Long Time Crohn's Survivor

Hi All
I've had crohn's for sense I was a kid, 1969 actually. Under gone lot's of operations the last being 17 hours to replace my coke pouch in Jan. of last year. Presently taking Humira and Mercaptopurine and doing fine. I just recently separated from my wife of 22 years, not liking being single much but it's just another change to deal with the best I can.

My Doctor is Sarah Glover at Shands and I can't say enough about how great she is, the best.

Sense my first operation in 69 it's been a very up and down ride. Numerous operations, dealing with fistulas, prolapsed stoma's, etc. most of my life.

I wish I could tell those fairly new to Crohn's it gets easier over time but it doesn't, after dealing with this all these years I can a test to that. But don't let it stop you from getting out there and experiencing all the great adventures life has to offer. I rode my mountain bike the length of the north and south islands on New Zealand, took six months but what a great time it was. I have snow skied at resorts all over the US and Canada. I've tried very hard not to let it stop me from enjoying life and I hope you don't.

Don't expect other people to understand what you go thru with an ostomy, crohn's they never will. So don't set yourself up for disappointment by expecting others to understand just carry on and don't worry about it. It's easy to close yourself off, stay at home you'll miss so many great things life has to offer by doing so. I know it's hard to go out as you are always worried about your ostomy if you have one and or being aware of where the nearest bath rooms are. Been there, done that believe me, smart planning is one thing being scared about what might happen is another completely. Don't let Crohn's rule your world, don't let it defeat you. A big part of keeping crohn's at bay is your mind set, your attitude… stay positive, exercise daily.


This is a great web site I wish I had taken part in long time ago and hopefully I can help those new to crohn's and all that goes with it find a bright spot in what can be a very depressing situation. This is a horrible disease there is no getting around that but you can deal with it and have a great life.

Hi Donjh,

Welcome to the site.

Thanks for sharing your story, you certainly have extensive experience with this disease. It's great to hear that you've stayed positive throughou. I'm new to this and have just been diagnosed a couple of weeks ago. Waiting to see gastroenterologist to discuss medication and surgery.

Is inspiring to hear a positive voice despite all the challenges.

Stay strong,

Eric.

Hey there and welcome to the community!

Goodness, you're certainly a veteran to all of this. I have no doubt you have much wisdom to share with others here and I hope we can impart some tidbits that may be of use to you in your continuing journey.

I'm glad you found us and hope to see you around

Hi and welcome! I appreciate your upbeat attitude and your words of advice. Thanks for sharing.


Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.

After having been part of this forum for awhile I have to say reading some of the story's, posted breaks my heart.

No child should have to go thru this and all the mothers here in support of their little ones is great. I wish there was no need for them to be here.

Crohn's is such an insidious disease that many doctors don't know how to deal with it be sure you seek out a specialists who deals with crohn's all the time and be very proactive in dealing with your health care.

I'm almost a year out from my last operation which was 17 hours long. They took my coke pouch out and I'm back to having a stoma again. Much prefer my coke pouch but it had to go. They also removed a bunch of fistulas I had so there isn't much left of my small intestine but all is well so far.

I was hoping by taking part here I could help others with crohn's as I've been dealing with it a very long time. Reading some of the threads, posts I just don't know what to say many times.

After dealing with my own crohn's for 45 years now the best advice I can give is to have your blood work done every two months, an MRE at least once a year. Find a Doctor who deals with crohn's all the time. As hard as it might be stay positive, don't let yourself become isolated from the outside world. Stay active get up and move, exercise as much as possible.