Looking for Answers on Elective Colon Surgery

I was diagnosed w/ Ulcerative Colitis 8 years ago and coasted along well for some time.

During my 1st pregnancy I had a bad flare and since then I flare every 1 1/2 to 2 years. I take Lialda & Canasa regularly and prednisone during flares. This isn’t working well and I don’t want to take azathioprine or Remicade. I think I would rather have surgery.

What are other UC sufferers thoughts on surgery?

My Medications:

Colazal, Lialda, Canasa, Prednisone

Submitted in the Colitis Venting Area by: “Livin the UC Life”

 

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5 Responses to Looking for Answers on Elective Colon Surgery

  1. OrdinaryWorldWhereRU July 31, 2011 at 5:16 pm #

    Personally, surgery is my absolute last choice. I have had 2 Remicade infusions and so far so good. I have had no side effects and it has helped my symptoms. I was told that the 3rd infusion usually gets to the best result and it is maintaining from there. I did apply for aid to help pay for it since my insurance coverage isn’t very good. I have also been on a variety of medicines which did not keep me in remission. I am not quite sure why people have such an aversion to trying it or other meds before moving to surgery. The IBD is far scarier than the meds and after an extremely bad flair, I now feel that way. The disease punished me worse than any medication I have been on. It also punished me worse than when a vertebra ruptured in my neck. If there is ever any evidence, other than anecdotal, that specific foods can put one into remission, I will try it but until then I still rely on the documented research. I have tried some of the specialty diets but they didn’t put me into remission, only lessened the symptoms. I thought that was good enough until things quickly spiraled out of control. Now he keeps me under close eye and constantly reminds me to never let things get like that again. The damage was going on the whole time, I just didn’t want to believe it. I also figure if I cannot stray from eating certain foods without the obvious symptoms returning, I am not technically in remission, only keeping the symptoms under control. I know this is in contrast to folks who follow specific diet regimens but I would rather be honest than be afraid to express a different opinion. If the Remicade starts to fail me he said there were 2 meds left but neither work very well. It may mean that surgery will be presented but he won’t even discuss it until we exhaust the meds.

  2. heather July 31, 2011 at 6:29 pm #

    Hello. I have been struggling with uc for 10 years. I have been on every medication. I have been on high doses of prednisone and immuran for the last year. Things are the most in control that they have been in 10 years and I still have disease. The next step in surgery. This is something I decided last year in the hospital. No medicine will work continually for me. They work for a little bit and ten my disease finds its way around the medications. I am having one last colonoscopy to make sure things are calm, and then I am off to surgery. This is the last resort. I would like to have a life. I can’t advise you on what to do with yours, but I know that my surgery cannot come soon enough. In the last two weeks I have been diagnosed with both osteoporosis and cervical lesions (pre-cancer). . . due to severe immune suppression. I need to get off of these meds before they cause something else to go wrong. I wish you the best of luck on your journey. You are the only one that can make the right decision for yourself.

  3. Ben July 31, 2011 at 7:25 pm #

    Surgery was also a last option for me — after 6MP and Remicade and SCD and everything else under the sun failed. I had my first surgery on June 27 and have my J-Pouch takedown surgery scheduled for August 30. The recovery has not been easy and some days are really hard, but on balance, I think even the worst days are better than being sick with UC. I have a blog which describes my UC experience, thought process regarding surgery, and — in sometimes graphic detail — the surgery itself and my recovery. You can access it at http://knowguts.wordpress.com. Hope you find it helpful. Feel free to contact me on the blog if you have any questions. Good luck!

  4. Dawn July 31, 2011 at 8:21 pm #

    It is important to realize that there are different thought processes when it comes to the long term management of UC. I’ve come across those who will try every natural method possible because they don’t want to be on medication (diet, supplements, worms, etc.). I’ve seen people who insist surgery is the last resort and they want to run through all of the medication options available before they are even willing to entertain the possibility of surgery. Then there are those who decide to have elective surgery though they haven’t gone through all of the medications available. None of these are necessarily right or wrong, but you have to look inside yourself and evaluate your own experience to decide where you are at and which road is right for you.

    Personally, I fell in the elective surgery camp. I was Prednisone dependent and was running out of options that didn’t include the biologics. I am not against this class of drugs by any means, my four year old son has JRA and we’ve seen amazing results from biologics, but I ultimately decided it was not the way I wanted to go with my UC treatment. I felt like the drugs either work or they don’t (for plenty of people they just don’t work or work well). I also felt like they would probably only work for so long and then I would be right back where I started except with more of my life sacrificed to this illness and potentially dealing with side effects from the drugs on top of everything else. I made the decision to have my colon removed. I currently have an ileostomy with plans to have two more surgeries and ultimately have a j-pouch.

    Life with my ileostomy has it’s own challenges but—for me at least—none of them are anywhere as difficult as life with UC was when I was sick. If I had it to do over knowing what I know now, I would still chose surgery today. For me, it was the right choice. That may not be true for everyone and we each have to examine the options and make our own decision. If I was in your position I would:

    1) Keep reading through the stories on this site and connect with folks on the Facebook page. The more you reach out and read, the more you learn about how other people are managing their IBD.

    2) Check out the Ulcerative Colitis forum and Ostomy forum on the Healingwell.com site. The Ostomy forum, in particular, has been a life saver for me as I’ve gone through this process. The support there is amazing and there are some really experienced individuals there who can share their stories and answer your questions.

    3) Research potential surgeons/hospitals. I really feel strongly that every UC patient should have a surgery game plan in place, even if they never want to pull the trigger on it or see it as a last resort. Researching to find a reputable surgeon, and even potentially consulting with him/her is something you owe to yourself so that you don’t find yourself without good options if you end up needing surgery unexpectedly. There are many stories out there of individuals who went into the hospital with a bad flare and came out without their colon because things just got that bad. I personally decided on the Cleveland Clinic in Cleveland, Ohio. They are #2 in the country for GI and perform thousands of these surgeries every year. The Mayo Clinic is #1 and another great option. This point in the process would be a good time to learn about surgery options such as a permanent ileostomy versus j-pouch and how you feel about them, too.

    4) Give yourself permission to decide. I went through a lot of mental anguish because I felt like I wasn’t “sick enough” to need surgery (whatever that means). I’ve heard a lot of stories from other people who went through the same thing. It’s a strange place to be in because you have to overcome feeling like you are giving up. I don’t think anyone ever wants to have a major surgery, so it feels weird picking that as your path to travel. It can be mentally challenging.

    I keep a blog that covers the month or so leading up to my surgery and what things have been like since. I will keep updating as I move forward because I want to share the information with people like you who are trying to decide what to do. I just want people to be able to see what it’s like and ask questions, etc. If you decide to check it out, feel free to leave any questions in the comments and I’ll be sure to answer them as best I can.

    Whatever you decide to do, make sure it is the right thing for you and then stand firm in your decision. I hope you find a path to wellness soon.

    Dawn

  5. Curtis
    Curtis August 4, 2011 at 2:18 pm #

    I was in a situation where my symptoms came on so fast and strong that surgery was the only option. They started me on Prednisone and Remicade infusions ony about a week after my diagnosis, that’s how bad I was, and neither of them helped at all. Even if I went back in time and the medications were working, I would still choose to have the surgery. Even thogh I only had UC for about 2 months, and it was really really severe and bad, my quality of life right now is incredible. I feel normal again which is so great. Recovery from the initial surgery for me was really hard because I was in such bad shape at that point but now I am doing so great. My whole J Pouch surgery will be done in 3 surgeries, 2 of them are already over with so I just have my takedown surgery in September and hopefully it’ll be a piece of cake because all they have to do is remove my ileostomy and I’ll be done. My update should be posted today or tomorrow so stay tuned for that.
    Hope everything works out.

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