After 13 years of having an AJ pouch, I am going in for a complete removal of the J pouch and a permanent ileostomy bag.
Any feedback would be appreciated.
I am really nervous about my first surgery, which had me in the hospital for 3 months.
I have since been diagnosed with Crohn's, and it is moving up 40 cm into my small intestine and all throughout the J pouch.
Oh, that sounds awful.
Are they removing the entire large intestine? Are they sewing up your butt hole?
You mentioned your small colon is affected. This means your output is going to be liquid and a lot of it when they remove that infected piece.
You are young. You will do fine recovering. Just get details on appliances, and make sure the stoma is not going to affect your belt line or pants line. Question everything, take notes. Have someone else with you.
Do you trust your surgeon? What about follow-up care? Are stoma nurses available?
When is the surgery date? You are going to need help at home too. What type of surgery? Open? Robotic?
We will (members) be alongside you if you keep us posted. No worries. We got your front and back 😃.
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Hi Tricia, I can understand why you would be nervous about this surgery after your first surgery left you in the hospital for three months. I doubt that you will be in the hospital for over ten days. Warrior already asked the questions that I had in mind. Just know we are all here for you and I will pray that you have a speedy recovery. Be sure to keep us informed.
Hi Tricia, welcome to the site. It's normal to be nervous about surgery, but the relief afterwards is great: fewer doctor appointments, fewer meds hopefully. When you have a consult with the surgeon, make sure to tell him you want a stoma that sticks out at least an inch; otherwise, a shorter one will cause skin irritation as it will be hard to get a good seal under the pouch. Good luck.
Hi tri,
Have you asked your gastro what the long-term prognosis is? I assume you've tried all the newer Crohn's meds and none are working for you, so they have to remove your damaged-beyond-repair bowel. But if the Crohn's isn't being controlled, it's just going to keep on going up the small bowel. Do they have a plan on how to deal with this... or will they just go in and chop out more when the time comes?
As for being nervous... I know it's easier said than done, but there's really nothing to be nervous about. You have to be operated on... and you're going to come out the other end in better shape than you're going in. So... why worry about it? Just pack a few 1000-piece puzzles, some good books, and a tablet if you have one... you'll get tired of looking at your small phone screen all day... and think of it as a vacation. A pretty shitty (no pun intended) vacation... but at least a change of pace for a week or so. Treat the nursing staff really, really nice your first day of recovery... and they'll take real good care of you for the rest of your stay. And of course, you'll have us to talk to while you're enjoying the wonderful hospital food and quiet relaxing atmosphere. 😉
;O)
I am 2 weeks post-op from having my colostomy removed and the rest of my colon removed, and I now have an ileostomy. I read so many scary things, but I was surprised at how well I am coping. It is different and has faster output, but I am up and about, doing housework, and playing with my grandsons. The diet part I am still learning what I can and can't eat, but I feel a lot better and my stomach is flatter. Good luck xxx.
