considering j pouch surgery

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rob_uk
Regular Member


Date Joined Jul 2007
Total Posts : 32
   Posted 10/6/2009 1:30 PM (GMT -6)   
hi everyone, hope your well, i normally post on the ulcerative colitis board so i'm new here.
i'm male, 28, live in england. i've had uc for 14 years and am in the middle of a flair. the doctor has told me to consider surgery. i've been doing a lot of research but would like to ask a few questions to people who have actually been through j pouch surgery for uc
 
how many bm's do you have in a typical day?
 
is there much urgency?
 
are you tired a lot?
 
is your diet restricted or can you eat things now that you couldn't before?
 
how long has it been since you had the op?
 
this is a sensitive one and it scares me most, i've been told there is a small chance of impotence, has anyone had this problem? ignore that if your not comfortable with it
 
i'd really like to hear from anyone in the uk that has had or is having surgery.
thanks for reading, rob

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 10/6/2009 2:08 PM (GMT -6)   
1. I don't know what my frequency is but it doesn't interfere with my normal activity.
2. There is ZERO urgency with a jpouch
3. Tired? No. I was tired with UC.
4. I eat everything I ever ate. I have no diet restrictions.
5. I had the jpouch surgery almost 9 years ago
6. Go to www.j-pouch.org and ask your question on impotency. There are several UKers on that site too.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 10/6/2009 4:44 PM (GMT -6)   
Dumb question, but what exactly is a j-pouch anyway? I am looking at getting a temporary ileostomy due to severe constipation and outlet issues. Does your rectum have to work to have a j-pouch? Because mine DOES NOT!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 10/6/2009 6:22 PM (GMT -6)   

No, the rectum is removed with jpouch surgery.  A false rectum is made with 9-12" of small intestine.

 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


spiderman
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 10/7/2009 12:54 AM (GMT -6)   
Rob,
I am from the UK

how many bm's do you have in a typical day?

3 or 4 - though it can be more if I have too much to drink or overdose on leafy veg.

is there much urgency?

None at all.

are you tired a lot?

No I am bursting with energy

is your diet restricted or can you eat things now that you couldn't before?

I eat everything and have no restrictions, though foods like leafy veg may make me a bit more active

how long has it been since you had the op?

Almost 8 years

this is a sensitive one and it scares me most, i've been told there is a small chance of impotence, has anyone had this problem? ignore that if your not comfortable with it

I know a couple of guys who suffered erectile dysfunction in the first few months afte surgery, this corrected itself in time though. I also know a couple who have permanent retrograde ejaculation.

There is a very good site at www.iasupport.org which has its own set of forums and is very UK focussed. From there you will be able to arrange to speak/meet with others who have already been down this road and can answer all of your Qs.

Peter

rob_uk
Regular Member


Date Joined Jul 2007
Total Posts : 32
   Posted 10/7/2009 4:38 AM (GMT -6)   
thanks a lot for the replies, much appreciated and very helpful. sue and peter i will have a look at those sites thanks
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