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After over a year of severe symptoms, including a 30 lb wt loss and partial small bowel obstruction, a Smart Pill study finally revealed extremely slow gi dysmotility, especially in my colon. I was referred to a motility specialist and went through every possible drug therapy over the next two years without much success. While seeking another opinion, the idea of a Colectomy was first presented to me. I did meet with a CR surgeon who’s opinion was an ileostomy was my only option as she felt I had pelvic floor dysfunction which would ro an IRA. A new motility dr continued trying off-label meds that still weren’t working, so I sought a second surgical opinion. She ordered a Sitz Marker and defography which confirmed the colonic inertia and determined I did not have pelvic floor dysfunction. She also made some recommendations to my meds that made a major improvement. Note: surgeons will not typically prescribe meds. The difference was that she actually listened when I described my BM’s when taking the different meds. She simply suggested the addition of Miralax with the prescription med I was using to draw water into my colon. So far, I haven’t needed surgery, luckily. But if I eventually do, at least I now know an IRA is possible.
Replies to "After over a year of severe symptoms, including a 30 lb wt loss and partial small..."
I appreciate you sharing your medical journey. It’s so identical to mine it’s scary. Except I never had an issue with small bowel. In fact had to make sure it was working properly with a small bowel follow through test. This test was Important if considering the colectomy surgery. I also have two surgeons with two different opinions, which is very frustrating. I’m actually going to my third tomorrow. Basically because of not being able to pass the ballon Manometry test, she says pelvic floor is in play. But tons of PF therapy has not helped. Basically it’s not relaxing the internal sphincter muscle or coordinating properly to function. Yet other surgeon says that’s because of colonic inertia. They both agree with diagnosis but differ on exactly what surgery is best. I certainly don’t want a colectomy only to have to go back for ileostomy. Honestly don’t want any surgery ! I do have a pretty good motility doctor who has been trying to help me through. Like you I have tried all the medications available. The last was Mestinon, unfortunately like all the rest I can’t take the horrible side effect’s. I’m happy for you that you found meds that work. I believe this health issue has taken over my life. I’m sure you and many can relate. What’s more frustrating is that I never had any gastrointestinal issues, ever ! It started gradually over nearly 2 1/2 years. Now I completely rely on a enema every two or three days. It’s been such a rough journey, just to get a proper diagnosis took months on end. I’m in Los Angeles with Cedar Sinai and UCLA supposedly top specialists and still pushing and advocating on my own. It will be interesting tomorrow to get a third opinion. I’m trying to stay positive. Otherwise surgeon who is recommending ileostomy is also willing to try Botox in order to relax sphincter muscle. Yes not the fun botox area ! Lol
Again can’t thank you enough for sharing and hope we can continue…
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What medication is this?
As I was reading this, I could relate and I felt despair until the end when you said something worked 🙂 We all are different but maybe there is hope. I’s love to hear what it is. Many thanks