Getting crohn's disease after having colon taken out?

@JoeJoe posted:

Hope everyone is doing well. I was wondering if any of you ended up with crohn's disease after having the large intestine taken out and getting rid of the Ulcerative colitis? My surgeon told me that there is a small percentage rate of this that could happen. Last thing I want is this to happen and to have to go back on all kinds of meds after all that surgery getting the j pouch. Thanks.

Yes, it happens and it happened to me but I would not worry about it. There has been around 100 threads on this board on this topic and there are simple bottom lines on this issue:

1. Surgery removes the diseased colon but doesn't remove, nor can it, the autoimmune disorder in your body which causes IBD in the first place.

2. The J pouch lacks the backsplash valve of the colon and this causes backsplash stool to flush back into the ileum. Over the course of time, this process can cause residual chronic inflammation at the J pouch inlet and neoterminal ileum. After approximately 15 years with a J pouch, inflammation was spotted in my ileum, which was suspected to be a result of this process. This is a mechanical issue with the J Pouch that neither you nor anyone else can do anything about. They are not made with backsplash valves. The colon is. In many cases, people have J pouches 30 years or more and no such issues manifest. Many posters on this group in the past are or were in category 2 like me.

3. In some other cases, inflammation will appear in the J pouch and/or neoterminal ileum, this a result of auto immune disorder which is still systemic and in your body, and not as a result of backsplash stool.

4. Even if 2 and/or 3 happen, and there is no guarantee that they will not happen, the resulting inflammation may very well be much more treatable with medications than your UC was. In this case, you have "traded up" in diseases, like me, and surgery was successful because it improved your quality of life (and maybe saved your life), but meds still need to be taken. An imperfect result, but perfection doesn't always happen.

5. In perhaps a much smaller number of cases than 4 above, intractable pouchitis and/or Crohn's manifests that is resistant to treatment and the pouch has to be removed. This is a small number of cases.

What percentage of cases result in pouchitis at some point is hard to say, but I have heard numbers ranging as high as a 50% chance you will have pouchitis at some point and have to treat it. However it's not something I would worry about. If it happens, it happens, and you deal with it. Might happen once or never in 30 years, or you could end up like me battling pouchitis continuously  for 28 years, mostly very successfully, and with a high quality of life compared to what came before the J Pouch.

A lot of people have a tendency to view surgery as a magic wand that changes their life, whether it's J Pouch surgery or knee surgery or back surgery. Presumably you have surgery to improve your quality of life, and if that's the test, J pouch surgery was very successful for me and is for most people.

Thank you so much for all of that info!

JoeJoe,

No problem, and good luck. Your chances for a good result, if you have a good and experienced surgeon, are pretty good. Beyond that, there is no crystal ball on how things will go after surgery. We all wish there was, but all we can do is wish you the best.

Thank you, @CTBarrister, for the concise summary on this. I recently went through a series of work ups on my small intestine and they suspect Crohns, but here is what I know:

• My biggest issue is not being able to maintain my ferritin level--this is what made the doctor's suggest Crohns.  I feel lucky that this is my biggest symptom and it is treatable by IV iron infusion. Occasionally (several times a year) I will have frank blood in the toilet.
• Scoping and swallowing the camera pill revealed that I do have spots of shallow ulcerations. A lot of these are in the "back-wash" area that @CTBarrister described.
• Ultimately, I have decided I am not going to worry about this. I am going to treat my anemia and treat symptoms if they occur.
• I have found switching to a low FODMAP diet and taking Dysbiocide and FC-Cidal, 2 herbal supplements, while eating yogurt several times a week (Nancy's probiotic yogurt) has helped me.

It happens in some cases, but as IBD people, we are resilient. The fact that we remain after the darkness came and we are still here proves we are resilient. We can overcome anything, if Crohns does happen, we will cope with it and not lose hope.

Do not worry about what will or not come, enjoy the present