Skip to content

Bad Experiences and Difficult Decisions

I am 51 years old. I was diagnosed with UC in 2009, but I had it for a year before that. I had an appendix operation that I started all the symptoms of UC right after and never recovered. I have two adult children and a 12-year-old and I am married. I was born in Canada (Manitoba) and moved to Minnesota when I was 35.

Some more about Wendy:

I enjoy movies, reading, hiking, camping, cooking and being home. Snug and safe in a warm home during a snowstorm is nice. I love traveling but the trips are usually confined to Canada and the USA. I have traveled to Europe and Africa when younger. Once to Amsterdam more recently.

Symptoms As of Late:

Currently I am recovering from the worst flare I’ve had yet. When I had that flare I was going to the washroom about 100 times per day. Blood wasn’t a lot before I was admitted to the hospital. I still, even on prednisone and mesalamine have diarrhea if I eat too much or the wrong thing.

Wendy’s Story

Since my laptop broke I haven’t been able to write on here and doing it on my phone is difficult to navigate and type. This is the best place for me to communicate my experiences with UC. You would think it would be doctors or family, but no.

I was very gradually becoming worse in my UC symptoms for a while. It took months of gradual increases in symptoms before I decided that I was actually very sick and should see a doctor. I don’t always just go to the doctor because I can have a bad reaction and it will go away. After I started getting fever, sweating and chills, nausea and headache I decided I would go to the ER. The ER gave me anti-nausea medication and a shot in my IV (that you shouldn’t give someone with UC) for pain. I was sent home and told I had an appointment with the gastroenterologist on the 14th of March. It was the 14th of February.

I went home and proceeded to become increasingly ill. I had to crawl to the washroom. I could only lie on the couch or in bed sweating or freezing. I barely ate or drank. I called the hospital four times telling them what was going on. The people I talked to said my appointment was the 14th of February and there were no sooner openings.

After a week and a half all I could do was cry. My husband called and talked to the hospital. He said I was delirious (which I wasn’t). The hospital called me back and talked to me. They said I should take an ambulance in. I said “no.” My husband could drive me.

I was hospitalized for a week. It was so bad and I was so I’ll I wanted to die.

I have decided to remove my colon and I am seeing a great surgeon at Mayo Clinic on the 30th of April 2019. I am more afraid of doing this than anything in my life. I am so scared. I feel like there is some simple solution and I am foolish for making this decision and I will regret it but I do know that I never want to be sick like this again. I do not want drugs that also give me cancer and lupus and loss of my body parts due to side effects. One person asked me when I had rises symptoms (around 2010-2011 if I wanted to not get better. That brings me down so much. People don’t say that on here. That is why I am writing this. It is a good community where people understand.

Medications:

I have tried most drugs but not Humira or Remicade. None of them work.

written by Wendy

submitted in the colitis venting area