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05-18-2013, 09:22 PM   #1
strawberrys78
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Advice on excruciating pain (Crohn's) + My story

Hello all!

I am a 20 year old female who was recently (sort of) diagnosed with Crohn's Disease. My trouble all started about a year and a half ago when I had excruciating pain in my stomach. I thought it might be gas pains so I did not see a doctor about it. Every now and then, I would get the pain. I also noticed that I had a fissure and I would notice blood on the tp whenever I had a bm. This freaked me out so I seen my doctor. She referred me to a general surgeon to get a colonoscopy done. I seen him, and he told me he would book me for a colonoscopy. About 6-7 months went by and I still did not have an appointment. By this time everything had gotten WAY worse. I developed diarrhea quite often. I would get the diarrhea sometimes after eating, sometimes when I get scared/worried/stressed, and usually when I got the bad pain in my stomach. How fast everything progressed was surprising. I went back to my family doctor to see what was up and why I didn't get an appointment yet.. it turns out the surgeon didn't even put me on the waiting list. It was his mistake. So, I was put on an urgency list and got my colonoscopy done a week later. The doc said he seen some inflammation in my small intestine and that he removed a polyp. He told me it looked like crohns and he gave me a prescription for Asacol which did not help me or do anything. I got referred to a gastroenterologist. She told me my symptoms didn't sound like Crohn's, more like IBS. So she sent me to get an MRI. (Also, I will add that the general surgeon did not even put on my file to the gastro doctor that he removed a polyp, I had to tell her about that). So, I got the MRI and she called me and told me there is DEFINITELY inflammation. And she said "we need to take care of your crohn's." So I guess now she apparently thinks it is crohn's disease. She prescribed me Imuran. So far I have been on it for one week. I start out taking one half of a pill for two weeks, then one pill for two weeks, etc. Until my dose is high enough. I also have to get blood work done every 2 weeks. So far, this drug is not helping at all. I get such excruciating pain in my stomach that I cannot walk. It is normally concentrated around the belly button but mostly below the belly button. Sometimes it feels like I am digesting tennis balls. Often, I will need to go to the bathroom and will have diarrhea, but not always. My stomach is also normally so extremely bloated that I look like I am 4 months pregnant. I have a lot of gas, I get really bad knee pain and middle back pain. I also sometimes deal with constipation. In addition, I ALWAYS feel hungry! I may eat the biggest meal ever and feel hungry a half an hour later. It is so annoying.

Sorry this is so long guys, just wanted to give you some back story. Do any of you know anything I can do to help this pain? It is just horrible when I get an attack, I can't talk, walk, or do anything besides hold myself and hope it will go away. Also, do any of you have similar symptoms or do you think this sounds like crohn's? Sometimes it is hard to get straight answers from my doctors. I decided to come on this forum to talk to people who understand. My parents, boyfriend and friends all feel bad for me but never truly understand the pain and misery I go through. When I say "bad stomach" they do not realize I feel like I am dying LOL!

Any advice or comments on anything I just ranted about would be so greatly appreciated!.. Thanks!
05-18-2013, 10:15 PM   #2
Everly
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Hello!

From what I've learned over the past few months, every patient with Crohn's Disease will have different symptoms, depending on where the inflammation is located. I've had very similar symptoms to what you've listed. I tend to get bad pains after each and every meal and it's really excruciating. I don't even remember what it's like to eat without pain. And the pain you say is generalized near your belly button, near where I usually feel mine as well.

I also tend to become hungry very quickly after meals too, I never feel quite full unless I'm extremely nauseous(Though I'm not too sure if that is a part of having Crohns or not!) I wish I could give you answers, but the inflammation could for sure point to Crohn's Disease or Ulcerative Colitis. I really hope things improve for you soon, and that you get the results you're looking for! I know how awful it is to go without answers, and all of us are here to support you!
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05-18-2013, 11:20 PM   #3
Mehita
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Unfortunately, it can take Imuran anywhere from two to six months to work and that's probably why you're not finding relief. I'm surprised you weren't given prednisone to get the inflammation under control. I would call your GI and tell her about the pain.

We're biopsies taken when you had your scopes?

I hope you get relief soon!
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05-19-2013, 05:34 AM   #4
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Has all your blood work come back ok? Everytime i see imuran and horrible pain it makes me wonder.. i had an allergic reaction to it and it gave me severe pancreatits and became life threatning cause i thought it was just normal crohn's pain.
05-19-2013, 11:00 AM   #5
strawberrys78
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Unfortunately, it can take Imuran anywhere from two to six months to work and that's probably why you're not finding relief. I'm surprised you weren't given prednisone to get the inflammation under control. I would call your GI and tell her about the pain.

We're biopsies taken when you had your scopes?

I hope you get relief soon!
Thanks! Gosh it sucks that it takes that long for it to work. I am only on it 11 days and I have an appointment with my GI July 2nd, which is when she will decide to keep me on it or not. Kind of wondering about that now since it could take longer than that to work!

My GI suggested prednisone but told me that she is going to put me on Imuran instead because I am a "young female" and prednisone can cause puffy face and water retention and that I would not be able to stay on it for extremely long periods of time.

And as for the biopsies, he said he would take them, but I honestly never heard anything about them or the polyp after the fact!

Thanks for the reply
05-19-2013, 11:06 AM   #6
strawberrys78
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Has all your blood work come back ok? Everytime i see imuran and horrible pain it makes me wonder.. i had an allergic reaction to it and it gave me severe pancreatits and became life threatning cause i thought it was just normal crohn's pain.
I am only on the medication for 11 days so far. I do not get my first blood test done until this Thursday. Wow that is pretty scary. It is now 1:00pm where I live, and 8:00 this morning I woke up with incredibly intense pain. Definitely one of the worst pains I have ever felt. I went to the bathroom to see if I could get some relief and I almost fainted. I had to run out in my room and wake my boyfriend up because I was so scared. I eventually went to sleep but it took a long time.

This only happened to me a couple of times. One being when I was doing the colonoscopy prep. The first night of the prep I took the ducolax tablets I was directed to take and I woke up with such bad pain that I went to the bathroom, got really bad d, and I ended up then passing out and rolling off my mom's bed. I went to the hospital and they told me that first it was a severe reaction to pain. Then as they were about to release me I almost fainted again. They kept me in all night and then proceeded to pin the problem on dehydration... personally, I don't think they knew what they were doing at all!

Pretty scary stuff, nonetheless. Thanks for the reply!
05-19-2013, 12:02 PM   #7
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Hi there, I had tummy pain like someone had kicked me in the stomach , until I was diagnosed with Crohns. Then it was different meds with unwanted side effects which eased that.Currently on steroids,Prednisolene. It takes time to get the right diagnosis and treatment.It could be colitis which is easier to treat. Let's hope so!!! Wishing you well again soon.Let me know how you are.Yes the not knowing is very scary. You will feel better once treatment is sorted.
05-19-2013, 12:09 PM   #8
strawberrys78
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Hi there, I had tummy pain like someone had kicked me in the stomach , until I was diagnosed with Crohns. Then it was different meds with unwanted side effects which eased that.Currently on steroids,Prednisolene. It takes time to get the right diagnosis and treatment.It could be colitis which is easier to treat. Let's hope so!!! Wishing you well again soon.Let me know how you are.Yes the not knowing is very scary. You will feel better once treatment is sorted.
I can't even describe the pain I get, it's like a feeling comes over my whole body and I feel weak, I get really bad pain below my belly button in my lower stomach.. and also my stomach makes A LOT of noises!! Very loud ones lol. Thanks very much for the support! So nice to know that there are people out there that understand what I am going through.
05-19-2013, 12:21 PM   #9
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There is a chance that the extreme pain you are getting is related to a stricture or narrowing - when food tries to go through an area it may be stretching...


Hope you get some answers soon, and I too would call the doctor about the pain.

Oh, and that comment about prednisone - wth? Sounbds like your doctor is more concerned about looks than health.....the effects of pred will go away once you stop - the damage you could be doing to yourself by waiting to see if the imuran works is much worse in my opinion!
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05-19-2013, 12:24 PM   #10
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Hi there, you will be all out of sorts until treatment is sorted. Bowel problem makes for lots of tummy rumblings and passing wind too. Very uncomfortable and embarrassing. Leave out foods that you know will aggravate it eg. for me, that means rich or creamy sauces. Eat as well as you can though. Best wishes.
05-19-2013, 12:40 PM   #11
Mehita
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Like the others have said, the pain you're feeling could be many things and you need to try and find out more details and how you can treat it now. You do not want to end up in the hospital with a perforated bowel or pancreatitis. Yes, pred has side effects like your GI described, but under treated Crohn's is nothing to mess with either.

I'd call tomorrow and tell her about the pain, ask why you're not being treated for the inflammation, and if you have a definitive diagnosis of Crohn's. In the meantime, you could experiment with a liquid diet to see if that brings any relief. If you have a stricture or a lot of inflammation going on, it might help. It just worries me that you're not being treated for this pain.

And while you have them on the phone, you may as well ask for copies of all your labs and reports.

Keep us posted...
05-19-2013, 01:21 PM   #12
strawberrys78
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Like the others have said, the pain you're feeling could be many things and you need to try and find out more details and how you can treat it now. You do not want to end up in the hospital with a perforated bowel or pancreatitis. Yes, pred has side effects like your GI described, but under treated Crohn's is nothing to mess with either.

I'd call tomorrow and tell her about the pain, ask why you're not being treated for the inflammation, and if you have a definitive diagnosis of Crohn's. In the meantime, you could experiment with a liquid diet to see if that brings any relief. If you have a stricture or a lot of inflammation going on, it might help. It just worries me that you're not being treated for this pain.

And while you have them on the phone, you may as well ask for copies of all your labs and reports.

Keep us posted...
Thanks! She told me that Imuran would help the inflammation by suppressing my immune system. I really have no idea what I am doing lol. Which is scary because like you said I do not want to end up in the hospital with those problems or even get a bag on my side. Also, are they allowed to give me copies of my labs/reports? I'm clueless when it comes to all of this. I just want to be healthy and I want to prevent future problems/cancer, etc.
05-19-2013, 01:22 PM   #13
strawberrys78
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Also.. I have to ask: Will the blood testing that I am getting done every 2 weeks indicate problems such as a perforated bowel or pancreaitis, etc.?
05-19-2013, 02:31 PM   #14
Mehita
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Also.. I have to ask: Will the blood testing that I am getting done every 2 weeks indicate problems such as a perforated bowel or pancreaitis, etc.?
The blood tests monitor whether you are reaching theraputic levels and if the drug may be causing causing problems for your liver and pancreas. So, yes. I am so surprised your doctor didn't tell you all this. Imuran is a fairly strong drug.

Someone suggested this link for me when my son started Azathioprine (aka Imuran) last week. Very helpful.

http://www.crohnsforum.com/showthrea...t=instructions

And, yes, you have a right to copies of all your medical records. They're good to have in case you switch doctors and for you to see patterns in you lab work, etc.

You might want to check out the Imuran support group too:
http://www.crohnsforum.com/forumdisplay.php?f=64
05-19-2013, 02:46 PM   #15
strawberrys78
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There is a chance that the extreme pain you are getting is related to a stricture or narrowing - when food tries to go through an area it may be stretching...


Hope you get some answers soon, and I too would call the doctor about the pain.

Oh, and that comment about prednisone - wth? Sounbds like your doctor is more concerned about looks than health.....the effects of pred will go away once you stop - the damage you could be doing to yourself by waiting to see if the imuran works is much worse in my opinion!
Yeah. It would almost make sense that it would be due to a narrowing.. because if I have that much inflammation then it obviously will hurt to digest my food. And about the whole doctor thinking about my looks more than health.. I know. It kind of took me off guard. I mean I did not really want to go on prednisone.. but I don't think she realizes how bad this really is.
05-19-2013, 02:50 PM   #16
strawberrys78
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The blood tests monitor whether you are reaching theraputic levels and if the drug may be causing causing problems for your liver and pancreas. So, yes. I am so surprised your doctor didn't tell you all this. Imuran is a fairly strong drug.

Someone suggested this link for me when my son started Azathioprine (aka Imuran) last week. Very helpful.

http://www.crohnsforum.com/showthrea...t=instructions

And, yes, you have a right to copies of all your medical records. They're good to have in case you switch doctors and for you to see patterns in you lab work, etc.

You might want to check out the Imuran support group too:
http://www.crohnsforum.com/forumdisplay.php?f=64
My doctor is situated about 3 hours away from me. I was living there to go to school, and then I moved home for the summer but anyways I am back in town again now. After I got my MRI done, weeks went by and I did not hear anything. I had to call her myself to see what was going on. She called me and prescribed me this drug (Imuran) over the phone. She told me about the side affects of vomiting, stomach pain, small increase of lymphoma, pancreaitis, etc.. and it scared me! She basically told me that it will suppress my immune system which would help the inflammation. It was hard to hear it all over the phone, because there was so many things I wanted to know and it just happened all of a sudden. Took me by surprise because I did not have a doctor that would talk over the phone like to that extent without a visit. Tomorrow (Monday) is a holiday where I am from so when I call her Tuesday what should I say to her? Just tell her about the pain I had? (She probably won't get back to me right away.. her office is horrid for that!!)

Thanks for replying again.
05-19-2013, 02:58 PM   #17
Honey
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Hi there,
I had pancreatitis after beginning Anzaoprine,I had to see the doctor immediately. That kind of pain prevents you from sleeping so do not leave it, but phone the doctor or emergency !!! Blood tests are part of being on these meds to check liver and kidney function.You are in my thoughts.
05-19-2013, 03:00 PM   #18
strawberrys78
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Oh and I also have to ask is an obstruction and stricture the same thing? When she told me my results from the MRI she said there was no obstruction or bowel back up but definite inflammation. Can they develop quickly?
05-19-2013, 08:08 PM   #19
Mehita
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A stricture is a narrowing in your intestine. Sometimes it can narrow due to inflammation or sometimes due to scar tissue building up. If inflammation is the cause, then you can take meds to reduce inflammation. If the stricture is due to built up scar tissue, then the only option is surgery. MRI's are usually used to determine if a stricture is due to inflammation or scar tissue.

An obstruction is when that narrowed area becomes partially or fully blocked. From what I hear, full obstructions can be VERY painful and you will not even question going to the ER.

Not sure how quickly they can develop. I just know my son's built up over a year's time due to under treatment.

Hope that helps!
05-19-2013, 09:55 PM   #20
strawberrys78
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A stricture is a narrowing in your intestine. Sometimes it can narrow due to inflammation or sometimes due to scar tissue building up. If inflammation is the cause, then you can take meds to reduce inflammation. If the stricture is due to built up scar tissue, then the only option is surgery. MRI's are usually used to determine if a stricture is due to inflammation or scar tissue.

An obstruction is when that narrowed area becomes partially or fully blocked. From what I hear, full obstructions can be VERY painful and you will not even question going to the ER.

Not sure how quickly they can develop. I just know my son's built up over a year's time due to under treatment.

Hope that helps!
That definitely helps! Thanks so much for taking the time to reply. I appreciate it
05-21-2013, 02:29 PM   #21
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Hi there,
just wondered if you are feeling any better today? Have you made any progress in pain relief? I hope all goes well for you. Best wishes.
05-21-2013, 02:58 PM   #22
strawberrys78
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Hi there,
just wondered if you are feeling any better today? Have you made any progress in pain relief? I hope all goes well for you. Best wishes.
Aw thanks! I haven't had any pain so far today, just a lot of stomach rumbling as usual. I find when the pain happens it normally lasts anywhere from 15 mins to a couple of hours. It almost comes in "waves." So far today I haven't gotten any pain, hopefully it stays that way. Thanks so much for checking in
05-21-2013, 03:22 PM   #23
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Hi strawberrys78, Sorry to hear of your diagnosis. All your symptoms sounded to me just like crohn's (I've had it 29 yrs with many surgeries). I was on many kinds of drugs but the only thing that helped was the prednisone and I took it for 10 years solid at varying dosages. You need to keep a food & drink diary, at least for 30 days, to see what aggravates & causes pain. Many times I have to go on a bland diet for a few days to get things under control and also fast sometimes for a weekend to give the bowel a rest. I went many years with the pains you are having and no two people are exactly alike so it is kind of trial & error on what you can eat & do. This is a really good newsletter to subscribe to: [email protected] and the Crohn's & Colitis Foundation website also has lots of good info as well. I wish you luck and hope you get things under control. Find a good gastroenterologist who works with crohn's patients and who listens to you!! We have to take control of our own medical needs in order to get better (it took me several doctors to find the right one).
05-21-2013, 03:26 PM   #24
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Another word of advise: when you have debilitating pain don't ignore it - seek medical advise!! I ignored mine for a very long time until finally my intestines burst and almost killed me. I was full of infection from the crohn's being untreated or improperly treated because I wasn't disclosing all my pains. Be very aware!
05-21-2013, 05:38 PM   #25
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Hi there, Glad to hear you are having some respite.Crohns pain can vary in intensity, so have it checked. My pain was constant for a year until diagnosis, then meds.I could not tolerate .In short, infliximab infusions every 8 weeks reduced the inflammation. We are all different and respond as individuals. That constant pain has gone! It is a fickle illness. N.H.S. choices is a great United Kingdom web site for the physiology ,,symptoms and meds for Crohns.Let me know how you are doing.:
05-21-2013, 05:42 PM   #26
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Hi there, Glad to hear you are having some respite.Crohns pain can vary in intensity, so have it checked. My pain was constant for a year until diagnosis, then meds.I could not tolerate .In short, infliximab infusions every 8 weeks reduced the inflammation. We are all different and respond as individuals. That constant pain has gone! It is a fickle illness. N.H.S. choices is a great United Kingdom web site for the physiology ,,symptoms and meds for Crohns.Let me know how you are doing.:

Last edited by Honey; 05-21-2013 at 05:45 PM. Reason: sorry about duplicate from my phone.intr
05-21-2013, 06:51 PM   #27
strawberrys78
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Another word of advise: when you have debilitating pain don't ignore it - seek medical advise!! I ignored mine for a very long time until finally my intestines burst and almost killed me. I was full of infection from the crohn's being untreated or improperly treated because I wasn't disclosing all my pains. Be very aware!
Thanks very much!! I have only seen my GI once so far, and I don't get to see her again until July 2nd. I get so scared that something like that will happen to me. I try to tell her how excruciating my pain is and how often I have it.. I hope next time I see her that I will get more answers. How am I supposed to know if I am on the verge of something so serious happening to me? I'm also scared of going on drugs like that too, even though I am on Imuran, do you think it is enough?... I've never been on drugs for anything in my life really and I am only 20. I don't know, it's all just so scary for me on both sides. I don't want anything bad to happen to me! And I also don't trust doctors the most either.. I've heard one too many horror stories. I probably sound like a cry baby lol, but this is all so new to me and I just want to take care of my body.. I hope I never have to get any surgeries or anything. I also deal with A LOT of stress as well, which doesn't help any.
05-21-2013, 06:53 PM   #28
strawberrys78
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Hi there, Glad to hear you are having some respite.Crohns pain can vary in intensity, so have it checked. My pain was constant for a year until diagnosis, then meds.I could not tolerate .In short, infliximab infusions every 8 weeks reduced the inflammation. We are all different and respond as individuals. That constant pain has gone! It is a fickle illness. N.H.S. choices is a great United Kingdom web site for the physiology ,,symptoms and meds for Crohns.Let me know how you are doing.:
Aw thanks! I hope someday that I can find a treatment to diminish my constant pain.. if I go a day without pain it is like a miracle. I have a little bit of tummy pain now not as intense as some of the bad pains but it is still uncomfortable. I'm in Canada, but I will still definitely check out the website you suggested. Thank you for being so caring! So nice that people like you still exist in the world, lol.
05-25-2013, 06:03 PM   #29
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Hi there,
Just sending you my best wishes and hope you are feeling better. It does take time for a proper diagnosis: I can assure you will feel a lot better when they find the cause. Once treatment starts it will be less scary!! I know, I have shed a few tears myself.
05-26-2013, 01:31 PM   #30
strawberrys78
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Hi there,
Just sending you my best wishes and hope you are feeling better. It does take time for a proper diagnosis: I can assure you will feel a lot better when they find the cause. Once treatment starts it will be less scary!! I know, I have shed a few tears myself.
Thank you!! I feel crappy (no pun intended lol) every single day. My dosage of imuran has been increased to one full pill now instead of half of a pill. I am feeling really sick today. For breakfast I had an egg cooked in extra virgin olive oil on whole wheat toast with a small amount of butter and sliced cheese. Then for a little lunch I had organic probiotic greek yogurt. Then, about a half an hour ago I had my supper (or dinner, whatever you prefer).. I had 2 cooked carrots, and my parents baked a whole chicken so I took the skin off and ate some of the white chicken breast and had a glass of water. Now I have the worst diarrhea ever. It is soooo watery and pretty yellow and really burny. Don't feel well at all. I don't know anything I ate that could have caused it, I have ate all of those things plenty of times before and never got sick. Maybe I am just going through a flare.. I don't know. I am getting so discouraged. I made an appointment with my family doctor to see her on Wednesday because I want her opinion on the imuran and my test results, etc. I seem to trust her opinion more than my GI's (whom I have only seen one time). Might even end up being referred to a new GI. Who knows. I just really want some help. Any advice to help get me through this flare? I normally have really bad stomach pain, today it's just mild stomach pain and I had one normal BM earlier and lots of diarrhea now. Sad times, lol.
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