I’m Crying Because of Colitis, I Don’t Know Where Else to Turn

I’ve had ulcerative colitis for four years,since my senior year of high school.

I was first given the standard procedure of large doses of prednisone, with the usually dreadful side effects. I especially hated how my armpits were waterfalls of sweat, my hunger uncontrollable, and I puffed up like a blowfish just in time for prom, yippy. It even affected the college I had to go to. Trying to be positive I continued to push on. Sadly though the steroid induced remission was short lived and it was back to my toilet throne too many times to count a day.

I was then put on 6mp where it effectively put me back on remission but weakened my immune system to the point where I got MRSA(methicillin-resistant Staphylococcus aureus), two cases of absesses, a week stint in the hospital with pneumonia and two more trips to the emergency room all in the span of three months. Thankfully I was taken off of it and after a 2-3 month flare I was put on remicade and it worked!!It was a miracle drug. I was able to enjoy my sophomore and junior year of college and pretend I lived a normal Colitis free life.

tiny tim comic

You're Going to Get Better Tiny Tim

Then reality hit. My Remicade  infusions progressively got to higher doses and shorter times in between infusions. I tore my MCL playing football. Social and personal problems led to emotional highs and lows and everything began to compound. By the beginning of my senior year I knew that remicade could no longer let me ignore the fact that I had UC. I now had extreme bouts of pain in the abdomen and constipation. All these years though exercise has been my outlet, my stress reliever.

But now I am as mobile as a sloth after thanksgiving day dinner.

My joints ache, I lack energy and motivation, my shoulder is impinged, my left knee feels it belongs to an 80 year old and my right big toe is infected(the high doses of remicade are starting to hit my immune system hard). Yippy fucking skippy.  I have looked into the SCD diet and hope to go on it in the next coming weeks but may not have the income to support doing it effectively. This is not a woe is me piece i justed really needed to get this off my chest cause I  think this may be the first time I can’t keep my positive upbeat attitude going anymore.

At times the pain is to the point where I fly home from school in my car, jump in my bed, and just roll up into a ball for hours on end.

After living what seemed to be a very active healthy lifestyle I feel broken, run down, and hopeless. There’s too many social, emotional, physical, and spiritual problems to even bother continuing to list them. And as I sit here crying not knowing which direction to turn i just need to know that someone/anyone has experienced the physical deterioration of what should seem like fixable injuries not heal? Is it the UC, the remicade, or something worse? I am 21 one and i feel like im 90. Is there light at the end of the tunnel? This goes beyond the 20 billion trips to the bathroom and bloody diarhea, I could always deal with that. Its the fact that I feel like my entire body is broken. Im sorry if i scared any newly diagnosed with UC but after stumbling on this site I had to vent and hope that tomorrow is better. Thank You and god bless.

Submitted by “Tiny Tim” in the Colitis Venting Area




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6 Responses to I’m Crying Because of Colitis, I Don’t Know Where Else to Turn

  1. Mike S. October 27, 2011 at 4:29 pm #

    Tim, you can read about me with the heading, “It may not seem like it, but there will be better days.” This is what I want you to know. I have not experienced your pain but I have lived with my UC for 31 years and it has caused me bouts of great anxiety, depression, self-loathing, unemployment, and thoughts of worthlessness, just to name a few … My pain was not as physical as yours but I hope you get what I mean. Many of us who have UC share these feelings about themselves (I believe anyway) and more. Have you shared your pain with your gastroenterologist? I never experienced joint pain because of my UC, but I was a competitive bodybuilder back in the day (squat 405 max, 315-16 reps then 225-26 reps) bench 315 max (not my strongest ex). My point is, that often I would lift heavy, do one too many reps, and my left shoulder would hurt like hell for weeks, or my low back, etc. So, could the joint pain be from whatever type of exercise you are doing (you didn’t say) and maybe overdoing it? I know how pissed off I get when I have a flare up and even though I lift in my garage, I still try to lift heavy (with my wife spotting??) and you know what kind of motivation being pissed off can have in the gym. Anyway, things will get better, talk to your gastro-guy and ask him if the UC or meds can cause your pain. Take care. You have friends here and you are heard.

  2. Bryan October 27, 2011 at 5:18 pm #

    I JUST WANT TO SAY THAT I FEEL EVERYBODYS PAIN… THE FEELING OF OF HOPE LIKE YOUR NEVER GOING TO GET BETTER. I HAVE HAD UC FOR ABOUT 12 YEARS AND NEVER BEEN IN FULL REMISSION.IT HAS NEVER WENT AWAY IT HAD JUST BEEN CONTROLLED. I HAVE BEEN ON EVERY DRUG AND NONE OF THEM REALLY WORKED AND THE ONLY ONE THAT DOES A HALF ASS JOB OF IT IS THE PREDNISONE WHICH I CAN GET OFF OF BEEN ON IT THROUGH THE 12 YEARS IVE HAD UC I REALLY BELEIVE IT OR NOT HAVE DONE PRETTY GOOD WITHIT UNTIL NOW ITS FIANLLY STARTING TO CATCH UP WITH ME IM ALSO ON MECTAPURINE AKA 6MP WHICH BOTH OF THESE DRUGS LOWER YOUR IMMUNE SYSTEM I HAVE HAD PNUEMONIA TWICE STAPH INFECTION KIDNEY STONES IM IN PAIN EVERYWHERE EVERYDAY OF MY LIFE AND I HONELSTY NEED PAIN MEDS TO COPE AND NO ONE UNDERSTANDS IM POPPIN PERCOCET LIKE THEY ARE SKITTLES AND IM NOT PROUD OF IT AND HONESLTY DONT LIKE IT BUT I NEED IT AND WHEN I TELL DOCS OR SOMEONE THEY LOOK AT ME LIKE IM A DRUG ADDICT IM NOT IM IN SERIOUS HONEST PAIN SOMETIMES TO THE POINT WHERE I CANT FUNCTION OR GET OUT OF BED BUT ANYWAYS TO ALL THE PEOPLE OUT THERE TOUR NOT ALONE

  3. Paul October 27, 2011 at 7:10 pm #

    Besides having Ulcerative Colitis I have degenerative Disk disease , it feels like a rusty hinge, I have to stay fairly active to keep it from feel’n stiff. For me I smoked since I was a teen ,my back gave me so much trouble & pain there were days I could barely walk . So for the last 2 years , I quit smoke’n ,eating healthy and actively exercising. I went through some major stress with custody issues and starting a new job , about three months ago, And then I got hit with a flare that’s been going for 2 months It was bad enough that I got anemic and lost around 25 lbs . It was discouraging after my regular routine of getting up @ 5 am everymorning 300 pushups and a dozen eggs.I was diagnosed with UC just here recently and I’m about 2 weeks into my prednisone I got about 2 to 4 movements everyday now with some blood Doing better But still search’n for that Yule Log! I had to just stop all exercises that were to demanding
    And try to rest any chance I get, I think stress plays such a huge role, I know anyone who has UC knows that for sure. And in this world there is no shortage of stress . This world will try to break us with every chance it gets . Exercise your mind , find strength in what you believe. Your not alone ! Many blessings .

  4. Allyson October 28, 2011 at 7:50 am #

    First of all, you are NOT alone!!!! Please don’t feel like you are. I know how easy it is to feel like no one understands but I have found a great number of people online who know exactly what UC is like. I suggest you check out dailystrength.org and join the Crohns & Colitis group there. I made lots of friends there. And if you ever need to talk, my email is eickmeier.7@gmail.com – I am ALWAYS willing to be a listening ear and talk.

    I completely feel for you. When I was first diagnosed with UC, my entire life spiraled out of control and my world came crashing down on me. I hit rock bottom and thought my life was over. I remember feeling like things were never going to get better, that there was not a light at the end of the tunnel for me, and that my life was over. But I promise you that’s anything but the truth. I ended up having the Jpouch surgery 6 months after my diagnosis because Remicade and prednisone weren’t working. I can say that it was by far the best decision I have ever made in my life. It saved me and gave me my life back. I also tried the SCD and I do think it works for some people, but you should really talk to a doctor about your other options. Don’t you think your UC would be considered pretty severe if even Remicade and 6MP aren’t working? When is the last time you had a colonoscopy? You should get checked out and hear your other options. What about Humira?

    If you ever do get to the point of surgery, I want you to know that while it seems scary, it is well worth it. Just hang in there and take each day head on one at a time. Stay strong and have faith – there is a reason for everything. This is all going to make you a stronger person!!

  5. Nanda October 28, 2011 at 9:59 am #

    Hey i just wana say i am 21 aswel, i have been sufferring from this bullshit UC since i was 17, and it really fucks me off at times, atm i am feeling just like you, i feel like i am not getting anywhere and the frustration of changing meds is doing my head in!! I feel like giving up every single day but the only thing that keeps me
    Going is remembering the feeling of being in remission and how much i could accomplish in remission! I am at university at the moment and i am struggling like hell! But i just wana say keep going, and you are not alone. If u ever want to talk you can email me
    On nandap12@hotmail.com xxx

  6. Peter NZ October 28, 2011 at 4:32 pm #

    Sometimes it makes me hiss like a snake.

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