Internal "J-Pouch"
- Pros: I look like a normal person. I poop out my butt. I potentially live a totally normal life from here on out. No bag!!!!!! I can fart! (Lying down). If it doesn't work out, I could revert to an Ileostomy. Stomach sleeping!
- Cons: I have to learn how to use a toilet again, and it will buuuuuurn. I have to worry about finding a bathroom again. I will go to the bathroom often, but allegedly not urgently. If I need to pass gas standing up, I will poop my pants. Potential for "pouchitis", which is a lot like colitis. Some people never have it, some people have lots of it. It's usually treated pretty successfully with antibiotics. Diarrhea will happen sometimes. Maybe monthly (totally freaked out about how menstrual cramps will affect bowel function). Obstructions and strictures could be an issue, particularly at my former ileostomy site because of scar tissue. Catheter not an option because of the J-pouch fragility. Possible impact on sex-life due to irritation/inflamation/weird feelings in the region. Will retain a tiny piece of my rectum (a 1" cuff) that could still become cancerous. If the world ends and I get an obstruction, I'm in big trouble.
External, permanent Ileostomy
- Pros: Never need a bathroom urgently, woohoo! Freedom!! Even if I get sick and have diarrhea, who cares? No running to the toilet. If I get an obstruction, potential to clear it myself by inserting a catheter (like, if the world ends or I'm on vacation... I've brought a catheter on a plane with me just in case, for real).
- Cons: I have a bag of poop taped to my belly. Sometimes it leaks or falls off (in my sleep!!). It smells awful when I go to the bathroom, embarrassing in public. Fills up with gas, limits my wardrobe. Constant concerns that my kids will kick me by accident or pull on my appliance. Can't sleep on my stomach for more than about 5 minutes at a time (right after emptying bag). Seatbelts are uncomfortable. Pants are uncomfortable. Body image & self confidence is a little distorted. Changing the bag sucks. In general, it's kind of annoying. If the world ends, I'll be covered in poop all the time because there's no way i'll be able to get supplies. But husband pointed out we'll all be covered in poop if the world ends, so there's that.
I think I could accept living with a permanent ileostomy without too much convincing, because in general I'm pretty secure, not too vain, and love the freedom from the bathroom.
But let's be honest... I'm a little bit vain. And I'm still relatively young. And I want to be "normal"... at least physically. I'm pretty sure I would always regret not trying to be normal, and my surgeon assures me that I am a very good candidate for a successful J-Pouch. So I'm doing it!
My next surgery is June 28th... bright and early. This will involve taking my small intestine, folding it over on itself to form the "J-Pouch". They will remove all but 1 inch of my rectum (It's just kind of floating around in there at the moment) and tie the new J-Pouch to the rectal cuff. They will then pull a loop of my small intestine (higher up) through the hole in my abdominal wall where my ileostomy currently is, and they will cut a slit in that loop, then sew it to my abdomen to create a temporary "loop" ileostomy. The poop will come out of that slit, into a bag, while my new J-Pouch heals. In several months, I will go in for a 3rd surgery where they stitch up the slit, push my intestine back in, sew up the hole in my abdominal wall, and re-route all of the poop through the nicely healed J-Pouch.
They say the recovery from this one is "similar to a c-section", ie, no lifting for 6-8 weeks. But I've never had a c-section, and I don't have a newborn at home (just 2 oversized young children), so I'm not really sure how that will translate.
