Living with Indeterminate Colitis and an Ileostomy

I am a 42 year old male.  I have been diagnosed with "Indeterminate Colitis" .  I have an ileostomy and HATE the pouch!!  It is placed very high on my belly almost beside my belly button - it certainly affects my "mojo" ...lol.  My surgeon wants me to wait up to 5 years to see if I don't have Crohn's disease as opposed to colitis for the final pouch surgery to take place.  I find my ileostomy really affects my lifestyle.  I find I am not nearly as active as I used to be.  I find if I go swimming I have to make sure my bathing suit is hiked up like an old man - not too fashionable!  If i swim I run the risk of having to change my pouch often as the adhesive seems to break down faster.  I wouldn't dream of going in a hot tub spa! Sports are difficult to play as I am always worried about my ileostomy.  I hate to sound negative because I am certainly greatful thast I am at least healthy again and I do feel great otherwise.



Please respond!



Bruce

Ottawa, Ontario, Canada

Hi Bruce,

I'm afraid it's tough, but I think that opposite the navel is about where its gonna be for all of us.

You just have to get used to wearing high waist long leg trunks or shorts.

I always found the most difficult part of playing sports (Rugby, Squash, Swimming ) was the fact of keeping ones shorts on in the shower, but hey, I hardly played any sport age 20 -28 because of UC so all the sport I played after ( Rugby until age 47 ) was a bonus. On top of the fact that I was actually still alive.

As Monty Python said " Always look on the bright side of life ".

I have both a Colostomy (age 30) and a Urostomy (Age 3).  I used to swim, play roller hockey, baseball, basketball, golf...  etc..  I never let it slow me down..  My colostomy did slow me down.  I haven't really swam since I got it 6 yrs ago.  However, when I did swim, I just put a tank top on.  Who cares what others think..  If they see, so be it.  Let em ask what it is.  Ignorance only breeds fear and loathing.  It is humanity's very nature to fear and attempt to drive off what we don't understand.





Ostomies shouldn't stop you from enjoying the things you like to do, just changes the way you enjoy them.  

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   Have fun, be careful!!



Jon

I was 29 when I was diagnosed  with "Indeterminate Colitis"  also,  went from what thought was the flu to a month in the hospital.  Next then I knew I lost my large colon and woke up woth this freaky looking thing that linda looked like a wet rose stuck to my abdomen.  She is now affecionately called "Scarlet".  Anwyways,  it does suck, but the alternatives are worse.  I agree with it being difficult to adjust to new clothing.  It takes time and the you'll end up not remembering was life was like without your ostosomy and then you will and then you'll finally accept it and move on.  It takes time.  I'm only a year and half in and I lots to learn yet, but it's getting better every day.

I have had an iliostomy since 1998 (colitis, crohns).

after the initial adjustment, I have found that I have been able to pursue all the athletic activities I pursued pre surgery..but with adjustments...

I am also a swimmer..I use a water proof tape, on the edges of my flange, wear a spandex body undergarment, under my bathing suit..I continue to enjoy all sports, including contact sports..you would be suprised at just how resilient your stoma is...

cheers

terry

thunder bay

age 53

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Hi Bruce...hang in there buddy...trust me it does get beta...and im all for wearing whatever u feel comfy in and if people see it...then who cares...its time for these things to come out in the open...so many people  r getting them...the stigma must be kicked in the butt--if it makes a persons quality of life beta..than stuff everyone and what they think..I have never been a sports person due to crohns...but hey bedroom sports beat  any other..lol...u can watch or join in...(oh my!! ..hope we all have a sense of humour out there)...chow baby.....xx

Bruce,

I have had my illeo for 10 years and have tried to plan my swimming around change time. If I'm due for an appliance change then I go for my swim, enjoy myself and when I get out I just change the whole appliance. Yes it gets hard in the summer when your sweating your "bag" off but a little baby powder under it between your bag and your stomach works wonders. Dip your feet on the pool or go in the lake up to your thigh to cool yourself down.

As for it being high up I can relate a bit. Mine is slightly below my belly button and with the 70's style being such a huge thing again, most jeans or pants are the low cut. I have found clothes out there that are mid cut and those I can wear without any huge problems. As for a bikini, I wear the skirt type bottoms and just tuck the top of the bag in (folded down) and no one can see anything. Maybe larger surfer shorts are what you need, then ya can wear them up higher on your waist and still look cool.

My life took a HUGE turn out to left field after I too just "woke up" with my new found friend (Rosebud) However I go through the ups and downs  with more ups these days. Try to stay positive and remember your still YOU!! If others can't handle it then the are not worth your time!



Good luck!



Sharry

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