Hey Doctors: I’m Not Crazy, I Have Ulcerative Colitis

Introduction:

I don’t know how much longer I can keep this up.

My Ulcerative Colitis Story:

I have had issues with pain, diarrhea and bleeding for years. I had a colonoscopy 4 years ago and was told that I wasn’t bleeding enough to be diagnosed with colitis. They even told me (after a suicide attempt) that I was most likely sick because I am crazy.

I yelled at the doctor:  “NO, I am crazy because I am sick.”

gastroenterologist doctor argument

This past May I got sick. Sicker than I have EVER been before. At first I thought it was stomach flu because after a couple of days I felt a little better and I went back to work, then I ended up in the hospital with dehydration. They thought I had C dif because I had spent most of the winter on antibiotics. The hospital actually lost my stool sample so I had to do it again. I cannot tell you how freaked out I was by this. Walking was (and still is) difficult for me. I get very tired and dizzy. The C dif came back as negative. Now I am sicker and bleeding pretty heavily. I can barely make it down the hallway of my doctor’s office to get to the exam room. He calls the GI clinic and gets me in for colonoscopy in 2 days. The prep for the colonoscopy, as you all know, is agonizing. They scope me and make an appointment for me 1 week later. The doctor tells me I have colitis. She starts me on Entocort.

One week later I am in my GI’s office and I have lost another 4 lbs, I am still bleeding and my labs are all wonky. GI doc takes me off the Entocort and starts me on Prednisone. Two weeks later I am even sicker (how is this possible?) and I am back in my regular doc’s office. He calls my GI and tells her that I am not getting any better. She schedules me for my first Remicade infusion. Two weeks later I have my first normal bowel movement. YAY! I think this is a miracle! Then I get my second infusion and I start gaining some weight back. Then 2 weeks later I am sick again. The Remicade is not working anymore. GI doc says she doesn’t know what else to do so she is referring me to Mayo. Too bad my insurance just cancelled on me and Mayo will no longer take me. Too bad that I am in the bathroom between 20 and 30 times a day and am unable to work. Too bad that my disability insurance wants paperwork from Mayo and I can no longer go. Too bad that my bleeding and my pain are off the charts and I am losing about 5 lbs a week. Not really sure what I am going to do now. I see my regular doc tomorrow. Hopefully he will have some suggestions.

Submitted by S-O-L in the Colitis Venting Area



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5 Responses to Hey Doctors: I’m Not Crazy, I Have Ulcerative Colitis

  1. Mandie September 15, 2011 at 8:23 pm #

    I’m so sorry you are in so much pain. Did they test you for c. Diff before your Remicade infusion?? I’ve had a fee bouts with it myself. It’s been missed in my labs before and I’ve spent alot of time in the hospital fighting it. We, colitis patients, are at higher risk for infection. Then, when you’ve had it once, your chances increase again. If the prednisone didn’t work, why didn’t the GI try a higher dosage? Seems crazy to wait for Remicade to kick in. Prednisone has proven better effective at a quicker rate.
    Anyway – it sounds to me like the way c. Diff can work. My unpro opinion. It’s just your horrible experience sounds alot like mine. Maybe you should do some research ad find another GI. A second opinion never hurts. Some docs know more than others :) good luck. Keep us updated. I wish you a speedy recovery. Sitting on the toilet all day sucks!

    • Melissa September 15, 2011 at 9:13 pm #

      This all occurred over a period of 4 months. I started on 40mg or prednisone twice and day and then went to 60 mg. Prednisone had no effect. As far as the C dif, I was actually tested for it more than once and it came back negative each time. I have had C dif and this feels nothing like it. There are two reasons why I can’t get a second opinion, first, I no longer have insurance so no one will see me. Second, this is western South Dakota. There is one GI practice that covers a 5 state area. I would have to leave the state for a second opinion and I can’t afford to do that without an income and without insurance. Life is pretty shitty right now. Pun intended! ;-)

  2. Anieskassell September 16, 2011 at 9:24 pm #

    I’m so sorry to hear that you’re having such a hard time. You mentioned a suicide attempt. I can understand how you feel because a lot of times I think that dying is better than living like this. I was diagnosed on July, and thanks to the medication I went on remission a month afterwards I started the treatment. I was off all medication already. Unfortunately, as of last week some symptoms reappeared. As I type this I feel the need to cry and to throw up at the same time. The left side of my colon hurts and I feel weak. I still can’t accept the fact that I’m sick and it depresses me. But I have to remain strong for my family. The last option is surgery for all of us (UC sufferers). But at least there is an option, don’t you think?

    I really hope that your situation improves. You are not alone, we understand you and share your pain. I know that this might not help solve your problem but I want you to know that faith can make miracles come true. Don’t lose hope and do not give into suicidal thoughts. There is a light at the end of this tunnel. Trust me. Hang in there.

    Keep us posted!

  3. Melissa September 17, 2011 at 1:15 pm #

    Thanks,I appreciate that.

  4. Jessica Kelts September 17, 2011 at 8:09 pm #

    I feel for you so much! My UC was never that bad and the only colonoscopy I had was when I was already hospitalized for horrible abdominal pain (second ER visit in less than 3 months) and it didn’t matter that I couldn’t choke down the treatment because I hadn’t been able to eat for days. That’s when I was diagnosed and I was lucky enough that solumedrol in the hospital and then 60 mg prednisone was enough to put me in remission. When I flared again in April of 2010, another round of prednisone put me back in remission. I’ve been lucky since then on Asacol. I hope that you find relief soon!

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