Three year j-pouch anniversary

That is amazing. I am the same way!!! Out and about living life.

I can't say I do miss it! Glad to read here that you're in remission, iPoop.

Whenever I read posts from people with J-poch
I wonder should someone consider surgery once he is diagnosed with UC instead of going the medications route!!

Swan, yes. I would still consider meds. I'd much rather be on meds than have my jpouch long term (if meds were working).

We make JPouch sound like an attractive option, but for most of us it was the only option left. I'm happy with my jpouch but there are downsides.....still have some activity restrictions (Can't go out on a boat all day with some of my buddies for example...), I very very rarely sleep through the night (usually it's up once to go to the bathroom at 2-5am), some mornings I wake up with an accident where my body passed gas in my sleep and just passed a little extra with it. And as my doc put it.....be prepared to have chronic diarrhea for the rest of your life....

And that's not to mention the complications that can come from surgery. There's always the off chance you have a really bad outcome or surgery complications...

I agree with Bull. Far too many people have mild cases of UC that are well-managed. Surgery really should be reserved for people who don't respond to anything. I rarely ever have uninterrupted sleep since pouch surgery. I tend to get up to go to the restroom, but I don't have any passage of stool in my sleep, probably because I am such a light sleeper. I know people get up to use the restroom regardless, but I didn't, and getting up does wear on me. I'd much rather have a working colon, or take mild drugs, than have surgery. When it comes down to expensive, time-consuming, more invasive drugs, surgery becomes a more attractive option, especially for me considering I was really stressed out about insurance and the implications of illness on my future. At least with the j-pouch, there aren't necessarily full-on ups and downs in your health. I feel like I can do more now simply because things are on an even keel. Though the up times include loose stool and the downs include the same. With UC the down was much lower, but the up was better (but in my case always short-lived)! With UC, I couldn't plan ahead with UC, or make any decisions, without considering the illness, now that is all in the past. I probably couldn't go on a boat all day because I'd need the bathroom for something or other throughout the course of the day, perhaps that's a reason to go on a boat with a bathroom I would never camp, but I wouldn't before UC. I guess I am sort of a girlygirl when it comes to these things. I hate being without running water and toilets. I don't see the appeal in the least.

So bottom line, life will never be the same once we have UC.
Medications or surgery it depends on every one personal experience.

Yeah, agreed with NSSG. My JPouch life is incredible vs. the UC life I had dealing with a constant flare.....I'm doing great. I just want to paint a realistic picture. Would I go through surgery again vs. where I was? 100%. All day every day. Would I prefer to be "normal" on nothing more than a few meds? Absolutely.....

For me BMs are a little different than NSSG. Even though my jpouch seems to look great (from scopes), if I want to feel fully emptied it still takes me 5 mins or so to empty. If I'm in a time crunch I can run in, go in 20 seconds, and be done but there's a chance I have to go again within an hour or 2. Also for me the timing is crazy. I can try to empty before I feel the need to but I may have to go again in an hour. All depends on when I eat. I notice usually 12 hours after I eat I have to go, as well as 6 hours after I eat if it's something carb heavy. Again, not an issue for me since I can figure things out pretty well but another data point.

For men, there's a small chance of temporary erectile disfunction post surgery, and a smaller still odds of it veing permanent. Any lower abdominal surgery risks impacting our fertility and ability to conceive, whether male or female. Surgery is near reproductive organs, and our surgeons take reasonable precautions.

Congratulations and happy to hear you are doing well. Today marks 9 years since my takedown surgery. I can’t believe it’s been that long! Life UC free has been good! Continued good health to you!

So why am I hearing from people that with a j pouch you need to go 7-8 times per day, and have to wake up at night to go? Also, you can't go back to eating whatever you want, because the pouch can only hold so much and it's going to be more reactive to things like high fiber.

If I knew my chances of a good outcome were high, I would probably just do it. I just have so much PTSD over modern medicine and especially the doctors in my area. I don't trust them. I don't even fully grasp how to choose a trustworthy surgeon. There are so many big egos in this field. Years ago when a surgery team at a certain hospital were trying to convince me to get a colectomy, I found out later that that particular team was horrible and had a high error rate in their surgeries... but they probably were itching to get more practice in and they didn't care if I was getting the best surgeon or not.

Now I have been referred to a surgeon who is supposedly good, but he comes referred through my GI doctor who I don't trust whatsoever. This is the same GI doctor who once told me to shut up or die because I asked him to postpone doing a sigmoidoscopy on my prolapsed rectum.

I just can't handle anymore hospital trauma, and a colectomy is a big decision.

3timechamp said...
Mark depends on what u eat as far as bath trips,i go 1 to 4 times a day.I eat whatever i want

that sounds amazing

Albannach said...
In my case, if I had known how bad the four years between diagnosis and j-pouch would be, and how good my j-pouch outcome would be, I would definitely have chosen surgery much sooner! Lifelong remission on low risk meds would have been nice, but that's just not how things went for me. I'm really happy with my j-pouch: I eat and drink normally, feel healthy, almost always sleep through the night, and don't feel the j-pouch limits my life in any significant way. The one thing that bothers me is that emptying it can be loud. Today, I went to the bathroom early before leaving the house, took my kids to school, worked all day, and didn't even think about using a bathroom again until I got home at about 5. Compared to my life with UC, the transformation is incredible.

In my experience, using a j-pouch is nothing like chronic diarrhoea. When someone has diarrhoea they generally feel ill, and their bowel movements are exhausting and urgent. If I'm not actually ill with some bug, a normal j-pouch movement is fine. I feel well, my stool is usually fairly formed (though softer than someone with a healthy colon), and there is no urgency.

Albnnach that is amazing that your pouch is working that well. From reading the posts on here I believe there are more success stories then not . Unfortunately I am one of the not . Maybe that will change . It’s been a year and three months since my takedown and I have yet to sleep more then 3 hours without getting up my norm is anywhere between 3-4 trips a night by 5 am the pouch is empty . I know that because the next few trips consist of yellow bile only . I still experience chronic pain for most of my BM trips and all are loud and full of gas that I can deal with .
For me surgery wasn’t a choice I got to make . My bleeding couldn’t be stopped blood transfusions were wasted within a few days . So no regrets here I am
just waiting for my pouch to settle down so I can live a normal life like others on here.