Crohn's or IBS

[Daunting]

Hi.

This will be my first post on this forum.
About 6 months ago I started having strange rumblings in my lower intestines and pain on my RLQ and LLQ as well as a few inches by the belly button. I had some diarhea in June that went away when the doctor prescribed entocort.
I have been to two gastroenterologists, the first thought I had crohn's due to the colonoscopy, and prescribed pentasa and entocort. The second does not know as of yet. He reviewed my tests results from the colonoscopy and found that the results said the biopsy of the terminal iliem came back non specific inflammation with no granulamau's (not sure how that is spelled), and my barium follow through came back normal, my blood tests came back with minor inflammation. I am being sent for more tests in the next coming months. He thinks it could be IBS because of the lack of findings. I have not had diarhea since the new doctor started me on metamucil but the pain still comes and goes, some days more so than others. He has reduced my entocort to slowly and now I am on  1 pill per day. Nothing really changed since the meds except the lack of diarhea. I feeling depressed with no answer I still don't know what is wrong with me. Oh I was diagnosed with diverticulosis and (what was thought to be IBS in 2005).  

Can someone tell me what does granulauma's mean and why is it so important. I am considering asking the doctor for the procedure in which i swallow the camera.  Is crohn's or IBS so hard to diagnosis..

Thank you, any input will help.    

[patient915]

Please post your question as it's own post.

[vampirevolkova]

in 2006 I was diagnosed with Crohn's after being in hospital for 4 months very very ill.. I was on Prednisolone for a while then Asacol and my symptos were improving, not totally but not as bad. Then in 2008 I was undiagnosed and told it was IBS.  I have been on antispasmodics now for over 2 years and my symptoms are no better and I am in pain daily... I have loose stools and vomit a lot from time to time, I have been told I have to stay on Omeprazole for life (oh the joys)

For my bowels, my recent scans and cameras are all negative for crohns but the symptos in my doctors words are "typical of Crohns" yet he treats me for IBS with meds that do not work..... Could the specialist be wrong?

This is getting me down so much, I am not sleeping y appetite is coming and going and it is really depressing me, I am unable to work right now and it is driving me crazy! I would love to be able to work and live a normal life!

[patient915]

I would get a second opinion because inflammation is not normal for IBS.  I've had the pill cam.  It's huge but I was able to swallow it without gagging or anything.  You just have to not think about how huge it is and just quickly pop it in your mouth with some water and swallow it quickly.  If you sit there and think about it too much then it will be harder to swallow.

[Daunting]

Just came back from my gastro doctor who says he is 99.9% sure its IBS, but he is sending me for the pill cam just to be completely sure. He has prescribed dicetel to help with my abdominal pains. He said the only thing that concerns him is my weight lost but it could be phycological as well. I am scared to eat because of the pain and scared to make things worse. All my other tests came back fine. Only thing that concerns me is the inflamamtion he found in my colon and ileum, but he said it is normal for IBS and that none of the biopsies came back with either granulaumo's or signs or colitis or crohn's. Lets hope the pill cam results come back negative as well. has anyone you know gone through the pill cam? Is it hard to swallow?/

Thanks.

[patient915]

I'm actually not sure if you can have inflammation and not have IBD.  I believe that you can though, but I'm not 100% sure on that.  The rest of the small intestine is never viewed on a colonoscopy.  The only way to view the small intestine is through a smart pill and that is not very accurate.  Usually if there is a problem/no problem in the terminal ileum, it is the same for the rest of the small intestine.  That's good that you are seeing a psychologist.  Dealing with medical problems, especially when you don't know what is going on, is very stressful and hard.  Don't feel ashamed that you have to do this, I believe it is a good idea.

[Daunting]

I agree with you completely. I thought for sure the biopsy would of given me a definiete answer. And This doctor is actually my third opinion. My family doctor also agreed that the biopsy doesn't show anything and feels that I have IBS and not crohn's
Can you have inflammation and not have IBD? I have a friend who has had the same thing as me inflammation in her ileum and was told that it was IBS. I've also asked for another colonoscopy from this new doctor and he has declined the procedure he feels the procedure is to evasive at this stage. But maybe now that I am seeing him a second time he might change his mine. If the colonoscopy reaches the terminal ileum but what about the rest of the small intestine shouldnt that be viewed? Sorry for rambling on, I'm still really nervous. I have set up an appt with our local hospitals phycolology department, I know I am not mental but I am having a hard time dealing with this. I keep praying that all in all in the end that this is just IBS and we can get it under control.

Thanks again for your info

[patient915]

I would recommend getting a third opinion because biopsies from a colonoscopy are definite for chrons or not; there shouldn't really be any middle ground.  I'd say that some people with chrons have abnormal blood tests but not all do (so having good blood tests doesn't exclude chron's).  Because they were able to reach the terminal ileum in your colonoscopy, I don't know if the smart pill would show anything but that is something you can talk to your doctor about.

[Daunting]

Thank you for the reply,

I am just so worried I feel as if no one can tell me for sure. The medications did help somewhat, the diarhea calmed down but the metamucil made me feel better or it could of been the combination of both. I started reducing the entocort from 2 pills now to 1, a day before i started reducing it to 1 i started feeling sick again, more pain than normal usually right before i would defecate, and overall discomfort through out the day more so than before. So really I can't answer if the pills helped or not, it could be a coincidence or it might not be, it took a while before the diarhea I had in June stopped. But I do remember before I started taking entocort I had less tummy pains, but that also could of been a coincidence. I've scheduled an appointment with my gastroenterologist on October 15, to tell him about how I am feeling now. The secretary told me that the my blood tests all came back good. Is that normal for people to have good blood tests? and have crohn's. The main reason I want to ask for the procedure that you swallow the pill is because I am thinking that all this trouble is coming from my small intestines and it would be nice to have a good view of the problem zone.
Thanks for the post.

[patient915]

Welcome to the gastroenterology community!  A granuloma is basically just a small nodule.  It can be a clue to chrons disease but not everyone with chrons disease has granulomas.  The smart pill (when you swallow the camera) is a good test when you are trying to view parts of the body that a scope (colonoscopy or endoscopy can't reach).  This would mainly be the small intestines.  I doubt the smart pill would find anything that the colonoscopy wouldn't show.  I am not a doctor so I can't tell you whether it is chron's or IBS, but a good question to ask is whether the medications for chron's helped your symptoms.  I would recommend trying natural fiber instead of metamucil as that might help more.  Good luck.