My Short Colitis Story

Well since this is the “Venting Area”, I guess I’ll start by saying I was just diagnosed with UC this past February, even though its felt like 10 years.

It has definitely been a complete life change for me physically and mentally. I’m starting to get used to it, a little. I don’t think a day has gone by that I don’t think about what “normal” was and how my life has changed so much. I don’t really know how I got Ulcerative Colitis. I’ve been healthy my entire life (23 years), played football since I was 7 years old, always involved in sports, happy-go-lucky until one day I began crampping terribly at work and it was difficult to do anything.  I noticed I was having to go to the bathroom, but nothing was coming out, so I figured I ate something and its making me constiipated. Then after about a week my supervisor advised me to go to the ER. They gave me some meds and sent me on my way. Well after a few days things got WORSE. Stools of pure blood and all night bowel movements. I went back to the ER and I was admitted. After a week of tests, colonoscopy, and IVs, I was diagnosed with UC… haha little did I know what a life changer it would be. I accepted the fact I had a chronic illness, but am still trying to cope with the symptoms and limitations on certain things. The hardest part is not being able to eat what I want when I want. And if I do, I better able to deal with the consequences. But anyways, I happened to stumble upon this website one day and its definitely nice to relate to others because if you don’t have UC, you have no clue what we go through. But I have my 2nd Remicade infusion on Wednesday, hopefully I’ll start seeing a difference :)  didnt see any drastic changes after the first one. Just wondering how many infusions until I might start seeing a difference..

6 thoughts on “My Short Colitis Story”

  1. Hey There,
    Hang in there. There’s a whole bunch of us out here/there who are in the same deal as you. Just diagnosed, or recently diagnosed. Its been two years come tomorrow since I was officially diagnosed with this disease, and I still think about it all the time. But, definitely I am getting much more comfortable with how life is etc…
    One thing that is for sure is that there are a ton of people out there in the world who have been diagnosed with our disease, and who have been able to continue on to a great, happy life. There are people who are as well doing well with Remicade as their treatment too.
    So don’t freak out, definitely don’t lose hope, there is an answer out there for you too. For me it happens to be through diet, the SCD book has done wonders for me. For you it might be something differnet. All of us are unique, no two bodies are the same. I think one thing that is for sure is that the time period from being diagnosed to finding a treatment/therapy/whatever you want to call it, that works is often the hardest part for some people. So many factors involved. But I encourage you to do some reading, read about other’s stories and ask questions whenever you like. For me, the remicade infusions didn’t work for the longrun, but that is just me. There are a ton of others who it has proved successful, so keep your chin up. What is your doctor saying about diet affecting your UC symptoms by the way?

    1. Hey football player. I just “celebrated” my 1 year anniversary this year of having IBD (still undetermined between “Crohn’s” and “UC”), and even though it still sucks, I definitely feel like as time goes on, I have better perspective on things. It is a life-changer for sure, but I have really worked on positive changes (both physically/diet and mentally) so that I feel more in control of things. I still have a lot to learn about my disease, and have made some mistakes along the way (like waiting waaay too long after a flare starts to get treatment), but that is part of the process.
      I agree with Adam – no two bodies are the same, and we’re all at different places with the disease, but it is definitely worth trying some of the different things out there. Diet has been VERY helpful for me, even though my gastro told me that diet isn’t important at all. Part of having a raw gut made me completely intolerant to gluten, sugary things, alcohol, and coffee much of the time. It’s certainly been an adjustment, but I have recently realized in the big picture, I have a lot to be grateful for, and the diet stuff is minor (although I still want an ice-cold beer many days :).

      Anyway, reading others’ stories has been extremely helpful for me – hope it helps you too. I’m rooting for you and hope the best with your treatment.

  2. Definitely hang inthere! I’ve been on Remicade for about 6 years and I’m finally in self-declared remission. It’ll kick in soon so just let it get your IBS under control. Your should be feeling better soon. Stay healthy and positive. You’re really lucky to be kicking it so hard with serious drugs so soon after your diagnosis!

  3. STEPHEN: Ya its kinda crazy how your body and mind start to adjust to something like this.. It kinda starts becoming second nature. And I hear ya on wanting those cold beers! I’ve fell victim to the temptation a few times, but at moderation.

    ADAM: I actually just ordered that SCD Diet book the other day and it should be here by tomorrow. So I’m really looking forward to changing my diet judging by some of the stories I’ve read. Like I said earlier, the dieting part is the hardest because I’ve been so used to eating what I want. Even though I still kind of do sometimes, I’ve definitely cut down on a lot of “junk”. What is it about the Remicade that doesn’t work for some people? I had read some people develop antibodies against it..

    SARAH: How many infusions did it take for you to start noticing a difference? Ya I’ve bounced around with Prednisone, Asacol, VSL3 DS, Azathioprine. The Azathioprine actually got me back to somewhat normal for the few months I was on it, but it started making me vomit everytime I took it. I just want to find something quick that will help in the longrun because my biggest fear is being kicked out of the Air Force because of this medical condition.

  4. Ralph,
    welcome to the club. I wish you the best for dealing with UC. I’ve been living with it for 12 years now and if you are as stubborn as me, you will figure out a way to live with it. Again, I wish you the best.


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