Hello everyone,
My wonderful boyfriend was diagnosed with Crohn's disease six years ago and after exhausting all options, he is now facing the very real prospect of having an end ileostomy.
Before the disease took hold of him, he was very active. He is a very talented roller hockey player, wakeboarder, and rock climber, but while he has been so poorly in recent years, he's been unable to do any of this stuff.
So while he's not really doing it in his current state, I think he is even more concerned that living with a stoma will wipe out his chances of ever playing hockey again, of ever wakeboarding again, etc.
What I'm asking is if there is anyone out there, regardless of the reason for having a stoma, who can maybe let my boyfriend know that life goes on with a stoma? I see and read so many positive stories from you guys on here and from elsewhere on the web, and it's great to see.
By the same token, if there is anyone out there who is about our age (25ish) and wouldn't mind talking to my boyfriend, just as someone who understands his concerns, I would be eternally grateful. I just want to help him in whatever way I can, because I hate seeing him so sad
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I'm also very happy to meet other partners of Crohn's disease/UC/IBD patients to share experiences with.
Thanks for reading! I hope to hear from you soon.
Hi Rach, though I am not your age, I've had an ostomy since I was in my mid-thirties. Even though I don't play hockey, I've done a lot of other activities: hunting, fishing, swimming/hot tubs, snowmobiling, and worked 40 hours a week. Also, they make what's called an Ostoguard for contact sports, so don't let an ileo hold him back; it didn't for me. Good luck, Ron in Mich.
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About seven years ago, just about every aspect of my life was ostomy related. From the moment I was told an ostomy might be needed until some months down the road I existed as a person afflicted with a colostomy. I feared someone other than my immediate family might find out I had a bag. Ugh! What could be worse? Suppose it filled real fast when I was out with no place to hide and take care of myself. God forbid should it leak in church! Suppose I roll over on it in bed. I was a lesser creature, destined to a life of emotional anguish and physical routines different from most of the rest of the world. I felt like a freak. Then I found folks like you guys here, read your stuff, really “listened” to what you had to say and I began looking at things differently. We know perception is everything and I began to understand how good things were relative to what they could’ve been. So many folks had it so much worse than I did. That didn’t make my discomfort go away but it exposed how fortunate I was to be dealing with my stuff and not their’s. I felt a little guilt, maybe selfishness but quickly forgave myself by understanding I just wasn’t smart enough to fix my feelings. Then, I wonder what smarts have to do with feelings. My perception was warped so my perspective toward my existence was warped.
I learned over the last few years with the help of lots of folks right here at MAO that I could be better at living just by accepting some facts. It is what it is and so what? It’s not the worst thing to happen to a person.
I think everything is, in some way, related to everything else. I just put the ostomy thing in the back seat and drive forward.
Respectfully,
Mike
Life definitely goes on. I had my permanent ileostomy since 2009 after a long bout with Crohn's disease. I used to be very sick before the surgery, taking high dosages of medication. After the surgery, I am no longer sick. I am no longer taking prescribed medication.
I know that this is a scary procedure, but I would rather be healthy with a stoma than sick without it.
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.......No worries about having a stoma and life's activities slowing down. I am trying so hard to think of the name of a professional football player who has a stoma. I will repost if I think of it, but at any rate, I've had my ostomy since age 10, and this month I will turn 47. Having an ileostomy has never stopped nor prevented me from doing anything I wanted to do.
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I grew up a hard-working farm girl, tossing heavy hay bales around and working with animals, splitting wood, and doing much hard labor since I was a kid. I have also always been extremely active with skiing, swimming, snowshoeing, kayaking, rock climbing, sword fighting, saddle breaking horses, and back in my teen years, I played softball. 28 years of animal rescue with both domesticated and wildlife kept me busy, and no matter what aspect of my life kept me busy or entertained, that stoma never got in the way, not at all. Anything I get the inspiration to do, I'm doing it, even at this age. I want to encourage everyone as best I can. Keep us informed and feel free to ask any other questions you may have.
Much love and encouragement to each of you!
~Doe
I've snorkeled on the Great Barrier Reef, have a pilots license, family and a 40 year career.
Basically what I'm trying to say is there is nothing you can't do if you want to. Ok, maybe not an astronaut.
The pro football player is Rolf Bernerschke, who was a kicker for the San Diego Charges, both before and after Ileostomy surgery.
Hope this helps.
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My Ostomy Journey: April | Hollister
Hi there all the way from Australia!
Your partner's story is so similar to mine. I was 21 when I was diagnosed, but before becoming sick, I was a really athletic person. The Crohn's put a stop to all of that, and medication was terrible for my body. Two years ago, I had my permanent end ileostomy, and I have never felt better; even the day after the surgery, I felt healthier, and I'm now off all meds. It has been a steady road to recovering my musculature, but now I am surfing, jogging, and rock climbing for the first time in ten years! I'm thirty now and I feel better than I did in my early 20s. Not to say that you don't need to take precautions like stoma guards, etc., but my surgery gave me back my life. I will never look back!
Hope all goes well!
Cheers
Carly
I'd be happy to lend a hand, point him in the right direction (finding the right products that work), lend emotional support, etc.
//Todd
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I am overwhelmed by everyone's positivity. You will not believe the encouragement this has given to my man
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I thank you all from the bottom of my heart.
Todd, thanks so much for your offer. I can't initiate a private message as I need to pay a subscription charge... Can you message me and I'll reply?
Rach
Hi, I am 58 and have been dealing with issues for a long time. Around 13 years ago, I was diagnosed with adult Hirschsprung's. Then, since February, I have been feeling horrible. About 3 weeks ago, my bowels shut down and I ended up in the hospital. Now, I am looking at ileostomy because they took out 90 percent of my large intestine. I am nervous, as I am older, but I won't let this get me down. I do believe attitude is one thing we all need.
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