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After 2nd surgery bag is a serious problem

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Ulcerative Colitis
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Posted 4/19/2018 4:48 AM (GMT 0)
Well I sit here 1 hour after I fell asleep with a leaking bag again. This after I went into Manhattan to see Stoma nurse today. Now I started at least 4 a day Imodium today. Will a more solid stool keep leaks from happening ?? I hope. But I'm wondering since end of Stoma is so close to my skin do I need Stoma adjusted/fixed. I'm going freaking nuts with this thing. I figure if a professional Stoma nurse can't fix it then who can??? Just took a painkiller to help put me to sleep -I hope. Also have a seperation between Stoma and skin that can't be helping the problem. Going to call Surgeon today and try to get ideas on what we can do. Surgeon was in office today when I went into city so he knows I was there bc of bag issue. Let's hope I can get some help from Drs office. Any suggestions are accepted. Thanks
Posted 4/19/2018 5:06 AM (GMT 0)
I am sorry you're having so much trouble. My loop was a problem the entire time I had it. it was the worst. I used a lot of pastes and strips, I tried a ton of different bags. I ended up having to change at least once every 24 hours. I never made it longer. I was beside myself by the end. I remember waking up in the middle of the night with stinging and I decided to change, BAD idea, it was impossible. I ruined so many of my supplies. It can get pretty disheartening. Are you using convex?

I used these:
nu-hope.com/products.php?redirect=/products/barriers/54-strips.php

sometimes in addition to an eakin. I tried the turbot hard rings... I would lift upward when I placed the wafer to try to get the stoma to go straight instead of down. In the end, the thing that probably helped the most, was using a one-piece appliance. At least then, getting it on and off was one single step. Adhesive remover was my friend. When you apply and remove that often, it hurts. I also had a bit of separation shortly following step 2. Mine healed. I think I got it from being too active too soon.
Posted 4/19/2018 12:29 PM (GMT 0)
When you say bag leak what do you mean? Is it actually leaking onto your clothes or bed? Or is it just the skin around the stoma that burns? Honestly, I just sucked it up and dealt with it. It was awful, definitely stung some days pretty bad. Why I hated having an ileostomy but I realized it was only temporary.

Also, try the skin crusting technique with stoma powder and wipes if it's your skin that's burning.
Posted 4/19/2018 2:25 PM (GMT 0)
Skin not burning at all. Bag leaks most under wafer and leaks most to vertical incision side which is dangerous bc incision is oozing. Mostly leaks onto clothes if I don't catch it on time. Bull do u work?? I'm a contractor who does residential work. I don't want a serious leak occurring in customers house. That wouldn't be good. Best visiting nurse is coming this morning. Hope she has ideas. Will update my progress
Posted 4/19/2018 6:12 PM (GMT 0)
3time, have you been to the ostomy forum here? I've lurked around there some and there's lots of discussions there of this situation and possible solutions.
Posted 4/19/2018 6:42 PM (GMT 0)
Yes I have been there. Not a lot of visitors to site but I'll check it out
Posted 4/19/2018 7:06 PM (GMT 0)

3timechamp said...
Well I sit here 1 hour after I fell asleep with a leaking bag again. This after I went into Manhattan to see Stoma nurse today. Now I started at least 4 a day Imodium today. Will a more solid stool keep leaks from happening ?? I hope. But I'm wondering since end of Stoma is so close to my skin do I need Stoma adjusted/fixed. I'm going freaking nuts with this thing. I figure if a professional Stoma nurse can't fix it then who can??? Just took a painkiller to help put me to sleep -I hope. Also have a seperation between Stoma and skin that can't be helping the problem. Going to call Surgeon today and try to get ideas on what we can do. Surgeon was in office today when I went into city so he knows I was there bc of bag issue. Let's hope I can get some help from Drs office. Any suggestions are accepted. Thanks

Yes a more solid stool will help. It took me right up to the day I got take down surgery to get the hang of an illy bag (3 mos). Hopefully the surgeon will be able to give some insight on the issue.

On a side note congrats notsosickly! I think last time I was on this forum you still had a colon. Hope all is going well.
Posted 4/19/2018 8:31 PM (GMT 0)

3timechamp said...
Skin not burning at all. Bag leaks most under wafer and leaks most to vertical incision side which is dangerous bc incision is oozing. Mostly leaks onto clothes if I don't catch it on time. Bull do u work?? I'm a contractor who does residential work. I don't want a serious leak occurring in customers house. That wouldn't be good. Best visiting nurse is coming this morning. Hope she has ideas. Will update my progress

Yeah, I'm a program manager for big corp. Mostly desk work, can work from home too if needed.
Posted 4/20/2018 1:01 AM (GMT 0)
BARRIER SHEETS. Coloplast makes a great one /www.coloplast.us/brava-protective-sheet-en-us.aspx

It goes on first and then you build everything overtop of it. Contractor talk: Think of it as a good foundation and it will keep the leaks out.
Posted 4/20/2018 2:44 AM (GMT 0)
Posted on the ostomy side... I too had skin separation and I leaked towards the incision. The barrier sheets helped. Other suggestions on ostomy side..

Also...ate more Peanut butter and crackers...and marshmallows... They also helped on the food side...

Clo
Posted 4/20/2018 4:57 AM (GMT 0)
3timechamp I am having sort of the same situation here. I don't leak often because I am running to the bathroom every 30-45 minutes to empty my bag and it's always full. I am sitting here at 1 am eating crackers and drinking Gatorade I had a few dizzy spells today so I know I am dehydrated. It comes out pure liquid.

I would suggest... peanut butter, Pringles chips ( stoma nurse suggested that one) crackers and bananas to bind you up a bit.
Are you using a larger bag with a spout on the end?

you can try brava elastic barrier strips and lying flat when putting your bag on that way your stoma fits right into the ring that was the best advice my stoma nurse gave me. I am lucky she comes to my house once a week, I am concerned about the skin around my stoma it is ulcerated and bleeding. Wish there was something to heal it.

I hope you find relief soon I know this isn't easy especially with your working out of the house.
Posted 4/20/2018 12:32 PM (GMT 0)
The loop ileo is notoriously bad. Hopefully your reversal surgery isn’t too far off. I had a tough time with my loop too. Unfortunately I wasn’t able to get any real solutions because my stoma was so recessed. I just had to wait for my takedown. Hang in there I can sympathize.
Posted 4/20/2018 1:27 PM (GMT 0)
To all who have had colon removed, or partial...I thank you for opening my eyes. I feel so badly for you all; but I do thank you for sharing your journeys. I used to think...once the colon was removed, no more problems. Now I realize, the UC problem may be gone, but new challenges arise afterwards. NOW I realize why my G.I. doctor told me, "PLEASE, you don't want to consider that yet", a few years ago during a terrible flare. I actually begged him to refer me to a surgeon to have the whole thing DONE. Fortunately, my good doctor has more sense than I. Sorry for babbling...just wanted you all to know that your sharing is much appreciated. Try to enjoy at least a little of every short day.
Posted 4/20/2018 1:47 PM (GMT 0)
I've been reading your posts. I had the same problem as ByeByeUC, a recessed loop ileo. It was so much harder to manage than the end ileo from my first surgery! I would be in tears trying to get the bag changed. Then I would have all kinds of problems with leaks. Unfortunately, I just had to bide my time to takedown. Remember this is temporary and your next surgery will be here before you know it! I just wanted to let you know I understand what you're going through. While my J-pouch is not perfect, I am very happy with it and I am able to do everything I want to do. That was not the case before my surgery.
Posted 4/20/2018 4:48 PM (GMT 0)
Everything stable now. Visiting nurse yesterday said bag leak was very slight. We changed bag. She said my large incision was draining/leaking. So that was majority of liquid on stomach. Loop will be tougher I presume. Stoma is smaller then first one. Bag hasn't leaked since yesterday. Horray. Hope for best. Thanks everyone
Posted 4/21/2018 11:44 PM (GMT 0)
Glad to hear you’re doing better!
Posted 4/22/2018 12:18 AM (GMT 0)

geezernow said...
To all who have had colon removed, or partial...I thank you for opening my eyes. I feel so badly for you all; but I do thank you for sharing your journeys. I used to think...once the colon was removed, no more problems. Now I realize, the UC problem may be gone, but new challenges arise afterwards. NOW I realize why my G.I. doctor told me, "PLEASE, you don't want to consider that yet", a few years ago during a terrible flare. I actually begged him to refer me to a surgeon to have the whole thing DONE. Fortunately, my good doctor has more sense than I. Sorry for babbling...just wanted you all to know that your sharing is much appreciated. Try to enjoy at least a little of every short day.

oh please don’t feel bad for me! Having my colon removed and getting a j pouch was the best thing I ever did! A few temporary setbacks immediately post op is nothing compared to the horrid UC flares I had and being sick all the time. And life is good now years after surgery so it’s all good for me ;)
Posted 4/22/2018 1:28 PM (GMT 0)
I agree bye bye. No matter what my current state throws at me it's not as bad as flares I dealt with. Adapting to current loop etc isn't fun but I'll be ok.
Posted 4/22/2018 2:22 PM (GMT 0)
Why do people expect that you come out of a surgery and not need time for your body to recover? There are ups and downs after surgery but the trajectory is upwards. I had my hip replaced in 2016 due prednisone and I took me 4 weeks to be able to walk without a cane and I wasn’t allowed to move my leg in a certain direction for 12 weeks (restrictions). Should I have waited and suffered in pain until my hip broke? I would have been so much worse off. My colon surgeries were difficult but I’m better off because of it.
Posted 4/22/2018 3:04 PM (GMT 0)
1905 it's funny bc we get sympathy from some people bc we had to opt for surgery. These people don't know that like me now we get out butts kicked some during surgeries but we will come out the other side of surgery a new and improved person(or like John Candy in Stripes says a lean mean fighting machine).
Posted 4/22/2018 4:02 PM (GMT 0)
I feel bad for people who say they can't take a vacation, or work a job, that they had an accident, that they are in and out of doctor's offices and hospitals, that they can't make plans, that they wore a diaper to their own wedding... I wonder how they will ever be independent? I can do everything since surgery. Before surgery, I was one of those people who couldn't work or travel. That is sad.

I also feel bad when people give up years and years of their life fighting unnecessarily, that is sad. I don't think accepting a slightly "new normal", is really that horrible compared to giving up 10, or 20 years, the ability to travel, or to be a self-sustaining human being. I guess if i had someone to support me financially and physically, perhaps I wouldn't worry so much, but in my case, it is necessary for me to be capable of supporting myself. Now I am! That is something to celebrate in my opinion.
Posted 4/23/2018 2:10 AM (GMT 0)
I agree with you all....and I only spent a little over 2 years fighting to avoid all surgery....of course my diagnoses had crohns tacked onto it and I ended up with a colostomy... but I am better than before....when I was having all those accidents and forever looking for immediate access to a bathroom.

Don't feel sorry for me. I am happy as I am. I feel sorry for all those individuals still having accidents...missing out on a better quality of life.
Posted 4/23/2018 9:42 AM (GMT 0)
LOL OK, I won't feel sorry for anyone...and trust me...I DO FULLY understand what you guys are saying. I never mean to offend anyone. As I said, I begged my doctor to have my colon out; I just never understood all that is involved. I can easily understand that, when in a flare, almost anything is better than the constant worry about where's the closest bathroom and IF I can make the 10 feet to it. I'm not the brightest bulb in the hallway, but I know that in this short life...we have to do all we can to enjoy every single day, or most of it. Stay well all, and best of luck.
Posted 4/23/2018 9:45 PM (GMT 0)
No matter what I'm going thru now with loop I'm ok with. As of July I'll be a new man. Surgery is a great option. Hope it's right choice for u all also
Posted 4/24/2018 12:17 AM (GMT 0)

clo2014 said...
I agree with you all....and I only spent a little over 2 years fighting to avoid all surgery....of course my diagnoses had crohns tacked onto it and I ended up with a colostomy... but I am better than before....when I was having all those accidents and forever looking for immediate access to a bathroom.

Don't feel sorry for me. I am happy as I am. I feel sorry for all those individuals still having accidents...missing out on a better quality of life.

I have a new hip because of fighting against having J-pouch surgery. I also missed out on so many things during my UC flares.
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