End of the road…J-Pouch?

Intro:

I am a 26 year old male diagnosed with UC and PSC in 1996. Growing up with this combination has been both a struggle and has helped me to appreciate every day.

Some more about me:

I have always been quite active despite living in a constant state of active UC. I played sports in school and would strive to be the best despite my clear disadvantage. I also have played in several bands touring in various parts of the country…you can imagine how that would go with UC.

Current Colitis Symptoms:

mild to severe flare

Is it J-Pouch Time

This past week has been a doozie. After much research on Low Dose Naltrexone, I finally convinced my Dr to prescribe it for me. However, he wanted me to have a colonoscopy to set a baseline to see if it was actually helping. Literally 10 minutes after picking up what I thought would be my ticket to remission, I received a phone call from his office nurse. Several of my biopsies had come back as abnormal (precancerous) from the lab and he wanted me to have surgery ASAP. To make matters worse, the combo of the prep and the procedure itself had thrown me into a full blown flare up.

History:

I was diagnosed with UC and PSC in 1996 when I was 12 years old. As most kids wouldn’t, I had no idea what this meant and I just got used to crapping my brains out regularly. I ate like a normal kid and was on prednisone for years at a time. I got used to the blood draws and colonoscopies and other procedures. I would end up in the ER at least once a year for one thing or another. This continued into my late teens and early 20′s. Finally at age 24, I decided to try eating better and cut soda, red bull and other various things from my diet. I noticed a small improvement and continued that way until a flare up nearly put me in the hospital. Then I decided to go further. I went gluten and dairy free, eating mostly organic and drinking goats milk kefir for probiotics. That was the point in my life where I seemed to be almost in remission for a year.
Well this past July, I took a job that moved me to an area where my diet was extremely difficult to stick to. I began eating fast food and drinking soda…no surprise, I am losing weight and seem to be in a downward spiral.

I am looking for some support feedback on my current decision. I am very apprehensive about J-Pouch procedure, but with pre-cancerous indicators, do I have any choice?

Colitis Medications

Asacol
6mp
Remicaide
Slippery Elm Bark
Low Dose Naltrexone

written by Tired (Tired of Being Tired)

submitted in the colitis venting area

12 Responses to “End of the road…J-Pouch?”

  1. shellyFebruary 11, 2013 at 6:15 am #

    I’m so sorry for all you’ve gone through. This disease is just a nightmare. Before surgery though (which could be a good option but since you’d still be dealing with the PSC) I would try vancomycn – here’s the info:

    https://www.google.ca/search?q=the+case+of+the+disappearing+liver+disease&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a

    all of the children treated with the drug have had both of their conditions go into long term remission. it’s well worth a shot I would think. You can contact the Dr in the article and he will work with you/your Dr.

  2. bevFebruary 11, 2013 at 3:21 pm #

    Hi Tired…

    I don’t think that you should fear the surgery…I know…easy to say, right?! If you are in a pre cancerous state, that is THE BEST reason ever for the surgery! Imagine…never having to worry about colon cancer ever again!! If I was told that I was on the road to the big C…there would be no dispute…I’d have that old surgery…with bells on!!

    PEACE OF MIND. There ain’t nothing like it…

    Don’t be afraid, It is the right thing to do! You will not regret it!

    Cheers,
    :)

  3. bevFebruary 11, 2013 at 3:24 pm #

    Oh, one more thing, though, Tired…YOU ALWAYS HAVE A CHOICE!

    You don’t have to have the surgery, but I think you’ll be happy that you did:)

  4. joannaFebruary 11, 2013 at 4:59 pm #

    i know surgery and recovery will be difficult, but if i had precancerous biopsies, i’d go with surgery, too. it makes the choice a lot easier i think.

    i was just in the hospital with c diff and developed ileus from that. that makes your risk of perforation from c diff spores go through the roof. i was very scared and told myself that if my colon perforated, at least they could take it out and save my life. i’d be done with uc and i’d get to live.

    the problem is that we have so many choices of what to do with ourselves and our disease situation. you still have a lot of life left to live.

    did the doctor say if the polyps were removable?

  5. Mike from Ohio
    Mike HFebruary 11, 2013 at 10:28 pm #

    Do It. I did and so far do not regret it. I am 4 weeks past colon removal and feel pretty darn good. Of course Im not or may never feel like I did before my disease hit me but my life without a colon right now is much better than it was with one that was not working correctly. I wish I would have has my surgery earlier. You have plenty of support on this web site and there are support groups out there that are helpful as well.

    Mike

  6. TedFebruary 12, 2013 at 4:13 am #

    Having colon removed is not a simple decision to make. It’s always good to ask second or third opinion or more from professionals point of view.
    What kind of consequences that you may be expecting.
    I have heard quite of patients that they had their colon removed. In all, there are contradiction on both good and bad.
    I personally suggest, really really consider it in all expect before making the decision.
    Take care.
    Am an UC for almost 8 years now.

  7. KatherineFebruary 12, 2013 at 7:13 pm #

    I’m 25 and had the j-pouch surgeries in August, October, and December 2012. They were painful and difficult, but I rarely think about them anymore. I am living like a normal being and eating whatever I want (with a few exceptions.. like I avoid spicy foods because it burns when it comes back out). I only had UC for a year, but mine was so aggressive I had no choice but to have surgery when I did. I have had no problems with my j-pouch and everything is working very normally. I literally feel just like I did before I was diagnosed with UC. Yes, I go to the bathroom maybe 5-6 times a day.. but I never think about it and can hold it if I need to. If you have any questions I’d be happy to help.

  8. Emie
    EmieFebruary 13, 2013 at 9:40 am #

    I had the first surgery December 19th and I feel amazing!! I can go shopping, to dinner, go for a long drive, go to work and not have to worry about crapping my pants. I am scheduled for my “takedown” on March 9th and I know it will take some time to get used to, but it sure beats what I had had to deal with in the past. My story is on here and I would love to help too if I can. It is a tough decision to make, but you seem to be on so many meds now that are pretty high risk and already having precancerous biopsies.

  9. Mike from Ohio
    Mike HFebruary 13, 2013 at 6:01 pm #

    Having your colon removed is an easy decision to make if your tests actually came back as precanerous biopsies on top of having UC. Either way you are looking at a future of a high possibility of cancer and UC at the sametime. No way I would deal with that. Find a good surgeon that removes colons often and look into it. If you get cancer or a perforated colon you could die. Have the colon removed and you will be 100% cured of the possibility of colon cancer and UC.

  10. EllenFebruary 21, 2013 at 3:00 am #

    I would have to agree with some people here, that if you have cancer or in pre-cancer cell, then you have no choice but to remove your colon in order as a life saving measure. My grandfather died from colon cancer, so even though I have UC only for a year, I am considering a surgery too because I cannot be on this strong immunosuppresant till rest of my life. Steroid can give me diabetes as well, the risk I don’t want to take.
    Having said that, I understand it can be overwhelming.
    I know how that feels because next week I am seeing a surgeon next week, and I am scared and worried.
    I think the operation for you at this point is a life saving procedure, because if you get cancer, you can die from that, and once you have one, the surgery itself would not be a cure.

  11. Jackie
    JackieFebruary 24, 2013 at 10:36 am #

    Yes a very scary decision but I think if you have pre-cancerous cells that I would go for the surgery. Cancer would only make matters worse. I am actually trying to make the decision for J-pouch surgery myself and know that it is not a easy decision. I wish you the best of luck!

  12. HeatherMarch 6, 2013 at 8:48 pm #

    I had UC for 10 years and had the first step of jpouch surgery 1/22/13. The first 2 weeks were rough but now @ the 6 week point I feel great. I’m looking forward to my takedown surgery in mid April. The medicine & diet rollercoaster is now over and I’m looking forward.to a future with no flares. The decision is difficult but I knew it was time to suck it up and have the surgery. Colon cancer runs in my family so eliminating my risk for colon cancer made it that much easier to take this step.

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