Some very important (to me at least) questions

I would go with the best surgeon.

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 :)!

I'd go with the surgeon's advice. I think your life is about to change for the better, I really do.

Opsite is a clear tap, in a roll, that you can keep things dry with. Cool stuff.

M9 is a pouch deodorizer, it had no scent itself (there's one that smells like lemon, and all I can say is gross). You poop will no longer stink.

Oh on more thing, since we still pass gass, they tell you to minimize gassy foods. To some degree I did, but I also learned to go to the can and simply empty the air, and I figured out how to do it in be (I slept alone at the time) without spillage. Anyway, they will tell you to avoid carbonated beverages, no biggie for me, I hate pop (soda) but I like beer. Cuz of the CD beer was the first thing to go, but I found I could drink it again after my surgery.

Here's what I did. 1) I only got the good imported beer, Belgian is my fav. 2) I ordered a 1/2 pint in a pint glass (Good news here is I usually got more than a half pint) and a spoon. I stirred the crap out of it and got rid of the bubble and enjoyyyyyyyyyyyyyyyyyyyyed it very much!

Sigh, not drinking again. Oh well, I never liked being drunk anyway.

Please let us know how things go for you, and visit even when you feeling like a staaaahh, ok maybe a minor celebrity.

Good thoughts to you and yours.

hspenser~I did have early small bowel, too, and (knock on wood) that has not been an issue:)

Just how we are different on how Crohn's affects us, it is the same with ostomies, since I don't have a problem with eating late or drinking beer without removing the fizzies and I LOVE beer It is trial and error once your are eating real food again!!

There are filters that allow the gas to escape...they are charchol lined (no smell) and they keep the ostomy pouch flat to your stomach There is also a product called Sure Seal that keeps the wafer dry and there are even folks who hot tub...but I'm not one of them!

It sounds like it will be a Proctocolectomy (removal of Colon, Rectum and Anus)? It is not a small surgery, but so worth it, and if it can be laparoscopic recovery will be easier (but whether it is open/lapro isn't as important as having an expert perform the surgery!).

If you are interested, in talking/meeting a 'real live person' with an ostomy, ask your doc if there are any volunteers you could meet! It might help with the final decision to do/not do the surgery...good luck I'll be thinking of you.

Hspenser, how are you doing?

Hi there, hspenser... Sorry to hear things are not working so well. I thought you tried Tysabri a couple of years ago when I first did. Or, have you not been on it since the trial? I've also failed Cimzia, Humira and mtx and am facing a potential ileo. They want to do permanent, but I'm still nervous. It's good to read everyone's responses. I just wanted to send good wishes...

I would try everything drug wise before going for an ileostomy I had a temp one for 15 months and hated every minute of it Bev x