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Starting the J-Pouch Journey

Who is Dan…

I’m one of those rare Los Angeles natives and have been all the way up and down Interstate 5. Technology nerd, baseball fan, and I love to travel. I’ve visited Japan, Spain, Italy, England, and Canada so far.

Dan wrote:

I currently have no symptoms of Ulcerative Colitis.

Dan’ Story – “Starting the J-Pouch Journey”

I first experienced signs of Ulcerative Colitis about a year ago while my dad was battling cancer (great timing, eh?). It started off controllable but after a few months every medication began to fail. I tried diet changes but nothing stopped the bleeding. In January 2016, I had to be rushed to the ER after a week of pain and irregular bowel habits. I was so malnourished that I had lost 80 pounds (over two weeks) and was very anemic. They pumped me full of steroids and rebuilt my nutrition, iron, etc. for exactly one month. I was released on steroids and Lialda. Two weeks later I started Remicade. It seemed to work well and I spent another month recovering/rebuilding my strength. In April 2016, days before I was scheduled to go back to work I experienced extreme abdominal pain. I tried everything to get rid of the pain because I feared the idea of having another month long hospital stay. The pain got so bad I eventually gave up and drove mysel f to the ER. Within 1 hour I was told that my colon was perforated, I was septic, and I had peritonitis. I asked for an hour to “think” about consenting to the surgery. I laugh about that because it was the first time I’ve seen two doctors’ jaws drop simultaneously in disbelief that someone was “thinking” about life or death surgery.

The end result? I had a total colectomy with an ileostomy. The future plan is to have 1-2 more surgeries in the next couple months to a year for the J-Pouch.

This has been a long and tough journey with a lots of ups and downs. My GI once said “everything that can go wrong, goes wrong” when talking about the progression of my UC. But I’m optimistic that the surgery and eventually the J-Pouch will finally provide some much needed symptom relief.

The biggest challenges for me are mental and dietary, I’m still battling some depression and trying to figure out what I can or cannot eat. Any tips would be greatly appreciated.

A big thank you to everyone on this site for sharing your stories and Adam for maintaining it! It helped me tremendously while in ICU depressed with a tube down my nose and throat. I wish everyone going through this the absolute best. You have to be extremely tough and brave to battle this disease.

Medications Used:

I’ve tried Sulfasalazine, Mesalamine (various), Prednisone, and Remicade.

written by Dan C

submitted in the colitis venting area

5 thoughts on “Starting the J-Pouch Journey”

  1. Hi Dan C, all the very best for your stoma and pouch (I hope they work well on you). Please keep us updated on your health and follow ups. I would really appreciate your updates as my brother is planned for IPAA as per his GI doc.
    God bless you

  2. Just wondering if before you went on remicade you thought about methotrexate that’s what I’m trying now but still bleeding and having “regular” bowel movements even with iliostomy (had total colon removed last november after it perforating

  3. hi Dan,

    Yes, those ng tubes are the worst! As I lay there with that in, and a catheter in, and an iv, I was afraid to even fall asleep, for fear that I would roll over and pull one out. Fortunately it never happened.

    Like you my colon perforated, and a few hours later I was in surgery. I had been admitted to the hospital a few days earlier and had been told the night before what might happen so it was not a complete surprise.

    J pouches hadn’t been invented yet, so I have had a Brooke ileostomy for over 40 years now. It hasn’t been too bad really.

    I wish you al l the best as you move forward.

  4. Hey Dan,
    Sorry you went through all that crazy surgery, pain & all that goes with it. I also have a stoma, and went through most of the medication prescribed for UCers. I encourage you to work with your doctors to get lab tests done to see what your body might need including vitamin B’s, calcium, D, etc. unfortunately I have found with the stoma many of these supplements and medications that I had taken don’t dissolve before popping out of my stoma. Yeah you find out exactly what your body is actually digesting when it comes out of that stoma.
    Your doctor can suggest a psychotropic medication to lift your depression, but please know that once you are lifted up out of the depression it’s really important to change things in your life that may contribute to the depression. Sometimes this is the most important thing you can do. So if you need to exercise more regularly, change your diet to the SCD, have your thyroid tested which can produce symptoms of depression, etc. etc to improve your mental state, this is the time to do it. It is really difficult to do positive things for yourself if you are in a deep depression. Hopefully you have support to help you with this
    . I have also recently read that some of the “happy chemicals” that we need to keep us out of a depressed state are produced in our guts. More research needs to be done in that area, but I’m often concerned that now that I have no large intestine is it going to possibly reduce those “happy chemicals”. Having no colin is an interesting dance of nutrition, exercise, and dealing with shit coming out of the front of our guts. I am experimenting with food, keep a food diary, and also get blood test to help me know the levels of iron, D, calcium, etc. etc. that is in my body.
    Right now I have a new challenge because I broke my right wrist, which is my dominant hand, and now I have to have help again with the pouches, Cannot exercise as I has been, and it itches like crazy under the cast. As your doctor said “if anything can go wrong it will go wrong”. So I’m now fighting a lot of frustration and at times feeling overwhelmed, especially since I cannot drive, and cannot get back in my kayak as planned. On the upside the weather is absolutely beautiful, I’m watching The fox, deer, rabbits and possum playing on our yard, & the ducks, geese and Herron on our lake.

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