Hi Lee-squire,
I am late to the party here, but I’m wishing you all the best. As others have said, we’ve all been there. I’ve lost my career (for which I spent ten years in training after college) to this mess. I’ve had bad care, no care, you name it. But I seem to be on the other side now, down but not out.
Cuffitis is brutal. I had it for a few years—and no diagnosis until someone finally did yet another rectal exam that made me cry, and shoved a script for suppositories at me. I could NEVER get them in. So I dealt with the misery, ate all of five bland foods for a long time (and took a bunch of OTC vitamins to hope I wasn’t ruining my health further), and then finally found someone to fix the problem.
The last bit is the hardest one. I spent way too long on things that didn’t help, at the insistence of docs who didn’t listen, just pushed their way. I was willing to do whatever they thought would help, but when it wasn’t helping, they weren’t willing to shift tracks. That was a problem with my care, one I recognize a lot faster now—and no longer put up with.
That brings me to the most important point—we all will have a ton of suggestions/ideas for how to get you past the hump. But every single person with this seems to have different diets that work for them, different experiences, different things that help/hurt. And that goes for probiotics, vitamins, extracts, foods, you name it. NONE OF US IS 100% RIGHT FOR EVERYONE, when it comes to these issues! And no doctor will be either, not even the famous Dr. Shen.
The principles of what work are similar in some ways, though—so we can suggest things, but if you don’t find they help, please don’t give up. Something will—just have to find it. I got zero help from the three nutrition consults I had requested in different hospitals. (They googled what to do—it wasn’t useful.) There really is no single manual or guide to this. Intestinal tracts are very individual, just like their bacterial composition. Length and bacterial composition matter, but there’s so much more we don’t understand.
My probiotics helped a ton, Dr. Shen’s opinion notwithstanding. VSL#3 did not—and was ridiculously expensive. But an OTC one, the gummy Digestive Advantage, made a world of difference in my case. Go figure. I just know it helped me, took 3 or 4 a day when I used to have nonstop pouchitis and cuffitis, and was working full time, 12 hrs a day. The probiotics used to make my stools ‘firmer’, so less frequent/not likely to cause fire-butt, acid leakage, or any other of the miseries. It helped the pouchitis, but not the cuffitis—because my immune system targeted the rectal cuff with laser-focus, like it did my colon when I developed UC. Sometimes meds help that, sometimes they don’t. Mine didn’t.
It was miserable before probiotics, and I had many a day when I bawled my eyes out—and didn’t know about this site, either, so I didn’t have this kind of support at the time. So I kept playing with foods and supplements until I found something that helped me get through. In my case, dairy was a good thing. For others, it’s a no-go. I can’t handle GMO grains, or anything with too much ‘hard’ (insoluble) fiber, but soluble fiber is highly necessary for me to control my stools and not have a zillion runny ones, even taking Imodium/Lomotil and tincture.
My weapons of choice: non-GMO whole grain rolled oats, cooked in various ways, to provide soluble fiber and bulk; cauliflower for soluble fiber; fried rice from a greasy Chinese-American place (no idea why this works, but it stopped my pouchitis cold back in the day); and a protein powder that came with a lot of soluble fiber in it, plus strawberries and milk, for good calories.
Anyway, whatever you find that works for you, please know we’re here for you, and wishing you success. It’s kind of nuts how much better I felt finding this group, no matter how much I figured out for myself. My own experience was that none of the things people suggested, food-wise, worked for me—but I was still so glad they offered what worked for them. What actually helped me the most was knowing I wasn’t alone in my misery, and that it could get better.
I hope you find a good GI doc to look after you; that’s going to make the most difference, I think, in your ability to tackle all these things and make them better. No matter how much I managed on my own, the cuffitis didn’t go away until it was resected at my redo pouch surgery. Then I felt so much better, no more ring of fire—but I had a nerve injury to my internal sphincter, so now the problems are different. Not nearly as much pain, nothing that would stop me now, but a loss of control.
Before that scares you too much, I think that being sick like this for so long has helped me become more resilient in some ways. I don’t recommend it for others in general, would love to have my old life and career back, but since that’s not possible, I’m trying to find out what else I can do to provide for myself/keep from going crazy for the rest of my (hopefully long) life. Once you’re out of the acute misery stage with the problems you’ve been having, maybe you’ll feel better able to look at that side of things; I’m hoping you find something that makes you feel like it’s all bearable. I’m still hunting for my second act. Some days are better than others, and I’ll admit to being profoundly discouraged at times. But I keep going because… no choice, really. And though I’ve never been an optimist, I feel like I still find ways to enjoy life. What helps most, in my case, is not looking back so much anymore. I used to beat myself up constantly for ignoring my instincts and not going out of town for better care, when I first knew I’d need the colectomy. But it doesn’t help now to dwell on my mistakes like that, and I’m learning to do it less.
Best of luck!