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Undiagnosed Club Support Group

cmack

Moderator
Staff member
Hi Cat,

You are certainly having a tough time, I hope you get over your cold soon and can enjoy more activities. You are a great person and I'm sure someone will be very happy to hire you. In the meantime try to relax enjoy the moment. :) I believe everything happens for a reason, hopefully that is the case for you.


Best regards,

Chris


P.S. I laughed when you told us all the stuff you had in your desk! ;)
 
So I'm having surgery in three weeks! Finally got my date. Which set off my anxiety all over again :p

I've been having a pretty good week so I've put it out of my mind a little, getting the date brought it rushing back in. I'm trying to steer clear of the disaster thinking (What if I die, I'm probably going to die, what if just because I keep thinking I'll die I will because the universe hates me, what if I'll need a feeding tube, what if I'll feel worse after etc. etc. ad nauseam) and instead focus on the fact that I am very grateful to have access to good healthcare, that my surgeon is awesome and experienced, that I have helpful kind family members who are going above and beyond to help me get through this.

Spending my day shopping for lots of soft PJs to wear in the hospital, and trying to picture a post-op life where I can have some consistency, hopefully feel better overall, and maybe actually go back to school full time next year. Being able to sleep on a regular flat bed, not waking up with a horrible sore throat every morning, and maybe not having to take so much medication all the darn time; that's the dream.

Cat - so sorry to hear you got laid off, working somewhere for so long and getting laid off just like that must feel pretty awful. I hope you'll at least get over your cold and feel better soon!
 
I'm definitely learning to take each day as it comes and not worry about the future. I was supposed to go to Church tonight (All Saints Vigil) but had trouble finding a nurse for the retirement community I work for due to a call-off. Fortunately, we found someone, but my sinuses are killing me and I think I might be getting an infection. I have an allergist where I get weekly allergy shots so I will get in touch with her office if it doesn't go away in a few days for an appointment and/or antibiotics if needed. Flexibility goes a long way and I need to learn to be flexible with myself and not so rigid like I normally am. I get so bent out of shape if my plans have to change, but they had to change for a necessary reason tonight - work. I have the option to go to Church tomorrow if I'm feeling well enough, so that's good. :)
 

cmack

Moderator
Staff member
When I went in for surgery, I always wondered and stressed if something would go wrong and all of the above (literally... and then some). I woke up every time and it hurt, then I had improvement. I hope everything will be okay for you too Izzie. The good news is you may even get better. :)
 
My abdomen to the left of my belly button has been hurting all day today and has gotten progressively worse. I emailed my GI's nurse but didn't hear back yet. I took a Linzess but I don't think it's due to constipation because I've been quite regular lately, but I just wanted to be sure. I've also been getting stomach cramps whenever I eat. Not sure what it could be - it might be non-pyloric gastritis again like I had last year. I took 14 days of Nexium about 2 months ago for GERD so I'm not sure what else I could do. Hope to get some answers soon.
 
Unfortunately, the pain is worse today. I still haven't heard from my GI doctor. I just took a Zofran for pretty bad nausea and 2 Levsin to see if that would help. I'm also drinking a ginger ale I remembered I had in my office. If I didn't have a doctor's appointment this afternoon by work that I need to keep, I would ask to leave early. Usually, the thing that helps me the most is laying on my bed flat on my back with a heating pad on my stomach. I'm about to join my friends for our lunch break and don't want to eat. :(
 
I was up all last night unable to lay down because as soon as I did I had really crazy regurgitation, even though it had been many hours since I last ate. Ended up falling asleep around 7 am this morning and not waking up until after lunch... Very unproductive day, to say the least. Managed to stop by my volunteer job for a few hours at least. First time I've been around more than one or two people at a time in a while, which was nice.

Went out and got myself some new nailpolish, thanks for the tip Cat, it really does perk you up a bit! :)

MissLeopard - sorry to hear you're not doing well! Hopefully your doctor will get in touch soon.
 
I really wish I didn't have to attend this doctor appointment. Still haven't heard from my GI doctor and I don't think she works Fridays. Ugh! The stomach pain is so bad that I'm having trouble standing upright even though I took a 2nd Zofran. I feel like crap. I wouldn't be surprised if I end up calling in sick tomorrow. It feels like someone punched me in the stomach. :(
 
Cat - I’m so sorry that you got laid off! Was it sudden and unexpected? It’s crazy that they’d do that to you after you’ve worked there for so long. I’m glad you feel like you’ll be okay financially though. And the good news is that this’ll give you more time to focus on yourself and to spend time with your dog. But I hate when something bad happens to me and someone tells me to look at the positive. Sometimes I just want to be mad for a while. So I give you permission to punch some things. And if you need to punch the people who laid you off.....I’m good with that too. :)

MissLeopard - I’m glad to hear your depression is getting better, but I’m so sorry to hear that your stomach isn’t. I hope it starts improving soon! Keep us posted.

Izzie - Yay, you have a date! It’s one of those things where you’re happy to finally have a date, but then you feel a sudden surge of panic. All the bad thoughts you’re having are totally normal. It seems like you can read my mind, because I’d be thinking the same exact thoughts. I swear the universe hates me too! I’m going to be sending you positive vibes for the next few weeks. I really really really hope the surgery makes you feel better!!
 
MissLeopard - I’m glad to hear your depression is getting better, but I’m so sorry to hear that your stomach isn’t. I hope it starts improving soon! Keep us posted.
Thank you! I just saw my psychiatrist this afternoon and we agreed to up my dose of my medication since it's helping me quite a bit, but could still use some help since I'm still in my stressful work environment (currently job searching for new opportunities).

I'm thinking I may have a stomach bug. I really feel like I was punched in the stomach. Every time I try to eat, I feel even worse. It really sucks! I'll be sticking with my safe foods like rice, rice ramen with chicken broth, potatoes, etc. Hopefully, it will be gone by Saturday since I have something really exciting to go to in the afternoon that I do NOT want to miss! :)
 
Cat - I’m really sorry to hear about your job. What a rotten way to repay 15 years of loyalty. I hope things start looking up soon.

Izzie - I’m glad to hear your date is scheduled. I hope the anxiety improves. Its really great to think it might be able to make your symptoms much better, that would be womderful!

Miss Leopard - I hope things improve. It sounds like things are really difficult now. Hang in there! I was reading up on therapy dogs because of you and it makes me really want one. What breed were you lookng at? I think our dog wants to be an only dog, though. He is a weird combidation of very bouncy and snuggly. Maybe I can get him to snuggle more and calm down a bit. He is about 50 lbs, tall and lean, and its oddly reassuring to have him flop against me.

Thanks for the advice everyone. I am not really having a problem with anxiety or dwelling on bad thoughts, its a bit different. Just different depression symptoms. Distraction does help sometimes and it seems to work best with comfortable favorites so I’m doing that. I’m seeing my GP next week about meds and I’m hoping it will help. My husband has been very supportive and gentle with me, too, which really helps.
 
Miss Leopard - I hope things improve. It sounds like things are really difficult now. Hang in there! I was reading up on therapy dogs because of you and it makes me really want one. What breed were you lookng at? I think our dog wants to be an only dog, though. He is a weird combidation of very bouncy and snuggly. Maybe I can get him to snuggle more and calm down a bit. He is about 50 lbs, tall and lean, and its oddly reassuring to have him flop against me.
I was looking at getting a Golden Retriever puppy from a highly reputable breeder an hour away from me. I am in love with the breed but I haven't convinced my mom to allow me to get one since I still live at home and will for a while now that the apartment fell thru.

As for my stomach pain, I woke up this morning and felt much better! Whatever it was must have been a 24 hour thing. Hopefully, it's gone for good!
 

Cat-a-Tonic

Super Moderator
Akgirl, Thank you. I saw it coming, but the timing of it surprised me. I work(ed) for the Wisconsin region of a national company. Earlier this year, they decided to merge our region with another (Illinois). They ousted our Wisconsin regional president and made Illinois' regional president in charge of us. Illinois already has a regional HQ - I work at Wisconsin's regional HQ. They obviously don't need 2 HQs, so I figured they'd get rid of us.

But, the timing was really odd. They literally just had our CEO fly in for a meeting, in which he told us that we're doing great and are going to have big profits this year. As soon as the CEO got in the elevator to leave, they called me back to HR to tell me that I'm being laid off due to budgetary reasons. I was like, wait, what about all those profits that they just told us about not two minutes ago?? But I guess they can use whatever reasoning they want, it doesn't have to make sense.

As for punching someone, there's a few people I'd love to punch in the face! But I'd probably have my severance pay taken away plus I'm sure I'd be arrested for assault if I tried it. :p Fortunately I have a punching bag in my basement, so I can hit that when I'm feeling angry. I've had a wicked cold since right after I got laid off, though, so I'm not up for doing much besides resting right now.

I am getting a decent severance - it's one week of pay for each year that I've worked there, so that's 15 weeks of pay. Plus I can get unemployment and can cobra my insurance. I'm really looking forward to taking a bit of time off. And I plan to apply to work at the local hospital when I am ready to go back to work. I'm pretty sure they offer really good health insurance, and they have a lot of administrative job openings right now. I looked at one listing and it said you must have at least 3 years of experience in an administrative support role - well, I have 12 years of experience there (my first 3 years at my current company were in a customer service call center, and after that call center closed I moved into an administrative support role). So I have more than enough experience and I hope I'd be a shoo-in for a hospital administrative job. And if I can't get a job there, I have multiple friends who work at a local insurance company, so I could always work there. So yeah, I'll be okay. Going to focus on rest and healing and health a bit first.
 
I was able to work all day today! I am so glad I didn't have to call in sick! As much as I want to leave, I really want a good reference for the future because this was the first job I had after graduation so I want to make it last. I really hate to leave, but I'm tired of the long commute, the high turnover of nursing staff (we let 2 CNAs go today), the lack of communication, and the overall quality of the management staff. I'm really hoping to find a position in a company that provides good benefits and I'm looking especially at companies that offer tuition reimbursement. Hoping I hear something soon. :)
 

cmack

Moderator
Staff member
Good luck MissLeopard, I hope you find just the right job for you. It sounds like it's a little rough where you are at now, hopefully it will improve. I'm certainly happy to hear that you made it to work, references can go a long way. Good on you buddy!
 
Cat - It sounds like getting laid off could be a blessing in disguise for you! But they still definitely didn’t go about it the right way. I’m glad you have some time to relax though. You deserve it.

Chris - Nothing new to report from me. Same shit, different day.....literally! Ha. How are things going with you?
 
We actually don’t have any snow right now here. It snowed and then it melted. I can’t remember the last time there wasn’t snow in November. It was actually raining on Halloween. So strange!
 
Oh boy, today is not my day.

On top of my stomach being generally a bother, today I took a tumble down the stairs. Slipped and landed with my full weight right on the edge of a step. My lower back took quite a blow and I'm very swollen and in a lot of pain. Talked to a nurse on the phone who didn't think it seemed serious enough to have to go to the ER or anything since I can move and have full sensation but MAN it hurts bad and is going to be so blue tomorrow.

It's so typical, I'm so clumsy and things like this happen to me often though it's been a while since I did something this bad/painful. I'm bummed because I'm only 2 weeks out from surgery and was hoping to be able to be active and enjoy these weeks, but I'm pretty sure this injury will keep me pretty still for at least a week...
 

cmack

Moderator
Staff member
I hope you are okay Izzie, that sounds awful. If it makes you feel any better I fell off the roof and landed on the balcony once,(good thing there was a balcony or it would have been a 20 footer instead of about eight), so you aren't the only one who can be clumsy. I was trying to do three things at once... as usual, so ya I had it coming. I hope you didn't break anything...Yikes!
 
cmack, thank you, I'm kind of wallowing in self-pity at the moment :p Hopefully I'm not too injured, it seems like it's mostly a soft tissue thing but it's so painful to even wear pants that press on it! It could've been worse but so unnecessary!

Falling from a roof sounds terrifying, definitely a lucky break that there was a balcony around to catch you ^^
 
Oh boy, today is not my day.

On top of my stomach being generally a bother, today I took a tumble down the stairs. Slipped and landed with my full weight right on the edge of a step. My lower back took quite a blow and I'm very swollen and in a lot of pain. Talked to a nurse on the phone who didn't think it seemed serious enough to have to go to the ER or anything since I can move and have full sensation but MAN it hurts bad and is going to be so blue tomorrow.

It's so typical, I'm so clumsy and things like this happen to me often though it's been a while since I did something this bad/painful. I'm bummed because I'm only 2 weeks out from surgery and was hoping to be able to be active and enjoy these weeks, but I'm pretty sure this injury will keep me pretty still for at least a week...
I am sorry.
 
I woke up in a puddle of sweat this morning. This was happening with my old antidepressant and I thought, when I got off it, that it would be gone. Not sure what is causing it now but I hope it stops.

I also woke up this morning with that pain to the left of my belly button. If I press in that area, it hurts. I did not hear from my GI doctor last week so I plan to call the office tomorrow. Not sure if my emails are not going thru or if the nurse was off last week, but my GI told me to contact her if my symptoms worsen. I'm wondering if it is what my mom thought it was - diverticulitis. I certainly hope not, but I have almost all of the symptoms except for blood in the stool (at least I cannot see it if it's there). :(
 
I went to Church with my mom but we didn't stay long because we both felt terrible. I'm at home, taking it easy, not sure if I'll be able to make it to work tomorrow. Hopefully, I'll be able to get in touch with my GI doctor's nurse tomorrow. :(
 
Okay, wow, so after a nurse took a look at my back I was promptly sent to the ER for an x-ray, it was bruised and nasty and they thought I had a spinal fracture. Thankfully, there was no fracture, just a really nasty bit of inflammation in the soft tissues.

However, my point in all this; I had to lay down flat for about 5-10 minutes for the x-ray and that alone is enough to completely mess up my stomach and give me really crazy reflux for the rest of the night and a sore throat for probably days.

So ready for this surgery. I really feel SO very ready for it.
 
My GI nurse finally emailed me back. Turns out, I was right - she had a family emergency last week and was out for 2 days. She asked if I was still having issues and I told her what happened yesterday - I ended up leaving church before it even started because my stomach hurt so bad on the left side (I actually forced myself to go because I hate to miss) and then, I got home and a few hours later ended up taking a leftover Vicodin because the pain was so bad, it was radiating to my left hip area. I was laying down on my bed before that trying to nap and just couldn't get comfortable. I was also getting an "ice pick" headache in my left temple - so, basically, my whole left side was just malfunctioning yesterday. :(

Because of all the problems this weekend, I did not get to attend the event I was really looking forward to. I'm being extra gentle with myself because my health is important and I really wanted to get to work today (I'm typing at my work computer right now). I'm hoping that my GI doctor will be able to figure out what is causing this. In fact, I thought earlier that she might want to do another scope series since it's been over a year since my first one and the symptoms have worsened/changed.
 
I will keep you in my prayers MissLeopard. I hope things settle down soon.
Thank you. My mom seems convinced that I may have what my dad's family has problems with, including him - diverticulitis. She's even had it herself which puts me at higher risk and my paternal aunt just experienced it last month. My dad is on sulfasalazine to prevent his chronic diverticulosis from turning back into the inflamed version. I, however, cannot take sulfa drugs as they cause asthma issues and rashes in me. I'm going to let my doctor know and see what she wants to do.
 

cmack

Moderator
Staff member
I think that's a good idea to let the doctor know as much family history as possible. I was told to avoid seeds, especially small ones, as a precaution at one time when the doctors thought I may have had diverticulitis. I eat them now and I'm okay, as my doctor said it was an off chance, and seeds have been found to be fairly insignificant regarding this particular problem. You may want to ask about that too.
 
I think that's a good idea to let the doctor know as much family history as possible. I was told to avoid seeds, especially small ones, as a precaution at one time when the doctors thought I may have had diverticulitis. I eat them now and I'm okay, as my doctor said it was an off chance, and seeds have been found to be fairly insignificant regarding this particular problem. You may want to ask about that too.
I've been doing some detective work on WebMD and other websites to see if there is anything I should stay away from but they seem to have debunked the myth that seeds and nuts cause further problems - in fact, they are saying now that they may help. Of course, most doctors probably have the "old school" way of thinking and may tell you that you need to stay away. I think it's probably more important to stay away from particle-causing foods when you are confirmed to have diverticulitis.

https://www.mayoclinic.org/healthy-...pert-answers/diverticulitis-diet/faq-20058333

I can't eat a high fiber diet anyway due to my IBS-M - it causes me pain and discomfort. My doctor gave me Linzess to keep me regular.

I'm hoping to hear back from the nurse today. I'm thinking about cancelling my appointment with the dietician on Thursday and trying to get an urgent appointment with my GI instead. I need to get this under control. I had really bad stomach cramping again today after having bad diarrhea last night. I found some organic Gatorade that is low-FODMAP friendly and am drinking that so I don't get dehydrated.
 
So it appears my mom was right - my GI doctor wants to treat me for diverticulitis and is giving me another strong antibiotic. The nurse also told me to take an acid reducing medication such as a PPI like Nexium which I took back in August for GERD but she wants me to use it in case my pyloric-negative gastritis has returned. Looks like I'm going to have to take it easy for a while. If my symptoms don't improve, she wants to get a CT scan of my abdomen/pelvic region.
 
My back has been killing me, as I feared. Won't be getting much done this week I'm afraid. I'm hoping to be better by Friday so I can sit in a car for 4 hours. Supposed to take a little weekend trip to visit friends. It's difficult to travel and to socialize when you can't really eat much. The first question I got from our hosts was "what can I even make that you can eat though?".

I wish there wasn't such an emphasis on food while socializing, it's something I suspect I will have to learn to navigate post-op as well as I'm sure I'll have to be a bit more cautious than most even if the surgery is a complete success. I guess I'll just have to become the hosting type so I'm the one making the food :p

Starting to get some pre-op nerves, but I'm handling it well so far. Starting to look forward for the first time in a long time, and that kind of hopefulness is only possible because I'm having this surgery.

MissLeopard - glad you're at least getting treatment! Hope things improve for you soon.
 
Stupid insurance is holding up my prescription of the Xifaxan again! I had it approved back in August but now they are delaying it again. UGH!

Anyway, I started taking the Nexium this morning for the gastritis and it seems to be helping already. No stomach pain today after about a week! YAY! Hopefully, this will get rid of it altogether. My friend at work has had to take Nexium regularly for 2 years and I hope I don't have to do that since PPI's can cause calcium absorption issues.
 
I've taken high dose PPIs for 3 years now. No calcium issues for me as far as I know. The issue for me has been iron. Recurring iron deficiency and anemia that I've had to have treated with iron infusions. If you do have to stay on them just make sure that someone does test your levels occasionally. It can mess with things other than calcium too, apparently.
 
I've taken high dose PPIs for 3 years now. No calcium issues for me as far as I know. The issue for me has been iron. Recurring iron deficiency and anemia that I've had to have treated with iron infusions. If you do have to stay on them just make sure that someone does test your levels occasionally. It can mess with things other than calcium too, apparently.
I think it might be beneficial for me to take supplementary B-12, as well. Apparently, certain forms of gastritis can lead to pernicious anemia which I am showing signs of - especially fatigue and cracks at the sides of my lips (very painful; it feels like paper cuts). :(
 
Stupid insurance is holding up my prescription of the Xifaxan again! I had it approved back in August but now they are delaying it again. UGH!

Anyway, I started taking the Nexium this morning for the gastritis and it seems to be helping already. No stomach pain today after about a week! YAY! Hopefully, this will get rid of it altogether. My friend at work has had to take Nexium regularly for 2 years and I hope I don't have to do that since PPI's can cause calcium absorption issues.
Glad the Nexium is helping
 
Izzie, have your doctors checked your duodenum for inflammation/ulcers/damage from too much stomach acid? I’ve had to take high dose PPIs for over a decade due to both crohn’s and reflux. At one point I had Barrett’s esophagus but upping my current PPI from once to twice a day had helped with that. I take dexilant now but started with omeprazole and then took nexium for a while. I’m very interested in your surgery since it’s been suggested I have a Nissan fundoplication as well. If my next endoscopy shows Barrett’s I might consider it.
 
Jabee, I believe early endoscopes did go into my duodenum if I'm not mistaken. Not something that's been discussed really. I've had esophagitis on and off for at least a year and a half, my last endoscopy was a year ago and it's possible I might have developed Barrett's as well which is part of why I'm having surgery. Don't want to let this go on any longer. My most notable "side effect" from GERD so far has been really poor esophageal motility and dysphagia that seems to come and go a bit depending on the severity of my symptoms at any given time. Not to mention issues with my voice, a chronic cough, and constant sore throat...

Because of my esophageal dysmotility my surgery will be a Toupet (partial) fundoplication, and an open one at that, which is not most people's experience.

I'll keep you all posted on how everything goes :)
 
My decision to have surgery was really heavily influenced as well by the fact that I require very high dose PPIs to even remain somewhat stable (120 mg/day + additional 300 mg of Zantac/day on particularly bad days) and the fact that as a side effect I've had repeated instances of quite severe mucosal inflammation (blisters, swelling, soreness etc.) of my mouth and throat, especially from Nexium and Prilosec. I only have one medication that I can still take, and I've been starting to get blisters from this one as well.
 
Finally got my Xifaxan today after my GI nurse submitted a new prior authorization to my insurance. I've taken 2 doses - one at dinner and another at bedtime (about 5 hours apart). I've noticed that, as of this evening, the painful bloating in my lower abdomen has decreased so I'm hopeful I'm on the right track. I still need to get some B12 but I'm having a difficult time finding one that is both effective and low-FODMAP friendly. It seems like every sublingual tablet or liquid has sugar alcohol like xylitol, mannitol, or sorbitol - all of which are no-nos because they cause horrible symptoms in me. The one that I found that did not have any SAs and was effective had apple juice in it which is also high FODMAP so I'm still researching on Amazon.

Anyway, I'm experiencing better results at my job and decided to stay there for now instead of moving to a different company where I would lose my FMLA and benefits for a period of time. I'm starting school in January to become a nurse which will require me to resign in a little more than a year's time anyway, so it seems best to stay put - especially since things are going well. It would be such a hassle to start from the beginning again since I would not stay with a new company for longer than a year anyway.
 
The Xifaxan must be working but it caused me horrible intestinal cramping and diarrhea this morning. I had to take some Kaopectate because I felt raw inside. Very painful!

I'm, amazingly enough, still at work because the Kao helped, but it's cold outside and my right hip has been bothering me all morning. I woke up this morning and it was so stiff and sore. I must have slept on it wrong or my bursitis is acting up. It's been a while since I had a chiropractic adjustment, so I'm thinking about going next week when I get paid.
 
A chiropractic adjustment often helps me with similar problems, I hope it helps you too.
I love my chiropractor! My friends at work use him, too, and he's wonderful! I told him once that his hip adjustment actually caused me pain and soreness that wasn't there before and he was really gentle from then on. My hip is taking a long time to move back into place because my right leg is not the same length as my left (it's actually just a tad longer) so my right hip is constantly inflamed. I hope to get in next week on Thursday after work. :)

ETA: It stinks not being able to use Advil! That's pretty much the only pain reliever I can use that works well. Tylenol just doesn't cut it and I'm stuck with just dulled pain rather than being painless. Vicodin is just not worth the addiction risk most of the time and I can only take it at home so, when I have a headache like today, I'm forced to use plain Tylenol. :(
 
Ugh. Tylenol is really not a great pain reliever. It certainly does nothing for my headaches. Have you tried Celebrex? My GI lets me take that for arthritis pain.
 

cmack

Moderator
Staff member
I agree. Tylenol is pretty much useless unless it's to bring down a fever. No pain relief at all. I have tylenol #3 and it is useful at times, but if you take it too often it just stops working, plus eventually it will constipate a person too. We need something better that is non addictive, I hope someone invents it soon. I haven't looked into Celebrex though.
 
I love my chiropractor! My friends at work use him, too, and he's wonderful! I told him once that his hip adjustment actually caused me pain and soreness that wasn't there before and he was really gentle from then on. My hip is taking a long time to move back into place because my right leg is not the same length as my left (it's actually just a tad longer) so my right hip is constantly inflamed. I hope to get in next week on Thursday after work. :)

ETA: It stinks not being able to use Advil! That's pretty much the only pain reliever I can use that works well. Tylenol just doesn't cut it and I'm stuck with just dulled pain rather than being painless. Vicodin is just not worth the addiction risk most of the time and I can only take it at home so, when I have a headache like today, I'm forced to use plain Tylenol. :(
My chiropractor helped me today
 
Ugh. Tylenol is really not a great pain reliever. It certainly does nothing for my headaches. Have you tried Celebrex? My GI lets me take that for arthritis pain.
I've heard of Celebrex but never tried it. I thought all NSAIDs were a no-no? I may have to ask my GI or PCP doctor to give me some help with pain relief. I've heard of Toradol (another NSAID but usually given intravenously) but they usually don't give that on a regular basis - it's typically something you get in the ER. I definitely need help with hip pain and headaches that actually works or I'm going to be hurting, literally. Vicodin works but I have very few pills left from my surgery and I don't want to become addicted to it.
 

cmack

Moderator
Staff member
I was told Toradol should have never been given to me in the hospital...after the fact. I looked up Celebrex and it says not to use it if you have intestinal bleeding... how many of us can be sure we don't? I think I'll avoid it myself.
 
Finally got my Xifaxan today after my GI nurse submitted a new prior authorization to my insurance. I've taken 2 doses - one at dinner and another at bedtime (about 5 hours apart). I've noticed that, as of this evening, the painful bloating in my lower abdomen has decreased so I'm hopeful I'm on the right track. I still need to get some B12 but I'm having a difficult time finding one that is both effective and low-FODMAP friendly. It seems like every sublingual tablet or liquid has sugar alcohol like xylitol, mannitol, or sorbitol - all of which are no-nos because they cause horrible symptoms in me. The one that I found that did not have any SAs and was effective had apple juice in it which is also high FODMAP so I'm still researching on Amazon.

Anyway, I'm experiencing better results at my job and decided to stay there for now instead of moving to a different company where I would lose my FMLA and benefits for a period of time. I'm starting school in January to become a nurse which will require me to resign in a little more than a year's time anyway, so it seems best to stay put - especially since things are going well. It would be such a hassle to start from the beginning again since I would not stay with a new company for longer than a year anyway.
Glad things are better at the job.
 
I was told Toradol should have never been given to me in the hospital...after the fact. I looked up Celebrex and it says not to use it if you have intestinal bleeding... how many of us can be sure we don't? I think I'll avoid it myself.
I'd heard turmeric's active ingredient, curcumin, can be an anti-inflammatory but there is very little research supporting its use. I tried it and noticed no difference whatsoever. It seems options are very limited - either take regular Tylenol or a prescription painkiller like Vicodin or Tramadol. :(
 

cmack

Moderator
Staff member
I actually have been using turmeric myself, to good effect. My doctor recommended it to me to add in my smoothies, he said it absorbed far better in the presence of freshly ground black pepper and fresh ginger root. It has been beneficial in my case. I add 3/4 tsp of turmeric and roughly 7-10 ground black peppercorns with a tablespoon sized piece of ginger to a 500 ml smoothie. I am on the high end, as this is generally enough for a liter or more.
 
I actually have been using turmeric myself, to good effect. My doctor recommended it to me to add in my smoothies, he said it absorbed far better in the presence of freshly ground black pepper and fresh ginger root. It has been beneficial in my case. I add 3/4 tsp of turmeric and roughly 7-10 ground black peppercorns with a tablespoon sized piece of ginger to a 500 ml smoothie. I am on the high end, as this is generally enough for a liter or more.
Glad it worked for you. I wish it worked for me. My pain tolerance is pretty low - I have fibromyalgia which makes my pain even more prominent. It really stinks when the only thing that seems to help my pain is my worst enemy and there are no real alternatives that are also convenient that I can take to work with me. Rest seems to be my biggest help, but I can't sleep all the time. I'm really hoping a B-12 supplement will help with my fatigue and nerve pain issues.
 

cmack

Moderator
Staff member
Hi MissLeopard,

I care about you, sorry it didn't help. You will still be my friend in the end...Ha! That rhymed! I hope you find something that helps, and I will be looking out for anything that may benefit you too! I'm always doing research, stay tuned for more. :)
 

Maya142

Moderator
Staff member
Check with your GI about NSAIDs - some will allow them if absolutely necessary. I wouldn't be hugely worried if you are only taking them infrequently, especially if you don't have IBD and have another GI disorder.

My younger daughter has severe arthritis and relatively mild/moderate IBD so she is allowed to take an NSAID. In her case, it would be harmful not to take one - they actually reduce the odds of radiographic progression in AS and they help a lot in terms of pain and stiffness. She is monitored very carefully by her GI.

Not all NSAIDs are equal - some are harder on the GI tract than others. Celebrex is probably easiest on the GI tract.

Toradol is usually given via IV. My daughter has had it many times without issues. It all depends on what your GI is ok with.

Other than that, Tylenol, Voltaren gel (topical NSAID so less bad for the gut) and then prescription pain meds, which come with their own risks.
 

cmack

Moderator
Staff member
I find most of my pain happens at night, and I'm single so I have nobody to put the lotion in the right spot. The topical versions work, but not if you can't reach. I have even had topical ketamine lotion before and it was so hard to put on that it was not much use. It worked well if someone put it on though. I got it from my compounding pharmacy, prescribed of course.
 
I have an appointment with my GI doctor set up for the 15th at 11:15am to talk about my options since the dietician was not covered by my insurance so now I don't have an option to get personalized advice on low-FODMAP diets. My insurance really frustrates me - they make everything incredibly difficult. I have an HMO thru work and, while I'm thankful I have insurance (I didn't for over a decade), I'm tired of them overruling a medical doctor that I trust. :(

Anyway, I'm taking it easy this morning because I have a fun afternoon planned with my mom. We are going to see "Murder on the Orient Express" and then have a dinner date at my favorite pizza joint where they have the BEST gluten-free pizza ever! I can't wait! :)
 
I was able to take my little weekend trip after all, propped up on a bunch of pillows in the back of the car to protect my poor injured back. Speaking of, still hurts like heck, to the point that I'm concerned it might interfere with surgery since I can't lay on my back at all still. I'm also pretty swollen and they're supposed to place an epidural pain pump of some kind.

The trip made it clear to me once again why I'm having this surgery. I had informed my lovely hosts about my illness and they did their best to accommodate me but eating made me sick, and sleeping in a too-soft bed made it hard to breathe as my stomach was pressing up on my lungs all night. Looking forward to a time where it will be possible to be a little spontaneous again!

Officially one week and a handful of hours to go until surgery! Starting to get seriously nervous, or maybe what I'm feeling is anticipation, not sure. I'm anxious to have it over with and start the healing process. The fact that there is even a chance of a medication- and symptom-free life in the future absolutely blows my mind.

Also am trying to prep for the hospital. I'm super allergic to hospital laundry detergent and always end up covered in a rash just from having their gowns on for a few hours so a full week in hospital sheets will be... something. Bringing lots of long-sleeved PJs and leggings and lotions and things.

Also those of you who have been in the hospital after surgery: will it be super weird if I bring my laptop? I feel like it would seem super douchey to just pull out a computer and start typing away when you're recovering from surgery :p On the other hand, it is my #1 source of entertainment when sick, so...
 
I'm at work this morning but I'm not feeling well. My gut is hurting and, when I tried to go #2, I was about to start crying because it hurt so bad. It's obvious it's going to take a while for my gut to heal. I have an appointment with my GI on Wednesday, so I'm going to make sure I'm covering all my bases. I also feel incredibly nauseous this morning. I was drinking some Gatorade to help boost my hydration but I started coughing when it went down the wrong pipe. Now, my stomach is upset with me and I'm debating whether or not to take Zofran or a Compazine or just ride it out. I've already taken my morning dose of Xifaxan (that might also be causing the nausea) and some Tylenol. :(

I also emailed my GI's nurse to ask about pain management since Tylenol just doesn't work all that well but I'm concerned that NSAIDs could exacerbate my GI issues. :(
 
I wouldn't take any NSAID's it has made me worse before. I'm thinking of you, and will keep you in my prayers.
Yeah, I thought since my gut is already super sensitive, it would be best to stay away. I've been using topical stuff like Aspercreme but I can't use that for a headache, so I need to know what I can use safely other than Tylenol if that doesn't help. Good thing I have the appointment tomorrow morning. :)
 
Location
UK
Izzie you can take your own blanket to the hospital which may help with the detergent issue, I always take my own when I'm I'm. Obviously in post op etc they will use theirs but once you're settled in your bed you could swap them. I also take my V shaped pillow as I can't sleep without it but again your own pillow may help.
In terms of your laptop I've seen loads of people take theirs when I've been in especially for watching films. The only thing I would suggest is get someone to bring it in once you're out of surgery and on the ward, there often aren't lock boxes big enough for a laptop on the ward so they have to go to the main hospital safe and then they take ages to come back to the ward.
Also good luck! I remember you're story from way back when I joined the forum, I really hope this gives you some relief at last!
 
Izzie you can take your own blanket to the hospital which may help with the detergent issue, I always take my own when I'm I'm. Obviously in post op etc they will use theirs but once you're settled in your bed you could swap them. I also take my V shaped pillow as I can't sleep without it but again your own pillow may help.
In terms of your laptop I've seen loads of people take theirs when I've been in especially for watching films. The only thing I would suggest is get someone to bring it in once you're out of surgery and on the ward, there often aren't lock boxes big enough for a laptop on the ward so they have to go to the main hospital safe and then they take ages to come back to the ward.
Also good luck! I remember you're story from way back when I joined the forum, I really hope this gives you some relief at last!
Thank you! I remember you from way back when as well, how are you doing these days?

I'm actually feeling so zen about surgery now. The closer it gets the more convinced I am that it's the right decision. Don't know if it's the months of CBT therapy at work or what but I'm very calm and confident now. I'll totally bring my laptop then, I imagine I won't have much energy but I have tons of audiobooks and podcasts and movies on mine to keep me at least somewhat entertained.
 

Cat-a-Tonic

Super Moderator
I agree about taking a laptop, go for it. When I was hospitalized last year I brought both my chromebook and my tablet. They definitely helped pass the time.
 
My GI nurse has finally gotten back to me and told me that Tylenol is the only thing that my GI will recommend for something other than GI pain. I have to go thru my PCD or another doctor if I need to get something stronger. Unfortunately, my PCD has been on medical restriction since early this year and I have not been able to see her due to difficulty in setting up appointments (they can only schedule mornings but afternoons are the best time for me due to work). I've been looking for a new PCD but pretty much put the search on hold since I was seeing my specialists.

Anyway, I asked the nurse again about the GI pain because it gets pretty bad sometimes and asked if I could try Donnatal elixir (if my insurance will cover it, that is!) or something else. Donnatal was what my former GI wanted to try me on before my insurance did not cover their practice anymore. Hopefully, we can come to an agreement and find something that works besides Levsin which basically acts like a placebo now. I think my body developed a tolerance to it, or something. It worked starting out but lost effectiveness (I only take it as needed, not round-the-clock).
 
I finally got back to the chiropractor last night and I feel a LOT better. My joints thank me for it - especially my neck and jaw (they were SO tight and he could feel knots in my neck). I did get very nauseous this morning around 2pm - the worst nausea I've had in a while - and I'm not sure what it's from but I took 2 Zofran ODT pills because it was really bad. Fortunately, I felt better an hour later but, during that time, I decided to watch Netflix because sleep wasn't happening with the nausea. I finally went back to sleep at 3:45am and had to wake up at 6:30am for work. It was rough - I almost called out sick but I'm trying to save up for a new car. I forced myself to get here and I feel OK right now so I'm hoping to make it the whole day. :)
 
Location
UK
Thank you! I remember you from way back when as well, how are you doing these days?

I'm actually feeling so zen about surgery now. The closer it gets the more convinced I am that it's the right decision. Don't know if it's the months of CBT therapy at work or what but I'm very calm and confident now. I'll totally bring my laptop then, I imagine I won't have much energy but I have tons of audiobooks and podcasts and movies on mine to keep me at least somewhat entertained.
I'm glad you're feeling good about the surgery, I really hope it all goes well as works well for you.

I'm doing okay, still got my NJ tube but hopefully having it changed to a GJ December/January which will be nice. Finally gaining weight which is good and doing some physiotherapy to build some strength back up too :)
 
Good news! My GI nurse wrote me back this morning and said that my GI doctor is willing to let me try Donnatal! I have a coupon in case insurance doesn't cover it, so I'm hoping this will provide me with the GI relief I need. I've been having stomach pains and cramping again today. My GI issues are definitely flaring today for some odd reason. After I wrote the last entry, I got really bad acid reflux and stomach cramps. Now, my stomach is gurgling. I'm pretty sure it's because I had apple cider for the first time yesterday since going on my low-FODMAP diet and it's not agreeing with me. It was delicious, but I will not be enjoying again any time soon - I really didn't even have that much (I think I drank like 4-6 oz).
 
I'm glad you're feeling good about the surgery, I really hope it all goes well as works well for you.

I'm doing okay, still got my NJ tube but hopefully having it changed to a GJ December/January which will be nice. Finally gaining weight which is good and doing some physiotherapy to build some strength back up too :)
I am feeling good about it! Nervous but excited!

Good thing you're gaining some weight and strength!
 
Oh man, visiting family the last days before surgery is turning out not to be the best idea. Everyone's pretty nervous and anxious for me. They're trying to pretend they're not, but they really are. And everyone's well-wishes and "we'll be thinking of you on Monday" is noooot making me feel better at all. It's making my anxiety just skyrocket and I'm suddenly thinking "oh crap I'm going to die" constantly :p

How do you guys handle anxious family members? My mother is going to be staying with me once I'm released from the hospital for about a week to help out, which I'm very grateful for, but I also suspect she'll be pretty anxious and when she's anxious she can be pretty rude to me.

I'm honestly considering just having my family drop me off at the ward and then doing the whole surgery and the preparations and admission just alone, and then they can see me after.

How have you handled similar situations with family/caregivers?
 

cmack

Moderator
Staff member
Hi Izzie,

I stood my ground and told my mother and father that it needed to be done, or else I couldn't get better and that I didn't want to live the way I was anymore. I always left for surgery, in the bed, being rolled into surgery, with the words, "I love you, see you later." It was the best I could do. I figured I would make it, and I did, odds are you will too.


I'll talk to you again soon and good luck,

Chris
 
Had a bad GI day again today. I am so over GI problems and wish that these symptoms would resolve. I had bad cramping again today right before having to go to the bathroom.

Unfortunately, I cannot try the Donnatal until Monday because it's on order at the pharmacy. I had some trouble getting the prescription filled because my usual pharmacy does not carry it due to the fact their supplier discontinued it so they can't even order it. I had to call my old pharmacy to see if they carried it and, fortunately, they can order it. Another unfortunate fact is that my insurance does not cover the cost - it would be $563 out-of-pocket. I found a coupon on the Donnatal website that brings the cost down to just $15! I am really hoping it works. I saw some promising reviews online that IBS sufferers find relief with it. :)
 

cmack

Moderator
Staff member
Hi MissLeopard,

I hope the coupon works and you can find some relief. I also hope Donnatal helps you when you get it on Monday. You can pm me any time if you need to vent or just talk.


Hoping you feel better soon,

Chris
 
I just wanted to stop in quickly to say good luck on your surgery, Izzie!! I don’t have much advice as far as your family goes, but do whatever you need to do to be the most comfortable and happy. They’re worried because they care about you, but sometimes you need to be selfish and take care of yourself. You’re the one having the surgery, so you should try to make it as good of an experience as possible. Please update us as soon as you can. I’ll be thinking about you! I have a good feeling about this surgery. <3
 
Hi MissLeopard,

I hope the coupon works and you can find some relief. I also hope Donnatal helps you when you get it on Monday. You can pm me any time if you need to vent or just talk.


Hoping you feel better soon,

Chris
The pharmacy tech ran the coupon thru with me on the phone and it worked. :) The only thing I am worried about is the phenobarbital making me tired so I plan to take the first dose while at home so I can gauge my reaction to it.

Thank you for your support. :)
 
Just took my first dose of Donnatal elixir. Man, that stuff tastes NASTY! It reminds me of the Hycet I had to take earlier this year after my tonsillectomy - too much alcohol! I had to take something for my stomach cramps again and decided that, since I was home and my family was home, I would try my first dose. It was about 15 minutes ago and I'm feeling kind of sedated and a little loopy, but nothing too bad (probably a good thing I took it around bedtime). Definitely will not take it unless absolutely necessary. I'm not sure if it's working yet because the cramps were coming in waves. I haven't felt one in a while, so maybe it's doing something? Only time will tell. I'm supposedly allowed to take the medicine up to 4 times a day (as needed).

By the way, my GI nurse is PHENOMENAL! My pharmacy called her to let her know they were unable to fill/order the Donnatal elixir. She sent me a message thru the portal and said she wanted to send the tablets but, when she called the pharmacy, they said I had transferred the prescription. I told her I was able to fill it at my old pharmacy. They mixed it on the spot when I paid for it (it came in three separate bottles). I am VERY pleased with my GI and her nurse. :)
 
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