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My Crohn’s

I was diagnosed with Crohn’s at 17, I’m now almost 57. I had a total colostomy at age 20 and have had a permanent Ileostomy since I was 20. I have forgotten what it’s like to function like everyone else at this point.

After my surgery in 1980 I went 19 years with absolutely no problems with Crohn’s. I was not on any medication and did fine until 1999. During those first 19 years, I did get married and did everything I wanted to do even with a pouch. I am an avid fisherman and I enjoy deer hunting also. The pouch never interfered with my activities and my wife had no issues. In 1999 I started feeling pain in the abdomen, I knew what it was, but I was hoping it was just a flare and it would go away. I then started having a burning pain in my side. I was admitted to the local hospital where the GI doctor said it was Crohn’s and put me on steroids.

He disregarded the burning pain in my side and sent me home. I was home for a few days and that burning pain got so severe I could not get out of bed. My wife called an ambulance and back to the local hospital I went. I had developed an abscess that burst spilling all that nasty crap inside of me. They were not prepared for these issues so they transferred me to Cleveland clinic. I wasn’t there but a few minutes and a surgeon came in and said that they need to put in a drain to get the infection out of my system. They could not operate on me until the infection was better. I laid there for 5 days waiting for surgery. Finally they opened me up and had to remove more of my small intestine and moving my stoma from the right side to the left.

After 11 days I was sent home again on no medication. I did well until 2013, I developed a peristomal hernia. January 2014 I went into surgery to fix that. I had several complications and was again in the hospital for 11 days. They moved my stoma again, this time back to the original site. It wasn’t but a couple months and I started to swell on the left side, I had another peristomal hernia. This one was much worse. I had to wait until October 2014 to get that one fixed and once again they moved the stoma. This time the surgeon put it right in the bend. I don’t know what he was thinking when he did that. One month after surgery I started having pyoderma gangrenosa around the right side of the stoma. Soon after I also had it on the left side of my stomach. I could barely keep a pouch on. Then I started having another Crohn’s flare.

I went into the local hospital and they did an ileoscopy and said I had a stricture and needed surgery. He gave me a name but I decided to get my own surgeon at the Cleveland clinic. On my first visit I took the records with me and while I was there I told her about the pyoderma. She instantly looked at it and started treating me. She also had me have a couple other tests for the stricture. Test results showed I did not have a stricture at all!

She introduced me to a new GI doctor and she ordered a capsule endoscopy which showed active Crohn’s but no stricture. The surgeon tried everything to get the pyoderma healed but due to the location of the stoma it stayed too moist and it would not heal. She decided that we would move the stoma out of that location and clear up the pyoderma. Meanwhile, my new GI doctor started me on Humira.

I was finally operated on late November of 2015 to move the stoma. The pyoderma healed in about 2 weeks and she moved the stoma without opening me up so recovery was good and quick. With all the problems of 2014 & 2015 I applied for disability and was approved to get it in February 2016. I’ve been doing well this year until I could not urinate and had to have prostate surgery. The problem I am having now is something going on with my muscles in my butt. I feel like I’m going to have a BM all the time. I have constant spasms down there to the point it hurts to sit. The diarrhea is back and my abdomen is tender. I’m going in for a CT scan Tuesday to see what’s going on.

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

  • thedancingcrohnie moderator
    4 months ago

    You have had quite a journey. Sending healing vibes your way. I hope your CT scan went well and you were able to leave with answers. IBD is so so hard. Just remember you have a community that cares, always. I hope you are doing well these days.

    Always dancing,
    Elizabeth (team member)

  • Dana
    3 years ago

    Hi Tdub!

    Thank you so much for being a part of our community and sharing your experiences with us. It sounds like you have been through a lot and have a lot of insight to share with everyone.

    We wish you the best of luck with your CT scan and hope that you get the answers you are looking for! Please feel free to come back anytime and let us know how you are doing – there are many others here that would love to know!

    Keep Smiling!
    Dana (InflammatoryBowelDisease.net Team)

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