input from those with UC vs. Crohn's diagnosis

Thought I should add, my pouch apparently looks great. The Flagyl and Prednisone have made the last month wonderful with my pouchitis as well. No concerns there.

I have not had the same issues as you, but thought I would offer my thoughts. I have had a number of episodes where the idea of Crohn's was brought up. I say "idea" because there never has really been convincing evidence, and usually my signs and symptoms had other reasonable explanations. One episode was pouchitis with typical Crohn's-like cobblestoning of the mucosa. At the time, I had been taking some NSAIDs long term. Once that was stopped, a long course of Flagyl, and a short course of prednisone, things simmered down. I have not had upper GI studies, other than liver/gallbladder, due to elevated liver enzymes.

In the long run, it really does not matter much to me what it is called. I am on maintenance medication for my enteropathic arthritis, so if there was Crohn's, it probably is covered.

As to your assumed adhesions, sadly, no there really is no good way to visualize them without actually looking into the abdomen. The blood supply to them is nil, so contrast does not go there. If they do show up on imaging, it is only because of what effect they might have on other structures (such as causing an obstruction). They are diagnosed by ruling out everything else. Treatment is usually conservative based on presentation, and surgery is only if there is a surgical emergency or chronic obstructions that make your life intolerable.

How can two good GIs come up with two different opinions? Well, one is looking at the information at hand, the other at all the information. Those biopsies are important, but the first guy was treating the urgent situation and in that situation, things can present differently. It is difficult to really make a good diagnosis while the situation is acute. It does not change the current treatment, so it is just speculation.

IF this is Crohn's, there is no solid answer whether or not you'll remain in remission, or enter another relapsing flare without maintenance meds. That is the nature of all IBD, unpredictable relapse and remission. It is not unheard of for a diagnosis to change from UC to Crohn's even decades later. Again, it all depends on whether the disease progresses or not. But, generally, it seems that Crohn's tends to continue to relapse unless there is treatment.

I know that seems like a crap answer, and pretty much no answer, but they just have not unraveled the mystery yet.

Here's hoping this is a fluke, and if it is adhesions, they stay out of your way and let you be for a long time!

Jan

Thank you Jan for your insight and confirmation that at this point, there is not much else that can be done. I know that I'm working with a great GI team and surgical team with lots of knowledge, but not having a clear answer is difficult to accept and getting frustrating to explain to people. Basically, they are saying the same thing as you...Let's hope its a fluke and doesn't come back :-)

I hear ya! People assume that with all the modern advances medical science has, they should be able to diagnose/treat/cure practically anything.

But, the reality is that the better you understand the body and physiology, the more you understand that there is so much more left to know! The gut is one of the most complex organ systems there is. The heart and brain are more critical elements, but since they are confined to a small space, they are more readily studied and treated (but not always successfully...)

Factor in unpredictability, and there just are not any good answers. Just prepare for the worst and hope for the best! I have been dealing with IBD since 1972, so I know all too well how you can never assume anything.

Jan

We had a difficult time deciding whether my son had crohns or not - 3 drs saying he did and 3 saying he did not. He had a video caspule that did show some ulcers in small bowel, but even so some drs thought that was not definitive. He continued to have what seemed like SIBO and the antibiotics could not control his inflammation after a while. Ultimately he stopped absorbing nutrients - shown on blood tests and in fecal fat test - and was nauseated, and in pain --so he began crohns meds. There is also the prometheus test that predicts outcomes with Crohns. I hope it was a fluke...

I am going to add to this as well as my prometheus test came back with crohn's and all my biopsies of the colon before J pouch came back as ulcerative colitis. I am going to be 1-1/2 years out with j pouch and I can honestly say that I felt disease free for one week and then trouble ever since. I do monthly vomiting and nausea along with going several times a day. My GI finally prescribed a med. sucralfate after an upper GI because of inflammation and some ulcers she saw in the EGD. My lower half (anus) I had sores from going so often along with cuffitis. Now, after a few weeks of taking sulcrafate 4 x a day I can say (for now) my pain has subsided in abdomen and anus. I still have bone pain since the surgeries, hot flashes etc. but the soreness of ulcers seem to have relaxed. I go for a 2nd opinion in Feb. to a GI because I do not want another surgery at this time! My GI and surgeon at this time do not know if another surgery for cuffitis or ileostomy would take care of all the issues. So, I still gamble with this disease of crohn's or ulcerative colitis. Really?!

After reading these posts and battle this or these diseases I ask myself or question what is the cure! I guess I thought that the j pouch would really be the cure for me. I don't know how I feel about this surgery! I get asked if I did the right thing. I thought I did because I battled to get into remission for over a year. After meeting with Primary dr. and GI over the course of the year; they could see I was declining and I knew I was getting weaker. I decided to do this surgery but now I question it because what have I solved. I still go (not 20 to 30 and blood) 4 to 10 times a day and vomit. At times feel poison. I am weaker because of no colon. I keep telling drs. that the colon contains more than just emptying out for the body. I do not sleep well and the 2nd surgery put me into menopause so, I battle with the problems of menopause. I guess I am rambling and I am thankful for this outlet and to know I am not alone! So, that is a good thing! I am thankful for the medication sucralfate which seems to be working.
I get frustrated because we can get medication but they can not find a cure for these two diseases and why?! I do a lot of reading on this site and I am always looking for why!!!!!!!!!

Roberta
UC 2007
davinci j pouch to ileostomy 2/29/2012
takedown 4/30/2012

I was diagnosed with UC in 1999. Suffered for 5 years and had my colon removed and j-pouch created in 2004. Since then I take 8+ lomotil daily, still have plenty of loose stools 9-15 per day, have had pouchitis several times in the past year, and am questioning what disease I have. With my colon removed my UC was cured, but I still have inflammation. So, do I have crohn's?