• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My Story

Hello Everyone.

This is my story in a nutshell..

34 year old male. Diagnosed with Crohns at 19 years old. They tested a ton of medications on me for a couple years. Resection Surgery at 21 years old. This pretty much had me in remission for about 10 years. I didn’t take any medicine during this time. By remission I mean not a lot of pain, no major blockages… but I did suffer from diarrhea.

At 31 years old extremely painful flair ups started to happen again. I sought out a GI doctor. Was prescribed entocort and imuran. The next couple years kept spiraling downward with weight loss and more and more pain.
I asked my Dr for surgery last year. He was hesitant and upped instead put me on prednisone. 3 weeks later I crashed hard… couldn’t breath, painfull stomache spasms… my wife dragged me to the ER.

3 days later I was having surgery. A Resection. 3 Days later the resection failed and I went septic. I was shipped to a different hospital and they performed an emergency surgery and I woke up with an illeostomy bag.
Almost a year has passed and I am going into surgery in 3 weeks for an illeostomy takedown.

I am scared nervous but excited to give it a go.
I have a wife, 2 children and one on the way. I want to be around a long time for them.

Thanks for reading.
 

David

Co-Founder
Location
Naples, Florida
Hi there Russell and welcome to the community. I'm so sorry to hear about your struggles as of late :( My heart goes out to you. As a first time dad to a 4 month old, I totally understand your desire to be around a long time for your children. My perspectives have certainly changed.

I'm sure your takedown will go great. :)

Do they plan to put you on any maintenance medications?

Please keep us updated as to how you're doing.

All my best to you.
 

valleysangel92

Moderator
Staff member
Hello

Welcome to the forum, I'm sorry to hear that you've been having a hard time lately.

I wish you all the best for your take down surgery. We have a good number of members who have had this surgery, who will be able to share their experiences with you and give you lots of hints and tips. We have a dedicated surgery forum which you may want to have a look at and share your story in.

I know the medications can seem scary, but the side effects are only a can happen, not a will definintely happen. Lots of patients use these medications with no problems at all or very minor issues which are easily resolved. As long as you are monitored appropriately (with regular blood tests etc), any problems should be picked up quickly and the medication can then be altered or stopped as appropriate. The potential effects of untreated or undermanaged crohns disease are often a lot more serious than the effects of the medications. Have a look at our treatment section for more information and support.

If you have any more questions please don't hesitate to ask.
 
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