blessings there.
Been dealing with low grade fevers and fatigue again and I think my family is finally starting to see that this is a "real" thing. And thank God! My dad almost accused me of an eating disorder the other day. I stopped what I was doing, looked him straight in the eye and said, "I am a grown woman. Do you really think I'm throwing away all this money for testing and prescriptions and appointments because I don't want to eat? I would give anything to have an appetite." Thats not to trivialise eating disorders, of course, but for him to imply that I'm doing this deliberately…it was just the final straw in having to "prove" that I'm sick. Thankfully he shut up after that :wink:
The fiber is rough. I'm back in constipation mode but it doesn't seem to help much in that department. It's hard to get down and doesn't sit well with my tummy at ALL. Makes me even more bloated and "full."
So I'm trying to take it later in the day, that way I can get food in me before dealing with the pain of the Metamucil… Good luck with your appointments Cat. Hope you can get some relief!
Cat-a-Tonic
Super Moderator
Adadzio, Metamucil might not be the best option. It's based on psyllium husks, which are a soluble fiber and pretty easy on most of us, but Metamucil also has a lot of additives that can cause symptoms like cramping. You might want to see if you can find 100% psyllium husks with no additives (you should be able to get them in health food stores or online). That might sit a bit better with you. Also, don't necessarily take the full dose that the packaging says to take. I take psyllium husks myself, and the packaging says to take 2 tablespoons per day. Um, no, that would put me in tons of discomfort! I tried it once and it was horrible, I bloated out like crazy, I think it was the most bloated I had ever been, and I had awful trapped gas pains too. So yeah, I take 1 teaspoon daily as that helps without so much bloat. I mix it in a big glass of water, wait about 10 mins for the psyllium to soak up some of the water, then I drink it. That's been working fairly well for me. It definitely hasn't cured me or anything like that, but it's helped with some of the frequency and consistency issues that I've had.
I'm glad that you stood up to your father. I hope this means that he's starting to get it. I nearly had to cut ties with my father-in-law when I first got sick. My in-laws had the hubby and I over for dinner, and my f-i-l got drunk and started to berate me for being ill. He said that he can't fathom being ill all the time, therefore it isn't really a real thing, therefore I'm faking for attention. He said some really horrible stuff to me, like, if I can't eat regular food then his son (my husband) should and will divorce me. He wouldn't stop saying horrible things even after I started crying. I didn't ever want to see my in-laws again. But, my mother-in-law (who I've never been close with) saved things. I left while still crying, but she stopped me on my way out, gave me a hug, and said I can call her anytime if I need to talk. That was surprising, because at that point they had been my in-laws for something like 7 years and I'd never ever called her just to talk. She apparently also had some stern words with her husband, because ever since then, my father-in-law has been supportive of me. Once my husband was joking around that I can't eat hardly anything, and my father-in-law stopped him and told him to be nice to me, "Because that has got to be really difficult." !!! So, people can actually change and become supportive. And I had no idea, until I became ill, what a good person my mother-in-law really is. There's plenty of bad to be had with being ill, for sure, but it's odd how some relationships get tested by illness and actually come out better than they were before. I hope your father ends up being in that camp, I really do.
I'm glad that you stood up to your father. I hope this means that he's starting to get it. I nearly had to cut ties with my father-in-law when I first got sick. My in-laws had the hubby and I over for dinner, and my f-i-l got drunk and started to berate me for being ill. He said that he can't fathom being ill all the time, therefore it isn't really a real thing, therefore I'm faking for attention. He said some really horrible stuff to me, like, if I can't eat regular food then his son (my husband) should and will divorce me. He wouldn't stop saying horrible things even after I started crying. I didn't ever want to see my in-laws again. But, my mother-in-law (who I've never been close with) saved things. I left while still crying, but she stopped me on my way out, gave me a hug, and said I can call her anytime if I need to talk. That was surprising, because at that point they had been my in-laws for something like 7 years and I'd never ever called her just to talk. She apparently also had some stern words with her husband, because ever since then, my father-in-law has been supportive of me. Once my husband was joking around that I can't eat hardly anything, and my father-in-law stopped him and told him to be nice to me, "Because that has got to be really difficult." !!! So, people can actually change and become supportive. And I had no idea, until I became ill, what a good person my mother-in-law really is. There's plenty of bad to be had with being ill, for sure, but it's odd how some relationships get tested by illness and actually come out better than they were before. I hope your father ends up being in that camp, I really do.
Hi Hope you're all feeling as good as possible. I'm new here but I'm at a bit of a loss as what to do and you guys seems to know more than any of the doctors I've seen.
I'm 21 and I've had vague symptoms (right sided pain, diarrhoea, bloating, bleeding, cramps etc.) for a few years but always got told to take immodium and IBS medication.
Over the summer my symptoms became constant and my stools thinner. After 4 weeks of constant diarrhoea I went to the GP and left with peppermint tablets. I did manage to get a referral to a gastroenterologist but only because of my reflux.
While waiting for the gastro appointment I got a kidney infection and whilst at my GP he noticed I flinched when he pressed on my lower right abdomen. I told him I get pain there a lot but he was worried about my appendix and sent me to the surgical assessment unit. After 5 hours the surgeons saw me and were more worried about my diarrhoea, bleeding and weight loss and didn’t think the pain was related to my appendix. They told me they’d expedite my gastro appointment and to see my GP once the kidney infection cleared up.
GP sent me for bloods. High inflammation markers and low serum albumin. Sent me to have them repeated. Slightly lower but still high.
Finally got my gastro appointment for 4th Nov (2 days before my birthday yay). By this point I’d lost 6kg in a couple of months and was underweight with no appetite. I’d also passed what looked like chunks of my gut (apparently that can happen according to my GP when there’s a lot of inflammation) which really freaked me out. Doctor said he needed to investigate IBD, specifically Crohn’s. Ordered sigmoidoscopy and small bowel MRI.
Sigmoidoscopy 30th Nov. Had been a bit better leading up and hadn’t had bleeding for a couple of weeks. Really painful experience and they couldn’t get round the loops of my gut. Consultant took over and complained I had a very loopy gut. Said it looked fine and it was IBS. No cause of the bleeding found.
MRI 14th Dec. Had been much better for a few weeks. No bleeding, little pain only going to toilet 2-3 times a day. Bad reaction to contrast and had asthma attack. Said I'd get results in 2-3 weeks (turned out to be over 6)
30th Dec granddad got admitted to a&e so went to visit him despite being feeling awful. Had struggled to pass anything apart from small amount of diarrhoea and gas for a couple of days which was really unusual. Spent hours in the loo. Stopped passing anything at all. Would’ve got myself admitted to a&e if it hadn’t been Stafford Hospital because I could hardly move with the pain. My mom had to drive me home and wanted me to go to a&e. All of a sudden I needed to loo and there was nothing I could do. Hurt like hell and very bloody but I felt a lot better.
31st – saw GP who tried to tell me I had been constipated. Pointed out I went to the toilet 3-16 times a day and he said it sounded like an obstruction. Left with codeine and a letter to the gastro asking him to see me that week.
Heard nothing for another month until today. A letter saying the scan was fine and I had IBS. Told me he’d see me in a couple of months.
Sorry for the long post but I'm at a complete loss as to what to do. I'm really struggling to go to uni at all and if I do I just sleep when I get home. I'm supposed to graduate this year and trying to do my dissertation on top of coursework, exams and a part time job. I've already been refused extenuating circumstances and pretty much moved back home with my mom. I haven't even bothered telling the doctors about the exhaustion, joint pain, mouth ulcers and sore tongue etc. because they already treat me like a hypochondriac...I just want to scream until someone takes me seriously
Hope you're all feeling as good as possible. I'm new here but I'm at a bit of a loss as what to do and you guys seems to know more than any of the doctors I've seen.I'm 21 and I've had vague symptoms (right sided pain, diarrhoea, bloating, bleeding, cramps etc.) for a few years but always got told to take immodium and IBS medication.
Over the summer my symptoms became constant and my stools thinner. After 4 weeks of constant diarrhoea I went to the GP and left with peppermint tablets. I did manage to get a referral to a gastroenterologist but only because of my reflux.
While waiting for the gastro appointment I got a kidney infection and whilst at my GP he noticed I flinched when he pressed on my lower right abdomen. I told him I get pain there a lot but he was worried about my appendix and sent me to the surgical assessment unit. After 5 hours the surgeons saw me and were more worried about my diarrhoea, bleeding and weight loss and didn’t think the pain was related to my appendix. They told me they’d expedite my gastro appointment and to see my GP once the kidney infection cleared up.
GP sent me for bloods. High inflammation markers and low serum albumin. Sent me to have them repeated. Slightly lower but still high.
Finally got my gastro appointment for 4th Nov (2 days before my birthday yay). By this point I’d lost 6kg in a couple of months and was underweight with no appetite. I’d also passed what looked like chunks of my gut (apparently that can happen according to my GP when there’s a lot of inflammation) which really freaked me out. Doctor said he needed to investigate IBD, specifically Crohn’s. Ordered sigmoidoscopy and small bowel MRI.
Sigmoidoscopy 30th Nov. Had been a bit better leading up and hadn’t had bleeding for a couple of weeks. Really painful experience and they couldn’t get round the loops of my gut. Consultant took over and complained I had a very loopy gut. Said it looked fine and it was IBS. No cause of the bleeding found.
MRI 14th Dec. Had been much better for a few weeks. No bleeding, little pain only going to toilet 2-3 times a day. Bad reaction to contrast and had asthma attack. Said I'd get results in 2-3 weeks (turned out to be over 6)
30th Dec granddad got admitted to a&e so went to visit him despite being feeling awful. Had struggled to pass anything apart from small amount of diarrhoea and gas for a couple of days which was really unusual. Spent hours in the loo. Stopped passing anything at all. Would’ve got myself admitted to a&e if it hadn’t been Stafford Hospital because I could hardly move with the pain. My mom had to drive me home and wanted me to go to a&e. All of a sudden I needed to loo and there was nothing I could do. Hurt like hell and very bloody but I felt a lot better.
31st – saw GP who tried to tell me I had been constipated. Pointed out I went to the toilet 3-16 times a day and he said it sounded like an obstruction. Left with codeine and a letter to the gastro asking him to see me that week.
Heard nothing for another month until today. A letter saying the scan was fine and I had IBS. Told me he’d see me in a couple of months.
Sorry for the long post but I'm at a complete loss as to what to do. I'm really struggling to go to uni at all and if I do I just sleep when I get home. I'm supposed to graduate this year and trying to do my dissertation on top of coursework, exams and a part time job. I've already been refused extenuating circumstances and pretty much moved back home with my mom. I haven't even bothered telling the doctors about the exhaustion, joint pain, mouth ulcers and sore tongue etc. because they already treat me like a hypochondriac...I just want to scream until someone takes me seriously
Hi everyone. So my colonoscopy is tomorrow. I take a laxative in an hour and then miralax and Gatorade an hour after that. Then more miralax and Gatorade in the morning. Not looking forward to any of it. Still having d and cramping. Also have had a low grade fever off and on the last few days. I'm not too optimistic they will find anything tomorrow after reading all the posts. But I can hope right? I just want some kind of answer. :/
Hope the best for you.
ello my name is Dylan and I have been in a lot of pain for about 5 months now. I've always had stomach problems, I had part my colon removed when I was born and had a colostomy bag for 1 year. But recently I've had horrible pain around my pelvis area that leads to my sides and back. It's very intense and doesn't go away, I can hardly move sometimes. I also have severe fatigue, anxiety, mucus in stool. Constipation, bloating, gas, burning sensation, shortness of breathe, testical pain, chest pains, and canker sores. I'm sure there is symptoms I'm missing. But it's been so bad that I can't enjoy my family or just life at all. I took an awesome job and moved 5 hours away to work at a Toyota plant that pays great. I had it made intil this crap hit me. Most days are so bad that I can get outta the bed. Doctor are to lazy to help you where I live. It's gonna make me lose my job. My job requires a lot of lifting and moving in a hot factory! My pain is mostly under my belly button in that area but if any of you have had these symptoms, please give me some direction on what to do. I'm in a hard spot and want my life back. Oh and I had a ct enterography and it showed nothing but nothing else yet been done.
I'm a 22 year old male and always had stomach problems but nothing like this!
I'm a 22 year old male and always had stomach problems but nothing like this!
Hey, it went good thank you! The office was like something that you see on a TV show! I think I stood there with my mouth open for the majority of the time, just taking in my surroundings!
I have been trying to keep up with the LOW-FODMAP, but I am finding it so incredibly boring, and I messed up big time at the weekend, and I have really found myself suffering for it, these last 2 days. Trying to lower myself back into it gently, but it's just so boring! Sick of carrots and spinach - actually feel sick whilst eating them at the moment! I don't mind chicken, but I really need to find something else to eat! I wish they'd conduct the tests on me, because this is just so boring, and I need to stick to it for at least 6 weeks, according to the internet.
Going to try and go to the gym tonight, but we shall see. My blood pressure seems to keep going down. Trying to lose weight is also harder when you have GI problems, because when I get the gnawing/burning/hunger, it's best to just eat or just try and sleep it off. Which isn't so great when it's 13:06 in the afternoon and you're at work!
I wouldn't say it was helping that much, but it did help with the pain a bit, but not the C. They put me on Laxido, and as of today, I've had to increase my dosage (which will probably turn it to D, because the frequency is already there) and also increase my dosage of Amitriptyline to 2 tablets last night. Not going too well, and seems that spicy foods just set it off again, but it also had onion and garlic in (only small amounts), so that could also be the trigger.
I don't think I can face carrots and spinach again tonight. May do some sweet potato and salad instead. I forgot I had salad!
- Location
- Maryland
Hey all! Haven't been on in awhile.
Was supposed to have my colonoscopy/Upper on 1/25 but we got three feet of snow and I had to reschedule! It's now scheduled for 3/14. My symptoms have died down a lot and I haven't had much if any pain lately. I almost didn't reschedule my procedure. I'm pretty sure they will find nothing, but I thought, well, I might as well do this.
Was supposed to have my colonoscopy/Upper on 1/25 but we got three feet of snow and I had to reschedule! It's now scheduled for 3/14. My symptoms have died down a lot and I haven't had much if any pain lately. I almost didn't reschedule my procedure. I'm pretty sure they will find nothing, but I thought, well, I might as well do this.
That's a long time to wait! Good luck to you thought. Are you having a full colonoscopy? It's better to have it done rather than not and continue in pain at a later date. It's good to at least rule something out. Just make sure they take biopsies!
Saw my nephrologist yesterday. My protein loss has stabalised a little more. My liver functions are still in the red but only just (mild to moderate auto immune hepatitis) He was not happy with my blood pressure and has asked me to go off nsaids completely for a while. BP today was 128/68. He is happy with my cholesterol , I haven't been under 9 for thirty years. I found a product based on plant sterols and my cholesterol has dropped over the last three months and is now 6.9. He has not suggested anything for D as he wants me to get off targin before we worry about that . I am over half way thru the taper to get off it.(oxycodone) he did say that without targin and nsaids I will probably be in a lot more pain . He said he thinks that this is about as good as it is going to get for me. Ron.
Ron50, look at it in a positive light! At least you're not getting worse! Stabilising and your GP being happy with your cholesterol! Fingers crossed for you though that the pain doesn't come back with a vengeance without the NSAIDs. We're here if you want to vent!
- Location
- Maryland
I know I'm having a colonoscopy. Not sure what a "full" one means?
They are also doing the upper part too.
It was me who elected to have it in March, instead of sooner. I have too many things this month on the weekends and can't dedicate a sunday to sitting on the toilet all day. I haven't been in nearly as much pain so I figure it won't hurt to push it back. In fact, I'm still paying for my CT scan which was completely normal. :yrolleyes:
- Location
- Maryland
another thing I thought of... I see an Endocrinologist for my thyroid stuff. They've taken my B12 several times over the past year. My B12 number keeps dropping. They did do the MMA test for Pernicious Anemia, but my result was normal. Still, my number drops. Could this be from a bowel issue?
April 2015 - 689
November 2015- 638
January 2016- 620
I know they are still in "normal" range, but it does worry me a little that the number continues to drop!
April 2015 - 689
November 2015- 638
January 2016- 620
I know they are still in "normal" range, but it does worry me a little that the number continues to drop!
alice - welcome; I'm sorry for all you've been through, and hope you get some answers and relief soon!
angela - how'd the colonoscopy go?
Dylan - welcome; Wow, you've really been through quite a lot! Sorry I don't have much in real advice, my symptoms run more towards diarrhea. But keep looking for a new doctor, is the best I can suggest!
Ron50 - that actually sounds like things are headed in the right direction. Have you ever tried mindfulness for pain? I'm working with it for my belly issues, and it's surprisingly effective. The pain is still there, but dealing with it that way makes it bearable.
PaintedElephant - glad you're feeling better, and also glad you'll get the scopes anyway - might as well, as you said. I figure you never know when issues will flare again. As far the B12, I personally wouldn't be too concerned. Mine has been much lower, in the 200s (barely in range) and then with oral supplementation I got it up to the 400s, but that's as high it's been in 2 years. Of course I do still have some fatigue, etc, but it's hard to tease out what causes what. I just know that I must be able to process it in my gut if my levels were able to rise with oral pills, and I'd assume your levels would be even lower if you weren't getting enough from diet alone.
angela - how'd the colonoscopy go?
Dylan - welcome; Wow, you've really been through quite a lot! Sorry I don't have much in real advice, my symptoms run more towards diarrhea. But keep looking for a new doctor, is the best I can suggest!
Ron50 - that actually sounds like things are headed in the right direction. Have you ever tried mindfulness for pain? I'm working with it for my belly issues, and it's surprisingly effective. The pain is still there, but dealing with it that way makes it bearable.
PaintedElephant - glad you're feeling better, and also glad you'll get the scopes anyway - might as well, as you said. I figure you never know when issues will flare again. As far the B12, I personally wouldn't be too concerned. Mine has been much lower, in the 200s (barely in range) and then with oral supplementation I got it up to the 400s, but that's as high it's been in 2 years. Of course I do still have some fatigue, etc, but it's hard to tease out what causes what. I just know that I must be able to process it in my gut if my levels were able to rise with oral pills, and I'd assume your levels would be even lower if you weren't getting enough from diet alone.
So the colonoscopy didn't turn up much. He did find two polyps which he is going to biopsy but other than that my colon looked great. He did say it was weird to find polyps in someone my age (32). But otherwise he is treating me for IBS. He prescribed something starts with hy but can't remember the name. I haven't picked it up yet. I'm kinda let down. I was hoping there would be an answer. But not surprised. :/
Also called Levsin. Wish you the best.
When I say full, I mean it looks around the whole of the colon. Sigmoidoscopy is the other one which just looks at the first part of your colon, so it doesn't go round to your right side! Sorry, I should have been a little more clear.
As for your levels dropping, they are still normal, but unfortunately, they're probably not dropping enough for the doctors to care. They did exactly the same with me with my RBC decreasing and my WBC increasing. Just stay strong. Keep having those blood tests every so often and they'll eventually notice a pattern. Unfortunately, a lot of GP's don't do anything until it's at a very low level. They seem to be dropping quite steadily in your case.
@angela1435 - I think the one beginning with hy is the main ingredient in Buscopan! I know which one you are on about! It did diddly-squat for me, but hopefully it may ease some of the spasms you have.
Angela be very happy that he found those polyps now. I hope for your sake that they show no signs of displaysia. A polyp is what caused my colon cancer. They don't all become cancer but I am glad that they are being biopsied. Usually if polyps are found you may have to have another scope in three years. I have had ten colonoscopies since colon cancer in 98 .At least half of them have produced new polyps. One year I had two that were only two mm and they showed signs of dysplasia which whilst not cancer are regarded as pre cancerous changes. All the best Ron.
- Location
- Maryland
Thanks for explaining Kelleh! I am glad they are doing the FULL one. I'm starting to wonder if it's actually my stomach vs. my intestines but I just don't know. I get so nauseous after I eat, and with certain things its much worse. I've stopped eating brussel sprouts because that seemed to be the worst offender. A lot of times I feel like when I have an empty stomach is when I feel the best. Odd.
Cat-a-Tonic
Super Moderator
Hi all! I've been so busy with work, I haven't had time to check in here properly. Greetings to the new members and hi to everybody. Sorry for being away for a bit!
PaintedElephant, I'm actually eating Brussels sprouts right now! It's odd what is a trigger for some is fine for others. I can have Brussels sprouts every day as long as they're cooked. But coconut is my #1 trigger food, even a tiny bit of it will make me feel horrible for days.
I've been doing surprisingly well this week. I've been to the gym every day and I'm eating better. I think I stumbled onto something odd that's been helping. A few nights ago, the hubby and I decided to try something new for dinner, so he made frog legs. Let's just say they were disgusting. So I picked at them and barely ate anything that evening. I went to bed starving, but I had a decent evening guts-wise and when I woke up - I felt significantly better than I usually do when I wake up. So I tried eating a small dinner again last night, and sure enough, my guts seem to be responding well to that. It's a bit difficult, particularly with being on steroids (they make me HUNGRY) but it seems to be paying off. A bit of nagging hunger in the evenings means I'm having better evenings AND mornings, which is awesome. So I'm sort of stuffing myself at lunchtime lately to make up for having small evening meals, but even that isn't negatively affecting my guts. Last thing at night and first thing in the morning have always been the worst times for me guts-wise, so I think this is the answer for how to avoid those particularly bad times. Now I just need to keep it up and not give in to hunger/temptation in the evenings! Might be easier said than done...
(For the record, it's currently lunchtime for me - I take a late lunch after I hit the gym - and I'm stuffing my face. Salmon, couscous, Brussels sprouts AND Kimchi! I'm going to have a small amount of lamb for dinner - if I'm eating small evening meals, I know they should be high-quality and high-protein, and lamb always sits really well with me. Yum!)
Kelleh, did you ever find out, how was your friend's trip to Japan? Less than 2 months to go until my trip! I'm so excited!
PaintedElephant, I'm actually eating Brussels sprouts right now!
It's odd what is a trigger for some is fine for others. I can have Brussels sprouts every day as long as they're cooked. But coconut is my #1 trigger food, even a tiny bit of it will make me feel horrible for days.I've been doing surprisingly well this week. I've been to the gym every day and I'm eating better. I think I stumbled onto something odd that's been helping. A few nights ago, the hubby and I decided to try something new for dinner, so he made frog legs. Let's just say they were disgusting.
So I picked at them and barely ate anything that evening. I went to bed starving, but I had a decent evening guts-wise and when I woke up - I felt significantly better than I usually do when I wake up. So I tried eating a small dinner again last night, and sure enough, my guts seem to be responding well to that. It's a bit difficult, particularly with being on steroids (they make me HUNGRY) but it seems to be paying off. A bit of nagging hunger in the evenings means I'm having better evenings AND mornings, which is awesome. So I'm sort of stuffing myself at lunchtime lately to make up for having small evening meals, but even that isn't negatively affecting my guts. Last thing at night and first thing in the morning have always been the worst times for me guts-wise, so I think this is the answer for how to avoid those particularly bad times. Now I just need to keep it up and not give in to hunger/temptation in the evenings! Might be easier said than done...(For the record, it's currently lunchtime for me - I take a late lunch after I hit the gym - and I'm stuffing my face. Salmon, couscous, Brussels sprouts AND Kimchi! I'm going to have a small amount of lamb for dinner - if I'm eating small evening meals, I know they should be high-quality and high-protein, and lamb always sits really well with me. Yum!)
Kelleh, did you ever find out, how was your friend's trip to Japan? Less than 2 months to go until my trip! I'm so excited!
Cat, I'm seeing him tomorrow!! I will find out everything I can for you. We're going to dinner, so I'm sure he'll have time to tell me! I'll let you know as soon as I can all about it! Glad to hear you're doing well though.
I've been doing well for a few months now on the whole...however today and yesterday i was getting cramps on my left side and today have been to the loo a few times...no diarrhea as such but a lot of gas and they're quite loose.
It scares me so much because of how ill i was for all those months a while back so I am worrying that this is it returning but the likelihood is that I have been eating Alpen for breakfast and i know it doesnt agree with me. Can something you eat that doesnt sit well cause symptoms that last a few days?...UHHHHHH
It scares me so much because of how ill i was for all those months a while back so I am worrying that this is it returning but the likelihood is that I have been eating Alpen for breakfast and i know it doesnt agree with me. Can something you eat that doesnt sit well cause symptoms that last a few days?...UHHHHHH
Cat-a-Tonic
Super Moderator
Megan, yes, I think I mentioned in my previous post that coconut is my #1 trigger food. If I have coconut, it can make me ill anywhere from 1 to 4 days! Last time I had coconut, it was at Thanksgiving a couple years ago. The holiday itself is always on a Thursday, and I always get off of work on that Friday as well, so it's a 4-day weekend. I went to my aunt's house for Thanksgiving, she's gluten-free so she thickened the gravy with coconut flour instead of wheat flour. I didn't think to ask what was in the gravy - I thought I had taken all tummy-safe foods, but I started feeling ill while I was still eating. Like, I was sweating and shaking and nauseous and needed the bathroom and I felt myself go pale, it was quite bad. It hit me fast, too. I looked at my plate and thought, what could the culprit be? Everything is safe! Turkey, mashed potatoes, gravy... oh no, what's in the gravy? It sure feels like coconut! So yeah, it was coconut, and I was ill the entire 4-day weekend. I only started feeling better when it was time to go back to work on Monday. Ugh! Long story short, YES, for me at least certain foods can cause symptoms that last many days, even if I only eat a small amount of it.
You guys (especially you Cat) are always such a source of reassurance and help, thank you
Well crap (pun intended). I'm having more D - like, more than 6 a day. So I guess it's either from antibiotics ("normal" antibiotic D) or C Diff. BUT, my LRQ pain is resolving! I wish I could tell what was causing it. I know C Diff is supposed to have that awful smell, but the first time around mine never did (the nurses in the hospital last time even commented on that - they would come in prepared, then go "oh!" and I'd giggle, and say "yeah, I know, I've heard it" and they'd make some comment on how I was the only C Diff room that didn't stink, one even thought I was "cured" long before I was well). Eck. I don't know what to do. I guess a call to the GI is in order, but I almost hate to. I don't really want to stop meds that are helping the LRQ pain (does that even make sense?). But I don't want to have C Diff, either. Last time I was in the hospital for 3 days! No fever right now - which is making me think it isn't C Diff (last time I hit 103).
Sorry for the rambling. I just really don't know what to think about my symptoms, or what to do. I'm taking 2 different probiotics (VSL#3 and Florastor) in between 2 different antibiotics (flagyl and cipro), and one of the antibiotics (flagyl) is used to TREAT C Diff for crying out loud!!
Sorry for the rambling. I just really don't know what to think about my symptoms, or what to do. I'm taking 2 different probiotics (VSL#3 and Florastor) in between 2 different antibiotics (flagyl and cipro), and one of the antibiotics (flagyl) is used to TREAT C Diff for crying out loud!!
- Location
- Maryland
Cat- Interesting about the coconut! I do eat a lot of coconut stuff, so that's something to think about!
The past few days have been weird. I've had this weird "urgent" need to go to the bathroom and everything is very "soft" which is not the norm for me. Usually I'm very constipated and such. The LLQ pain was back a little yesterday. Still baffled by the nausea. Even my GI said that no one should have nausea for no reason. I don't feel nauseous until I eat... it's so odd.
The past few days have been weird. I've had this weird "urgent" need to go to the bathroom and everything is very "soft" which is not the norm for me. Usually I'm very constipated and such. The LLQ pain was back a little yesterday. Still baffled by the nausea. Even my GI said that no one should have nausea for no reason. I don't feel nauseous until I eat... it's so odd.
Update: called GI. Nurse is getting in touch with him as we speak and will call back shortly. She thinks he'll just want to run stool samples and have me stop the antibiotics, but of course that's all up to him.
Best to you.
Cat-a-Tonic
Super Moderator
Wildmtn, I hope you get some answers soon! This awfulness has been going on for too long. And you're right, Flagyl and Cipro should be making things better, not worse. I haven't been on Flagyl, but I've been on Cipro and I noticed a bit of an improvement in my guts when I was on it. It's insane that they haven't been able to figure out what's causing these acute symptoms. Any chance you could get scoped like soon-ish while things are still bad? Because it sounds like stool tests and bloodwork just isn't getting you the answers you need.
How's everybody else today? I'm feeling odd today but not bad. I'm just feeling, like, energetic? It's an odd feeling because usually I am not energetic! Last night's dinner was once again disgusting - it was lamb, which I usually love, but hubby bought some weird cuts of lamb meat or something. There was more fat than there was meat, and I hate big chunks of fat in my food! Just so gross. So once again, I barely ate anything for dinner, and I feel good today even though I woke up starving. It's so odd that this is working for me! I guess I just need to keep picking at my dinners because clearly my body is responding well to that for some odd reason.
I'm hoping this barely eating dinner thing helps me lose a few lbs as well because I have about 10 lbs I need to lose thanks to the steroids. My scale keeps trolling me, too. I've been at exactly 145 lbs for a little while now. When I step on my scale in the morning, it's digital and it takes a few seconds to calibrate or whatever. So it's like: "You might have lost a half a lb. 144.4 lbs... 144.5 lbs.... just kidding, you're still at 145 lbs! You didn't lose any weight!" It's seriously done that to me every day this week, it starts off at about half a lb lighter and gets my hopes up and then dashes them. Ugh.
How's everybody else today? I'm feeling odd today but not bad. I'm just feeling, like, energetic? It's an odd feeling because usually I am not energetic!
Last night's dinner was once again disgusting - it was lamb, which I usually love, but hubby bought some weird cuts of lamb meat or something. There was more fat than there was meat, and I hate big chunks of fat in my food! Just so gross. So once again, I barely ate anything for dinner, and I feel good today even though I woke up starving. It's so odd that this is working for me! I guess I just need to keep picking at my dinners because clearly my body is responding well to that for some odd reason.I'm hoping this barely eating dinner thing helps me lose a few lbs as well because I have about 10 lbs I need to lose thanks to the steroids. My scale keeps trolling me, too. I've been at exactly 145 lbs for a little while now. When I step on my scale in the morning, it's digital and it takes a few seconds to calibrate or whatever. So it's like: "You might have lost a half a lb. 144.4 lbs... 144.5 lbs.... just kidding, you're still at 145 lbs! You didn't lose any weight!" It's seriously done that to me every day this week, it starts off at about half a lb lighter and gets my hopes up and then dashes them. Ugh.
Wish I had any words of advice for all of you but alas all I can offer is support. I hope everyone's alright!
I'm still having a lot of reflux issues, but at least I can go to work and classes without too much trouble. Getting a belching episode in the middle of class isn't fun, though.
Cat, I too feel much better when I hardly eat anything. Though in the long run that's hardly a solution.
I'm still having a lot of reflux issues, but at least I can go to work and classes without too much trouble. Getting a belching episode in the middle of class isn't fun, though.
Cat, I too feel much better when I hardly eat anything. Though in the long run that's hardly a solution.
Sometimes I feel food is my enemy
Cat-a-Tonic
Super Moderator
Izzie, the weird thing is, it's only the evening meal that I've been eating less of. I still eat a lot during the day, but in the evenings I've been cutting back on how much I eat. I stuffed myself with food yesterday at lunch, so you'd think that would make me feel worse? But no, for some reason, my guts are worst at late night and early mornings, so I guess having a relatively empty stomach/digestive tract during those times is what's been helping. So it's not that I'm barely eating, I'm still definitely eating a fair bit, but it's just that I'm not eating so much at dinnertime. Weird but I'm going with it!
I've actually considered just not eating dinner anymore and replacing it with a shake or something, just because my symptoms are soooo much worse at night/after late meals.
I'm so sick of this flare up. I had gotten to a point where my reflux was a minor inconvenience and now I'm waking up every morning with a sore throat and walk around with that gross burning sensation all day. Ugh. Here's hoping it settles down again soon.
By the way I saw my new GP about all these issues yesterday. She was very helpful. Was appalled that I haven't seen a GI here yet and that I seem to have fallen through the cracks, so to speak. Also got referred to a gynecologist and had bloodwork done. Haven't gotten the results yet but if I still have low iron I'm going to get infusions probably. So I'm going to talk to the GI department of the university hospital tomorrow morning hopefully and set up an appointment.
I never ended up getting shots because my levels had gone up enough that it was no longer emergent. Not sure about now though. I'm still pretty dizzy and pale.
I'm so sick of this flare up. I had gotten to a point where my reflux was a minor inconvenience and now I'm waking up every morning with a sore throat and walk around with that gross burning sensation all day. Ugh. Here's hoping it settles down again soon.
By the way I saw my new GP about all these issues yesterday. She was very helpful. Was appalled that I haven't seen a GI here yet and that I seem to have fallen through the cracks, so to speak. Also got referred to a gynecologist and had bloodwork done. Haven't gotten the results yet but if I still have low iron I'm going to get infusions probably. So I'm going to talk to the GI department of the university hospital tomorrow morning hopefully and set up an appointment.
I never ended up getting shots because my levels had gone up enough that it was no longer emergent. Not sure about now though. I'm still pretty dizzy and pale.
Cat-a-Tonic
Super Moderator
Izzie, sounds like a good GP! I hope you can get the iron infusions, it sounds to me like you need them. If you can't get the infusions for some reason, do look into liquid iron - it's been doing good things for me. At first my stomach hated it, but I seem to have adapted quickly. I'm up to taking a full teaspoon every day and my stomach is just fine with that. Maybe that's where my increased energy has come from? It is nice being able to take an iron supplement without my body punishing me for it!
I wish I had answers for you about your GERD. Mine has been pretty quiet for awhile but I don't know exactly why that is. I hope it calms down soon. Hopefully, once you see a good GI, you'll be given some better treatment options. Or maybe even that surgery that you talked about, with the bracelet thing.
I wish I had answers for you about your GERD. Mine has been pretty quiet for awhile but I don't know exactly why that is. I hope it calms down soon. Hopefully, once you see a good GI, you'll be given some better treatment options. Or maybe even that surgery that you talked about, with the bracelet thing.
Yeah I want answers. My GP mentioned the possibility of me having to do another gastroscopy and I'm just like UGH I don't want to.
Each time I've done it it's like... I get through it, and I honestly don't remember with any kind of clarity what it's like I just know that it's the worst. It's like my body remembers it like this icky horrible trauma while my mind is like "not a big deal". So I'm hoping I don't have to. But we'll see.
Each time I've done it it's like... I get through it, and I honestly don't remember with any kind of clarity what it's like I just know that it's the worst. It's like my body remembers it like this icky horrible trauma while my mind is like "not a big deal". So I'm hoping I don't have to. But we'll see.
Hope you don't
- Location
- Maryland
Does anyone have experience with SIBO? I think this may be what I'm dealing with. I've been getting bloated and nauseous after eating, and it's gotten to the point where I don't even want to eat anymore. Last night after eating dinner, my stomach was so bloated/distended that I literally looked like I was 7 months pregnant. I ate a sweet potato with ground turkey and spinach. It was awful, and I didn't eat anything else all night because of how bloated I was.
I emailed my GI today to ask for the Breath Test for SIBO. I'm not sure if this is something I can just "ask" for, but I'm going to try. I've been working with my endocrinologist who told me she does not believe my issues are thyroid related. If it is SIBO, then I need medical "diagnosis" to encourage me to stick to the diet. Paleo is hard enough for me, SCD seems even harder, but I will do it if I have too.
I emailed my GI today to ask for the Breath Test for SIBO. I'm not sure if this is something I can just "ask" for, but I'm going to try. I've been working with my endocrinologist who told me she does not believe my issues are thyroid related. If it is SIBO, then I need medical "diagnosis" to encourage me to stick to the diet. Paleo is hard enough for me, SCD seems even harder, but I will do it if I have too.
- Location
- Maryland
oh yeah, I'm also sure I have a hemorrhoid too! Never had one in my life (that I know of) so this has been a joy.. :-/
Painted Elephant -- SIBO was suggested for me. I never did have a breath test, but was put on Xifaxan as a trial anyway. My GI honestly thinks the breath tests (there are two, one uses lactose, the other glucose) can give false results and he doesn't trust them. He goes off of clinical symptoms, and some of mine seemed to fit, so he basically said "we can try, if it works, great! If it doesn't, we move on." On the up side, I *did* feel better while on Xifaxan. Had normal stools, less pain, etc. But shortly after coming off of it, things started to get bad again, and now here I am, waiting for a call back and afraid I may have C Diff from two different antibiotics (but my issue may have been "simmering" diverticulitis all along?). I had also trialed a low FODMAP diet for a full month, and that really didn't help. I wasn't up for the SCD diet, and Xifaxan exists...so that's where we went.
- Location
- Maryland
Interesting!!! I guess I wouldn't mind jumping to that route, but at the same time I really don't like the antibiotics unless they are necessary ( which I see they usually are with SIBO). I did one Whole100 and just finished a Whole60 and still had issues, but if it's the type of food I'm eating, that could still be a concern. I'll see what he says. I figure it can't hurt to explore this route while waiting for my scopes.
I think that makes sense. Some people with SIBO have a great response to just the low FODMAP diet, and that is much less restrictive (though weirder in food options, imo) than SCD, if you wanted to start somewhere.
Cat-a-Tonic
Super Moderator
PaintedElephant, I have no experience with SIBO testing, so I can't comment on that. But I feel for you on the hemorrhoid! Your first one, poor thing. I remember, I named my first hemmie. I named it Herbie, because it felt like it was about the size of a Volkswagen. Hah! I've had about ten zillion hemmies since then, some of which bleed like crazy (the internal ones) and have given me nothing but trouble over the past year especially, so I really hope that for you, it's just one and done and you don't get any more.
Oh, and since we're in the US, we don't have very good options for hemmie creams, unfortunately. Tucks used to be my go-to hemmie cream, but they stopped making it (I literally cried when I found that out). Now all I can seem to find in stores is Prep H, which frankly sucks. Prep H does nothing for my hemmies, absolutely nothing. There are a few things you can try, though. For me, I have ordered Anusol which is a hemmie cream made in the UK - it takes a few weeks to get here, but I find it's about as good as Tucks was in terms of shrinking and healing the hemmie. You could also try the vitamin E hemmie treatment. It's messy, though. What you do is, get a bottle of vitamin E gel capsules, but don't take them orally. Take a pin and poke a hole in one of the capsules, and squeeze the contents directly onto your hemmie. Do that at least once per day, more if you end up wiping the gel off if you're using the bathroom a lot. That's worked okay for me in the past. You will want to wear a pad, though - the gel inside the capsule is pretty greasy and will ruin your underwear and/or pants if you're not wearing a pad to shield your clothes from the gel (I speak from experience, I ruined a nice pair of pants myself doing the vitamin E hemmie treatment). Another thing to try is a sitz bath, with epsom salts. Although frankly I haven't had a lot of luck with those doing anything for me. The main thing is, keep the hemmie area clean and dry, try not to wipe too much or you'll irritate it even more, and try not to strain when you're using the bathroom, oh and don't sit on the toilet too long either as that puts pressure on the hemmie area and can make it worse. I hope that helps. And I hope the darn thing goes away soon!
I named it Herbie, because it felt like it was about the size of a Volkswagen. Hah! I've had about ten zillion hemmies since then, some of which bleed like crazy (the internal ones) and have given me nothing but trouble over the past year especially, so I really hope that for you, it's just one and done and you don't get any more.Oh, and since we're in the US, we don't have very good options for hemmie creams, unfortunately. Tucks used to be my go-to hemmie cream, but they stopped making it (I literally cried when I found that out). Now all I can seem to find in stores is Prep H, which frankly sucks. Prep H does nothing for my hemmies, absolutely nothing. There are a few things you can try, though. For me, I have ordered Anusol which is a hemmie cream made in the UK - it takes a few weeks to get here, but I find it's about as good as Tucks was in terms of shrinking and healing the hemmie. You could also try the vitamin E hemmie treatment. It's messy, though. What you do is, get a bottle of vitamin E gel capsules, but don't take them orally. Take a pin and poke a hole in one of the capsules, and squeeze the contents directly onto your hemmie. Do that at least once per day, more if you end up wiping the gel off if you're using the bathroom a lot. That's worked okay for me in the past. You will want to wear a pad, though - the gel inside the capsule is pretty greasy and will ruin your underwear and/or pants if you're not wearing a pad to shield your clothes from the gel (I speak from experience, I ruined a nice pair of pants myself doing the vitamin E hemmie treatment). Another thing to try is a sitz bath, with epsom salts. Although frankly I haven't had a lot of luck with those doing anything for me. The main thing is, keep the hemmie area clean and dry, try not to wipe too much or you'll irritate it even more, and try not to strain when you're using the bathroom, oh and don't sit on the toilet too long either as that puts pressure on the hemmie area and can make it worse. I hope that helps. And I hope the darn thing goes away soon!
- Location
- Maryland
Maybe I should try this... I'll have to look into it some more.
- Location
- Maryland
Thanks Cat! that helps! I'd been having a lot of feeling of "irritation" down there, and decided to take a look last night. It appears that something is "peaking out" so that is all I can imagine it to be.PaintedElephant, I have no experience with SIBO testing, so I can't comment on that. But I feel for you on the hemorrhoid! Your first one, poor thing. I remember, I named my first hemmie.
Oh, and since we're in the US, we don't have very good options for hemmie creams, unfortunately. Tucks used to be my go-to hemmie cream, but they stopped making it (I literally cried when I found that out). Now all I can seem to find in stores is Prep H, which frankly sucks. Prep H does nothing for my hemmies, absolutely nothing. There are a few things you can try, though. For me, I have ordered Anusol which is a hemmie cream made in the UK - it takes a few weeks to get here, but I find it's about as good as Tucks was in terms of shrinking and healing the hemmie. You could also try the vitamin E hemmie treatment. It's messy, though. What you do is, get a bottle of vitamin E gel capsules, but don't take them orally. Take a pin and poke a hole in one of the capsules, and squeeze the contents directly onto your hemmie. Do that at least once per day, more if you end up wiping the gel off if you're using the bathroom a lot. That's worked okay for me in the past. You will want to wear a pad, though - the gel inside the capsule is pretty greasy and will ruin your underwear and/or pants if you're not wearing a pad to shield your clothes from the gel (I speak from experience, I ruined a nice pair of pants myself doing the vitamin E hemmie treatment). Another thing to try is a sitz bath, with epsom salts. Although frankly I haven't had a lot of luck with those doing anything for me. The main thing is, keep the hemmie area clean and dry, try not to wipe too much or you'll irritate it even more, and try not to strain when you're using the bathroom, oh and don't sit on the toilet too long either as that puts pressure on the hemmie area and can make it worse. I hope that helps. And I hope the darn thing goes away soon!
- Location
- Maryland
Well, GI agreed to breath test! Next Friday at 8am.
I hope it gives some answers!
Cat-a-Tonic
Super Moderator
Good luck, PaintedElephant! Let us know how it goes. And if it were me, I'd hold off on starting any new diet until after the test - you don't want the results to be skewed because of a sudden, drastic diet change (I'm not even sure if it could change the results so quickly, but better safe than sorry).
finally heard from GI -- I'll have to do another stool sample for CDiff. But, my daughter has a dr appt first - I think she's having a migraine, poor thing (I suffer with them, too). Then I have to go get license plates for the car before the temporary ones expire (today! the car is from my mom, for my teen son to learn to drive, he knows he's super lucky!). THEN, if there is still time, we'll see if I can run a stool sample to the lab before 5pm. Otherwise, the lab is open tomorrow, too. I may just wait until then.
Hope everyone else is having a calmer Friday than I am!!
Hope everyone else is having a calmer Friday than I am!!
- Location
- Maryland
thanks cat! I'm pretty much paleo, but I won't make it any more "severe"! LOL
- Location
- Maryland
Do any of you have to deal with negative family members and all this stuff? My mom has her own slew of problems (we both have hashimoto's) but she refuses to do any work in trying to feel better. She wont take meds for Fibro, she won't exercise or eat right, she just complains all the time how much pain she is.
however, any time I have an issue, she refuses to acknowledge it. She told me not to waste my time with any scopes, and thinks that SIBO is a load of garbage. She's so negative. I'm convinced something is wrong, and I just haven't found it yet, and I'm obviously not listening to her and getting my tests done. I just get so sick of her negativity. I've obviously decided that I can no longer tell her anything going on medically with me, because she thinks I just want to do a bunch of tests on myself.
It's just so annoying.
however, any time I have an issue, she refuses to acknowledge it. She told me not to waste my time with any scopes, and thinks that SIBO is a load of garbage. She's so negative. I'm convinced something is wrong, and I just haven't found it yet, and I'm obviously not listening to her and getting my tests done. I just get so sick of her negativity. I've obviously decided that I can no longer tell her anything going on medically with me, because she thinks I just want to do a bunch of tests on myself.
It's just so annoying.
Cat-a-Tonic
Super Moderator
PaintedElephant, my mother is sort of the opposite - when I got sick, she invented an illness for herself as well. When I first got sick, the doctor said it could be something like Crohn's or Celiac disease, so I relayed that information to my mom. She then talked to some weird distant cousin or something, and the cousin apparently has celiac. My mother became convinced that, because there is celiac in one branch of the family tree, that I must have it and also that she must have given it to me, so she has it too. So she started telling everyone that she's got celiac and she went gluten-free and all that. She never had any symptoms at all, by the way. She got my cousin and aunt to go along with her on the gluten-free bandwagon as well. She was extremely vocal about it with zero evidence, she never saw a doctor nor was tested for celiac (nor was my aunt nor cousin). So, fast forward in time, I've been tested multiple times for celiac (blood test plus several upper endoscopies w/ biopsy, which is the gold standard for diagnosing celiac) and I definitely 100% do not have celiac, and gluten has never been a trigger food for me - but my mother (and aunt and cousin) is still convinced that she has celiac and she talks a lot about the things she "can't eat" and she's still of the opinion that if I just gave up gluten, that I'd have perfect health forever. Therefore I'm making myself sick, because I still eat gluten. Ugh, so yeah. There's both victim blaming and hypochondria or munchausen's or whatever it is when you make up an illness and stick to it. She's a little nuts.
So yeah, my relationship with my mother is really odd. She does that stuff, but she also spends a ton of money on me sometimes (she's taking me to Japan in a couple months, she's paid for the airline tickets and the hotels and the train passes and she's rented us cell phones and all sorts of very expensive stuff). It's weird. So these days I just try to steer the conversation towards Japan and away from gluten. It's going to be slightly hilarious being in Japan, though. My mother avoids soy as well, so no soy sauce and no miso soup, and obviously nothing like noodles for her, and she also said she's not going to eat anything raw like sushi. Soooo, she's going to eat pretty much rice? Meanwhile, all of those things sit really well with me - rice, fish, sushi, noodles, miso soup, soy sauce - I can do all of that just fine. So I'm going to be eating my way through Japan while she nibbles on her rice. You gotta find the humor in these situations sometimes!
Oh, and my cousin who went gluten-free? She goes on like 8 vacations a year, and she eats tons of gluten on every single vacation. She's one of those annoying people who takes a photo of every meal she eats and posts them all on facebook. So one time I called her out on it, she posted a photo of a croissant and I commented, "Doesn't that have gluten? Should you be eating that?" She responded that it was a French croissant, and French dough has less gluten than American dough. Um, so then yes, it does have gluten. I don't think my family even understands how celiac disease works - you can't have "just a little" gluten when you're on vacation. If you have actual celiac disease, you can't so much as have one molecule of gluten or you'll become very ill. So yeah, this is the kind of thing I put up with. I'm horrible because I eat gluten, but my cousin is fine because she "only" eats gluten on vacation. Uh huh, sure.
So yeah, my relationship with my mother is really odd. She does that stuff, but she also spends a ton of money on me sometimes (she's taking me to Japan in a couple months, she's paid for the airline tickets and the hotels and the train passes and she's rented us cell phones and all sorts of very expensive stuff). It's weird. So these days I just try to steer the conversation towards Japan and away from gluten. It's going to be slightly hilarious being in Japan, though. My mother avoids soy as well, so no soy sauce and no miso soup, and obviously nothing like noodles for her, and she also said she's not going to eat anything raw like sushi. Soooo, she's going to eat pretty much rice? Meanwhile, all of those things sit really well with me - rice, fish, sushi, noodles, miso soup, soy sauce - I can do all of that just fine. So I'm going to be eating my way through Japan while she nibbles on her rice.
You gotta find the humor in these situations sometimes!Oh, and my cousin who went gluten-free? She goes on like 8 vacations a year, and she eats tons of gluten on every single vacation. She's one of those annoying people who takes a photo of every meal she eats and posts them all on facebook. So one time I called her out on it, she posted a photo of a croissant and I commented, "Doesn't that have gluten? Should you be eating that?" She responded that it was a French croissant, and French dough has less gluten than American dough. Um, so then yes, it does have gluten. I don't think my family even understands how celiac disease works - you can't have "just a little" gluten when you're on vacation. If you have actual celiac disease, you can't so much as have one molecule of gluten or you'll become very ill. So yeah, this is the kind of thing I put up with. I'm horrible because I eat gluten, but my cousin is fine because she "only" eats gluten on vacation. Uh huh, sure.
That all sounds hilarious and a little sad. I had a friend who had gluten and if she ate a sandwich and accidentally shared a butter knife with people who ate regular bread she got incredibly sick and it took a week for her to recover.PaintedElephant, my mother is sort of the opposite - when I got sick, she invented an illness for herself as well. When I first got sick, the doctor said it could be something like Crohn's or Celiac disease, so I relayed that information to my mom. She then talked to some weird distant cousin or something, and the cousin apparently has celiac. My mother became convinced that, because there is celiac in one branch of the family tree, that I must have it and also that she must have given it to me, so she has it too. So she started telling everyone that she's got celiac and she went gluten-free and all that. She never had any symptoms at all, by the way. She got my cousin and aunt to go along with her on the gluten-free bandwagon as well. She was extremely vocal about it with zero evidence, she never saw a doctor nor was tested for celiac (nor was my aunt nor cousin). So, fast forward in time, I've been tested multiple times for celiac (blood test plus several upper endoscopies w/ biopsy, which is the gold standard for diagnosing celiac) and I definitely 100% do not have celiac, and gluten has never been a trigger food for me - but my mother (and aunt and cousin) is still convinced that she has celiac and she talks a lot about the things she "can't eat" and she's still of the opinion that if I just gave up gluten, that I'd have perfect health forever. Therefore I'm making myself sick, because I still eat gluten. Ugh, so yeah. There's both victim blaming and hypochondria or munchausen's or whatever it is when you make up an illness and stick to it. She's a little nuts.
So yeah, my relationship with my mother is really odd. She does that stuff, but she also spends a ton of money on me sometimes (she's taking me to Japan in a couple months, she's paid for the airline tickets and the hotels and the train passes and she's rented us cell phones and all sorts of very expensive stuff). It's weird. So these days I just try to steer the conversation towards Japan and away from gluten. It's going to be slightly hilarious being in Japan, though. My mother avoids soy as well, so no soy sauce and no miso soup, and obviously nothing like noodles for her, and she also said she's not going to eat anything raw like sushi. Soooo, she's going to eat pretty much rice? Meanwhile, all of those things sit really well with me - rice, fish, sushi, noodles, miso soup, soy sauce - I can do all of that just fine. So I'm going to be eating my way through Japan while she nibbles on her rice.
Oh, and my cousin who went gluten-free? She goes on like 8 vacations a year, and she eats tons of gluten on every single vacation. She's one of those annoying people who takes a photo of every meal she eats and posts them all on facebook. So one time I called her out on it, she posted a photo of a croissant and I commented, "Doesn't that have gluten? Should you be eating that?" She responded that it was a French croissant, and French dough has less gluten than American dough. Um, so then yes, it does have gluten. I don't think my family even understands how celiac disease works - you can't have "just a little" gluten when you're on vacation. If you have actual celiac disease, you can't so much as have one molecule of gluten or you'll become very ill. So yeah, this is the kind of thing I put up with. I'm horrible because I eat gluten, but my cousin is fine because she "only" eats gluten on vacation. Uh huh, sure.
I'm still having shitty reflux issues. Nothing seems to work except eating very little. :shifty:
Also moving around a lot and not sitting helps? Seems like just being upright keeps acid from shooting up my throat. Which I think is part of the reason(s) I could stand to lose some weight.
Welll poop. I'm sittin bored in the ED while I get fluids and wait on results from my stool sample. The D got worse overnight- everything I drank just poured right back out, and it kept waking me up.
Cat-a-Tonic
Super Moderator
Izzie, yes, for me being upright definitely helps. During a bad attack I need to keep myself bolt upright. As for moving around - I guess it could help, but make sure you're not overdoing it. For me, any type of exercise that involves my abdominal muscles just makes my reflux much worse. So try to keep your abdominal muscles relaxed as you're moving around. I find that I kind of tense up my abdominal muscles when I'm walking, I'm not sure if it's my body's way of protecting my guts from jostling around as I'm walking? I have to make a conscious effort to relax my abdominal muscles though. It's weird.
And yeah, I know that with actual celiac disease you can't have any gluten at all or you're sick for days. I imagine it's like me with coconut, and I certainly couldn't "cheat" and have "just a little" coconut on vacation - I don't want to spend a good chunk of my vacation feeling horribly ill. It's just dumb that some people think that it works that way.
And yeah, I know that with actual celiac disease you can't have any gluten at all or you're sick for days. I imagine it's like me with coconut, and I certainly couldn't "cheat" and have "just a little" coconut on vacation - I don't want to spend a good chunk of my vacation feeling horribly ill. It's just dumb that some people think that it works that way.
Cat-a-Tonic
Super Moderator
Oh no, Wildmtn! Hopefully you get some good care and answers in the emergency room. Feel better!
Thanks guys. I'm so dehydrated it took them 2 times tries to get the IV in when usually I'm easy. I just want to feel better
No c diff!! But also no answers. I'm being released with instructions to try peptobismol, keep drinking
Yay no c diff! But here's hoping it settles soon, when it's bad enough that you're getting dehydrated, it's not a fun time.
- Location
- Maryland
Oh Cat! That is an odd situation with your Mom! So funny because my mom eats gluten free even though her Celiac test came back negative.
Family are such a joy, aren't' they?
On another note, this weekend I had a BM and it was covered in a white looking slime. Not sure if it was mucus, but it was a lot. It actually kind of startled me. Any idea what causes this? Before I was diagnosed with Celiac, sometimes I'd go to the bathroom and the ONLY thing that came out was mucus, but since being GF I hardly see it anymore. I know for sure I haven't had any gluten... it was very odd.
Family are such a joy, aren't' they?
On another note, this weekend I had a BM and it was covered in a white looking slime. Not sure if it was mucus, but it was a lot. It actually kind of startled me. Any idea what causes this? Before I was diagnosed with Celiac, sometimes I'd go to the bathroom and the ONLY thing that came out was mucus, but since being GF I hardly see it anymore. I know for sure I haven't had any gluten... it was very odd.
- Location
- Maryland
I'm glad it's not C. Diff but it sucks to get no sure answer!
Cat-a-Tonic
Super Moderator
PaintedElephant, at least your mother bothered to be tested. I'm the only person in my family who has been tested for celiac (and I definitely don't have it). But there are 3 people who have self-diagnosed themselves with it, and my mom has even taken the step of diagnosing other people with celiac (she thinks my uncle, who clearly is in the early stages of dementia, must have celiac which she thinks somehow is in turn causing the dementia... um, no).
As for the mucus - everyone, even healthy people, produce mucus in their digestive tract. It helps the stool slide through. The digestive tract actually is very similar to the sinuses, in a way. The intestines not only produce mucus (I believe that's why the lining of the intestine is called the mucosa), but they also contain a lot of histamine receptors. And, because of that, some digestive conditions respond well to allergy medications. So, this sounds weird, but if the mucus persists or is worrying to you, you might want to try something like Claritin! It doesn't work for everyone, but it does actually help some people. It doesn't seem to help me, although I don't have a lot of mucus these days (I definitely have in the past though so I understand how weird it is). Mucus in the stool honestly isn't super worrying by itself though. It could be anything from allergies to IBS to IBD to just eating something that didn't agree with you, which is why most doctors don't pay a lot of attention to that particular symptom by itself. But yeah, I agree it is weird and disconcerting to look in the toilet and feel like your butt just blew its nose.
As for the mucus - everyone, even healthy people, produce mucus in their digestive tract. It helps the stool slide through. The digestive tract actually is very similar to the sinuses, in a way. The intestines not only produce mucus (I believe that's why the lining of the intestine is called the mucosa), but they also contain a lot of histamine receptors. And, because of that, some digestive conditions respond well to allergy medications. So, this sounds weird, but if the mucus persists or is worrying to you, you might want to try something like Claritin! It doesn't work for everyone, but it does actually help some people. It doesn't seem to help me, although I don't have a lot of mucus these days (I definitely have in the past though so I understand how weird it is). Mucus in the stool honestly isn't super worrying by itself though. It could be anything from allergies to IBS to IBD to just eating something that didn't agree with you, which is why most doctors don't pay a lot of attention to that particular symptom by itself. But yeah, I agree it is weird and disconcerting to look in the toilet and feel like your butt just blew its nose.
- Location
- Maryland
Thanks Cat! I'm not too concerned, it was just a lot more than I'm used to seeing at one time! :ywow:PaintedElephant, at least your mother bothered to be tested. I'm the only person in my family who has been tested for celiac (and I definitely don't have it). But there are 3 people who have self-diagnosed themselves with it, and my mom has even taken the step of diagnosing other people with celiac (she thinks my uncle, who clearly is in the early stages of dementia, must have celiac which she thinks somehow is in turn causing the dementia... um, no).
As for the mucus - everyone, even healthy people, produce mucus in their digestive tract. It helps the stool slide through. The digestive tract actually is very similar to the sinuses, in a way. The intestines not only produce mucus (I believe that's why the lining of the intestine is called the mucosa), but they also contain a lot of histamine receptors. And, because of that, some digestive conditions respond well to allergy medications. So, this sounds weird, but if the mucus persists or is worrying to you, you might want to try something like Claritin! It doesn't work for everyone, but it does actually help some people. It doesn't seem to help me, although I don't have a lot of mucus these days (I definitely have in the past though so I understand how weird it is). Mucus in the stool honestly isn't super worrying by itself though. It could be anything from allergies to IBS to IBD to just eating something that didn't agree with you, which is why most doctors don't pay a lot of attention to that particular symptom by itself. But yeah, I agree it is weird and disconcerting to look in the toilet and feel like your butt just blew its nose.
On a totally different topic (but possibly autoimmune related, but not sure yet) my eyes have been weird lately, like, it's been hard to open them in the morning. It's almost like they, well, the lids get "stuck" to the cornea. So I went to the opthamologist today. Turns out, that's exactly what's been happening, and I have inflamed corneas right now. I'm to try using artificial tears four times a day, plus something called Muro at night and first thing in the morning to help with the inflammation, and take fish oil (1000mg of omega 3 twice a day) for the next month, and then go back and see how I'm doing.
So weird. I feel like my body is totally flipping out right now!
So weird. I feel like my body is totally flipping out right now!
So it seems like my reflux has calmed down slightly. Which is great. On the other hand I'm on my period, dizzy constantly and my gums are like... whiteish. Which is obviously an anemia thing, and my doctor is supposed to call with the results and it's making me anxious to wait.
She also seems to think we should figure out WHY I'm anemic before we actually treat the anemia? Which to me seems like a strange approach. Still not entirely happy with my new GP. Not really because of the GP, who is great, but the health center seems to have reaaaaally slow admin. Might make a switch just because of that.
Still though, living in a city with an actual university hospital in it and like, a proper ER and all that is making this whole process a lot calmer for me. I feel like I can wait things out a bit longer since really, it's only a 5 minute bus ride to the ER if I feel like something's really about to give.
She also seems to think we should figure out WHY I'm anemic before we actually treat the anemia? Which to me seems like a strange approach. Still not entirely happy with my new GP. Not really because of the GP, who is great, but the health center seems to have reaaaaally slow admin. Might make a switch just because of that.
Still though, living in a city with an actual university hospital in it and like, a proper ER and all that is making this whole process a lot calmer for me. I feel like I can wait things out a bit longer since really, it's only a 5 minute bus ride to the ER if I feel like something's really about to give.
Sorry again for being a bit MIA. Work and been away the weekend with my boyfriend! See some of you have had good news, but no sort of diagnosis yet!
For me, I've been in a lot of pain today, and I have been taking Laxido, 2 sachets. Usually does the trick, diarrhoea actually happens. But nope, the stool seemed to go normal, then bam! I've pebble stools again! But I'm going constantly, but it's soft pebble! I am so confused! Also, had processed cheese with added whey (accident) last night, and probably why my stomach hurts! Sounds more like a nice lactose intolerance! Eek.
For me, I've been in a lot of pain today, and I have been taking Laxido, 2 sachets. Usually does the trick, diarrhoea actually happens. But nope, the stool seemed to go normal, then bam! I've pebble stools again! But I'm going constantly, but it's soft pebble! I am so confused! Also, had processed cheese with added whey (accident) last night, and probably why my stomach hurts! Sounds more like a nice lactose intolerance! Eek.
Izzie, that's a good thing that they'll find the cause before treating, as you may find you have more tests and find the cause sooner!
So it appears i have 2 fissures, and 1 of them is lateral. I have been in tears yet again due to Google's diagnosis....Crohns.
Has anyone has a lateral fissure and it was just that, a fissure, with no secondary cause?
Has anyone has a lateral fissure and it was just that, a fissure, with no secondary cause?