To J Pouch or Not to J Pouch?

Michael S fullIntroduction:

Hello, My name is Michael Schroll and I was diagnosed with Ulcerative Colitis in 2010. I feel like I’ve tried everything but nothing seems to help. I had a recent colonoscopy on September 4th and have moderate to severe colitis with mostly my left side inflamed.

Some more about me:

I enjoy riding motorcycle and photography. I can juggle and am currently learning how to ride a unicycle. I’m a film major from Miami,FL.

Symptoms:

Blood in stool, frequent bowel movements, urgency, fatigue

To J Pouch or Not to J Pouch?

I began to feel sick on my return trip from El Salvador. I lost a lot of weight when I returned to Miami and thought I just had food poisoning. It got so bad my family decided to take me to the hospital. I had lost about 15 lbs. and was extremely dehydrated. I spent the night and was told to visit a G.I doctor. I was still in High School at the time and would skip breakfast to avoid any accidents.

After my first colonoscopy I was officially diagnosed and was told I would need to be on medication for the rest of my life. (Not exactly the graduation present I was expecting.) I have an uncle with UC in remission who was very supportive and helped calm down my family. I thought I would just have to alter my diet and avoid alcohol. NOPE, I also had to learn how to spot the nearest bathroom and deal with flare ups. At first it was very strange for the Dr. to check out my bum and ask about my B.M’s. After about 2 weeks I could care less about giving stool samples and any other procedures.

Fast forward to now and I still haven’t found a medication to put me in remission. Prednisone has caused severe acne and my face puffed up. My G.I told me I could try a clinical study but it seems too risky. I might get a placebo and I’d have to wait 8 weeks, since I just had a remicade infusion. I want to have the J Pouch surgery but my entire family is against it. They think I should keep waiting for some miracle drug to appear. I am concerned about having the surgery and regretting it after. Here are some questions for those with the surgery.

-Do you have any urgency?
-Do you regret it?
-Number of B.M’s per day?
-Is your diet different?

Thanks for any feedback!

Medications I’m Trying/Tried:

Prednisone- 10mg
Azathioprine- 150mg
remicade- Every 4 weeks
Pentasa- 500mg

written by Michael

submitted in the colitis venting area





12 Responses to “To J Pouch or Not to J Pouch?”

  1. Tom from Northampton
    TomOctober 3, 2013 at 6:30 am #

    Hey Michael

    Sorry to hear you’re not doing so well.

    I can’t comment on a Jpouch as I have only had the 1st of 3 operations, however I haven’t regretted my decision to have surgery one bit. I have an ileostomy at the moment but I haven’t decided on whether to go through with the Jpouch yet but I need one more surgery even if i decide to stick with the bag.

    The thing with UC and avoiding surgery is, while rare, a UC flare out of control is life threatening. While your family probably do have some valid concerns, we’re not talking about an annoying skin rash. UC can be life threatening and I wouldn’t pin my hopes on a miracle drug being just around the corner.

    You may in your own head think “im too young for surgery” but ultimatley in your teens and 20’s is the best time to have surgery as your body heals more easily than someone who is in their 30’s or 40’s.

    I’m only 24 and having a bag really ain’t all that bad.

    Best of luck.

    Keep us posted.

    Tom

    • Michael Schroll
      Michael SchrollOctober 3, 2013 at 9:11 am #

      Hello Tom,

      Thanks for your comment!!

      I met with my G.I and she explained that about 90 percent of people who go through with surgery regret they didn’t get it sooner. I am now scheduling my appointment to see a surgeon. My family is finally supportive and having a bag does seem very scary. I’m hoping it won’t be too bad.

      Good luck with your decision and I hope your feeling OK!

      -Michael

      • Bryan CookOctober 22, 2013 at 2:53 pm #

        Hey man im sorry to hear about you being sick. I had Ulcerative Colitis for 14 years I was on or tried every med out there you don’t want to be on prednisone for to long that shit is horrible it tears your body up. If your sick and nothing is working id go for the pouch has your family read or looked into the pouch? I just had my whole colon removed a month ago it was the best thing I EVER did I was scared to death but its not so bad I have a bag right now and im getting the reversal in Janurary j pouch I can eat anything no more pain no ore worrying about if I eat having to be near a bathroom I can go out and enjoy food and myself. No more meds I went from taking 15 pills a day to one. If you need someone to talk to or to vent you can email me brcook2323@yahoo.com

        • Michael Schroll
          Michael SchrollOctober 22, 2013 at 6:40 pm #

          Hello Bryan,

          I’m happy your surgery went well. I’m on 16 pills a day and can’t wait to be on 1 or none! I have my surgery scheduled on 11/12/13.

          Thanks for your E-mail and feel free to contact me as well at michaelschroll1@yahoo.com

          Hope you stay doing well and I will update everyone on how i’m feeling after my surgery!

          -Mike

  2. AdamOctober 3, 2013 at 6:55 am #

    Hey Michael,

    I myself don’t have any first hand experience with surgery, but I did a pretty incredible interview with Curtis down in San Diego several months ago.

    Curtis has had J-pouch surgery with massive success and if you have not already, you should for sure watch the video which is on this page: http://www.ihaveuc.com/a-massive-j-pouch-success-story-finally-interviewing-curtis/

    -Adam

    • Michael Schroll
      Michael SchrollOctober 3, 2013 at 8:49 am #

      Hello Adam,

      I have seen the Interview with Curtis and loved the video. It made me very optimistic and he seemed to be doing great,
      I’m also a big fan of his shirt idea!

      I had an appointment with my G.I and she helped convince my family that surgery is the best option. Now I need to schedule an appointment with a surgeon and hope my teachers will be understanding.

      Keep up the great work with the site!

      -Michael

  3. AndyOctober 3, 2013 at 8:08 am #

    I think anyone considering surgery should try a fecal transplant a first. Just seen another study confirming their efficacy on science daily. It’s really gaining ground as a treatment option.

  4. LindaOctober 3, 2013 at 9:35 am #

    I have a J pouch. After 35 years of UC I had my colon removed…….. ,,,,,,,,,,,,,,,Keep your colon as long as you can.

  5. SonyaOctober 4, 2013 at 8:13 am #

    Try Humira it had put me in remission

  6. Don
    DonOctober 4, 2013 at 9:24 am #

    Hi Michael. Thanks for your story. I have considered surgery also but have decided to try fecal transplants first with the hope that I will be cured. I have gotten myself into remission and will be starting the therapy at home next Tuesday. I will let you know how I do. Good luck in whatever you decide. I know living with this really sucks. I hate it and just want to get back to living a regular life.
    Don

  7. kOctober 4, 2013 at 12:36 pm #

    Hello Michael,
    I feel especially sad when young people have to deal with this horrible disease. I hope your GI specialist and surgeon are good at explaining things and answering questions. There is a series on Youtube (ucandpsc) put up over the last 13 months by a guy who explains everything he went through to getting a j pouch. Some pretty amazing videos.
    (I had an emergency ileostomy in 1975. I was so grateful to be free/cured of uc and continue to be grateful to this day. Life goes on and things haven’t been too hard to live with. J pouches hadn’t been developed yet back then. )
    Best of everything as you move forward.

  8. Mike from Ohio
    Mike HOctober 8, 2013 at 10:32 am #

    I am having a great deal of success with my pouch. If you look in the J pouchers section you will see my entire breakdown of how it went from start to finish. I won’t lie, the road to the pouch was a rough one bt I feel so good now when I never thought I could. Fecal transplants may or may not work and Humira and Remicade are drugs that I would not recommend. They are both basically the same drug. I actually got worse while on them and still have a few lingering side affects not related to the UC. Good Luck in whatever you choose.

    Mike

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