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I am scheduled for surgery May 24th for jpouch removal and to get a permanent ileostomy ..

i have had my pouch for 18 years due to UC and the last 3 years developed major problems in my pouch as well as a pouch vaginal fistula...I tried imuran, Methotrexate and Remicade but didn't provide much relief..Right now I am so terrified and don't know what to expect..I have had many opinions and they all feel this is the way to go..But I'm getting cold feet I guess..

Would like to know what to expect post surgery and what it's like living with a permanent ileostomy..I am just really scared.

Thanks in advance.��

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My jpouch lasted 11 years. The last 3 years of that were not good. Ended up having to irrigate regularly etc. My surgeon said only relief would be end illeo. I had the surgery 26 months ago and feel great physically. No problems with appliance and can eat everything now even salads! It was a better quality of life for me and prob should have done it sooner. Stay positive and give yourself time to heal. It is so much better in the long run. Good luck ! 

I agree with everybody above. I had mine removed 13 months ago and wish I had it removed sooner. I suggest you order samples from everyone, Hollister, Convatec, Coloplast are 3 good companies to start out with. Your stoma nurse might help with your initial selection and it may be the best for you but I tried them all to make sure I had the best fit. I ended up wearing the same company that they started me out with. 

Thankyou all for all the positive responses..My surgery is 2 weeks away and I am very anxious and have so much fear..But am glad knowing everybody is doing well with their ileostomys..I hope it will be a good outcome and finally will have my life back..

How long does it take your bottom to heal ? i have 3 months of work so am hoping I will be healed by then..

I wish you all a lifetime of health and happiness.

I also had a 12 hour trip home which was a combination of a flight with one plane change plus a 5 hour drive.  We did it in one day, but then 12 hours is pushing it if you have one driver.  Fortunately, my surgeon did an excellent job with my bottom and I had no problems when traveling.  The seat cushion sounds like an excellent idea.  Be sure to get adequate instruction at the hospital on changing your bag while in transit should the need arise.  I opted to get a BCIR instead of an ileo and the nurse did an excellent job preparing me for travel.  This procedure worked out very well for me.  Best of luck with your surgery.

I hear you Richard.  I live 3.5 hours from Mayo's which is much better than 12 hours!  Lots of trips for us but lucky we live so close.  You will definitely need a cushion.    

Dad gave me the cushion I used. Other medical supplies like ileostomy supplies, walkers and etc. are covered by insurance with a prescription.  Dad's was 100% covered by his insurance.  I don't know if the doctor or physical therapist wrote the prescription. I am guessing PT ordered it with a doctor's prescription. 

 

As an afterthought, I know that having to travel a long distance for a surgical procedure is a deal breaker for some people.  Access to follow-up care, should it be necessary, is also a consideration.  For me, lengthy travel was necessary because there are currently only two surgeons in the USA who do the BCIR, the procedure I wanted instead of the readily available ileostomy.  There are also a limited number of surgeons who do K pouches, a similar procedure that avoids the need for an external bag.  I would hope that travel distance would not discourage anyone who would want either a K pouch or BCIR. 

I will definitely need a seat cushion for sure...I am not looking forward to the ride home at all.

Bill, I asked about the BCIR but was told they don't do them much in Canada anymore..I don't know why..I am having my surgery at Mount Sinai in Toronto..Unless they just don't do it there. 

Also, how long approximately do you need to stay in the hospital afterwards?

I feel much better hearing positive responses..Thank you all so much

 

Crystal, there is a list of K pouch and BCIR surgeons in the K-Pouch Korner forum that shows Dr. Zane Cohen and Dr. Robin McLeod who are at  Mount Sinai in Toronto.  There also is a Dr. Brian Taylor in London, ON.  I believe that all of them do K pouches.  Although I have and highly recommend the BCIR, the K pouch is very similar and also has a very high success rate.  I would definitely opt for a K pouch over a conventional ileostomy.  The customary hospital stay for the BCIR at Palms of Pasadena Hospital in St. Petersburg, FL is 21 days.  Upon discharge, I had no trouble managing my BCIR.  Some surgeons require a shorter stay, but you could ask them about it ahead of time.  Please feel free to send me a PM with any questions you have.

Bill

Wow !! 8 hours..I also had 6 other abdominal surgerys also including hysterectomy for endrometreosis.

They left one ovarie which I will be getting removed at the same time as well as the gallbladder..

The thinks or bodies go through doesn't seem fair...I thought when I got the jpouch back in 99 everything would be great and it was for abit .My CRS says bathroom trips should have been 5-7 but mine were always 10-12.

The pouch-vaginal fistula was almost 3 years ago and terrible inflammation as you mentioned ..

I am terrified of this surgery and scared that I still won't feel good after I get the ileostomy. But I no they are fears and when I remember back to when I had a temporary one..That was the best quality of life I think I had. I think I am making the right decision.

I am just super nervous..I have surgery in 6 days at 8 am.

How was your recovery after surgery ? What bag do you like best? Also is there anything I should bring to hospital with me that I will need. Any advice would be great.

Thank you so much��

 

I had a hysterectomy as well. I had my ovaries removed when my colon was removed. I was postmenopausal so the ovaries were not working anymore,  sorry if tmi. So I think you are on a similar tract.

I am feeling much better. I can actually go out to lunch with friends Again! A little thing but a very big thing for Me! 

FYI Ostomy Secrets has a 40% off certain items sale going on right now. I just ordered a wrap and another pair of underwear.  

 

I have found a few things on Etsy. I have a stoma cup which you can wear over your stoma while changing from one bag to a new one. It is worn with an appliance belt. My hospital stoma nurse included a belt in my prescription for stoma supplies. The cup is helpful if you have to change your appliance while it is active (pooping). I also bought bag covers. They cover the bag while wearing regular underwear. I looked at the Canada store link and things there were more expensive. 

Good luck for your surgery. Let us know how it goes!

Hello, I just registered and am new to the J-pouch forum but not new at all to IBD issues. I was diagnosed with UC at age 19, had my entire colon removed with a j-pouch at age 28. What followed after the total abdominal colectomy with j-pouch surgery, was being opened 6 months later for peritonitis, and them one month later for a small bowel obstruction. I was very sick and needless to say the surgery didn't go as we'd planned and the j-pouch has never behaved as it should. I've had chronic pouchits now for 20 years and been on all kinds of medications. Remicaide induced Lupus which has now resolved. Humira did nothing and now I am on Entyvio. Like many stories I've read, my GI doctor thinks it's been Crohn's all along but apparently it's very difficult to differentiate pouchitis and Crohn's. The aphthous ulcers never clear up out of the pouch and it empties 10 -15 times a day.

Since the very first surgery didn't go all that great I'd always say I'd never have surgery again unless I was dying BUT I have been thinking of having the j-pouch removed and an end ileostomy now for a solid 4 years and my GI doctor wants me to have out as well. I've had some many other issues now linked to IBD, such as arthritis, anemia of chronic disease, malnutrition which has led to severe weight loss at times resulting in a spontaneous pneumothorax.

Having an ileostomy doesn't bother me as much as just having surgery again, but I feel like for me the j-pouch has really robbed me of joy and living my life these last 4 years. I'm so tired. I just had a couple of units of blood a few weeks ago and have to see a hematologist for an iron infusion.

As I type this I can't believe I've lived this long with the j-pouch. Guess i would like others to share about the actual surgery, recovery time, and getting use to life with an end ileostomy. I realize this is a very personal journey because even tthose of us with IBD have the same disease it can present so differently but I would appreciate any information anyone can share.

Ginny
 

Welcome to J-Pouch Group Ginny!

I had chronic cuffitis and pouchitis that ultimately led to my failed j-pouch.  Long story short I had it removed 5+ years after I had the surgeries and wish I'd had it removed 18 months before I did.  I feel much better.

First I had my j-pouch diverted to a permanent ileo and 6 months later had my j-pouch out as it didn't get better.  Nothing was going through it but it was still sick.  I should have had it all out when I diverted but I was stubborn.  

I have read articles that call pouchitis and cuffitis IBDs.  

The removal surgery was not as bad as when my colon was removed.  Maybe it was because I knew more of what to expect.  The rectal stump removal causes an area that takes a while to heal but with a good seat cushion that was not a big deal.

Let me know if you have any questions. 

Paulette

Last edited by TE Marie

Ginny, I am sorry that you are having such problems with your j pouch.  I had mine for 30 years and experienced higher than normal frequency, leakage and butt burn.  Ultimately, recurrent high grade dysplasia in the anal cuff and weak sphincter muscles made pouch removal necessary.  I strongly did not want an end ileostomy for quality of life issues, but a number of posters on this forum have had good results with them.  Instead, I opted for a BCIR (similar to a K pouch) that does not require an external bag or expensive supplies.  There is lots of information about both procedures on the internet.  Both of these procedures have very good success rates and patient satisfaction, but unfortunately are not known or promoted by many GI’s and surgeons.  Selection of a procedure is strictly a personal choice best made after doing your research.

The main difference between the surgery I had and getting an end ileostomy was that my surgeon created an internal pouch instead of a direct exit to the outside.  In my case, surgery took longer than normal due to adhesion removal.  I was in the hospital for 21 days, the normal time for Dr. Rehnke’s BCIR surgery patients and experienced no complications.  My bottom healed quickly and I had no discomfort following my discharge.  In less than three months, I was able to participate in the activities I enjoy and to eat a balanced diet.  Please feel free to send me a PM if you have any questions.

Bill

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