Meet & talk to fellow OstoMates 20,339 members


Joined this site August, 2019...have learned alot in this last month. Great people here.

Have had Chron's disease half my life. Dealt with,all the medicine available untill it no longer helped. Remicade sucked, prednisone sucked. Life went on thankfully emergency surgery was 11/2016... Had no idea what was in store for me then... no time to research this ileiostomy.. went to u-tube and saw some happy people draining water out of their bags to show how easy it is. (water?) ..sitting reverse on the toilet while they sat and drained.. oh, that's not too bad.. So here I am looking at posts from people in similar situations. getting idea I wish I knew before surgery. i f you read my other posts i am not as complicated as most having IBD for 35- years.

Am now Post ileostomy a few years. Has solved problems . No more meds! But having a situation with rectal bleeding without an intestine. " the stump." Doctor left the stump in hoping to reconnect. Not so likely now due to chrons in the stump..back to meds for that... externally though. Hoo-ha!

Just want to give and take advice here. Contribute what I can and learn..share..laugh.. Meeting people socially would be so cool.
Revised profile 8/22/2019
FYI- Read my post about ibd and hearing loss. Drop in to say hi. Thanks.

New Equipment I use and recommend- update 10/01/2019:

Convatec flange cap- 401909. this cap you use for showering or intimacy. it's 4 inches round.
Convatec bag/pouch- 413334- the largest- a good 9 inches worn hanging horizontally
Convatec wafer- 125274. good material fabric-like.
Hollister slim barrier rings - 7815
Osto-E-Z vent pouch venting valve. great item to relieve air/gas in your bag, no part #.
Brava Elastic barrier strips. 120700 by Coloplast. Outstanding item to prevent leaks. for get about tapes, or wraping the bag. This is the shit! allows extended wear time and peace of mind without worrying about leakage.
Brava adhesive remover. 87266? 1.7 oz found cheaply on flea bay.
Am also looking into Coloplast's SenSura Mio Cinvex Flip. I have a buldge, likely hernia forming a mound and this item looks like it will be a great idea. It looks like a star fish and it made for bulges type stomas. details to follow.

I use a wrap to keep bag vertical. Out of the way. I never liked it "swinging" free. This wrap keeps you very warm unfortunately. (sweaty)

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