After a pouchoscopy, the surgeon has determined that I have a narrowing right where the small intestines attach to the pouch. They are doing a biopsy of that, and will treat with steroids if inflamed. If/when no inflammation is present, he will go back in with a balloon to dilate. I don't know if I have all the terms correct,
If this goes as smoothly as he makes it sound- great. At least it sounds more promising than the cycle of adhesions and surgeries that is possible. Of course this could be its own cycle - we will see.
I actually feel good right now- yesterday was the first day I've felt like myself in almost two weeks.
Hi Disney mom--mine started after exactly 19 years too-must be a jinxed number! I hope you only have one episode and they go away which can happen--these are awful to live with. I'm still kind of bitter and trying to process mentally having to live in chronic intestinal pain--I thought that once my colitis was cured by this surgery way back when, those days would be done Anyway, my surgeon said it isn't unheard of for blockages to start decades after surgery--something about adhesions getting stronger over time and/or our bodies slightly shifting with age. She also said many adhesion problems don't show up--even on CT's. It's frustrating because I don't think this is something regular, unspecialized doctors know (i.e. ER doctors). Every ER dr. I've seen says "oh you're fine" (despite being doubled over in pain and puking) and 1 hour later the surgeons come in and say "no, she has a blockage". It gets old having to keep proving this to ER physicians. Please keep us updated on how things go, and good luck.
Duck- I would fear that the ER Docs think I'm just looking for pain meds, and am faking this horrible pain, when they see "nothing" on the scan. I understand, I'm sure they have to watch out for that. But really we all want answers and solutions. The last thing I want is to be back on piles of drugs to treat symptoms. I had my j pouch surgery to crawl out of my medication "haze" and don't want to go back there!
Thanks and I wish you no more problems!
Sorry to hear you are dealing with this too! It sounds similar to what I’ve experienced. I have to wonder too what would cause this after you have had your pouch for so long. My pain started after 2 years which seemed like a while but after 19 years I can imagine it would seem very random and strange. Keep us posted, I’m really interested to hear if your doctors figure out exactly what is going on! I hope they do! I hope you feel better and don’t have any more pain.
Thank you- you too!