Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Rough Time

My name is Autumn.

My story begins in August of 2011 actually. I began having slight symptoms (a little blood in my stool) but thought it was only hemmeroids again (I had had a case of those earlier on in my life). So I figured it would just go away on its own. Once September hit and I was still bleeding I began to get very worried, it was only a tiny bit of blood but I had been taking everything the doctor had previously told me to and the symptoms were not going away. I went and called my doctor to tell him what was going on but he reassured me I had nothing really to worry about. After a while I noticed a huge increase in how much blood was in the toilet after I had used the bathroom.

The toilet was dyed red every time.

After a while the blood slowed down so I immediately thought I was getting better. Around this time I got very busy with life. I got a job at the begining of October as a pastry chef (I went to work at 5 in the morning) and right after I got off work I had to go to school til 7 oclock at night, So I was very exhausted everytime I came home. About this time I began getting very sick to my stomach. And began vomitting 2 or 3 times a day, and began to bleed a huge amount again. I didn’t understand what was happening at all. My friends and family told me for the longest time that I needed to go to the hospital but I didn’t have insurance so I figured (once again) that it would get better on its own. I was still puking and bleeding when I went to the bathroom everyday until November 3rd when I finally gave in and went to the emergency room. I was immediately rushed to a room where they wouldn’t let me get up or move. They apparently thought I looked to much like “a vampire” because of the dark rings around my eyes. They did a couple blood tests and found out that I was very VERY anemic. They informed me that my body was shutting down internally. This of course scared me and I began to cry not really knowing what to do (Mind you, I was only 17 and had just moved out to a different state away from all my family and friends).

They assured me that they were going to be able to help, and that I only had to come in and get a couple blood transfusions and take some iron meds. They told me that it would be better if i do this as an In patient so i wouldn’t have to pay right away. I of course agreed. I went to the pediatrics unit of the hospital where they then informed me that they needed to do a check up on me. They did a full check up and then sent me to the GI doctor so he could see why I was bleeding so much. He of course sent me back to the hospital where I then had to drink something called “go lightly” that flushed my intestines. They also hooked me up to an IV to start the blood transfusions. This was one of the worst nights ever because my stomach couldn’t handle it, so I continued to vomit. I continued to get 3 blood transfusions and an Iron infusion as well that night. The next morning I went in to go get a test done where they put tubes in you to look (i’m sure all of you have had this done).

When I came out and they told me that I had

a very severe case of Ulcerative Colitis.

They had to explain to me what this was of course, and this scared me as well. They told me that it had spread throughout my entire intestine and that I would probably have to go into surgery to get my colon removed very soon. This of course scared me and made me cry an unbelievable amount. They also told me that I couldn’t go home until they knew I would be able to survive outside of the hospital. So what was supposed to be 2 days in the hospital soon turned into two weeks in the hospital and I had to take a medical leave of absence from school. During those two weeks I had to be hooked up to an IV at all times where they gave me fluids, blood, and steroids. They also had to draw blood ever y morning and give me a shot of blood thinner in my stomach every morning (which hurt more then anything). It turned out The steroids didn’t work how they wanted them to at all so I then had to start a medicine called Remicade as well. (i’m sure a lot of you are familiar with what that is). After 2 weeks of being in the hospital they finally sent me home. I then had to take 9 meds a day and go in for remicade infusions every 2 weeks. I was so happy to finally be out of the hospital though. It meant I could get on with my life, or so I thought.

The steroids they have me on have caused so many side affects. I now get a lot of joint pain, am constantly hungry, angry, and my face has swollen unbelievable amounts. This of course upset me even more. But now I am down to 3 pills a day and only going to get remicade every 2 months.

I have began going to school again and all of my ulcerative colitis symptoms have stopped for the most part, so even though I have a ton of side affects from the meds, the surgery seems more like a distant bad dream now. :)

Ulcerative Colitis Medications and Vitamins:

*Prednisone was the sterroid they put me on while i was in the hospital and the meds I have to take now. It helped a little but not as much as they needed it to (this was because it was such a bad case though).
*Remicade worked wonders for me.
*Iron tablets (they constipate. But got me back to normal blood levels)
*A thru Z Vitamins

written by Autumn

submitted in the Colitis Venting Area




vomit

One Response to Rough Time

  1. Maggie January 27, 2012 at 9:34 am #

    I had been diagnosed with hemerhoids a couple times before I was finally diagnosed with colitis/crohn’s. I went on Remicade and it worked wonders for me but I had to stop eventually because I couldn’t afford the out-of-pocket expenses, went back on, and have been off. I wish I’d never had to go off of it because it really helped me. I wish you the best of luck!

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