7 years with my j pouch already!

That's great Marianne. I am so happy you're doing well. I remember when you were literally the only jpoucher who posted here, well suebear too, but you inspired me to stay positive when I was facing a very scary time and I appreciate that you've stuck around to share your story.

Thank you both

NSSG- I'm glad you're okay now as well. It seems quite a few people have had the procedure since I started posting here. While no one wants to have a big, scary surgery, this one is such a life saver for those who don't respond to meds or anything else.

Congratulations it's great to hear positive posts on here. Most people are pretty negative when it comes to their situations but let's get real if things were going well why stick around looking for answers.
I am now 7 days post step one and am sooooo happy with my decision. It's tough i was very very sick when I came so my recovery process is taking a little longer than I want. I can't wait to be normal again and social but I have some serious swelling of the feet and legs and A
A few other things that came from the UC so now that that's gone this will go. Surgery saved my life tho and I wanna congratulate you on 7 years and being content in life. Keep strong

Hi ByebyeUC,
I am a little in the dark about surgery but was wondering if I could ask you some questions? Firstly, is a J-pouch the most common surgery that's done for UC? Or is it only for select patients - and if so, what rules you out? What are some of the complications that can happen or you've experienced? Did you have a bag initially? Do you go to the bathroom normally, e.g. Normal urge, formed bowel motion? I'm sorry if all that is a bit personal (I hope not), I'd just like to know how it works.

I am not her, but I think almost any UCer is a candidate. Unless your diagnosis was questionable for Crohn's, or if you've had fissures, which means it could be Crohn's... I got the idea from my surgeon that weight could be an issue, if you're severely overweight.. Other than that, most of us are candidates. Complications I've seen are ileus, infection or abscesses, pouchitis. All of these are temporary. Pouchitis can be chronic, but it's not too common. I had a bag for a while, most of us do. The only way to avoid it is with a one step operation, but one step procedures are not common & not really recommended. I have seen a few people on jpouch.org who mentioned having one step, and they did well, but you would likely have to travel to find a surgeon who would be willing to do that procedure, and I am not sure about the result it produces. I have normal urge personally, but not formed. It's different depending on what you eat and drink. Sometimes there is more liquid, sometimes it's small chunks. I can just push and go, no waiting around. It's noisy if you push hard.

notsosicklygirl said...
I am not her, but I think almost any UCer is a candidate. Unless your diagnosis was questionable for Crohn's, or if you've had fissures, which means it could be Crohn's... I got the idea from my surgeon that weight could be an issue, if you're severely overweight.. Other than that, most of us are candidates. Complications I've seen are ileus, infection or abscesses, pouchitis. All of these are temporary. Pouchitis can be chronic, but it's not too common. I had a bag for a while, most of us do. The only way to avoid it is with a one step operation, but one step procedures are not common & not really recommended. I have seen a few people on jpouch.org who mentioned having one step, and they did well, but you would likely have to travel to find a surgeon who would be willing to do that procedure, and I am not sure about the result it produces. I have normal urge personally, but not formed. It's different depending on what you eat and drink. Sometimes there is more liquid, sometimes it's small chunks. I can just push and go, no waiting around. It's noisy if you push hard.

Hey NSSG, do you mean fistula instead of fissure? I thought fissures are pretty normal and can happen even with regular folks pretty easily since it's pretty much just a cut.

WorriedUCer said...
Hi ByebyeUC,
I am a little in the dark about surgery but was wondering if I could ask you some questions? Firstly, is a J-pouch the most common surgery that's done for UC? Or is it only for select patients - and if so, what rules you out? What are some of the complications that can happen or you've experienced? Did you have a bag initially? Do you go to the bathroom normally, e.g. Normal urge, formed bowel motion? I'm sorry if all that is a bit personal (I hope not), I'd just like to know how it works.

Hi WorriedUCer,
I would say the j pouch is the most common surgery now for UC. Many people opt just for a permanent ileostomy because they don't want multiple surgeries so it's a personal decision. I have 2 family members with j pouches so for me it was a no brainer to go for it since I saw how well they have done all these years. There are some people who are not candidates for a j pouch. If you are obese a surgeon will not do the surgery and recommend losing weight first. Also people who have very long torsos may not be a candidate. There could be an issue with the small intestine reaching down to form the J pouch. I think those cases are rare though. I go to the bathroom about 4x a day. It's not formed stool like when I had a healthy colon. It's looser...semi formed I'd say. I have no urgency. I can hold it for a long time if I have to although the longer I wait, the more uncomfortable it gets. I had a two step procedure so yes, I had a temporary loop ileostomy for 3.5 months in between surgery 1 and 2 (reversal).

WorriedUCer said...
Thanks guys, I guess I'm classified in the mild-to-moderate category so it's never really been offered to me. But it's now shifted to moderate more often than mild and I wonder sometimes whether I'm struggling unnecessarily trying to hang onto a colon that causes me nothing but problems. It's nice to hear the positives about surgery.

I was a severe case more or less house bound. And the meds didn't work....went through all of them. So I didn't have much of a choice. If I was mild or even moderate and meds had helped me, I'm sure I'd still have my colon. But I'm glad this procedure exists for people like me because it has been a life saver. Good luck to you!