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considering jpouch surgery

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Ulcerative Colitis
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Posted 7/20/2012 11:36 PM (GMT 0)
I am also having to start considering this option... at least in thinking and talking about it and preparing mentally. The thing I worry about most is that without surgery if I go into true remission, then everything functions normally. However, if I have surgery then it's never truly "normal" again (from what I've read). The thing I worry about most is the anal leakage (yuk?). And possible pain during sex for females (another thing I read on -ostomy forums).

One question I have been wondering for the last few days though: Do J-Pouch peeps have to watch what they eat/drink in any way? Are there any foods or beverages (such as alcohol or coffee) that aggravate your "new" GI tract?
Posted 7/21/2012 2:18 AM (GMT 0)
I think it is very important to weigh the pros and cons of each option. I did not expect a lot from the j-pouch but I have been Pleasantly surprised.
I am only three weeks out from surgery so I sill watch what I eat. I avoid fresh fruits and vegetables and any fatty meats. I love fresh fruit and vegetables and will reintroduce them later after my body has adjusted. I was told coffee and alcohol speed up the system but I have not had a reaction. I have one latte a day which was what I have done for most ofmy life.
I do not have any anal leakage. It is too soon for me to try intercourse but there are many other women who have written that it has not been a problem. There have also been at least two women who used physical therapy to restore the joy in their sex life.
A big factor or me was the cost of living with an ostomy vs j-pouch. My insurance did not cover any of the ostomy supplies.
Posted 7/21/2012 2:55 AM (GMT 0)

bootstrap said...
The thing I worry about most is the anal leakage (yuk?). And possible pain during sex for females (another thing I read on -ostomy forums).

One question I have been wondering for the last few days though: Do J-Pouch peeps have to watch what they eat/drink in any way? Are there any foods or beverages (such as alcohol or coffee) that aggravate your "new" GI tract?

No anal leakage for me either and no pain during sex.

I eat and drink everything that I did before my UC days. Certain foods may make me "go more" but I don't let that stop me from eating them. After all the years of UC and not being able to eat, I'm not depriving myself of my favorite things. It is so nice to drink my coffee again and enjoy a glass of wine. I could never do that with UC.
Posted 7/21/2012 6:41 AM (GMT 0)
Thanks for the info ladies! Hearing these kinds of things brings us some hope - so helpful when trying to make these difficult decisions. <3
Posted 7/21/2012 7:16 PM (GMT 0)
Wow. These comments and stories really help me with my decision. Glad to know that so many people are pleased with the J pouch and don't have many complications or side effects. Was pretty confident in the decision to have surgery, but then the doctor reminded me that I could end up with many issues from the J pouch that I don't have now since I have few UC issues. This is really helping me to go back to my initial decision to have the surgery. THANK YOU!!!
Posted 7/21/2012 7:58 PM (GMT 0)

arb72 said...
Wow. These comments and stories really help me with my decision. Glad to know that so many people are pleased with the J pouch and don't have many complications or side effects. Was pretty confident in the decision to have surgery, but then the doctor reminded me that I could end up with many issues from the J pouch that I don't have now since I have few UC issues. This is really helping me to go back to my initial decision to have the surgery. THANK YOU!!!

Just make sure you go with an extremely experienced surgeon that has done tons of j pouches! I cannot stress that enough. Best wishes!! :-)
Posted 7/22/2012 8:10 AM (GMT 0)
I just had the first surgery at the Cleveland Clinic, which is 25 minutes from me, on July 12th. The surgery was about 4 hours in length and the surgeon said my colon was in terrible shape.

I was hospitalized 4 times in a year's period and became steroid dependent, albeit they did not do much for me at all and luckily, aside from agitation, I had very few side effects.

My surgeon was fantastic in answering all my questions and surgery was something I knew I would have done when I was first diagnosed if it ever got out of control.

I'm still healing now, and quite sore. The first few days are not fun at all, despite being on morphine, but you need to force yourself to get out of that hospital bed and start walking, no matter how much discomfort you're in.

I have not missed the constant blood, urgency, bouts of incontinence, etc. Mine was done laparoscopically so I have very few incisions from the surgery and going to the Cleveland Clinic, I knew I was going to get excellent care. I had maybe 3 consultations with my surgeon before telling him this needed to be done, and after seeing my latest colonoscopy results (50+ pseudo-polyps, no normal mucosa, inflammation, ulcers everywhere, etc.). he said it really was my only option, on top of being steroid dependent (if I dropped below 20 MG of Prednisone, my symptoms became completely unmanageable.

The stoma, though temporary, gets some getting use to. That said, though, so many companies make so many variations of them really no one will even know you have one. Plus, it's only temporary.

Good luck.
Posted 7/22/2012 12:05 PM (GMT 0)
     I'm a perfect example of the saying "hind sight is 20/20".

     If only I had known how progressively worse my disease would take course back in 1998 when first diagnosed, I would have sought out a colorectal surgeon immediately.  Instead, I stuck with the same GI who diagnosed me and all he did was use me as a guinea pig to try different meds.  I did seek two other opinions but they too were GI doctors whose treatment methods were in total agreement with my doctor.   After a brutal hospitalization in 2008 (thought they were going to carry me out of there in a pine box for sure), I went to a local colorectal surgeon.  Big mistake.   I had no idea what the j-pouch even meant back then.  I believe I had just joined this forum.  Anyway, this surgeon made the surgery sound like torture and to make matters worse, he told me I would be "going" anywhere from 8 - 10 times a day.

     It wasn't until 2010 with my health deteriorating rapidly...uncontrollable high BP (even on 3 different meds at same time), prednisone induced diabetes ( readings of 300), prednisone dependent since my hospitalization in 08, high pancreatic and liver enzyme levels, etc....that I finally found a colorectal surgeon online because my GI doctor refused to refer one to me.  By that time, I was so sick and also almost 64 yrs old, I was not a candidate for j-pouch.  I didn't care, I just wanted my life back.

     Like summerstorm said, having the "bag" is not bad at all.  I am healthier than I have been in years!  BUT....you don't want to wait like I did.  Perhaps if I weren't so ill my surgeon would gladly have done j-pouch.  He trained at the Cleveland Clinic and  is head of colorectal surgery at Univ of Pa in Philly.  By the time of my first visit to him he told me it was much too risky for me to have j-pouch.  In his opinion, it would have been too stressful on my system.   These days my BP is very well controlled with only 1 pill a day....the only pill I take daily....I no longer have diabetes.  My liver and pancreatic enzyme levels are now normal, and I no longer have UP.  However, I will forever have osteoporosis thanks to prednisone.

      The very best of luck to you.  God bless.

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