# Advice on excruciating pain (Crohn's) + My story



## strawberrys78 (May 18, 2013)

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!


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## Everly (May 18, 2013)

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! :hug:


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## Mehita (May 19, 2013)

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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## staloffn (May 19, 2013)

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.


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## strawberrys78 (May 19, 2013)

Mehita said:


> 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 :smile:


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## strawberrys78 (May 19, 2013)

staloffn said:


> 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!


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## Honey (May 19, 2013)

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.


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## strawberrys78 (May 19, 2013)

Honey said:


> 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.


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## Lisa (May 19, 2013)

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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## Honey (May 19, 2013)

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.


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## Mehita (May 19, 2013)

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...


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## strawberrys78 (May 19, 2013)

Mehita said:


> 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.
> 
> ...


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.


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## strawberrys78 (May 19, 2013)

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.?


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## Mehita (May 19, 2013)

strawberrys78 said:


> 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/showthread.php?t=40438&highlight=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


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## strawberrys78 (May 19, 2013)

pasobuff said:


> 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.
> ...


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.


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## strawberrys78 (May 19, 2013)

Mehita said:


> 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.
> 
> ...


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.


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## Honey (May 19, 2013)

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.:yfaint:


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## strawberrys78 (May 19, 2013)

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?


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## Mehita (May 19, 2013)

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!


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## strawberrys78 (May 19, 2013)

Mehita said:


> 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.
> 
> ...


That definitely helps! Thanks so much for taking the time to reply. I appreciate it


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## Honey (May 21, 2013)

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.


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## strawberrys78 (May 21, 2013)

Honey said:


> 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


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## rdrakester (May 21, 2013)

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:  LivingWithCrohnsDisease@everydayhealth.com  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).


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## rdrakester (May 21, 2013)

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!


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## Honey (May 21, 2013)

:getwell: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.::Flower:


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## Honey (May 21, 2013)

:getwell: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.::Flower:


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## strawberrys78 (May 21, 2013)

rdrakester said:


> 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.


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## strawberrys78 (May 21, 2013)

Honey said:


> :getwell: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.::Flower:


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.


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## Honey (May 25, 2013)

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.


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## strawberrys78 (May 26, 2013)

Honey said:


> 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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## Honey (May 26, 2013)

Hi there, 
I understand: when you have a flare, even plain toast will set it off!  Be careful of whole wheat bread ersonally, I find it too heavy for my tummy. Yogurt too has bacteria in it which gave me cramping tummy pains, but that is just my personal experience. As I said, we are all individuals. I had problems with meds so I am now doing well on Infliximab infusions, every 8 weeks. Yes, it is discouraging and I can empathize with you~ you will get better, keep that in mind!!!! Seeing a specialist whom you can voice all your concerns to will help. We have a different system here. I only see my Consultant at the hospital and can phone his secretary when I start going wrong!! I then get an emergency appointment~ I am indeed blessed that way. I know it is not the same for everyone in the U.K. Try and get as much rest as possible ,as I know you will not be getting a full nights sleep. I do not know anything about Imuran as that is one I have not had. I have however, been on steroids which eased the symptoms but that is not meant to be long term. I am currently on Prednisolene but gradually reducing the doze. Let me know how you get on Wednesday. Thinking of you.


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## strawberrys78 (May 26, 2013)

Honey said:


> Hi there,
> I understand: when you have a flare, even plain toast will set it off!  Be careful of whole wheat bread ersonally, I find it too heavy for my tummy. Yogurt too has bacteria in it which gave me cramping tummy pains, but that is just my personal experience. As I said, we are all individuals. I had problems with meds so I am now doing well on Infliximab infusions, every 8 weeks. Yes, it is discouraging and I can empathize with you~ you will get better, keep that in mind!!!! Seeing a specialist whom you can voice all your concerns to will help. We have a different system here. I only see my Consultant at the hospital and can phone his secretary when I start going wrong!! I then get an emergency appointment~ I am indeed blessed that way. I know it is not the same for everyone in the U.K. Try and get as much rest as possible ,as I know you will not be getting a full nights sleep. I do not know anything about Imuran as that is one I have not had. I have however, been on steroids which eased the symptoms but that is not meant to be long term. I am currently on Prednisolene but gradually reducing the doze. Let me know how you get on Wednesday. Thinking of you.


Yeah, I'm all the way in Canada lol so things are probably quite different here!! Do anyone even know what provokes a flare or do it just come on for no reason? And that sucks about whole wheat bread.. I try to eat the healthiest alternative but then it ends up not being the healthiest for those with Crohn's.. stumps me lol!!! Thanks for being so caring, again.


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## Mehita (May 26, 2013)

Have you been tested for Celiac disease?


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## strawberrys78 (May 27, 2013)

Mehita said:


> Have you been tested for Celiac disease?


I had some bloodwork done that had something there for celiacs disease. And I was on a gluten free diet so I don't think it is celiacs disease!


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## Honey (May 31, 2013)

Hi there. 
How did you get on at the doctors on Wednesday? Are you feeling any better? I hope the doc was helpful. Once you know the diagnosis and get the right medication I promise you.I had severe pain too  for a long time. I am now doing well and pain free on Infliximab infusions Thinking of you.


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## strawberrys78 (May 31, 2013)

Well, the doctors appointment didn't really help much. But a couple of nights ago I had really bad pain around my ribs which I knew wasn't from crohns and it got really bad so I went into the emergency room. They gave me a shot of morphine and told me he thinks it is my gallbladder. He also tried to give me prednisone and flexeril (spelling?) which I told him I didn't want to take without the advice of my GI. I also apparently had a water infection which I thought was weird because I had no symptoms like usual. He gave me cipro for that which is apparently really harsh on the stomach. So I went to my doctor and she told me not to take the cipro and she repeated my blood work and urine test. So long story short it could be the imuran giving me side affects or my gallbladder. I am booked for an ultrasound now and may have to get a scope. I also had such bad vomiting for a couple of days that I couldn't eat anything. Hoping to get something figured out soon.


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## Honey (May 31, 2013)

Hi there, 
I sent a message to you 10 minutes ago but it seems to have got lost in cyberspace!! It does sound like the side effects of one of your meds. I know I had severe tummy pain and vomiting on a drug for Crohns; it took a few weeks before I felt better after coming off it.  Take plenty of rest when you feel tired and drink plenty when you are eating little. That will keep you from becoming dehydrated which makes you feel sqeamish and very sick. I do hope you get a diagnosis soon as that is half the battle!!!  You will feel less frightened and once the right meds is found for you, more comfortable too.  It is not easy.  Keep me posted as to how you are. I am off on a days Art course tomorrow as I am a keen Artist and Photographer. I would not have been able to do that 3 months ago!!!   So you see, you will get over this hurdle.  Thinking of you.


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## strawberrys78 (May 31, 2013)

The doctor told me it is definitely crohns but treatment has slowed now because they have to rule out the gallbladder issue. Thanks so much for thinking about me


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## Jeffgotcrohns (May 31, 2013)

Did you have any stool samples taken? I recently had a severe salmonella infection and it went undiagnosed for months, I had three stool samples that came back negative and they thought it was IBD the entire time. I had a lot of blood in my stool, gas, cramping, joint and back pain, as well as nausea, dehydration and rapid weight loss. It wasn't till I was admitted to the hospital and they did extensive inspection of my stool sample that they found I had salmonella. If you can get put on cyproflaxin and flagyl, both drugs together can wipe out a number of intestinal bacteria infections.


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## ***Lisa*** (Jun 1, 2013)

Hi Strawberry:

My daughter is 20 and has had Crohns for five years, been on pred and, of other meds but is only taking vitamins now. Consider a natural approach but be aware that your GI will not encourage that course of action. We work with her GI and a natural doctor to control her symptoms.

All the best to you!

Lisa


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## LYNNSHINDIG (Jun 1, 2013)

I have found anti-inflammatory tablets and heat - like a hot water bag helps until it subsides.  For the running to the loo constantly, I take kaolin and morphine medicine - non prescription and acidophillus probiotics every morning.  These things do help.  Smoking tobacco is a disastrous as is overindulgence of alcohol.  Caffeine appears to be a trigger as well.  Good luck!!

Lynn:smile:


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## strawberrys78 (Jun 1, 2013)

Jeffgotcrohns said:


> Did you have any stool samples taken? I recently had a severe salmonella infection and it went undiagnosed for months, I had three stool samples that came back negative and they thought it was IBD the entire time. I had a lot of blood in my stool, gas, cramping, joint and back pain, as well as nausea, dehydration and rapid weight loss. It wasn't till I was admitted to the hospital and they did extensive inspection of my stool sample that they found I had salmonella. If you can get put on cyproflaxin and flagyl, both drugs together can wipe out a number of intestinal bacteria infections.


I actually got the stuff for a stool sample back in December and I just didn't ever do it. I definitely should have but then when I got the crohns diagnosis and nobody pushed for the sample I gave up on it! Maybe I should go ahead and do it. Thanks for sharing


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## strawberrys78 (Jun 1, 2013)

***Lisa*** said:


> Hi Strawberry:
> 
> My daughter is 20 and has had Crohns for five years, been on pred and, of other meds but is only taking vitamins now. Consider a natural approach but be aware that your GI will not encourage that course of action. We work with her GI and a natural doctor to control her symptoms.
> 
> ...


I do like the natural approach. All kinds of medications definitely scare me. Thanks for sharing and replying


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## strawberrys78 (Jun 1, 2013)

LYNNSHINDIG said:


> I have found anti-inflammatory tablets and heat - like a hot water bag helps until it subsides.  For the running to the loo constantly, I take kaolin and morphine medicine - non prescription and acidophillus probiotics every morning.  These things do help.  Smoking tobacco is a disastrous as is overindulgence of alcohol.  Caffeine appears to be a trigger as well.  Good luck!!
> 
> Lynn:smile:


Awesome, thanks! I like to use a heat bag as well.


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## Honey (Jun 1, 2013)

Hi there, 
  I am sorry to hear that it is Crohns, but now some progress in your treatment can begin.  Yes I understand them waiting until gall bladder problem has been ruled out.  I was off Infliximab for several months whilst my Consultant investigated the reason for weakness and pain in my limbs. An aside, Crohns was diagnosed from my stool sample : inflammation levels I believe.  I am asked for one when there are any changes in how I am feeling.  So it is important to do that when asked. Bloods are always taken at every visit: again inflammatory markers are looked at. I know what all these figures stand for now!!!  I hope I have not bored you with this info.  I hope you are feeling a bit better today. Remember to drink plenty.  I keep a bottle of flavoured water beside my bed, so when I waken up thirsty, it is there.:uk_flag:


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## strawberrys78 (Jun 1, 2013)

Honey said:


> Hi there,
> I am sorry to hear that it is Crohns, but now some progress in your treatment can begin.  Yes I understand them waiting until gall bladder problem has been ruled out.  I was off Infliximab for several months whilst my Consultant investigated the reason for weakness and pain in my limbs. An aside, Crohns was diagnosed from my stool sample : inflammation levels I believe.  I am asked for one when there are any changes in how I am feeling.  So it is important to do that when asked. Bloods are always taken at every visit: again inflammatory markers are looked at. I know what all these figures stand for now!!!  I hope I have not bored you with this info.  I hope you are feeling a bit better today. Remember to drink plenty.  I keep a bottle of flavoured water beside my bed, so when I waken up thirsty, it is there.:uk_flag:


Yes, when I got my colonoscopy done they thought it looked like crohns, then when I had my MRI done and plenty of blood work they came to the conclusion that it is definitely crohns! I've been feeling pretty good today. Although I just had BBQ and now I'm feeling a little bloated and gassy. :/ thanks again


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