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Manageable chaos

Hello all. I just wanted to share my story with you. Hopefully some can relate. Hopefully others will get hope from it.

I was diagnosed when I was about 12 or 13 years old. I went through a looong series of horrible tests and procedures. I went through multiple doctors. Things in high school were rough. Having to explain to all my teachers that I can’t hold it if I need to go to the bathroom. Having to deal with students thinking I got special treatment.

My sophomore year I got very sick. I was in and out of the hospital. I ended up losing 100 lbs in the span of 6 months. After that I was frail, just going through the motions of high school. After graduation I had a resection done on my colon. They took out almost 15 inches. Surgery went well, everything was fine, but it didn’t cure anything.

I struggled through 5 years of college. All the while having to explain to my teachers and close friends what I was going through and hoping they would understand. I made it through college, as well as 6 internships, and graduated with a degree in engineering with a full time job lined up. I found that, if possible, laughing about the disease does help. My closest friends kind of understand what I go through and they make jokes now that I am comfortable with it. It helps. It just makes the pain and the suffering seem less.
Now, I have graduated and been working as an engineer for 2 years. I recently went to Japan for work. Although it was scary at times and I struggled, I am so blessed to have been able to have that experience. I am going back next week.

Now, for my question for you guys:
My Crohn’s is better than before, but I’m not by any means in remission. My biggest issue is the urgency. When I get that pain in my intestines, I need to go…now, and I’ve found that a LOT of this pain comes from stress or worry. Is there anything that helps anyone here? Anything to calm down, or relax?

P.s. I am currently on entivyo, which I believe has helped. But I am also still taking a small dose of Prednisone. I can’t seem to get off of it without having symptoms. Any advice there would be great. Thanks for reading.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Cent0rea88
    1 year ago

    Maybe it’s because I have a mild case of Chron’s, but something that has helped me achieve remission for 5 weeks and counting is the Specific Carbohydrate Diet. I was diagnosed in Sept and I am thankful that I never had to get any surgery. The SCD diet has helped people before because it supposedly removes foods that cause symptoms from your diet. I lost 20 pounds and weighed only 108 but I am now back up to 116. Good luck becasue I know that I have it much better than others.

  • Krekre112
    1 year ago

    Hi, I have a semi similar story as well. I got sick around the age of 13 and was allowed special privileges at school such as being able to go home or leave in the middle of class if necessary. I had my first surgery at 14 and by the age of 25 I had 7 surgeries and my entire colon removed. I was supposed to end up with a j-pouch but too much of my colon had to be removed. My question is have you been on any medications such as humira to control your symptoms? I think personally speaking long term use of prednisone causes a lot of other health issue’s and should only be used as a last resort or short term use. It seems like your symptoms are not under control and you should look at different medications for management. My other question is do you have j- pouch? Because if not, it seems like it could be a great option for you if you’re still experiencing a lack of control. Sorry for such a long post, my other question is are having any accidents? If so I really feel like at the least, your medications should be adjusted so you have a better quality of life.

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