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Please Post Your Experiences Here If You Have Returned To Ileostomy From J-Pouch

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Posted 10/28/2015 5:44 PM (GMT 0)
As per title, possibly me just being lazy, but just trying to collate some info in one place.
Posted 10/29/2015 1:36 PM (GMT 0)
You will get a lot more information on this if you would go to www.j-pouch.org

Sue
Posted 10/30/2015 3:51 PM (GMT 0)
Susan53 had her's diverted but she's got a loop so she's struggling with the challenges of the loop, but she's really the only person here that I can think of.
Posted 10/30/2015 11:47 PM (GMT 0)
I hate this ostomy. I'm seeing my surgeon on Monday to beg to be reconnected. I'm not sure what your problems are but I would try and work them out before going to a ostomy. Removal I heard can be a ***** and leaving it in can cause diversion pouchitis which is not fun either.
Posted 10/31/2015 12:24 AM (GMT 0)
I had my pouch disconnected 1 1/2 years ago, and am thrilled with the results. I had the j pouch for over 20 years, and it was a living hell. My pouch is so scarred in, my surgeon did not want to try removing it, for fear of damaging something else. My only problem is that although a have an end type ileostomy, it is still attached to the pouch, and tension has caused the stoma to become flush. So I have to change flanges every 2 days, instead of 3 or 4 previously. I wish I would have had the surgery years ago, but was scared of going thru another surgery until I had to.
Posted 10/31/2015 11:01 AM (GMT 0)
susans53, Are you problems because you have a loop? I'm not sure why they haven't given you a "proper" end ileo?
gmark, I don't understand how an end ileo can still be joined to the pouch? Can you explain further or maybe put a link up?
You've both given me some more stuff I need to ask my surgeon when I see him on Monday.
Posted 10/31/2015 11:52 AM (GMT 0)

Silent Lucidity said...
gmark, I don't understand how an end ileo can still be joined to the pouch? Can you explain further or maybe put a link up?

I didn't understand that either. I think it must be a loop ileo from the description. If so, gmark, you should ask for it to be converted into an end ileostomy. It means another surgery, but a fairly minor one and should stop your stoma from becoming flush - although make sure your surgeon understands the importance of creating a stoma which sticks out far enough (1-1.5" ideally).
Posted 10/31/2015 1:20 PM (GMT 0)
I asked my surgeon that question and he did a loop to leave me options. Yes it leaks, it's small so I need convex, but I have friends who have an end and still,leak. Some are diverted, some pouch is out. It just the way the Ileo heals. Some heal up, some heal down, who knows. Some heal small, some heal large and then it can prolapse or retract. You can have problems down the road. You can get hernia, skin can change, etc, go to the world ostomy site.
The other thing I hate is that I have to empty a lot. More than my pouch.,I don't feel comfy in my clothes, constant thirst., and I always feel dirty., I can't eat a lot of food that I could with my pouch.,So maybe some of my problems are in my head.
What your only 8 months! What are your problems? Do you have a good GI doctor?
Posted 10/31/2015 2:41 PM (GMT 0)
susans53, I'm actually just coming up to a year since takedown. Problems include tenesmus, which can last up to 48 hours constantly, various anal and testicular pains.
I could eat plenty with an ileostomy, I'm now having to force it in with this pouch as I had lost so much weight, but it's not pleasant, and I much preferred eating with the ostomy.
Posted 11/1/2015 2:57 PM (GMT 0)
A e you tried rectal meds?
Posted 11/1/2015 5:24 PM (GMT 0)
susan, to be fair, a lot of the stuff you don't like, are things I hate about my loop too. I had an end before my loop and it was a lot easier. The loop needs to be emptied way more often. It also needs to be emptied immediately after eating. It makes me very uneasy. The end was slower and the output was less. I still had the issue with a pouf under my clothes here and there but not like i have with the loop. Hopefully you can get reconnected soon and everything remains well controlled. I want to reconnect too but if i had to have an ileo, the end was so much better for me, no leaks, long wear time, less messy..
Posted 11/1/2015 7:20 PM (GMT 0)
susans53, I've tried lots of meds. It's now been decided by my surgeon that my problems aren't because of inflammation, but that the pouch is a mechanical failure. I can understand you being unhappy with a loop ileo. I'll be getting an end ileo, and if it works similarly to my first, I'll be happy with that. Since takedown last November I have not had a single day where I thought the j-pouch had been the right decision. It has made me consider suicide, and for that reason alone, needs shutting down.
Posted 11/3/2015 2:50 PM (GMT 0)
Im sorry Silent, yes if it mechanical then you have no choice I suppose. I hope it all works out for you. Do you have a date yet?
Posted 11/3/2015 6:28 PM (GMT 0)
SL,

I am sorry that you are going through this. Can you get a 2nd opinion from another surgeon? It might make you feel better about your decision/situation, just so you know that you are getting the correct information.

I know where you probably stand on this with additional surgeries and that you probably want it done and have an end ileo but in the States they do pouch-redos for some mechanical issues.
Posted 11/3/2015 7:29 PM (GMT 0)
Keith,
I appreciate your kind words, but I don't want my rear end operational any more. Having lived with an ostomy before, I know it offers me a much more comfortable, better quality of life. I could go to London for a second opinion, but it will delay my surgery. My surgeon doesn't think they will be able to offer any further help, and I have put my faith in his words. I just want to end this nightmare and get on with the rest of my life. I know I have some tough times ahead with further surgeries, but believe I'll come out the other side with my life back on track.
Posted 11/21/2015 9:54 AM (GMT 0)
I just want to say that I wish you the best. I think that I will unfortunately be going through the same. As you are an guy yourself, I was wondering whether you have significant belly hair? I was thinking that if and when I decide on a new stoma, that I will get laser treatment for my belly hair so that I will have a nice, flat, unirritated surface for my flange. I think it would reduce parastomal irritation a lot.

How are you coping with fears about potential complications? The main reason I don't want to go through surgery is because I'm afraid of the such. I almost wonder if things will just get worse no matter what I do.
Posted 11/22/2015 10:27 AM (GMT 0)
Solomon, I'm not what you call "hirsute", so belly hair isn't an issue for me. I empathise with your thoughts about possibly making things worse, which is a part of why I'm having second thoughts. They've pencilled me in for a diverting ostomy on December 2nd, but I may well cancel this procedure and give things a little more time. Unfortunately I'm contradicting things I've posted on this board before, but as the reality of a return to ostomy dawns, I've realised I'm nowhere near as comfortable about it as I thought.
I've never felt so conflicted before and trying to decide what to do is causing me a lot of stress and heartache.
Posted 11/22/2015 3:14 PM (GMT 0)

Silent Lucidity said...
Solomon, I'm not what you call "hirsute", so belly hair isn't an issue for me. I empathise with your thoughts about possibly making things worse, which is a part of why I'm having second thoughts. They've pencilled me in for a diverting ostomy on December 2nd, but I may well cancel this procedure and give things a little more time. Unfortunately I'm contradicting things I've posted on this board before, but as the reality of a return to ostomy dawns, I've realised I'm nowhere near as comfortable about it as I thought.
I've never felt so conflicted before and trying to decide what to do is causing me a lot of stress and heartache.

You're being hard on yourself. It is a huge decision and a very final one. I think anyone would struggle with taking the next step. I wish things would calm down so you could enjoy life without this being in the forefront. It's easy to talk about going back to an ileo but the reality of it is, once you do that, you're likely done with the possibility of reconnecting. Even if you went to a temp, more surgery seems like a chore, but your pouch may never function correctly and it's still there. The loop ileo is a pain in the butt. It's all very final. In some ways, that is a great thing, but in other ways, it's scary... I didn't have any problems with my ileo, it was pretty easy, not sure I want to have one forever... mostly because I don't want to have to buy supplies. shakehead
Posted 11/22/2015 3:51 PM (GMT 0)
NSSG, I may well have to show your post to my Parents. They seem to think it's such a no brainer, "just" go back to ostomy, "just" get MORE surgery. It has got to the point where I avoid contact with them as much as possible. I can't comment on the buying of supplies thing, I don't have to do that here in the UK. One small thing to be thankful for I guess.
Posted 11/22/2015 4:21 PM (GMT 0)
SL, I'm sorry you're going through this. As NSSG mentioned, it's a huge decision and much easier for other people to dole out the advice and marginalize the potential impacts of your decision. It's your body and you have to live with the ramifications of the decision, so take your time and do whatever you need to do to feel confident with your treatment plan.

I understand you are anxious to fix the issue ASAP and reverting back to an ostomy may be one way to do that, but I agree with Keith that getting a second or even third opinion about fixing your pouch may be useful in better assessing your overall situation. I realize you live in the UK, but maybe having a consultation at the Cleveland Clinic or Mayo Clinic would make sense for you at this point.

Best of luck.
Posted 11/22/2015 5:19 PM (GMT 0)
See, this is my fear right now. I know I did miles better, physically at least, with an ostomy than with a reversal. But one can get used to almost anything, no matter how crappy - just skip meals and then be ravenous later, eliminate virtually all fruit and vegetables from your diet, worry about needing a toilet every time you go out, endure regular excruciating urges throughout the day, get up 3-6x during the night, clean your butt more carefully than Ming dynasty china, etc. etc.

I don't want to get 'used' to this. To me, if you are prepared to have 3 surgeries in order to have a j-pouch, then I don't see what a massive deal 1 or 2 more surgeries is on top of that. That said, I'm not underweight and I'm in good health, so I don't see why I can't go back to an end ileo and have my rectum removed all in one step.
Posted 11/22/2015 5:37 PM (GMT 0)
atwoodt, you've probably missed me posting this here before,but I'd be only too happy to travel over seas and visit the Cleveland Clinic, but I don't have the funds to do this. It's even worse since losing my job, I put in my claim for sickness benefits almost a month ago, but they won't process it until I get my P45 from my last employer, which won't happen for a couple more weeks. I currently exist on NO income, just travelling to my Hospital (11 miles away) is crippling me financially. I sometimes think I should just go straight for pouch excision and pray I die from blood loss in surgery. Sorry for such harsh words, but I'm so sick of dealing with the consequences of UC that started 20 years ago.
Posted 11/22/2015 6:00 PM (GMT 0)

atwoodt said...
I realize you live in the UK, but maybe having a consultation at the Cleveland Clinic or Mayo Clinic would make sense for you at this point.

That would be thousands and thousands of pounds. And what's the point of a consultation unless you have the recommended surgery - done by one of the top surgeons in the country of course - to go along with it?

Virtually nobody has that kind of money. You're not the first US person I've seen to suggest travelling to the Cleveland Clinic, so I'm not having a go at you specifically. But it's just not a practical or viable suggestion for 99.9% of people who live outside the US.
Posted 11/22/2015 6:26 PM (GMT 0)
An interesting aside, as the Cleveland Clinic has been mentioned: The stoma nurse assigned to me after my first surgery was extremely vehement in his advice to stick with an ostomy and not pursue a j-pouch, and he spent time working at the Cleveland Clinic. What did he see there to be so strongly against the j-pouch?
Posted 11/22/2015 6:38 PM (GMT 0)
NiceCupOfTea said:
"Virtually nobody has that kind of money. You're not the first US person I've seen to suggest travelling to the Cleveland Clinic, so I'm not having a go at you specifically. But it's just not a practical or viable suggestion for 99.9% of people who live outside the US."

Unless someone is a mind reader, how would they know who could or could not afford to travel here to the US for help? Who's to say it isn't a practical suggestion? There could be someone reading on here who didn't even know the Cleavland Clinic exists and would be grateful for the information.
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