Jpouch question

Hey guys I just had my reversal on Tuesday and got to go home yesterday. I'm having insane gas pains and pressure right under where my stoma used to be. I think I read that's normal. Does anyone have anything that can help with that?

Keep an eye on it, that should be around the area where the small intestine was put back together, so it could be swollen still, but if it doesn't go away and you arn't passing much or any stool then I'd go see the emerg to be safe.

Well, in my case the area where stoma had been was covered, but it didn't seem too swollen, did you have a 2 step or 3 step jpouch process?

Post Edited (Virdent) : 11/18/2016 5:39:15 PM (GMT-7)

Was your stoma left open? Mine was packed and they removed the packing the following day - it was like a little cylinder. I remember it was pretty nasty for a while, really juicy and moist. I had to keep it covered with a big gauze pad for the first week or so. After that, I used a big band-aid, but I tried to keep it uncovered a lot because air is good for healing. It was tough because I didn't want a spot on my shirt, but I also didn't want to keep the moisture in and prevent healing. Mine looked like a gun shot. I remember a few weeks later, when it was really closing up, I could feel little sutures poking through and I felt like one of them was inflamed, and it hurt. I ended up using heat to get it to come to the surface, eventually it came out in the shower. Gas was hard for me in the beginning, I couldn't tell what was gas, and what was stool, so I'd go to the bathroom a lot. Things get better, but it takes time.

Alright another issue. Everything seems okay but the main problem I have is that my rectum feels so darn inflamed. It feels crazy tight like it did during terrible uc flares and it feels like that hinders me from emptying my pouch fully as well as its painful when I do so. Is that normal for the first week or 2? Should I be concerned?

Bull101 said...
Alright another issue. Everything seems okay but the main problem I have is that my rectum feels so darn inflamed. It feels crazy tight like it did during terrible uc flares and it feels like that hinders me from emptying my pouch fully as well as its painful when I do so. Is that normal for the first week or 2? Should I be concerned?

I had this exact same feeling after takedown. Turned out that I developed an anal stricture that needed to be dilated. This is quite common following takedown. Basically it's just scar tissue forming making that passage narrow. My insides would make crazy loud noises and everything would spasm. Emptying fully was very difficult. If that's what it is the good news is it's an easy fix. But I would call your surgeon's office sooner rather than later. I waited thinking it would go away and it only got worse.

I had my takedown 3 weeks ago. For the first week especially, and even now, I get swelling at random places in my belly, mostly above the stoma. I have an open stoma that I pack daily. Right from the beginning I've had horrible gas pains. First associated with food, but into week two, they're just unbearable, and all the time. They seem muscular too, as every time I move, I yell out in pain. I'm on the max dose of oxy (2 every 4 hours), but I still struggle to sleep or do anything but just lay bed. Sometimes I just lay in bed yelling until I'm sweaty, dehydrated, and exhausted. I did get a fever for awhile, but ruled that out as an unrelated virus. They did all the tests, CT scan, rectum-Jpouch connection, and everything looks good. Fever went away and my stoma is healing nicely. This week we're trying an MRI because we just don't know what else to look for. I'm so tired of being in pain. I've lost 10 pounds this surgery and had already lost 15 for the first. All my bone are protruding. The one positive is that I still have an appetite and I go #2 about 2-4 times a day (the oxy slows it down), so at least I know my plumbing is working.

amybanks said...
I had my takedown 3 weeks ago. For the first week especially, and even now, I get swelling at random places in my belly, mostly above the stoma. I have an open stoma that I pack daily. Right from the beginning I've had horrible gas pains. First associated with food, but into week two, they're just unbearable, and all the time. They seem muscular too, as every time I move, I yell out in pain. I'm on the max dose of oxy (2 every 4 hours), but I still struggle to sleep or do anything but just lay bed. Sometimes I just lay in bed yelling until I'm sweaty, dehydrated, and exhausted. I did get a fever for awhile, but ruled that out as an unrelated virus. They did all the tests, CT scan, rectum-Jpouch connection, and everything looks good. Fever went away and my stoma is healing nicely. This week we're trying an MRI because we just don't know what else to look for. I'm so tired of being in pain. I've lost 10 pounds this surgery and had already lost 15 for the first. All my bone are protruding. The one positive is that I still have an appetite and I go #2 about 2-4 times a day (the oxy slows it down), so at least I know my plumbing is working.

Do you still have a fever? Did they do stool tests? Being dehydrated is not good with a j-pouch.

Have they tried any antibiotics? My GI track feels much better when I am on an antibiotics like Flagyl, Cipro or augmentin.

May I ask why you all didn't opt for a permanent ileostomy? It seems like the j pouch is just as bad as suffering with the UC. I have a permanent ileo.

I'm already happier with my jpouch now than I was with my temp ileostomy. It was such an inconvenience to have on my belly, showering was terrible just having the bag hanging there having to dry it not being able to fully soap my body like I used to be able to. I love sleeping on my side and halfway on my stomach, with the ostomy, couldn't do it. I was always afraid the bag would blow in the middle of the night from rolling on it or something so I never got any kind of good sleep. It was very uncomfortable to walk around while tucked in my pants. Once it filled up the top started bloating out and the bottom not so much so I had a U shaped bag from my belt and it was just not comfortable and didn't look great. Sports were terrible to do since the bag swung even with the belt I had for the bag. My skin was always itching and burning around the ostomy, not constantly but a guarantee that it would happen at some point in the day or evening. Always needing supplies and having to take supplies with me when I went places etc. And then lastly and maybe most importantly, I felt very very unattractive. As a 25 year old male, it was an awful feeling. Felt as if I could never find a girl / hook up with a girl again.

Therefore, jpouch seems like a much better option than my ileostomy so far even with the issues I've had.

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 same - none of us had a loop ileostomy, and we're all happy with our j-pouches.

I think I had adapted pretty thoroughly, after 3.5 months with my end ileo: apart from a couple of specific exercises, I was doing everything else I had done in life pre-UC, and my ileo was (thankfully) easy enough to manage. Pre-j-pouch surgery, I did think, 'why am I about to put my body through another surgery when life is so good now?'

Before the colectomy, I was also concerned about the j-pouch as I kind of expected it to be like having UC again, whereas the stoma seemed more controllable. I met with a j-poucher for coffee, which was quite informative. When he told me he had no urgency, and had total control over where and when he emptied his pouch, I knew I wanted to try for that option.

Had I not done this, I would have always wondered how different life could have been if I had a j-pouch. I didn't have any body image issues with my stoma. I was happy enough to wear a bag in the changing room at the gym, etc, and actually felt quite proud of my bag. However, I did want to give myself the chance to avoid a lifetime of ordering stoma supplies (and the daily stoma routine) if possible.

So far (3.5 months into life as a j-poucher), so good. I really appreciate not having to think about how many bags/barrier rings/adhesive removers/dry wipes I have. I empty my j-pouch a lot less than I emptied my bag.

I reckon if this thing actually comes off it'll be better than both an ileostomy and a j-pouch. I've lived with a stoma for two years and I've lived with being reconnected to my natural rectum for a year and a half. In different ways, both are utter bollocks.

I'd take your surgeon's opinion more seriously if he actually had heard of the implant in question.

I dunno, maybe it''ll take off, maybe it won't. But I'm desperate for just one decent alternative to a permanent stoma or crappy reconnection - the majority of people end up with problems of one sort or another. Yes, it's better than dying of fulminant UC, but it still doesn't make a stoma or j-pouch the best thing since sliced bread.

Edit: Rejection or infection doesn't seem to be an issue so far. Here is an Ileostomy Association article on the subject if anyone is interested. Click to download the article as a pdf: ostomycure.com/sites/default/files/ties-article-in-ia-journal-no233-2016.pdf

Post Edited (NiceCupOfTea) : 12/15/2016 4:10:40 PM (GMT-7)

Suebear, you're right, it was overall health. However, maybe if I WERE younger and in just as bad health, they would consider a j-pouch because I might have had a better chance of survival. As it was, the prednisone was actually killing me, not so much the disease itself. My blood pressure was WAY out of control for at least two years prior to my operation and it is a miracle I never had a stroke. I also had prednisone induced diabetes, my liver and pancreatic enzyme levels were off the charts. I credit you with opening my eyes because you were the one who made the statement that my GI doctor was NOT my advocate, and he certainly was not! He was just a pompous SOB who thought he was GOD and how DARE I question him, let alone go over him to seek out a surgeon. So, thanks again. I am thoroughly enjoying my life and have the energy to babysit my 2 yr old grandson four afternoons a week....the light of my life!