Comments on: Our Message Board

By: Terry

Terry — Mon, 15 Mar 2010 14:18:06 +0000

What kind of adhesive paste are you using? Also, there is a bag that goes with a belt which won’t guarantee anything but it helps…along with adhesive paste. It really helped me. I wonder if the shape of your stoma has changed and you need to be cutting a different hole size. My best suggesttion is to find a stoma nurse (I think the correct term is “wound ostomy nurse” for some expert guidance. Good luck!! Terry

By: Taylor

Taylor — Mon, 15 Mar 2010 01:37:41 +0000

Hey guys! I am 6 weeks post surgery #1 and suppose to get back to work tomorrow. But all the sudden this weekend my bags won’t stick at all. I have gone through at least 14 and my skin has had it. I was thinking about using a non-adhesive bag till it heals. Any suggestions or feedback on them? I can’t find any online. Thanks for your help!

By: Joe

Joe — Fri, 12 Mar 2010 03:59:27 +0000

Hello ML, I see you had your surgery 1 week after my take down surgery. I am presently having 12-15 BMs per day. I also have a sense of urgency. I am just curious, what is your experience so far? Are you feeling better? Are you taking imodium and/or metamuci? I would appreciate your feedback>

By: Mark

Mark — Thu, 11 Mar 2010 22:25:50 +0000

Sorry, sounds not fun. I had a couple temp ileo bag issues, but I just dealt with them and waited till jpouch. Yours just sounds like you slept too hard (a blessing though if you think about the fact you were sleeping enough to fill your bag), and the bag got too full. I think I’d take the blowout any day if I meant a good nights sleep. All those years of UC and not good sleep.

By: Terry

Terry — Thu, 11 Mar 2010 20:21:19 +0000

Rachel, I use Depends and they help keep the bedding clean. I wear underpants over them to make me feel more normal in front of my wife. She could care but it bothers me to be seen with the Depends on. If your problem continues, you might ask your surgeon about Cholestyramine powder. It was initially developed to deal with cholesterol, hence the name. I have had just two doses (started yesterday) so I can’t speak to its effectiveness but the pharmacist was glad to see the prescription, saying it seems to work. Good luck to you.

By: Terry

Terry — Thu, 11 Mar 2010 20:01:05 +0000

Michael, these folks nailed it right on. Travel light…the rooms aren’t that big in any hospital. I brought my Blackberry instead of laptop and was able to communcate with my friends that way, as well as keep up with the news, sports scores etc.

By: Terry

Terry — Thu, 11 Mar 2010 19:56:54 +0000

Colin, that happened to me as well. Do you have a stoma nurse? Mine was covered by my insurance. The nurse provided me very good coaching and advice on different products. Her mantra was “You don’t want poo in your shoe!” Do you “bleed” off excess gas when you see it in your bag? Also, there are bags available that have gas removal strips. I think I got mine from Coloplast. That company is also good with advice and sent me samples to experiment with. I also set my alarm for a 2-hour wake up, and I would check the bag and empty it if needed. For me, sleep deprivation was better than accidents. I still set the clock for 4-hour wake up with the j-pouch because I’ve had accidents while sleeping. Good luck to you, and “this too shall pass.” (I mean the bag, not the poo…” Terry

By: Colin

Colin — Thu, 11 Mar 2010 18:00:17 +0000

Hey guys, had a rough morning today. I woke up with my bag totally inflated and hard as a rock from gas/poo (as usual…that’s nothing new), but today the poo actually managed to break the seal on the bag and come out all over. It was kind cruddy for awhile to clean everything up, but I’m over all that. Really, it’s been 4 months and this is the first time this has happened, so it’s not the end of the world. What I’m trying to figure out, however, is how to make sure that never happens again. People who’ve been through the bag waiting period, did you ever have this problem and what did you do to guard against it?

By: Emily

Emily — Tue, 09 Mar 2010 00:38:15 +0000

ML- I too had a lot of discomfort around the stoma area post takedown. It was tender to the touch and had a slight bump for a good two months after takedown. I thought I was working on a hernia or something because I picked up my 3 year old too soon (you understand that!) but the doctors told me it was probably scar tissue since I wasn’t having any other symptoms. Hope you are feeling better…so glad this whole journey is over for you!

By: Emily

Emily — Tue, 09 Mar 2010 00:33:13 +0000

Teri, thank you for bringing up the topic of night leakage. I had my takedown 7 months ago and was very surprised when it happened to me (I am 30). I knew it was a possibility but I wasn’t quite ready for it to actually happen. I find now that night problems happen rarely now as time has passed. Things that worked for me were staying away from greasy foods, not too much dairy throughout the day and eating a lighter dinner earlier inthe evening. Benefiber seems to work best for me during the day and I also take lomotial before bed. I find that sometimes the night issues happen when I am really tired and sleep deeper than usual; preventing me from getting up to go. I think that things will get better as the pouch gets adjusted and our bodies recover from the shock of this whole surgery. See if any of these things help your daughter; I’ll be thinking positive thoughts!