Community Forum

Found out today that after battling ulcerative colitis with a wide variety of meds and treatments for 30 years - yes, really - my doc says it's time to throw in the towel and take out my colon.  Doc says I can get a J-pouch.  He made it sound good - disease gone, symptoms gone, there you go.  But then I have been reading that it's a two-stage surgery (he made it sound like one) and that the post-surgery recovery time includes a bag and lots of time. Biggest concern is that you apparently still have that sense of bathroom urgency and have to go to bathroom 6-8 times a day.  so, QUESTION:  What is post-J-pouch surgery really like?  Is life still centered around figuring out where all the bathrooms?   Thanks for your feedback.

 Reply posted for hockadoo.

'm a 30 yr old female and i just had my reversal in march! my first surgery was in december 2011. i have the jpouch and it is fantastic. i won't lie. the first 4 weeks post reversal were pretty much *** . i didn't leave my house very much but at the time u are still recovering so time does go bye fast. i was very cautious as to what i would eat( stuck to starches and more solid foods that were gentle on my system). try and get as much rest as u can bc i would notice that every time i would get into bed to lay down my body would have the constant urge to use the restroom. this was more mental than physical. try and hold it as long as physically possible. i had many sleepless night where i would cry and just ask "why me". i promise u this will all go away. learn to focus on the good minutes in the beginning and as the days pass take note of the good day/s. as the weeks go bye you will have more better than bad and next thing u know you will wake up and feel normal. it may sound crazy but my worst day was easter of this year. it was 2 days before my 4 week marker and it was the worst day i have ever had in the 15 years of being sick. i wanted to give up and go back to the bag. i thought to myself  " how can i live this way. is it ever going to change or get better ".i woke up that next morning i felt like a new person!! i have been completely good since that day. no accidents, problems, pain...nothing!!  i am now close to 5 months post op and for the last month and a half i have been back in the gym training for the nyc marathon!  i am back to my normal daily routine and i feel great. all my energy is back and better than ever! i am lucky if i go to the bathroom 3-4x its fantastic!! the jpouch only keeps getting stronger as time goes bye. so to think how great you will feel in a year it doesn't seem possible.but believe me it is.

 Reply posted for hockadoo.

Hello and welcome to the no colon club!
I have had crohns disease for 20 years.  Resections in 1995 and 1997, then the final resection removing the balance of my colon 10 months ago.

The good news...Ido NOT have an appliance(jpouch)....personally, I did not know it was possible, but I function just like before....soft, looses stools a few times a day.
Look into it...life is good.  My small bowel is simply connected to my rectum.

good luck to you!

 Reply posted for Denise70.

I had my final surgery about 26 years ago.  I was 12,  I will  admit i had no input on whether i wanted to have the surgeries or not.  I was diagnosed when i was 9.  I was just so happy to get it all over with ( wearing an iliostomy during 6th grade was a nightmare!). I have had very few problems since then, I do have to be careful what i eat. I love watermelon but you have got to be near the restroom when you eat it. When I was diagnosed the only medications being used were Prednisone, and Sulfasalazine.  They did nothing for me.  I finished school, went to college and am currently married with 3 kids. I hope this helps.  My Operations were done at in St Louis

I had my colon removed after 4 years of suffering from what doctors thought was Ulcerative Colitis.  I was losing so much blood there weren't many options; I had tried all the medications doctors suggested with little success.  The plan was to do a J-Pouch; but, when they did a biopsy on my colon after they removed it, they discovered it is Crohn's Disease.  Because of the chance it will recur in another area, they recommended I not go through with the J-Pouch.

It's been about 1 1/2 years since the surgery, and I feel great!  Yes; the pouch takes awhile to get used to (mentally and physically), but my life is so much better.  I feel like I have my life back again.  I don't have the pain, bleeding, urgency, and I don't have to be near a bathroom constantly.  I can eat almost anything I want (raw vegetables like celery and apples are the only things that have caused problems so far).  And I can leave the house (even travel) without fear again!

For someone who doesn't respond to medications, I would say don't be afraid of the surgery.  It's a major thing, so do your research and be prepared, but don't ignore it as an option.  For me, it's like a miracle.

 Reply posted for hockadoo.

Hi,

My daughter is 14 yrs old and was diagnosed in May 2012 with UC and after a few weeks of Remicade and severe bleeding, they had to remove her colon. Yes, she's got the bag but I can honestly say she is up and around and looks happy. The ostomy has been more of a challenge for me as a mom to change, but to know that she is pain free is well worth it. She will have her second surgery in September and her third in December but I can say that surgery was the best thing the doctors decided to do with her. We are hoping will be back to her self once she has her final surgery.

Thanks,

 Reply posted for hockadoo.

BEFORE you have surgery, you should check out my post under Treatments- titled Fecal Transplant a UC Cure?.

i had IBD for 30 plus years as well and could see that i had high odds of eventual surgery until i discovered FT from a GI doc that is a friend of mine. 

You should give it a try before surrendering you colon. My brother had all sorts of problems with his j pouch and it finally gave out afer 11 yrs. 

Good Luck

Tucker

I had the BIG, BAD news last year. I had my colon removed on June 8th of last year and I am so glad I did.  I had a really hard time with ulcerative colitis. Its been only a year and I am myself again. I don't have to take any more medication (I was taking about a dozen pills a day) and I don't feel that horrible pain I used to feel. I had to have the bag for about 5 months, Yes, I do have to go to the restroom about 6 times a day but then again that is about the amount I had to go before. The first couple of months I did feel that urgency to go to the restroom but I don't anymore. I highly recommend you have the surgeries (yes, it is 2 surgeries. The colon is removed
in the first one and your intestines are connected and then when you heal the ileostomy is reversed) 

 Reply posted for hockadoo.

I had my entire colon removed and then the J-pouch procedure done where I live in Japan.
I was diagnosed with ulcerative colitis in 1990 and controlled it (sort of) with steroids and
other medications until 2008 when I was told (as you were) that I had to have the operation.
The colon removal and following life with a "bag" was difficult, but then only 4 months later
(I wanted to do it asap), the doctors reconnected me with the J-pouch procedure.
It only took about 2 months for me to be able to control my bowel movements and to return
to a normal life.  Now, 4 years later, I hardly think about my old bowel problem.
I do have bowel movements about 6 times per day, but there is no feeling of "urgency".
The only thing I have to watch is if I drink a lot of cold beverages or eat ice cream.....
If I know I am going to be doing that, I wear a "pad" in my underwear in case there is
leakage.   Sometimes cold drinks or desserts cause a tiny bit of liquid (no solid) leakage.
But otherwise, I can eat normally and go running and dancing and work at my teaching job
and feel much freer and more relaxed than I did during the many years of colitis attacks.
I recommend having the operation and re-attachment operation.  It's a long procedure,
but you will get a new lease on life if you do it.  You will feel normal and healthy and
have new confidence.  Just do it.  You will be fine!

I can relate to your post i to have uc for 15yrs plus. No drugs have work execpt the prednisone i am on it now 20mg. Tried 2 research drugs was on Remicade work for a while. My bigs fear is for my Dr to tell me the same thing he told you. One year ago we discussed it but he suggest to me not to do the j-pouch because of all the trips you can still be making to the bathroom.  I just want LIFE back to be able to leave the house go and eat out without having to find a bathroom ASSP. I would love to keep in touch with someone that is going though the samething i am, i live in a rural area we do not have a lot of resourse. I travel 2 hours to my Dr. my Email address is chynek20@gmail.com. Would love to hear from you and how things are going. I have days i feel good than days I am in the bathroom 8-10 times a day. I wish you a lot of good luck what ever your decision will be. I am sure you will feel much better, that is what i have been told.