Ostomy bag vs J-Pouch (emptying)

Eva is correct, I did plenty well with my ileo. Sure, there was a period of grieving for my lost Colon, but that has to go with any of these surgeries. I'm desperately clinging on in the hope this pouch will work out, but can't fight the depression it's causing too much longer.

Count me in as another person who is ultra-satisfied with my end ileo for UC (chose it, didnt ever want jpouch though I technically remain eligible, as I do still have a rectal stump which I get scoped annually, a quick 5 minute procedure without any prep needed). I hardly ever visit these forums anymore because, just shy of 2 years since my surgery, my life is essentially pre-UC, and just randomly noticed this thread on one of my rare visits. I empty about 4-5 x a day, virtually never at night, and dont visit the loo any more than a normie. Biking, playing tennis, and doing everything a lot that kind of went heavily by the wayside in my UC years.

@NCOT, hoping you get happier times if you go for a reversal.

Totally with you on the "torturous loop" comment. My take down is Friday, and I'm so excited about getting this ET off my belly I haven't really thought much about pooping regular(ish) again. It hasn't been extremely bad during the day, and I've about got my irritated skin nursed back to being not so bad, but having to sleep sitting up, or lying on my left side has been the pits. Haven't gotten any real sleep since getting home from the 1st surgery.

I'm sure you're excited. Some jpouchers would recommend you bring a zinc barrier cream of your own to the hospital to get your behind prepped as it's a lot easier to prevent butt burn than to heal it.

I only know one other person with a j-pouch, and we talked a few days ago about this.....he says he has used baby wipes from day 1 and has never had a problem with burning or rashes. Do you guys not like the baby wipes?

Baby wipes were too abrasive for me immediately after takedown, but by now I'm at the point where they would be unnecessary (I haven't used any creams in ages and just use regular toilet paper). Also the chemicals in some wipes are irritating to the perianal skin (babies' too) so if you were going to go that route, I would get the "organic" wipes that are just cloth and water.

Hi GSC. I am slightly older than you (58). Had 2-step J-Pouch surgery and am very happy with it. I think most people get hung up on the number of times you empty it per day (I'd say I'm around 8). However, it does not take any longer than it does to pee and I don't know about you, but I pee at least 8 times per day! I just empty the J-pouch when I'm there anyway (actually have not been able to find a way to not empty it when I pee...seems to be the same muscles used). Having had a 2-step procedure, I only had a loop ileostomy which I hated (lots of skin irritation due to leaking) and couldn't wait for it to be gone. I also disliked having to deal with ordering supplies, making sure I always had extras with me, etc. etc. Plus I always knew the bag was there! It affected the clothes I wore and was just not comfortable for me. There is no urgency with the J-pouch (unless I eat something really annoying). I haven't had to go "find" bathrooms and have not had a "flaming red rear" as I took everyone's advice here and invested in a bidet sprayer hook-up for my home toilets and use a little bit of A & D or Calmoseptine each time (brought it with me to the hospital). I would say in the beginning my maximum amount in any day was 12. Now around 8 but I don't count, just empty and move on (much like a bladder). I do get up once or twice during the night, but I was doing that since menopause anyway!

So long story short...I am extremely happy that I gave the J-Pouch a shot. It's the closest thing to "normal" since I was diagnosed with UC!

Vicki

PS: Go to "My Profile" and create a signature to include your story.

Hey, Gutless -- I and many others are enjoying the naked shower every change day! It's the highlight of my week! (yes, I need to get out more). Whatever you decide, at least this doesn't have to be a factor.

Good luck with a scary decision -- I've been dithering for a year now, but have pretty well resigned myself to keeping the bag. Never could get a solid answer from the surgeon on reversal, but she seems very reluctant. In my case it would not be a j-pouch, just a straight reconnection, as I lost only a fairly small section of my colon due to diverticulitis.

Ann

I'm in a similar boat, except I had Crohn's and am waiting on a different type of reversal surgery. (I'm not eligible for a j-pouch but I still have my rectum, which can be connected to.) I've become used to wearing a bag, but I long to be able to sleep on my stomach again. And in general I will be glad to be done with the kerfuffle of ordering supplies, storing them, etc.

I was at the point of resigning myself to a lifelong ileostomy, when my GI and surgeon unexpectedly gave me the go-ahead for a reversal op. I'm grateful for the opportunity but can't really look forward to it. I'm worried about the recovery, urgency/incontinence, excruciatingly sore rear end, return of Crohn's, etc. In theory, I'm almost the ideal candidate, Crohn's aside (and that never affected my rectum badly). But I'm not taking it for granted it will all go well. I just have to hope it will, otherwise I wouldn't be doing it.

When I had my colon removed in 2004 they had to give me a illeostomy for a short period I was emptying about 4 to 6 times and it was always solid but I just couldn't get used to the idea of having a bag,so 6 months later they gave me a J-Pouch and it was horrible going sometimes 30 times a day constant bouts of pouchitis and not being able to lie down without severe gas pain and having to go to the bathroom,after a year of that the J-Pouch burst and I was back to my illestomy going between 15 to 20 times a day probably should have just stayed with the illeostomy.

GSC:
The deciding what to do is absolute worst In my case I really didn't get to choose I had toxic megacolon at 22 and it was remove the colon or die(so I took the 1st one) but my main problem was everyone from my Gi to surgeon to nurses told me I'd be sore for a few weeks and then be better then ever and best of all go back to my normal life and no bag,well I woke up from surgery and I felt the worse I ever had in my life and I had a bag they then tell me I'm gonna be need at least 2 more surgeries over the next 6 months to a year.after the 3rd surgery in which I got the j-pouch they then assured me now everything is better than ever,but once the pouch started working I constantly felt like crap and about 2 months in aleast once a month I'd be hospitalized for pouchitis,about 6 months in I'd started getting a constant stabbing pain in the pit of my stomach and going to the bathroom like crazy,I'd go to my Gi he'd tell me I'm fine,I'd go to the ER and they'd give me some iv fluids and send me home.about 2 months later the pain got worse and I began vomiting what looked to be pert plus shampoo(don't remember eating that?) and again everyone said I was fine,well a month later I was losing my mind and one night I woke up about 2am with a hole in me that was leaking really bad at 1st and I went to the ER and they told me the J-Pouch burst they had to do 3 more surgeries due to infection and it was back to the bag.

Since then I've had my bad,worse and less worse days(more of the 1st 2) but I would have appreciated a more honest representation of what might happen than "everything gonna be better than ever",I realize most people probably want to hear that that but it really comes as a shock to the system when it turns out much worse and it's now 11 years later and I'm still in rough shape(I probably will be for the rest of my life) and what makes it worse is my friends and family can not relate at all(how could they?),I realize my case isn't the norm and I've met people that love their illeostomy or J-pouch but this is my experience and I wish you much better luck than I in whatever happens.