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...
I can't say I do miss it! Glad to read here that you're in remission, iPoop....
Hi all, I rarely check in here because life post-colectomy is full and busy. I wanted to post something today, though, as yesterday was my three year j-pouch anniversary. My health continues to be...
Pre-surgery, my extra-intestinal issues were eye inflammation, and mouth ulcers. I haven't been bothered by either since the surgery (just over 2 years ago)....
Hi all, I rarely drop by here anymore, but wanted to do so today as it's my two year j-pouch anniversary. The last two years have been great. My j-pouch functions as well as I could have hoped (4-5...
Back when I had my colon (I've now had my j-pouch for almost two years), if I had to travel while flaring, I would: - Eat very little the day before - Plan every stage meticulously: check whether...
I've had my j-pouch for over a year and a half now, and love it. Initially I used a barrier cream, and had a hand-held bidet, but now I don't use anything beyond normal toilet paper, and it's fine. I...
As long as I empty my j-pouch before I go to bed, I almost never get up in the night. My kids wake me in the night, but not my j-pouch!...
Hi I don't think we're allowed to post links, but if you google this study, you might find it interesting: SU Christi, W. Scheppach, 'Metabolic consequences of total colectomy', Scand J Gastroenterol...
In my final flare, which got really serious for about 18 months, I struggled to keep up with life. I managed to keep on doing my job (I teach at a university), but I had to plan everything carefully....
I am in the UK, so had it done at my local NHS hospital by one of the colorectal surgeons. He did a fantastic job in both surgeries....
Exactly one year ago I was in surgery to have my end ileostomy removed, and my j-pouch created and connected. A year on and... Things are going really well. For the first few months I was really...
When I had my ileostomy, at the start I was afraid to sleep on my stomach (which is my natural sleeping position) as my stoma was always fully inflated by the time I woke up in the morning. It took...
My surgeon told me I could have my second surgery (to remove the rectal stump and make end-ileo permanent, or to go for the j-pouch) any time from three months onwards. He gave three years as a ball...
Don't you think, though, that the people who put themselves forwards (or are put forwards by a nurse) to meet you are pre-selected in advance to be people with good outcomes? I met somebody with an...
Having had an end ileo, and now being a j-poucher, I second NNSG's comments. There's nothing wrong with wanting an ileostomy rather than a j-pouch. I was really happy with my ileo, and if I ever had...
I find that when I go, it's because I'm aware that there is stuff in my j-pouch that could be emptied, but I rarely empty it because I *need* to. It's more that meal times are a convenient time to...
I've never had any urgency with my j-pouch. Urgency is caused by rectal inflammation, and in the surgery your rectum (apart from a small rectal cuff) is removed. Freedom from urgency is awesome -...
As a j-poucher, I am happy to second iPoop's summary of j-pouch life. There is no urgency. I go (on average) 4 times every 24 hours. It's very predictable: at some point after I wake up, around lunch...
Hope it goes well, and that you love your post-UC life! Are you getting an end ileo or loop ileo? I got an end ileo at surgery 1, and had the j-pouch constructed and connected in surgery 2. That is...
I was on Remsima (an infliximab biosimilar, basically the same drug as Remicade) for about six months before surgery. I had been on azathioprine for a year before that, and carried on taking it while...
I had an end ileo for three and a half months. The leakage experiences I had were: 1) After visiting a stoma nurse, who changed my bag but didn't get it on properly. I was shopping with my wife and...
I had that kind of urgency before my surgeries as well. It is like living in a nightmare. A j-pouch doesn't work for everyone, but the overall success rates are very high (I think 90-95%?). It's...
Regarding accidents with a j-pouch: J-pouch surgery removes your internal anal sphincter, but leaves your external anal sphincter intact. Your external anal sphincter is naturally closed unless you...
I can only speak for my own experience, but here's what I have found so far: > Learning to control the pouch wasn't very hard. Apart from a little bit of nighttime leakage in the first two weeks, I...
Thanks everyone. Life with a stoma was great, although I think the extra surgery for the j-pouch was definitely worth it. By the time I had mastered my stoma routine, it took about 10 minutes every...
Thanks everyone. I'm in the UK, where we have a wonderful National Health Service (although the Conservative party is doing everything it can to run it into the ground, and replace it with a...
It has now been one year since my first surgery (a sub-total colectomy with end ileostomy, followed by a second surgery three months later, to remove the stoma, create and connect my j-pouch). In the...
I find that if I take psyllium husk, it makes my stool much milder on my skin. And I use wet wipes (the flushable kind) rather than toilet paper. As long as I have that combination, my skin is fine....
I hope your surgery goes well! It is sometimes the first line of defence in UC, if your UC is putting your life in immediate danger. It's not the first line of defence in most cases though, as UC can...
Nice. Happy for you....
Thanks iPoop. Hope you're doing well?...
Hey, When I still had my colon I was on azathioprine for two years, and infliximab for six months. I got some nasty warts on my foot, and three warts on my hand. I've now been med-free for six months...
I can vouch for what iPoop has said. I empty my j-pouch 4-5 times every 24 hours. The BMs are evenly spaced out. I empty my j-pouch when I get up, after lunch, after dinner, and again before I go to...
Surgery gave me my life back. My UC was out of control for 18 months, I failed pred and infliximab, and saw my quality of life drop drastically. In my case, trying to avoid surgery felt more like...
I had UC for four years. I failed pred at about 3 years, then failed infliximab (Remicade). In my final flare-up, which lasted for about 18 months, the urgency of my (10+) bowel movements each day...
I've had my j-pouch for six months now, and love it. I work full time, have small kids, go to the gym, travel a lot with work (trips across Europe, to the USA, and to East Asia in the next three...
I've put my story on as well, and am happy to help answer any questions. J-pouch surgery has been around for a while. As far as I understand it, the overall success rate improved quite a bit thanks...
> Before my surgery (I was failing on infliximab, had already failed on prednisolone...), when I told my consultant I was keen to have surgery because my symptoms were bad, but didn't spell out the...
I had an ileostomy for about three and a half months. I waited for about eight weeks (I think) post-op before i started working out again. I had no problems doing cardio. I also started lifting...
Sorry to hear about the ileus. I didn't have one after my colectomy/ileostomy surgery, but I did for the first two days after my stoma reversal/j-pouch surgery. After that surgery, I started drinking...
Hi Solomon, I'm glad to hear that the surgery went smoothly. Wishing you a quick recovery, and a well-functioning stoma....
Absolutely. I love my j-pouch. I've had it for 3.5 months now. I would class my overall quality of life as excellent (i.e. normal!) - and far better than he life I had with UC. I empty my pouch 4-5...
Christine, I'm delighted the stoma has improved your life so much. Mine totally transformed my life, it was great. NCoT, I asked my surgeon about the TIES implant after my j-pouch op, to see what he...
Not always though. Here in the UK it's fairly normal to have an end ileostomy, and then have the j-pouch created and fitted in the next (and final surgery). I know a few other j-pouchers who had the...
When I had my first surgery (subtotal colectomy, leaving rectum and anus, plus end ileo), my surgeon said he would be happy for me to keep the disconnected rectum for three years - but after that, he...
I'm 11 weeks out from j-pouch surgery. I had follow ups with my surgeon at 5 and 10 weeks. I can go back and see him if there are any complications/pouchitis. Apart from that, I've been referred to a...
I flared on and off for the first year, post-diagnosis. I would do a course of pred, then taper off, and a few months later I would flare again. I had a scope at the first post-diagnosis flare up (a...
I had an ileostomy (which is what you'll have, rather than a colostomy) for three and a half months. It gave me my life back. As long as your stoma bag is properly fitted to your skin, and is closed...
I can't imagine how much unnecessary stress it must add when you have to consider this stuff alongside an illness like UC. Whenever I'm in the States (I'm from the UK), it always amazes me how vocal...