Before I share our story, may I suggest looking into the Mayo Clinic, ideally the main branch in Rochester, MN. We are on a waiting list for an extensive 2-3week program. I think it's like 6 hours every day M-F! That makes it as intensive as my wife's pain management program (which I explain below), which is crazy. Then take it from there. If you ever decided to go through with the iliostomie, you'd probably want it done there anyway if not NYC. That's not to suggest there aren't highly capable people elsewhere.
I came here on behalf of my wife who has a history of Crohn's and IBS, but over the last few years she has developed a neuropathic pain that's chronic but her pain therapy has helped with that; eventually diagnosed with fibromyalgia at the Mayo Clinic. She was later diagnosed with pelvic floor dysfunction at Mayo after finding stool packed high in her abdomen, which was not a surprise to me because she hasn't had what I would call a healthy bowel movement in years. I think the neuropathy developed from this. She also had developed that "beer belly". We thought it was just the Lyrica or something. Luckily her pain management not only helped with pain but also took her off many meds. She is doing much better in the brain fog department, isnt dependent on controlled drugs like Klonopin, and has shed some considerable weight (we still think Lyrica heavily contributed to that weight gain). She was also able to incorporate exercises and cook more.
We were set up with a PT that specializes in female-dominated conditions, such as pelvic floor dysfunction and other bladder-related issues.
Then after a few sessions, she started feeling nauseas more often. Now, instead of chronic pain, chronic nausea and accute stomach pains have become the focus. Our theory is that what our PT (plus excerise, movement, better eating, gluten-free) has been doing is working, but only to a certain extent. We believe that her body is in super "get this literal crap out of me" mode and is trying, but can't.
Furthermore upon doing research and talking to more doctors than I can count on both hands, we're fairly confident in the theory that, in her case anyway, her pelvic floor issue is a result of desensitization, which would have been brought on by the chronic bathrrom issues she's had since seven years old, including Crohn's.
I am always willing to keep up with those who want to be kept up with. Please don't go silent. The more people who speak up about
these perplexing conditions, the faster we can get to the bottom of it.
Remember, we all once thought stomach ulcers were "extreme stress pains". Keep positive, I know I try to, not because I have to, but because this area is so new and just needs time and attention. My wife has a harder time but with support and clearer thinking, it's far easier to get through. Reach out to people and don't stop knocking on doors, so to speak; do away with the doctors who don't seem interested, find the ones who do, and keep at it. Make them feel something inside that says "I'm going to help solve this with you." They're out there, just look. Sometimes you will have to go through the motions and jump through their hoops, but eventually they'll have to help answer for something.
PS...I have also been looking into the gut microbiome. It's a far more popular area of study today because of our technology and what we've learned regarding the importance of our gut flora. There's trillions of bacteria necessary for our gut to properly operate yet we only conventially understand a small fraction of it. The University of Maryland, for example, has had gorundbreaking studies done in this area. Check it out. Your GI should know of a test or two that you can take; they usually involve blowing into a tube, like a breathalizer or something.
Best of luck to you.
Post Edited (arobo21) : 11/6/2017 3:16:14 PM (GMT-7)