Hey All, (sorry for length)
After a solid 11 yrs post takedown without any significant issues, the past 4-5 months have been very frustrating. As I've posted previously, I began to get very bad stomach (gut) cramps/aches/pains, bloating and associated feelings of fatigue and frustration. I would cycle through weeks that were awful and some that were "OK." I went through some testing and was examined by my surgeon, all was clear. No sign of pouchitis (also no increased frequency or associated diarrhea). Unfortunately the pains would never subside for more than a day or two at a time. It's reminded me of the lack of quality of life I had when sick with UC. Though my surgeon wanted me to see a gastro in NYC, I choose someone closer to me due to cost and convenience. I did not (and still do not) believe there is an issue with my pouch. My new GI initially suggested my symptoms were consistent with SIBO and we decided to treat as a test (Xifaxin). Unfortunately, felt no real change during the course and was no better off after. We next did the breath test as a follow-up, which came back "borderline positive," for both H and M. This time we tried Xifaxin+Flagyl. The addition of Flagyl, in my opinion, made all the difference. It was 10 days of bliss (except I caught the flu and bronchitis), but my gut was flat, pain-free and I wasn't paying any mind to it (which is the goal). Sadly, not even 48 hours after this course of ABs, symptoms returned and the past handful of days have been pretty painful, unless I don't eat. I spoke to my GI again, and he is somewhat insistent that he scope my pouch before choosing to prescribe any more ABs/meds. I understand his thinking, however, I've done a lot of reading of research papers, blogs, podcasts, etc and really think I've nailed my own diagnosis. So I have 2 questions....
1) Believe it or not, I've never had my pouch fully scoped since takedown. Even though I know it is fine and not causing the above, GI still wants to cross it off the list before continuing. Because I've never had it scoped, I'm pretty nervous. The pouch has made all the difference to my life and I am very protective over it. My GI is not a pouch expert, but has studied at both Cedars-Sinai and Mt. Sinai, and is experienced in our anatomy and has scoped pouches previously. Nevertheless, I am still nervous about this. Can I expect something very similar to all of my colonoscopies? Is the prep they suggest OK? (2 fleet enemas PM/AM). I haven't had to give myself an enema in 10+ yrs. Is it different w/the anastomosis? Can anyone offer any advice on what to expect (and humor me in telling me that no harm can come to the pouch)?
2) I've become certain that my issue is linked to an issues with my intestine's MMC, and I can even track this back to a significant food poisoning issue. Research is significantly suggesting that damage to the MMC can and will lead to SIBO and all of its symptoms. It became very clear to me this week, as I felt awful, that the motility of my entire gut really comes to a crashing halt when things aren't going well. I have almost no movement or gas, and I use the restroom even less frequently (which is wild for a j-pouch)....essentially constipation. Even when I do move my bowels, it is taxing and almost impossible to pass stool (which is spackle-like in its consistency). Also, NO gas being passed.
I believe that another strong course of ABs to help eradicate some/all of the overgrowth, with the help of a pro kinetic and diet change (ugh), I will be in a lot better shape. Can anyone speak to pro-kinetics or long-term AB use for SIBO? Or am I giving up carbs for good?
Thanks,
Ken
