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Hello everyone, i'm new to this forum and i'm just wondering if anybody is having/has had similar problems to me.
I had J-pouch surgery 7 years ago but i had constant ongoing cramps and difficulty emptying the pouch etc. After numerous investigations nothing in particular could be identified so i had a loop ileostomy (i was advised to have this type as reversal is easier if required at a later stage) in january of this year. This gave me awful problems including incompletion diversion, severe cramping, prolapse, retraction and peri-stomal skin breakdown. As a result i had it redone as an end-ileostomy 6 weeks ago. I have never had another cramp from that day to this thankfully!

My question and major problem now is that i am experiencing extreme pressure discomfort (often on a constant basis) from what i assume is the j-pouch (which has been stapled off at the last surgery)....it feels like it is low down in my back, it is literally driving me mad, sometimes it seems to be associated with mucus build-up and sometimes the pouch seems to be empty. Has anyone else experienced this and is it likely to go in time?....i am due to go back to a job in the retail sector so i'll be standing in quite a confined area all day, and i can't imagine being able to put up with this discomfort and work at the same time. My surgeon did not want to remove the pouch as he said the surgery was too major and just in case i wanted to have children in the future he advised against unnecessary abdominal surgery. I regret now not having gone ahead with it if it would make my symptoms go completely?
Thanks for any advice / thoughts Smiler

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C chiromancerMember
I had my pouch disconnected not quite 2 weeks ago and have an end ileo. My pouch has been pretty quiet aside from some blood tinged mucus the blood has lessened but mucus continues. Are you getting any output out of the pouch? If not its possible its full of blood and mucus and needs to be cleared out.

The surgical possibilities at this point are remove pouch but leave anus or remove pouch and anus and sew everything shut (Ken or Barby butt.
C
L liz11Member
sunflower- Yes, I had that when my jpouch was disconnected, exactly as you described it. And for me, it just kept getting worse the longer I had the disconnected jpouch. Though disconnected, your jpouch can still be inflamemd. My docs attempted to treat it with SCFA (short chain fatty acid) enemas... which did nothing to help and Rowasa enemas. Those helped a little at first but then became useless. I ended up having to have the jpouch completely removed and "barbie butt" as the pain/pressure and the need to use the toilet 20+ times a day because of mucous discharge was just not acceptable. Though it was an extremely major surgery and I sufferred from multiple major complications, I am very pleased that I had it done as it definitely has improved my health and quality of life.
L
EricEricMember
I just had my j pouch removed five weeks ago (had it for 23 years, but due to constant pouchitis, cuffitis and rectal bleeding and incontinence, I had to do something). I didn't want an exterior bag either, had one for 18 months after my toxic megacolon 22 years ago. I was healthy, but I had such a hard time dealing with it, and the issues of leaking. So, I decided on a Kock pouch (or a BCIR). I'm still healing, but I'm glad I did, have you considered a K pouch?
Eric
J JillMMember
Leaving the pouch in was a huge mistake when I did my end ileo. I ended up back in for pouch removal in 18 months. Since then, perfect GI health! Best thing ever was having that pouch out. I snapped back in less than two weeks.

I have had two children since the removal but did need IVF. The up side, I got pregnant three times with first try of IVF cycles (fresh cycle that brought us Alex - 6 1/2, frozen cycle I miscarried and fresh cycle that brought us Meghan 4).
J
S Sunflower33Member
Hi Eric & Jill, thanks for your replies - i've just spotted them now! To be honest i hadn't heard of a Kock pouch - i'm happy enough with the external bag i think ....maybe if i had been aware of the K pouch in advance i might have considered it, although i'm so sick of pressure sensations at this stage that i think i'll be sticking with my end ileo.
Jill, it's great to know you have no further GI symptoms - i strongly suspect i'm going to be like you having to get the j-pouch removed as i'm sick of the constant pressure i'm getting with it .... i got four days of little or no pressure there recently which coincided with a return of my energy levels, but i can feel it starting up again, it's such a miserable feeling Frowner. I'm back to my consultant in two weeks time but it's great to read that i'm not stuck with this horrible feeling for the rest of my life and that removing the pouch might be a good option for me. Congrats on the family by the way, it's great to know it's still a possibility even after j-pouch removal Smiler. Thanks again for yer replies
S
FM Former Member
I'm going through the same issues. I have an end ileostomy now & am so thankful for it. I never thought I would say that! I had 2 failed fistula repair surgeries & the ileostomy was a relief. I'm going in on Tuesday to have the j-pouch removed & the rectum sewn up. This will be my 9th surgery in 22 months. Enough is enough! Hoping this is my last & I can finally go on with my life.
FM
vanessavyvanessavyMember
I have INSANE pressure. I am taking Norco now. I have the BCIR though but my rectum and anus have been removed. It just started about a month ago. Feels like a watermelon wants to rip out of my ass. The taibone pressure is just bad. I don't know what to do. My CT scan shows possible lesions, not sure what that is about and nobody seems to think anything is wrong.
vanessavy
Jan DollarJan DollarModerator, RN, retired
There are quite a few members here who have had their j-pouch removed. Some went with a k-pouch or BCIR and others went with end ileostomy. A few opted for a pouch redo. Have you tried doing a search for specific words, like pouch removal, end ileostomy, etc? If you read through this thread, you will notice several members who have responded that have had their pouches removed.

You can try going to an ostomy site if you need to find more who have had failed j-pouches removed.

I think the ones who have an ileostomy (either end or loop) and permanently defunctioned j-pouch are in the minority. More often than not, sooner or later, the pouch causes trouble again. This is particularly true if you have an IBD diagnosis. Many in this category actually wind up with a Crohn's diagnosis (UC was an incorrect diagnosis).

Jan Smiler
Jan Dollar
M MaryMomof3Member
Sunflower - wow- I can really relate!!! I too have a loop ileostomy & I have ALL the symptoms you have described; I thought I was the only one because I have posted before but not received much of a response. I had a colectomy, j pouch formation & loop ileostomy completed 7/15/14. Since then I have had horrible rectal pressure, stoma site skin breakdown, & frequent diversion as you described slipping out of nybrectum into a pad nearly all day ....I have to wipe my bottom frequently to stay fresh. I am wondering now if I should get reconnected, or try the BCIR instead. I feel for you. The rectal pressure is miserable . Mine is worse from evening until early morning- no idea why. Is yours?
M
C Cozy52Member

I had  jpouch put in about 5 years ago and had I continence almost the entire time.  Surgeon put in bowel interstim and it isn't working .  Still incontinence, now  is suggesting asking out jpouch and putting in colostomy.  He said taking out the jpouch would  very dangerous but I have had no life in several years, always planning everything around a bathroom and not getting out much.    Can anyone share their experience with this?  He is pretty sure he cannot do it laproscopic  the way the surgeon who removed my colon  put in he jpouch.  He had to open me up and it took 3 major surgeries and I had to wait 3-6 months between each surgery.  Any help will be greatly appreciated.

C
BillVBillVMember

Before you call it quits with your j pouch, I suggest that you consider having a consultation at the Cleveland Clinic where they specialize in dealing with problem pouches.  If your entire colon has been removed, you would not be able to have a colostomy.  Your options would then be a conventional ileostomy, a k pouch or a BCIR.  The latter two procedures do not require an external bag and its associated issues.  In my case, my j pouch had to be removed and I opted for a BCIR since I was strongly against having the bag.  Fortunately, removal of the j pouch went well (no complications) and I had a full recovery in about four months.  Everything was done in one operation and I now enjoy a very good quality of life.  Be sure to research your options well and select a surgeon who has lots of experience in j pouch removal and performing the procedure you decide to have.  Best of luck to you.

BillV
C Cozy52Member
I have had a jpouch for five years and it never worked properly.  I have a bowel interstim in me also and it isn't working. My colon met with me last week and we both agreed that the best thing for me to do is to have jpouch and interstim removed and put an ililostomy.  Have any of you had this done. He said it was very dangerous because the jpouch is probably attached to some body parts and it would be a difficult surgery for him as well as myself .
The first surgeon did not put it in laparoscopic so this surgeon said there is only a 10% chance that he would be able to do it that way.  He said he would probably have to open everything up and do it.  If anyone has had their jpouch taken out like this please tell me about your experience. I am really nervous about this.  Thanks so much!
C
A assetMember
Originally Posted by BillV:

Before you call it quits with your j pouch, I suggest that you consider having a consultation at the Cleveland Clinic where they specialize in dealing with problem pouches.  If your entire colon has been removed, you would not be able to have a colostomy.  Your options would then be a conventional ileostomy, a k pouch or a BCIR.  The latter two procedures do not require an external bag and its associated issues.  In my case, my j pouch had to be removed and I opted for a BCIR since I was strongly against having the bag.  Fortunately, removal of the j pouch went well (no complications) and I had a full recovery in about four months.  Everything was done in one operation and I now enjoy a very good quality of life.  Be sure to research your options well and select a surgeon who has lots of experience in j pouch removal and performing the procedure you decide to have.  Best of luck to you.

 

A
A assetMember
Originally Posted by asset:
Originally Posted by BillV:

Before you call it quits with your j pouch, I suggest that you consider having a consultation at the Cleveland Clinic where they specialize in dealing with problem pouches.  If your entire colon has been removed, you would not be able to have a colostomy.  Your options would then be a conventional ileostomy, a k pouch or a BCIR.  The latter two procedures do not require an external bag and its associated issues.  In my case, my j pouch had to be removed and I opted for a BCIR since I was strongly against having the bag.  Fortunately, removal of the j pouch went well (no complications) and I had a full recovery in about four months.  Everything was done in one operation and I now enjoy a very good quality of life.  Be sure to research your options well and select a surgeon who has lots of experience in j pouch removal and performing the procedure you decide to have.  Best of luck to you.

 

Hi BillV I am in he midst of my research and surgical consults. Glad to hear you've had great success with your pouch removal. I am now certain I want to go to the Cleveland Clinic for my pouch removal surgery as it will be very complex with so much scar tissue after 14 surgeries over 10 years. Did you have your surgery at the Cleveland Clinic? If so who was your surgeon there? If not where and who did your pouch removal?

A
R RHoltMember
Originally Posted by Mysticobra:
This post ended over a year ago.
But to add and I will start a new one later... I am having mine removed on Monday November 9th 2015.
I will be sewn up and an end ileo installed.
And hell yes I am scared! I know the pain that is coming.
Been there done that.  But I hope for the best and that it be one surgery and done.
Richard.

Richard, it is 11/12 and I hope you are recovering well. Did you have an end ileostomy or K pouch?  I hope you are doing fine and recovering. 

R
BillVBillVMember

Hi asset,

You are wise to be doing plenty of research on your options and obtaining surgical consults.  Although I did not have my surgery at Cleveland Clinic, I have read a number of posts from those who had consults and surgeries there with good results.  Two surgeons’ names that I have seen mentioned in posts are Dr. David Dietz and Dr. Feza Remzi.  I am sure that there are other surgeons there who could deal with your situation.

 

I had my BCIR surgery at Palms of Pasadena Hospital in St. Petersburg, FL and my surgeon was Dr. Ernest Rehnke.   It was a difficult surgery since I had three previous major abdominal/pelvic operations with lots of scar tissue and adhesions.  I highly recommend him if you are considering a BCIR.   If you are planning to just have your j pouch removed and keep your ileostomy, Cleveland Clinic would be a good place to have it done.

BillV

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