Surgery for UC

Hi everyone,

This is my story, ill try to keep it short. Diagnosed in march of 2011 with left sided colitis. After several months of anti inflammatories not working, along with anti biotics, steroids and just plain will to conquer, I ended up being hospitalized. At the time of hospitalization i was asked to keep a journal of my bm's, by day 7 in the hospital i had reached 144 times! The solumedrol did not work, then i was placed on remicade. After a flex sigmoid the GI said that it was not good, and that i have colitis as bad as you can have colitis, thus changing my initial diagnoses of left sided colitis to full blown pancolitis! Remicade allowed me to leave the hospital, but i wasnt able to return to work until after the 3rd loading dose. The 4th infusion seemed to work a little better but still no remission. So, here i am about 1 week away from infusion 5 and ive decided to have surgery, after my symptoms worstened after 3 weeks post infusion 4. My GI feels that my immune system has been suppressed to the point that any infection at all can be a serious threat and does not want to give me any more prednisone. I have been unable to achieve remission in this past year, and have decided to do the surgery to get my life back to "my" normal.

That was just a quick overview of what i went through! In no means is it meant to discourage people from trying different paths to remission. I havent had colitis long, but one thing i truly learned was that every individual case is unique. My body was just stubborn and now its time to conquer it for good! I wish every person with IBD a healthy life, and its good to know your not alone and life can be normal for us.

If anyone has any thoughts on surgery please share

Good luck! I had surgery 3 months ago and I'm definitely back to normal now.

Congrats on your decision! You can post on the ostomy board if you have more questions - the people there have already had surgery. Other good sources of info are jpouch.org and the website ihaveuc.com. Good luck and keep us posted!

Newfie87-
Best of luck with your surgery! I'm in the same boat as you. I was diagnosed Mar 2011 and have been through Pred, Imuran, 5ASA and remicade. I'm left with the choice of Humira or Surgery at this point. Where are you getting your surgery? Please keep us posted with your progress.

Sorry that you have had so much trouble, but congrats on your decision.

I was hesitant and originally disappointed to have to have surgery, but now I couldn't be happier! Best decision I could have made.

Good luck with the surgery.

Hi,

My surgery will be performed in Kitchener, ON. Not sure of the details of the surgeon yet, as the booking has not yet been completed. I considered humira, and my GI had no problem switching from remi to Humira, his only concern was that remicade never really worked for me and he said that humira would likely just give me the same temporary relief as remicade. He said that humira might have been a better option if remicade worked and gave me that miracle recovery, but based on the fact that remicade never did that he said it was unlikely humira would work differently. Also, im at the point with work and life that I cant go on trying medication, so surgery it is! thanks for the response, these forums are a great resource and very supportive!

I forgot to mention that i currently take Imuran 50mg/day, and remicade every 8 weeks

medication that ive tried: 5msa's asacol and salofalk, cipro, flagyl, entocort, teva prednisone, apo prednisone, IV prednisone(solumedrol), remicade, imuran

M/23 - ON- CAN

I was thinking the same thing, if I were in your shoes, I would try to get to Mt Sinai especially if you are going for the jpouch and not the end ileo. Is there any way you can do that?

     I wish you  the BEST of luck.  Reading all the meds you have tried to no avail...I would say, yep, you are ready for surgery.  Thankfully, you have a GI doctor who has your best interest at heart and knows when enough is ENOUGH!  Unfortunately, I did not.  I suffered with UP (mine was proctitis) for twelve years...on 6MP for eight years but it didn't keep me in long term remission, then on Remicade (failed after 3rd infusion but I gave it another shot at a 4th..nada)  and Humira (no change after three months).  I became prednisone dependent and it was killing me.  My GI suffered from the "I think I am GOD" syndrome and was not willing to send me to a colorectal surgeon.  All he wanted to do was try more and more meds.  So, I found my surgeon online.  I live in south Jersey and do not trust the doctors or hospitals in this area for major surgery.  I had my surgery performed at Pennsylvania Hospital in Philly by the head of colorectal surgery at the Univ of Pa.  I was not a candidate for j-pouch for several reasons, so I had a total colectomy with end ileostomy.  Let me tell ya, living with a bag is a heck of a lot better than existing with UP.

     God bless and keep us posted !!

Newfie87-

My situation was very similar to yours. I too had a severe flare that landed me in the hospital for a couple of weeks and even large doses of solumedrol did nothing. Mine was also diagnosed as pancolitis. Like you, Remicade got me out of the hospital. However, I had a bad reaction to the first infusion and ended up getting my surgery a month later. I am so happy with the results of my surgery and have absolutely no regrets. I feel amazing and am back to living life to the fullest. I chose a permanent ileostomy. You can read about my experiences on my blog... the link is in my signature. Best wishes!

My son had a colectomy and J pouch built 2 years ago by Helen MacRae at Mount Sinai in Toronto. There is not a day goes by that I do not say a silent thank-you to her. She gave my son his life back.

Of course this is major surgery and it is a long road with lots of ups and downs BUT we consider it a blessing that surgery was the route we took. My son is completely healthy and living life exactly the way a young man should.

I do believe, very strongly, that you want the very best colo-rectal surgeon that you have access to. This is a very complicated surgery with many judgement calls that need to be made along the way. You want someone who has done zillions of these operations. Living in Kitchener I would not hesitate to travel to Mount Sinai. You are so fortunate that you live close enough to the best surgeons in Canada.

If you have any questions we are always happy to share our journey.

Newfie-

I think you will be in wonderful hands there at Mt. Sinai if you decide that's where you want to have it done. I am EXTREMELY happy with my J pouch. It has been such a blessing. I am so thankful for this surgery. I was really ill with my UC. Non of the meds worked and my UC was what they call steroid refractory UC which means that even high doses of prednisone couldn't get it in check. My colon was totally shot.

The surgery is no walk in the park but I'll tell you what...I would do it all over again in a heartbeat. If there is anything specific you would like to know, please feel free to ask. I would love to be of any help. :)

I have total control and I have from the very beginning. There is no urgency at all. I work in a retail store so I can't be running to the bathroom all the time. During your recovery, right after takedown (getting all hooked back up) you may have some urgency and your frequency may be higher at that time until your body adjusts. Of course everyone is different (just as everyone's UC is different) but in just a few weeks after takedown I was back to my normal crazy routine running my kids around. I use the bathroom about 4-6x a day...one of those being in the middle of the night which is my only complaint. That may sound like a lot but it's really not a big deal. I pee more than that because I drink a lot of water so I just empty when I go pee. There is no urgency or cramps...you just go. And it's quick...pooping with a colon takes a lot longer in my opinion! I think the best part is knowing you never have to wait for the proverbial shoe to drop ever again. No colon...no UC. I have chatted with many people on other forums that do hiking, biking, running marathons, firefighting, you name it. Once you are recovered from the surgeries and healthy again, you will be able to do all your favorite things.

Again everyone is different. This is how it's been for me. I can tell you my sister and my Uncle also have j pouches (my sis 20 years now and my uncle around 15 yrs) and both of them have no issues at all either. This is how it goes for the majority of people. There is always that chance of a bad outcome, but it's not too common in the grand scheme of things. For some reason a lot of people think that this surgery leads to nothing but trouble but that just isn't true. A highly skilled surgeon is key and that will make all the difference. ALso, some of the problems stories you hear are people who had surgery for UC and it turned out to be Crohns that they had. Of course there is always the option of a permanent ileostomy and that's great too. I just knew I wanted to try the jpouch since I saw how well my sister and uncle have done with it. Hope this helps.

It's definitely a fair trade...one I will take for sure. I was going 20-30x a day toward the end! Let us know how you make out with your consult. I traveled a bit of a distance too to have a great surgeon...you just have to! Good luck!