I don’t know what I would do if I didn’t find a whole online community of #JPouch-ers.
Every time I look up some symptom to see if it’s related to my pouch, I find hundreds of others with the same problem, related to their pouch.
And it’s all things doctors never told me. 1/
The thing with a #JPouch is, for those with colitis, it’s seen as a cure. No colon, no problem. They warn you that you can likely develop Crohns later on. They tell you about the occasional inflammatory pouchitis. 2/
CN ////// menstruation, fertility
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But what about severe period cramps and extra digestive trouble during your cycle? What about lower back pain radiating from your pouch or as a result of surgery? What about difficulty conceiving due to internal surgery scars? 3/
Each poucher experience is unique of course, and there’s no way to prepare everyone individually for what their pouch journey will be like. However, there’s enough of these things that I’ve seen amongst SUCH a large group of people that I think they’re worth talking about. 4/
Like, from the get go.
All doctors are different too. But when I got my #JPouch, it was presented to me as something to “give me my life back.” My surgeries were all planned with a #JPouch in mind, and I really wasn’t given much information on it. 5/
It was a medical choice basically being made for me because it would be the most “normal.”
And I’m thankful for my #JPouch (most days) because I handle it better (again, most days) than I did my ileostomy.
But there is still pain. There are still overwhelming difficulties. 6/
I face new obstacles regularly because of my #JPouch. New pains, new problems, and the only people who can give me any insight are the thousands of folx online sharing their experiences.
I’m thankful. But I still feel like things about this procedure were swept under the rug. 7/
In conclusion, I really just would like to see:
-More doctors being more honest and open with their patients about the possible long term effects of their surgeries.
-More research done on common #JPouch issues and more solutions.
-The online #JPouch community continuing to- 8/
-support each other, because we are the ones who know our conditions best and we get each other through hard times.
Someday I’ll do a follow up thread of my own symptoms and co-morbidities to discuss, but for now, think about this.
9/9
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