Ulcerative Colitis Tips


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I Was Going to the Bathroom 35 Times Per Day

Intro:

I was diagnosed with severe UC 7 years ago, when I was 19 years old. I have never been in remission, but hopefully will be one day.

Some more about me:

I have lived in many different states and constantly travel. I am a huge outdoorsman, and I do everything from hunting and fishing to storm chasing and hiking 14ers.

Symptoms:

I go to the bathroom on average 10 times per day. My stool is almost always loose/bloody.

My Story:

I was diagnosed with severe UC 7 years ago, when I was 19 years old. Initially it was so bad I was going to the bathroom on average 35 times per day. My doctor put me on Pentasa and when that had no affect, he just kept upping the dose. When that still had no affect I was put on a suppository, but that also had no affect.

It was now about 2 years later and my UC was so bad I was always worried to go to class because I wasn’t sure I could make it to the bathroom in time when the sudden urge to go hit. A couple of times I didn’t make it in time. Talk about embarrassing! I was prepared though and had extra underwear and pants with me. There was no way I could carry on like this any longer. I couldn’t do anything I loved doing (hunting, fishing, hiking, etc.). I had absolutely no energy and no matter what type of diet I went on, nothing helped. At my very worst I was going to the bathroom 50 times per day! I didn’t even go to class some days, just stayed home within a few strides of the bathroom.

A couple of months later I had a fever of 100+ degrees for more than a week with absolutely no other symptoms. I went to the hospital and they admitted me. It took the doctors more than 4 days to figure out what was wrong with me. I had two large abscesses in my liver, one the size of a softball and the other the size of a tennis ball. My UC caused a tear in my colon and caused the infection in my liver. I was in the hospital for about a month before I was finally able to leave. That sure was a nightmare.

I later switched doctors (because I moved to a different state) and since nothing else I had been on was working he wanted to try Humira, which at the time was not approved for UC. First I had some blood taken and they found out I was extremely anemic. I then had to get several blood transfusions.

Finally I started on Humira. I noticed a difference almost immediately! Initially I gave myself two shots every two weeks. And thank goodness for insurance because it is about $1500 per shot! Once my symptoms started subsiding a bit they lowered the dose to one shot every two weeks, which I have been on ever since. I have now been on Humira for about five years.

I am still not in remission, but I am doing much better than I was before the Humira. I still go to the bathroom around 8-10 times a day, though there is an occasional day here or there when I only go a couple of times. I still have blood in my stool a majority of the time, sometimes quite a bit of blood, but I get by.

I am on an iron supplement to help with my anemia. I still often feel pretty tired, but I push myself to do everything I love doing. I work out five times a week, am in a soccer league, two basketball leagues, a golf league, a softball league, and I have a full time job. I find that whenever I am active I never have to go to the bathroom. So I do everything in my power to stay constantly active.

There are definitely a few foods that make my condition much worse. These include: any type of fast food or processed food, foods high in fiber, acidic foods, and anything with caffeine. Caffeine may be the thing that is the very worst for me.

Having UC sucks, but it is definitely not the end of the world. I still live a completely normal life and do all the things I love. It takes trial and error to figure out what works for you and what doesn’t, so just keep trying different meds, diets, and exercise programs until you find a combination that works for you.

written by Cory L

submitted in the colitis venting area




5 Responses to I Was Going to the Bathroom 35 Times Per Day

  1. slingshot May 8, 2014 at 11:45 pm #

    Hello Cory

    As a fellow UCer I feel with you and have also felt frustration as I can not do all the things that I love to, beeing activa and out in nature. But one thing helped me and increesed my feeling of health.
    Omega 3 supplements is very good. You should try it!

    • Cory May 12, 2014 at 12:42 pm #

      I will give that a try. Thanks!

  2. Bryan C
    Byan May 12, 2014 at 6:55 am #

    Cory,

    Hi Im Bryan and I was diagnosed about 19 also im now 35. I feel your pain UC is horrible and no one really understands but the people who suffer with it day in and day out. Like you I was never ever in remission. I tried every med there is none of them worked. Predisone was the only med that kept me some what “under control” I also would take extra set of underware it sucked. I in the hospital so many times they know me there embarresing. After years and years of battling it my GI doc said I really needed surgery I was totally against it. After my last flare I finally had enough I told the ER doc I wanted surgery they scheduled it that day. Two days later I had my colon removed. Its a three part surgery first they take out the bad part of the colon which for me was all of it. Then they do the j pouch where they make an internal pouch they eventually hook up your small bowel to the rectum and hopefully you will go normal again I haven’t had the last one yet but you wont need a bag anymore. Right n

  3. Bryan C
    Byan May 12, 2014 at 7:01 am #

    now I still have the bag. If nothing is working for you anymore its probably time should talk to your GI about Jpouch surgery. I don’t take anymore meds and don’ t worry about taking extra cloths . Stay strong and if you have any questions brcook2323@yahoo.com is my email

    Bryan

    • Cory May 12, 2014 at 12:43 pm #

      Thanks, Bryan. I may have to eventually go that route, but I am still trying to hold off and hope for the best. We’ll see what happens.

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