I’ve had my j pouch for 22 yrs. Lately I feel constipated and am straining hard to go. Miralax helps me pass my stools. My internist mentioned floppy pouch syndrome. Anyone been diagnosed with it? What were your symptoms and treatment?
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I have heard about it before but I do not know too much about it. I believe it may require another surgery to fix it though. I think it might be best to see a Colon surgeon about it and see what he says.
Thank you Lauren. I pray no surgery!
@GKU_51 posted:Thank you Lauren. I pray no surgery!
You are welcome And I pray that too
Keep me updated
regarding "Floppy Pouch Syndrone " excerpts from a recent Lancet article,
Diagnosis and classification of ileal pouch disorders: consensus guidelines from the International Ileal Pouch Consortium
citation is below
. . . Various forms of extrinsic pouch strictures can occur in patients with restorative proctocolectomy and IPAA or continent ileostomy. Floppy pouch complex has increasingly been recognised . . . . The phenotypes of floppy pouch complex are best shown with contrast pouchography, barium or magnetic resonance defecography, and pouchoscopy ...
Pouch prolapse is the most common phenotype of floppy pouch complex . . . The most commonly prolapsed segments are the anterior wall of the distal pouch body and the cuff. Prolapsed bowel can partially or completely block the pouch outlet and it can protrude outside the anus . . . Patients with circumferential prolapse can present with pouch intussusception . . . In a survey study of 269 colorectal surgeons who did a total of 23541 pouches, 83 pouches (0·4%) were reported as having prolapse symptoms.29 Of 3176 patients who underwent ileal pouch surgery in the Cleveland Clinic, 11 (0·3%) were diagnosed with pouch prolapse.
www.thelancet.com/gastrohep Published online August 17, 2021 https://doi.org/10.1016/S2468-1253(21)00101-1
I suspect the phenomenon is more common than had been reported in the literature reviewed for these guidelines.
I've had mine for 27 years and now have straining and am not fully digesting a lot of food. I had a scope done and found out the pouch outlet is less than 5mm, smaller than a straw, due to scar tissue. I have a consulting in November to determine next steps (pouch revision or removal). Honestly, at this point I'm prepared for either. It's a been a good run for 27 years with this pouch and I've never been limited by the pouch. I kind of expected issues after 50 years of age. I just want to be able to sleep well, socialize, exercise and enjoy my days so whatever gets me there the fastest will be my preferred outcome. I hope you're not nervous about the idea of surgery as it may be the best way to get whatever outcome you desire.Keep us posted on the diagnoses and process!