I had an ileostomy for 4 years (wish I'd not got rid of it, actually). With that I got my first remission in 15 years. I got it due to sepsis after a resection surgery, so I had not time to think about
. It was, until the moment of decision, my biggest fear and it turned out to be a life savor and my first reaction to seeing the stoma was "Cooool" cuz it is; that some one figured out how to allow some one to live this way, totally freaking cool!
I found most of my empties were very liquidy, so in summer I had to drink lots of OJ and eat bannana's to keep my potasium up, but that was easily done. I ate pretty much everything though I found water melon was a guaranteed blow off. I even ate salads though it gave me some chunks to my discharge.
Immodium did nothing for me slowing it down.
A couple of tricks, Since I hated getting up to empty in the middle of the night I rarely ate past 7:30 pm ( and if I did I knew I'd be doing a middle of the night run).
I always did my changes in the morning before breakfast. I found my output was almost nill at this time and could do a change in 20-30 minutes once a week. Of course if I got a blow off, ie: the flange came off, I'd have to do it when it needed to be done. There were times when I'd have a blow off in my sleep (watermelon and a pasta primvera - never ate that again, too many veg at once), if it wasn't too bad, I'd wrap a blue pad around me and go back to sleep and do my change then. Otherwise I was up dealing with it.
Even with a fistula on my stoma, and contents draining on my skin a bit ( I had to custom cut my flange) I got so I did one change a week and my skin was mint.
Of course I had accidents, the clip would slip off, ewe, and the blow offs, but these were infrequent.
I always traveled with a ziplock containing a change ready to go.
I used Opsite (expensive, but handy) I cut myself a template looking like an arched road bridge so that I could place it around the flange tape (and over) and I swam fine.
I was physically very active, including sex, and it was not a biggie. I wore boys swim trunks and they hid the pouch.
For odour the only option is M9, it's scentless and for the first time in my life my poop didn't stink. Great stuff, especailly when you eat garlic and chicken, etc...
Here's the thing, if you have CD higher up it may not help that, necessarily. But I had skip lesions including duodenal CD and all of it calmed down with the pouch, they cut out many of the CD lesions but not the Duodenum.
Check out the ostomates and google Shaz's Ostomy lounge, that one's been around since forever.
Ok, the only thing I had to think about
where long trips, bathrooms matter for those and movies. I never ate before going to a movie theater, or any theater, but other than that I really didn't have to adjust much.
Oh and no more hot baths or hot tubs, too hot for the stoma, showers are ok, and swimming as I said was fine.
I'd go with the very best doctor, always a good idea and you won't be in hosp for long.
Best wishes, you really will be able to eat more of what you love eventually, realllly :)!
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.
Post Edited (MToronto2) : 5/13/2010 9:39:59 PM (GMT-6)