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My Struggle with Colitis – Is Surgery Worth It?

In 2008 I became very ill and had severe stomach pains following with blood loss.

My mom had taken me to the emergency room, I couldn’t walk, hadn’t eaten in about 2 days,and I was severely dehydrated. The doctors had done a bunch of test and came up with my diagnosis of Ulcerative Colitis.¬† At the time I was only the age of 11 and didn’t understand exactly what was wrong. Two weeks later I was sent home with what felt like every medication in the world! I was taking about near to 12 pills a day just to get through the day. As the years passed I had more flares and now it is the year 2011 and i have been on steroids since 2008 as well as all of my other medications. I felt as if i was just going to have to live with it and learn to deal with the pain. But for my mom that wasn’t an option she wanted to make my life better.

This past summer I took a trip to Dallas for a second opinion and the doctor had told me my current doctor was giving me the worst treatment I can get and recommended me to have surgery. We went back home and talked to my doctor about the surgery and he finally agreed to do it. Now my problem is that because I’ve been on steroids for so long my body depends on them now and every time they try to take me off my body reacts in a bad way. Also in order for me to make surgery an option I need to get off the steroids.

One question I have is life more of and improvement after surgery or would it not be worth it?

written by Jasmine

submitted in the Colitis Venting Area

 




surgery

8 Responses to My Struggle with Colitis – Is Surgery Worth It?

  1. Blake December 1, 2011 at 3:56 pm #

    Hey Jasmine,
    I’m actually getting my whole colon removed in 5 days and I’ve been on steroids pretty much this whole year. The surgeon told me I will continue to take Prednisone through surgery and start weaning off them after surgery, so I don’t think you have to get off them before surgery. I’m not sure what surgery you’re considering, I’m doing the 3 part J pouch surgery. Talk to your doctor again about the steroid thing, not sure they are giving you correct info. Good luck.

    Blake

    • Jonathan December 24, 2011 at 9:23 pm #

      Hey Blake, I had my 1st step for the jpouch surgery on October 4th. I was on Prednisone for around two years and the reason the surgeon said I needed to do a three part surgery was in order to wean me off of the prednisone ASAP so that my small intestine could heal up and become stronger for step 2. Prednisone has horrible effects on the body and it makes your intestines more brittle and delicate. One of your goals from the first surgery to the second surgery should be to exercise (walking is good for the intestines) and eat as much protein as possible in order to get the small intestine in the best possible shape for the jpouch part of the surgery. This is all coming from my surgeon, I hope it helps. – Jonathan

      • Blake December 25, 2011 at 1:43 am #

        Hey Jonathan,
        Thanks, didn’t see your post till now. I am 2 and a half weeks out since I had my colon removed and I’m feeling so much better than I did with a colon. When are you getting your 2nd surgery? I am in no rush, I thing I will wait atleast 6 months to get my second surgery done. I want to fully heal and get that shitty Prednisone out of my body. Hell, maybe I’ll wait a year. I’m also very scared of the J Pouch surgery, not because of the pain or anything, but I’ve heard so many people talk about going back to their symptoms of UC after having it done, it would make anyone scared. But I guess we just got to hope for the best. Anyway, hope to hear from you Jonathan, Merry Christmas!

        Blake

  2. Adam
    Adam December 1, 2011 at 8:20 pm #

    Hey Jasmine,

    From pretty much everyone who i’ve met who has had the surgery, they almost all say the same thing: “Best Decision Ever made”.

    I’ve definitely had times in the past where I’ve thought about it, and definitely thought the same things or at least similar types of thoughts that you’re thinking. I haven’t had surgery at all, but it seems pretty clear that for the people who have had surgery, it’s been really positive afterwards.
    Also, if it’s helpful for you, my uncle had surgery years ago, and lived 30 plus years of symptom free life afterwards. He was really sick before the surgery, and got back to excellent health afterwards.

    Best of luck to you,
    Adam

  3. Stefanie Douglass December 3, 2011 at 12:49 pm #

    Hey!

    I have struggles with U.C from the time I was 12 to 20 years old. I tried everything in the book to get it under control, but nothing seemed to work for me one bit. Finally my doctor told me about 3 set J pouch surgery. I talked it over with my family and we agreed to go for it. I am 18 days out of set one surgery and i’m still healing but it’s been amazing not having to go to the restroom all the time. I know i still have a long way to go with recovery but it’s been positive so far! :)
    As of being on steroids during surgery isn’t a problem. I was and slowly tapping off of them. it shouldn’t effect you at all. Good luck with everything

    -Stefanie

  4. Molly
    Molly December 5, 2011 at 12:05 am #

    Hey
    I am 2 years post surgery and it was definitely one of the best things I have done. I had the three part J-pouch surgery done. There were a lot of ups and downs but it was so worth it in the end. I am convinced that anyone who can make it through a bout of butt burn can make it though anything! I am now a junior in college and doing great. If I had a flare up when I was in college I would have had to drop out. Best of luck!
    Molly

  5. Stephanie December 19, 2011 at 5:49 am #

    Go for it!
    I am 11 years post j-pouch surgery and had mine done at the age of 10 when I had literally run out of options. I was put on heavy doses of prednisone pre-surgery in order to control my symptoms so I’m not sure why they would need you to be off of it to have surgery. This decision can be very scary as a young female and I encourage you to ask questions! My personal surgery experience was quite miserable with the colostomy dehydrating me to the point of constant hospitalization after surgery and early takedown/reconnection, but I couldn’t be happier to have had the surgery today. Life has definitely improved since surgery especially since, like you, I had become dependent on steroids.

    I take two over the counter Imodium pills a day (personal preference is the Wal-Mart brand of equate) and watch to avoid foods that irritate my small intestine. I have probably 4-5 bowel movements a day, with no cramping and no blood. And the j-pouch is awesome because once you get the urge to go to the bathroom you can hold it without feeling the need to immediately go, I was told it was helpful after surgery to hold it as long as possible to stretch your pouch.
    Hope this helps!
    Stephanie

    • Drewmun247 January 18, 2012 at 9:36 pm #

      Hi
      I had the two step procedure in November 2000 with the jpouch reservoir hooked up in Febuary of 2001. Suffered, like most, for about one and a half years and lived in “fear”. 10 plus years later, the only real fears that I have are night time incontinence. It happens maybe, twice a month. My sleep is effected, I have learned that it takes six hours for food to go “through” my system and if I eat late, I will be awake to do my business (when I catch myself, which is 99% of the time). I had the entire organ removed and left two mm of rectal tissue. I have gone from 4x yearly sigmoidoscopys to every other year. I was on Asacol , Prednisone (lots). The Pred, while it gave the Asacol a boost, it also gave me an atrial fibulation, reumatoid arthritis and I had to wear glasses(?!?). Since the surgery the only problem was I had an infection on the surface of the skin where the incision was (OUCH). This procedure to drain the puss may have been the worst pain…. EVER. But eleven plus years later…. With the help of some great docs at DHMC and a wonderful then fianc√© now wife I am as normal as I could hope to be.

      PS thanks for this site, great to hear others are still fighting

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