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Ulcerative Colitis DENIAL

Meet Amy:
Diagnosed with UC in May 2012. 41yrs old. Own and operate a Pilates studio, artist,bike rider, dog and cat lover, reader of everything. used to love food and wine…not so much anymore.
The Symptoms Amy’s Going Through:
abdominal cramps, headaches, pain with bm and bloating.

Amy’s UC Story:

My UC story started a few years ago when I started having strange auto-immune symptoms (fatigue, swollen lymph nodes,joint pain, psoriasis ,eczema ) My dr ordered various blood tests on occasion but nothing ever up. In the past year I started having problems with acid reflux and my digestion was just not right, lots of gas,pain when i went and I went often. ( You know the drill) About 3 months ago i had acid reflux so bad that i couldn’t drink was so painful! dr referred me to a GI dr who promptly scheduled me for a endoscopy/colonscopy , he felt the colonscopy was a good idea considering my various auto immune symptoms.
Everyone told me how good they feel after a colonscopy so I really wasn’t worried going in.  When I came out I learned that i had a hiatel hernia, an ulcer on my esophagus that had healed and Ulcerative colitis. The doctor told me that my whole colon was moderately inflamed and that he took quite a few biopsies of areas that looked “iffy”. I was coming out of anesthesia during his diagnosis so this may explain why nothing really registered. However that night I felt bad , had a little fever and still had diarrhea. The next night I woke up in the middle of the night with fever of 102, felt really bad but fever ended up breaking and I was able to go to the studio that day. By the third day in the middle of the day i couldn’t deny something was wrong, i felt weak my fever was back up to 101 and my colon was not happy.(liquid poop) I called the dr. he called in antibiotics and Flagyl about 4 days later I started to feel better .

The fact that I had UC still hadn’t registered.

I ordered a couple books from Amazon and checked some things out online but because I had never had a full flare I really didn’t take it seriously. I wasn’t feeling great so i was eating a bland diet but not because i had UC because I felt bad. My UC story is really kind of horrific from this point on. About two days after I finished the antibiotics and the flagyl I woke with a fever of 103, all fluids and I mean all fluids were coming out of me through my butt. I was in so much agony , I spent the morning on my hands and knees on the bathroom floor begging for mercy. I wanted to go to dr but couldn’t imagine how I could get out of house. I had an appt scheduled with my GI the next day , I called my mom and asked her to drive me, I was too weak , too sick to drive. (that alarmed her) My fever ended up breaking so I thought whew..I’m getting better maybe it’s just a bug. Althoiugh I could barely walk , hadn’t eaten in 3 days an d was still having diarrhea(DUH!) .

My mom is a nurse,

when she came to pick me up

she took one look at me

and knew this was a bad situation.

We went to the dr, he wanted to pump me full of fluids,steroids and antibiotics (btw my whole body was red, feet and hands swollen and a rash allover…) the dr mentioned I may need to go to hospital & wanted me to go to ER if it got worse. It got worse as they were pumping me full of fluids I had to continually get up to go to bathroom with diarrhea . I was admitted to the hospital and spent 10 days there,severe dehydration, malnutrition (nothing was absorbing) my blood pressure was 80/40 , heart rate 133…apparently my potassium was dangerously low 1.5. Bad scary stuff , I proceeded to get pneumonia on top of it which complicated matters even more as well as discovering that I am allergic to Cippro which had been given to me for 2 weeks and then pumped into me through my IV (hello ! that will not make a UC flare any better!) As s oon as we discovered that my body became a normal color and my feet and hands resumed normal size…that was a relief!) I was released a month and a day ago. I’m happy to say i’m much more educated about my disease now, I’m taking good care of myself. It has been very hard work getting back in shape to work at my pilates studio but I’m doing much better, My family and friends have been very supportive. I am currently a freak when it comes to food as I am still healing from that flare, I lost 16lbs in hospital which was pretty dramatic. I am trying very hard to keep a positive frame of mind through this, while I try to learn as much as I can. I have an appointment with a new GI dr August 1st, I’m looking forward to having a plan of action to keep this under control. This has been life changing , I view my life differently. It feels more precious to me.  I want to do whatever I can to continue it in a healthy way!

Where I’d Like to be in 1 year:
In remission, living my life without fear of the next flare. Able to drink a glass of wine :) Being healthy , strong and happy.

Colitis Medications:
Asacol hd , prednisone (currently stepping down) floraster(probiotic)

written by Amy

submitted in the colitis venting area


4 thoughts on “Ulcerative Colitis DENIAL”

  1. OMG, so sorry about all you’re going through! Some of your symptoms sound like gluten intolerance, which really exacerbates colitis and skin conditions. I know, I am and was in denial about that for years because I loved beer. Hiatal hernias can be very serious, too. My sister was recently in the hospital for 8 days because of an ulcerated hiatal hernia–it caused her stomach to flip so she had to have an operation to put her stomach back in back place and they took care of the hernia so she’ll never have acid reflux again. It’s tough having so many symptoms at once. I have psoriasis. psoriatic, arthritis, UC, and Chronic Fatigue, and lately anxiety attacks. I take supplements to help all and some meds but my favorite is Low Dose Naltrexone but you can’t take opiate pain pills with it. Your skin condition could clear up if you stop gluten and start using acidophillus or probiotics, start out using them slow. Also bentonite clay is great for clearing your body heavy metals and Candida overgrowth. You will get through this. Oh yes, try drinking chamomile, spearment, or ginger teas, mix and match. Good luck to you.

    1. Thank you for the advice and tips. Maggie I am currently taking floraster twice a day. I have done some reading on the SCD diet, it seems like a lot of people on this site are having good success with it. I have cut out dairy . i have started to slowly add some things back into my diet but I’m being very cautious. I’m feeling much better and most of my symptoms are gone most of the time (except my skin & occasional cramping!) I may try going gluten free..everything I read says its beneficial for most people with UC. Do you do the SCD diet?
      Bev i can’t believe you got pneumonia after..that is scary!!! I’m terrified of having another colonscopy ever again!! I am staying helps that I’m feeling better…and off the steroids!
      Uma why no wine? just a little..half a glass??

  2. Wow, Amy…wow.

    You just keep going. That’a all you can do, right?

    I wonder why you got so sick after the colonoscopy and endoscopy? I too got pneumonia after I had the two performed at the same time (not with the same probe, I hope…lol). I thought it might be due to some infection on the throat probe. I was so sick, and had to go on avelox…a terribly potent antibiotic, which, in turn, caused my worst flare ever! Sheesh. We both got sicker after the procedures than we were before. That tells you something about hospital cleanliness, doesn’t it? I was not impressed…

    This UC thing is a long long road. One that we get so sick of anf frustrated with…but I always have to remember…I will only go around once, so I have to make the best of it!

    Cheers, and stay healthy and positive…even tho it ain’t easy sometimes.

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