My GI doctor is recommending I get this surgery done soon. I am 32 years old, struggled with remission for over 8 years +. The only thing that works is Prednisone and I HATE being on it.
Has anyone here had this surgery done? If so, why did you need to get it done? What has been your experience with this? How was life with just a bag? How is exercising? Partner intimacy? Eating "normally"? Any complications? I have loads of questions.
These are great questions and I am sure you will hear from our community soon. I haven't had surgery so I can't offer any insight but I just wanted to respond and let you know that you are being heard. I hope you are feeling okay today. Big hugs, Elizabeth (team member)
I do think I am prone to adhesions near where my stoma was, and am careful now about eating things like clams, mussels, seedy vegetables, etc. I've had a few obstructions, but only one that needed my doc to go in and fix in a quick outpatient procedure that was basically a colonoscopy. I also never eat spicy stuff because if it goes in hot it comes out hot but I never liked hot stuff anyway. I do occasionally drink carbonated stuff and use a straw, which I was advised against because it can create excess gas. I occasionally have bouts of pouchitis but find keeping my iron and vitamin D levels up helps. I can occasionally avoid treatment with Cipro by taking cortifoam instead, but sometimes I have to bite the antibiotic bullet. Others have claimed VSL-5, a potent and expensive probiotic, helps prevent pouchitis but I haven't personally benefit from probiotics.
I've never been huge on exercising, but I try to walk and do yoga and I know other folks with j-pouches are very active. Just go slow with things like weight lifting or anything strenuous for a while - check in with your surgeon as you advance. As for intimacy, I do find as a woman there are certain positions that can be uncomfortable if my pouch is inflamed. Overall, though, it hasn't been a huge problem. I'd say my #1 annoyance is that it's way louder when I poop now. I definitely found it super helpful to talk to other folks who have had the surgery, so let me know if you have more Qs or want to connect privately - I am new here though, so not sure how it all works quite yet. 😀
The pouch itself also "malfunctioned" in 2014, and I had a temp stoma for while then - the intestine leading up to it had twisted.
Much like everything IBD, there are no concrete answers. Some people have a J-pouch and live happily ever after. Some don't. The important thing to remember is that social media often presents a skewed view because people who are well are out living life. They are not online, in Facebook groups or on forums. The people online are often the ones that are struggling and looking for support.
I can't tell you whether YOUR J-pouch will be fantastic. I can't tell you how long YOUR recovery will take, or how long you will be able to hold faeces for, or what food/drink you will be able to tolerate. We're all different.
So, to answer your specific Qs from my personal experience.
I had a J-pouch created a year after I had emergency surgery to remove my colon, after a super quick diagnosis of UC.
My experience was a lot of pouchitis and cycling through treatments (Ciprofloxacin, Metronidazole, VSL#3, oral Pred, Pred enemas, Mesalazine enemas, suppositories, Azathioprine, Infliximab).
Life with a bag for me is obviously preferable to life with UC and J-pouch.
Exercising was fine when I was well, but difficult when I had Pouchitis/Cuffitis (the J-pouch version of Proctitis) because of the frequency, urgency, and because the inflammation made it very uncomfortable.
When I had my J-pouch connected the second time, after the temp ileostomy, I had nighttime incontinence. This was embarrassing when sleeping next to my partner. I also found it painful to have sex when my pouch had inflammation in it, and the accompanying fatigue and mental health decline didn't help.
I didn't really have issues with any particular food, but my J-pouch didn't like any type of alcohol. That would contribute to Pouchitis flare. Some people have discomfort when passing things such as nuts and popcorn.
Sorry my response is all doom and gloom! As I said, there are lots of people living great lives with a J-pouch. They're just less available online!
~ Sahara (team member)
Good information from both sides. I had surgery in November and have a few more months living with a ileostomy to decide wether to keep it or do a J pouch at the next surgery. So thank you guys for this! I am thinking I am going to keep the ileostomy.
- Sahara (team member)