Crohn's Disease Forum » Surgery » Stoma Subforum » I hate my stoma


 
07-15-2014, 03:25 AM   #1
Tricky Dicky
 
Join Date: Jul 2014
Location: Brighton, United Kingdom
I hate my stoma

Yes, I know the surgery for colon cancer was necessary, and I know this thing is temporary for a few months before reverrsal, and I know 4 weeks post-op is early days, but this is not the life I want.

I'm trying to put on weight, so eating a lot. The consequence is of course, output is a lot and frequent. Set the alarm last night for every hour to wake up to empty, but still missed it and got a blowout. I really don't want to be cleaning up me, the bed and matress at 2 in the morning.

The only positive could be that the new bag may be on well with no leaks, but we'll see. I might have got 2 hours sleep, about as much as I've had for the last month.

Very frustrated.
07-15-2014, 05:42 AM   #2
lenny
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Forgive me, I don't know how these things work exactly, but can't one use a giant container of some sort for night time? Changing once during the night seems like too much, let alone every hour.
07-15-2014, 06:57 AM   #3
Tricky Dicky
 
Join Date: Jul 2014
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Forgive me, I don't know how these things work exactly, but can't one use a giant container of some sort for night time? Changing once during the night seems like too much, let alone every hour.
The bag I've found that works best for me is a one-piece bag with additional adhesive paste for extra sticky and yo fill in a tummy gap. I don't get it right every time but it's mostly right. I change these every other day. There is no over ight attachments for these.- there are overnight big bags for two-piece bags but they don't work for me. So the answer is no, as far as I know there is no overnight option for my setup.

I am producing too much output which fills the bag too quickly and too frequently. This is the main problem, but even so, solving this won't hedessaily prevent overnight blow-outs.
07-15-2014, 07:09 AM   #4
nogutsnoglory
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Coloplast makes a large high output pouch and it has a spout for fast empty. Call them and ask for a free sample. Convatec also makes a large pouch with spout.

Nu-hope has a container that connects to your pouch at night so you don't have to goto bathroom. It's kind of challenging to sleep with the giant cord but it's another option. If you need product numbers let me know and I'll check.
07-15-2014, 07:13 AM   #5
Tricky Dicky
 
Join Date: Jul 2014
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Coloplast makes a large high output pouch and it has a spout for fast empty. Call them and ask for a free sample. Convatec also makes a large pouch with spout.

Nu-hope has a container that connects to your pouch at night so you don't have to goto bathroom. It's kind of challenging to sleep with the giant cord but it's another option. If you need product numbers let me know and I'll check.
As far as I know there is nothing that is compatible with the Salts soft convex one-piece bags that I am using, although there are lots of products out there, so there may be.
07-15-2014, 07:19 AM   #6
Tricky Dicky
 
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I should add that
I have not normally been setting alarm hiurly, usually set for one and three in the morning, but output was particularly high yesterday
07-15-2014, 07:28 AM   #7
DJW
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The first few months can be so difficult. If the output is very watery talk to the ostomy nurse about a bedside collection bag. Same setup as the catheter bag that hangs at the side of the bed.

I hope you find relief soon.
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07-15-2014, 07:38 AM   #8
Tricky Dicky
 
Join Date: Jul 2014
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I'm basically letting off steam, I had no idea it would be this difficult. In hospital after the op it all seemed to be quite easy, you change the bag and that's it, nothing about leakages, the huge variety of products, problems you might encounter, night-time blowouts etc.

Fortunately I only ought to have this stoma for a few months, but it looks like it's going to be a tough time .... And I'm supposed to be taking it easy recovering from colon cancer.
07-15-2014, 08:07 AM   #9
nogutsnoglory
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The Coloplast high output bag is its own bag so you wouldn't need the salts bag but it's worth trying.
07-15-2014, 08:12 AM   #10
Tricky Dicky
 
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The Coloplast high output bag is its own bag so you wouldn't need the salts bag but it's worth trying.
I don't think the coloplast bsgs are soft convex, which I need to use according to my stoma nurse, and secondly if you have a high output bag for the night you'd be changing bags twice a day, unless you wear the high output bag all the time, and I imagine that wiuld be awkward during the day.

I guess I'll get this right, but with little sleep things don't seem very good at the monent.
07-15-2014, 08:22 AM   #11
nogutsnoglory
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I think they make soft convex and you can try it in a 2 piece if you don't want to wear the big bag during the day. Have you tried peanut butter and diarrhea meds to slow the output?
07-15-2014, 08:31 AM   #12
Tricky Dicky
 
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I think they make soft convex and you can try it in a 2 piece if you don't want to wear the big bag during the day. Have you tried peanut butter and diarrhea meds to slow the output?
Yup, currently upping my Loperamide dose. Unfortunately apparently there is a nationwide shortage of Loperamide tabs so I may have to be splitting open capsules which is far fom ideal. Hopefully they'll help, I'm currently emptying my bag maybe 20 times a day, to the extent that the bags are falling apart after 2 days.
07-15-2014, 09:16 AM   #13
nogutsnoglory
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Ask your doctor for Lomotil or tincture of opium to control output.
07-15-2014, 10:17 AM   #14
Tricky Dicky
 
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INteresting chat with my stoma nurse yesterday. She said that if I drink any more than 2 litres in day then the remainder comes straight out of the stoma and loosens the output.

This could be part of my problem as I drink a lot through the day. I decided to measure what I drink on a normal day without changing my habits and here at 16:00 I'm already just over 3 litres. I'll see what the total is after 24 hours, but tomorrow I'll try to limit my intake - won't be easy, but we'll see. I really ought to do this anyway as I also have kidney failure and am on dialysis 3 times a week, so limiting intake will help that too.
07-15-2014, 10:32 AM   #15
DJW
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That will do it.
07-15-2014, 10:37 AM   #16
Tricky Dicky
 
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That will do it.
Hmmm, strange nobody nentioned this before, unless I was told and didn't realise the importance, but I don't recall my stoma nurse saying anything like that though. We'll see tomorrow what the effect is.
07-15-2014, 11:07 AM   #17
nogutsnoglory
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Just be careful not to get dehydrated you need electrolyte replacement when having diarrhea.
07-15-2014, 11:14 AM   #18
Tricky Dicky
 
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Just be careful not to get dehydrated you need electrolyte replacement when having diarrhea.
I won't cut back totally, just somewhere nearer to 2 litres. Tricky as during my dialysis session tomorrow I'll get weighed and they decide how much fluid the machine takes off. I need to speak about this either with the stoma nurse or the dialysis nurse, or both and get a recommendation about what to drink.

Cutting back will still be difficult I think as I'm so used to drinking throughout the day, but we'll see.
07-15-2014, 12:32 PM   #19
DJW
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Hmmm, strange nobody nentioned this before, unless I was told and didn't realise the importance, but I don't recall my stoma nurse saying anything like that though. We'll see tomorrow what the effect is.
I had that issue about five years ago and didn't even think of it until you mentioned it.
07-15-2014, 12:40 PM   #20
Tricky Dicky
 
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I had that issue about five years ago and didn't even think of it until you mentioned it.
I got to 4.2 litres by 5:30, so I think I have a clue there. Stopped measuring today and stopped drinking casually too. Tomorrow will be interesting to see what I can cut down to without depriving myself.
07-15-2014, 06:36 PM   #21
2thFairy
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I was drinking 5 liters of water initially and have now cut back to 2 liters, but I did it very slowly. Like NGNG said, be careful that you don't get dehydrated, 'cause that really sucks and can happen fairly quickly sometimes.
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07-16-2014, 02:30 AM   #22
Tricky Dicky
 
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I was drinking 5 liters of water initially and have now cut back to 2 liters, but I did it very slowly. Like NGNG said, be careful that you don't get dehydrated, 'cause that really sucks and can happen fairly quickly sometimes.
Did cutting back help significantly ?

I had a better night last night. I set the alarm for 1 and 3 and didn't need to empty any more than that. Got up at 5 and emptied but only for comfort, it wasn't full.

Have started cutting back fluids today - no tea with breakfast, I usually have 2 cups and then that's over 0.5 litre for a start. We'll see how this goes today, am measuring to be sure where I am.
07-17-2014, 06:01 AM   #23
Tricky Dicky
 
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Well, after the fitst day of limiting my fluid input, it certainly seems to have firmed up the output. We'll see if that continues over the next few days.

Next thing is to address the frequency of emptying, so I think I need to regulate my food intake and times. Not particularly compatible with me needing to put on weight, but I'll have a go.
07-17-2014, 09:11 AM   #24
D Bergy
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I hated my bag also, but after I blew the first one out in the hospital I told them I needed a giant bag as my volume was huge. I don't remember the brand but they make big bags.

After reversal minus my Iliocal valve, I still needed something to firm things up. I use Cholestyramine which works well. When I was flared even that did not work well. When I eliminated the flare, everything works fine. I can even skip the Cholestyramine without too much trouble now.

Dan
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07-17-2014, 09:19 AM   #25
Tricky Dicky
 
Join Date: Jul 2014
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I hated my bag also, but after I blew the first one out in the hospital I told them I needed a giant bag as my volume was huge. I don't remember the brand but they make big bags.

After reversal minus my Iliocal valve, I still needed something to firm things up. I use Cholestyramine which works well. When I was flared even that did not work well. When I eliminated the flare, everything works fine. I can even skip the Cholestyramine without too much trouble now.

Dan
For all my life, long before this colon cancer episode, I've had stool issues, generally constant diarrhoea, for which my GP prescribed codeine, which seemed to work but I don't think I'll be able to take that any more. I'll carry on with Loperamide while I have this stoma and discuss with my gastro surgeon about what will happen after reversal.
07-17-2014, 10:04 AM   #26
Daisy123
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For all my life, long before this colon cancer episode, I've had stool issues, generally constant diarrhoea, for which my GP prescribed codeine, which seemed to work but I don't think I'll be able to take that any more. I'll carry on with Loperamide while I have this stoma and discuss with my gastro surgeon about what will happen after reversal.
Why can't you continue the codeine? I have been on it over 20 years. It is the only drug that helps me with diarrhoea. Imodium blocks me immediately.
07-17-2014, 10:08 AM   #27
Tricky Dicky
 
Join Date: Jul 2014
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Why can't you continue the codeine? I have been on it over 20 years. It is the only drug that helps me with diarrhoea. Imodium blocks me immediately.
I have renal failure and was told it's not very good for me. I'll chat with the gastro surgeon, explain and see what he come up with. Maybe it'll be back on codeine, but it didn't siund like it when we were talking after my op 4 weeks ago.
07-20-2014, 02:29 PM   #28
2thFairy
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Did cutting back help significantly ?

I had a better night last night. I set the alarm for 1 and 3 and didn't need to empty any more than that. Got up at 5 and emptied but only for comfort, it wasn't full.

Have started cutting back fluids today - no tea with breakfast, I usually have 2 cups and then that's over 0.5 litre for a start. We'll see how this goes today, am measuring to be sure where I am.
It did help me significantly. Sounds like you are doing a bit better already. Good deal.
07-20-2014, 02:42 PM   #29
Muuzicman
 
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Hi, I just registered and not sure of the response format. I feel your frustration. My surgery for rectal cancer was in September 2008. I
refused to look at my stoma after having a colostomy. It took me several months to accept it. after all it is part of me. Mine is permanent. You will have a second chance reversal. Try not to be so hard on yourself. I am 4 1/2
years cancer free and thankful for every minute that I'm still here. Good luck to you.
07-20-2014, 02:42 PM   #30
Tricky Dicky
 
Join Date: Jul 2014
Location: Brighton, United Kingdom
It did help me significantly. Sounds like you are doing a bit better already. Good deal.
The theiry siunds good but cutting back is proving hard. It's ok some days, but today is so hot, I've been for a bike ride and a run so have been drinking quite a bit. Will try sgain tomorrow ehich should ge easier as I'm at the hospital for half the day, lying down while on the dialysis machine.
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