Lonely Disease – Shannon’s Story

Hi my name is Shannon.lonely disease
I’m 39. I was diagnosed with UC in 2000, but the story actually begun when I was 7 months pregnant with my first baby.

I started having bad cramping an bloody poop with lots of mucus. I told my OBGYN doctor about this an she said “oh its probably hemorrhoids”. So I continued on as I was told. Now my baby is born in 4 months . I’m in extreme pain, uncontrolled bowels an having 20 stools a day. Weak sick an grey. I was admitted into the hospital. The doctors still had no idea what was wrong. While in the hospital I had a colonoscopy an the doctor said, “looks like you had UC.”  They kept me 4 more days resting my bowels (no food). Which by now I think there wasn’t any in there from not eating from days before.

So I was sent home being treated as I have ulcerative colitis. Come to find out the doctor never did a biopsy. So the true conclusion of what I had was not a for sure. I went a year more before I had a biopsy and actually was scheduled to have my colon taken out due to my body not reacting to all the medications I was on.  Luckily the doctor who was going to do the surgery asked me I’d been tested for Crohn’s Disease.  I said no.  So he said get this test done and see if you have UC or Crohn’s. Well the test came back, I was a person who had both. Crohn’s an Colitis.  So all along I was having a flare of Crohn’s Disease not UC.

So I am one of those people who have fallen thru the cracks. We make to much to be able to have Medi-cal insurance. And can’t afford to have our own insurance due to pre existing medical conditions. So I’m stuck.  I’ve fought with medi -cal to help me and I guess you gotta be almost dead with no money to get some help with medicine and just some proper care with this disease. I now have had to hire an attorney to get permanent disability.  I’m waiting on the verdict on this. Pray I do . 12 yrs fighting this disease has been very depressing at times. I have no one to understand how I feel.

Submitted by Shannon in the Colitis Venting Area


8 thoughts on “Lonely Disease – Shannon’s Story”

  1. Best of luck to you. Medical insurance in this country is sh*t. When I was first diagnosed two years ago they raised my premiums and offered no coverage for medication. So, I pay out of pocket for all my meds.

  2. Thank you for your incouragement. An reading my story. Sorry u r in the hospital. Been there. You get well. An keep intouch with this site its great for ppl like us.

  3. Graham for got to tell you makesure you get a pain shot everyfew hrs in the muscle it helps the pain stay away longer. Iv painmeds die off fast. Stay comfy so your body can heal. Eat alot jello for me. Thats all i got to eat an broth. Take care. Shannon

  4. I feel your pain. I’ve been going through something similar with the health insurance. And it sucks because I’m single and self employeed.Blue Coss has raised my rates numerous of times. And I constantly get so frustrated with the entire health care system that I just cry. I’ve been denied as well for pre existing condition. Just today I got a bill for $800 just for Lab Work. Can you believe it. So I’m crossing my fingers that my insurance pays a large portion. I’ve had UC for 9 yrs and I just had my 33d bday. And. On top of it I’m in my 2nd flare this year. Just got off a 2nd round of Pred and my next treatment looks like its going to be 6MP. Life is tough for me right now mentally. This disease just keeps trying to break my down and every day is a fight to try and be positive.So I really do feel for you.Hang in there.

    1. Its very sad that ppl like us with horible diseases dont get a break so we can get healthy an lead a productive life. My husband an i own a small business which makes us selfemployed also. We also have 3 small kids an just to have all 5 of us on ins. Is like 1200.00 a mo. We cant afford it. An we make to much for assistance. So when im sick an have to go to the dr i pay out of pocket. I also have thousands of $s of er visits. Its sad i just have to let them go to collections. That has been my way of health care for the last 4yrs. This disease is very challenging. It affects you in many ways. Relationships are hard. Ppl dont get it. My husband still gets cold towards me when im sick cause i cant be me when im in remission. That makes it very hard. I am hoping my disabilty goes thru. I to am in a flare of uc right now. An crohns flare before then. Last yr i had enough an felt like i went off the deep end. I put myself in the coocoo farm. The dr there said i was feeling the effects of the disease an released me to go home. So i wasnt crazy just really fed upwith being sick. :-) . Im sure weve all felt like this. Trina hang in there. An thank you for writing me. We all need friends that undrstand. Shannon

  5. I no how u feel Shannon. I tried getting disability ova here in the UK, but they don’t c this condition as I disability, but they give disability 2 alcoholics.

    1. Its sad cause i think disabilty here maybe the same. I hired an attorney. We will see. Not fair for us who cant control our disease alcholic can. Shannon

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