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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.
 
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.
 
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.
 

nogutsnoglory

Moderator
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.
 
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.
 
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
 

DJW

Forum Monitor
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.
 
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.
 
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.
 

nogutsnoglory

Moderator
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?
 
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.
 
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.
 
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.
 

DJW

Forum Monitor
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.
 
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.
 
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.
 
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.
 
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.
 
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
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
Had my worst blow-out last night. I knew it was going to happen sometime. Turned the light out at 11:45 and emptied the bag, set the alarm as normal for 02:00 to check the bag and probably empty it, but at just before 1 I woke up and immediately knew something was wrong. Lifting the bedclothes revealed some of the damage, but I was pretty much covered in ... well ... you know what.

My haste to act and my drowsy state possibly made it worse, but basically it took over an hour to shower and clean the bedroom, bathroom, change the bedding, put a new bag on etc. hope the matress isn't ruined beyond recovery.

Don't know why the bag filled and blew so quickly, but it reinforces the problem I've had from the beginning (and documented on here), how do you know if you're asleep that the bag is full. I've still not got an answer to that one. We can put a man on the moon but can't invent a simple pressure sensor for this.

Well, I knew it was going to happen sometime, and now I know that it can't be much worse than last night. May happen again, who knows.
 
I know I had the most frustrating time with my bag for the first three to four months of having my bag. My night time blowouts seemed to coincide with high fibre foods in the evening, and it would lead to 'pancaking' at the top of the bag and seep out around my flange. Ugh. It got so bad that I would just have a spare set of linens, pyjamas and bag change near my bed. I also put a soft towel under me to try to minimize the damage to the linens and mattress.

A couple of other things I started doing: started using lubricant in my bag to help the output slide downwards. I ate my higher fibre meals during the day, ate an early dinner (around 6pm), had a small snack around 9, and would go to bed around 11 or 11:30. I tried to make sure my snack wouldn't create a overly watery or overly thick output (so no veggies and no potato chips...I found that cookies were 'just right'!).

At about the four month mark, things began to shift dramatically and I wasn't so despairing and frustrated. The output regulated itself and I now eat just about anything.

I now have blowouts, but it's because of the pyoderma at my stoma and not anything I'm doing or not doing.

Hope this was just a 'one-off' for you...

Cheers,

Kismet
 
@glum chump - I knew it was going to happen sometime, but still frustrating. I'm 8 weeks post-op so things have not settled down yet. The stoma is temp, but until an appointment with my gastro surgeonthis week, I don't know how long "temp" will be.

Don't really know what was different about fri night, I had a Chinese take out, not the best thing I know, so I ate a large amount in a short time. I was surprised how much mess there was before it woke me up.

It does feel a little as if I'm somehow different, most people say they get up once per night to empty and few blow out problems. I on the other hand find I have to set my alarm to wake every 2 hours to check the bag and empty if necessary. This had worked quite well up until now.

Frustrating and messy but not the end of the world.
 
(I'm sorry, I haven't read this whole thread yet, so apologies if I'm repeating things.)

One quick suggestion first: have you thought about getting a mattress protector?

I've learned a lot about stoma output lately, as I've just got out of weeks in hospital, where, as part of doctors' efforts to determine the cause of my weight loss,they were weighing all my stoma output, as well as recording everything I ate and drank, and weighing all my pee. I was eating and drinking a lot - I was having to manage a very high-calorie diet in an attempt to gain weight, and I was drinking quite a bit too, about two and a half litres a day - but my stoma still didn't need emptying more than a couple of times a day, almost always in the evening, which was the same as I was doing prior to my hospital stay, when I was drinking about the same, but eating a lot less. I've also found that the time I eat doesn't seem to alter the times my stoma is active. So I'm not sure about the link between amounts eaten and drunk and stoma output. Perhaps I'm an exception, but I would say don't allow yourself to become dehydrated through limiting fluid intake.

I do know that fibrous foods can in some people make output more watery. There are some foods which are supposed to help slow output down and thicken it - smooth peanut butter, marshmallows, jelly babies (something about the pectin in them!) and some other things. Once I've checked this thread more thoroughly to make sure I'm not just repeating things others have said, I'll dig out my diet guide and see what the other items supposed to thicken output are.

Another thing that happened when I was in hospital was that I did experience uncontrolable stoma output for the first time. It was caused by having NG feed, which is known to cause stomach upset, and for some reason my digestive system did not tolerate it well at all! So I had really watery output, and although I still didn't need to empty the bag all that often, for the first time I was getting leaks, especially at night.

The stoma nurses had a few suggestions - one was Derma-guard, which is an adhesive wipe to keep the bag stuck to the skin. This was actually really effective for me. Another was an extra big bag to use at night, which the output can drain into like a catheter. I was also prescribed a high dose of loperamide by the doctors, which did help slow things down. Luckily I was taken off the NG feed pretty quickly, as it was upsetting my stomach so badly I couldn't absorb all the calories it was supposed to be providing me with.

Final suggestion: before I had the ileostomy, I was taking Lomotil (co-phenotrope) in addition to loperamide to control diarrhoea. I found the Lomotil to be the stronger of the two, and as it has very few side effects, I could take a very high dose, and use the two together (along with codeine as well). But the strongest anti-diarrhoea medication I've ever had is Amitriptyline. I didn't take it as an anti-diarrhoea med, I originally took it to help me sleep, but it is also an anti-depressant and can help with stomach pain. I started taking it before I had the stoma, and it was the first thing to completely constipate me, and, after years of diarrhoea, I found myself having to take laxatives. If you want something to slow things down, it's definitely the strongest thing I've ever taken.

I really hope something I've said will help. But definitely keep asking your stoma nurses and checking out ostomy supply websites for other products to try. I know there were also many other adhesives available, as well as products which can be placed in the bag itself to absorb liquid. There should be something out there which can help you.
 
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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.
Just to add - I change my bag everyday, just because I like to make sure the skin's clean. I'd have no problem changing the bag twice a day. In the UK, with a stoma you should be getting free prescriptions (though possibly not if your stoma's temporary?), so it shouldn't cost you to change frequently.

Some other foods that may help: white rice, white bread, cheese, eggs, pasta and bananas.
 
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Just to add - I change my bag everyday, just because I like to make sure the skin's clean. I'd have no problem changing the bag twice a day. In the UK, with a stoma you should be getting free prescriptions (though possibly not if your stoma's temporary?), so it shouldn't cost you to change frequently.
I think we've discussed tnis before, but I have no problems getting supplies, ?i have boxes of bags and loads of tubes of adhesive.

I find that if I change more than ever two days, then my skin gets very sore, every other day suits me fine, except it means I don't shower every day as I would like, but I can live with that.

I empty my bags about 10 times a day, but that doesn't mean it's full 10 times a day, I often empty when it's just a third full, just so it's more confortable. I roughly measure my output volume and it is within what my stoma nurse says it should be.

I would say all is well, except for the ongoing problem of knowing when the bag is full when I'm asleep. That is by far my biggest issue.
 
Sorry - you're right, I do remember we discussed this before now!

What I don't understand is that if your output is not excessive, and isn't overly watery, why your bag would be overflowing at night? I'd have thought that a bag should be able to last overnight if your output is normal?

I have read that usually output is less at night than during the day, just as, usually, people without stomas do not need to go to the toilet during the night, and it's only when something is wrong with the digestive system that this changes. (Which is why "nocturnal diarrhoea" is a symptom that doctors sometimes use to distinguish between IBS and more serious digestive conditions.) So perhaps you should ask doctors for more investigation?

But emptying ten times a day sounds a lot to me, even if the bags aren't full. I don't wait for mine to be completely full either - I empty when they're about half to three quarters full, and still only empty maybe twice in the evening, and then first thing in the morning I empty another maybe half a bag that came during the night.

I do hope things settle down for you soon. :hug:
 
Maybe it's because it's still only a few weeks old and not settled down yet, I think I'm up to 8 weeks post-op now. My output is now mostly firm with the meds, but quite a lot of it, especially, it seems, in the evening and first part if the night.

Mornings seem to be quiet, that's the only time I will shower, as showering when it's active is awful - done it twice, won't do it again by choice.

I really don't know what happened Fri night. The bag filled and blew in an hour.

I do log all my bag activity, i.e. All times that I empty it, how firm it is etc. and there doesn't seem to be a pattern as yet. Yesterday I emptied 14 times, but Sun was only 6, and no obvious reason why they should be different. I am eating a lot after 8 months of not eating and losing so much weight, so that doesn't help the stoma (i am enjoying it though after so long with no food).

I always come back to one thing, I can manage all of this except knowing that the bag is full when I'm asleep - even if I onlgy needed to empty once a night this is still the problem.
 
My stoma is very active between 4 and 6 a.m., and produces amazing amounts of gas overnight. Gas is not an issue during the day, but I wake up many nights because my bag is full of air and close to blowing the seal. It's rather interesting.
 
How is the output through the night?
Output is firm but frequent and unpredictable until about 3 or 4 am, then quiet til late morning. The danger period is really from sbout 11 to about 3, and
I have to set alarms just in case. Don't want another blowout like friday.
 
Went in today to meet with my gastro surgeon for the first time since my op 9 weeks ago. Was a very quick meeting, basically he's happy all is now well and I can go on the waiting list for reversal of my stoma.

The slightly bad news was that the waiting list is currently about 18 weeks - which seems a long time. Went to see my stoma nurse afterwards and she said to wait a couple of weeks until they actually have added me to a list, then we can see about getting me moved up.

Light at the end of my stoma tunnel. - although it does mean another op.
 
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