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Bowel cancer treatment and side effects

HopsiFAP

Ileostomy bag questions

Hi Everyone,

I’ve had my ileostomy bag for some time now but due to my whipple operation it behaves slightly differently to before. This mostly means I have a very high output because I have what they call a wet stoma and I need to limit my normal fluid intake most days to help reduce the output.

I am in the middle of trying out convex bags due to my flat one piece beginning to leak more and more. I’m hoping that this will be the answer. We’ve also gone down a size as I think the 30mm bags were too big. So I’m trying out 25 mm bags instead now.

One question though is that I quite often wake up in the night with a balloon of a bag. Sometimes it’s just wind but other times it’s a lot of output that needs to be emptied. Does anyone have any tips on how to deal with this? Or to prevent it happening if possible?

I realise that certain foods will affect this but it’s difficult because I feel like some of the foods like mashed potato help bulk up my output. I also have recently been using orb ball bags to thicken up my output. Does anyone else use these ? I think they’re brilliant but sometimes struggle when putting extra ones in my bag throughout the day and pushing them well into my bag. Any tips?

Thanks so much
Clare

frankie

hi Clare, i have very high output empty more then 20 times a day opening and closing so much that my drainable bags are only lasting a day. have spent that past 18 months trying allsorts from medication too changing diet , the only thing i have noticed is if i don't eat after 6pm and stick to a low residue diet then i normally can go through the night with out needing to empty,and have a lot less ballooning i have fap too :)

HopsiFAP

Hi Frankie,

Thanks so much for getting back to me. Gosh poor you. With emptying that many times. Have you tried the orb crystal bags? My stoma nurses introduced me to them a few weeks ago and they’ve really helped lower the times I empty my bag in the day. When you say low residue diet what do you mean? I’ll tske a look on google too. Yes i definitely have to change both my bags once a day. Before my second operation I could leave my urostomy bag on for two days but these days due to the changes in my body and the bags sticking together they both come off.

This FAP isn’t the greatest is it?! I’m havig my thyroid taken out later in the year as I have a module they think will eventually turn malignant due to my FAP. I hope you are doing ok and have no further additional complications? :x::x:

frankie

Hi Clare,
not heard of the orb crystal bags will ask my stoma nurse about them, you have been through a lot, apart from the issue with your thyroid i hope things are ok Things seem to ok with me have 2 desmoid tumors just waiting on scan results consultant thinks that they have either grown or i have a hernia on top of one of them, been having a few problems with bladder since my hysterectomy going in next week for some tests not fap related .My latest upper scope was good don't need to repeat it till 2022 unless i start to have issues. My youngest has Fap too she is waiting on a date to go in for a total colectomy. The low residue diet is plain boring food, chicken, potates, white rice, white bread,fish,eggs, vegetables with no skin or seeds hope this helps :x::x:

HopsiFAP

Hi Frankie,

Thank you. Yes try them because they really help in limiting you having to empty your bag. Gosh you’ve been through so much too but that’s great news about your upper scopes being clear.

That’s tough for your youngest. How old is he/she’s? Where are you guys being treated? St Marks?
Yes I looked that up. Makes sense actually. Thanks for your help :x::x:

HopsiFAP

@frankie I’ve been thinking of you’re high output over the past few days. Do you try and limit what you drink? I know it sounds counter productive but the more I drink of normal fluids the more dehydrated I can become as it comes out of my ileostomy rather than urostomy. So I tend to aim for a litre of normal fluid.. mainly tea in my case! And then I drink a specially made drink called Glucodrate or make up st Marks drink to help reclaim my electrolytes. That makes a massive difference to loweing my ileostomy output :x::x:

frankie

sorry only just replying, we are both under St Marks, but i had my surgery local and my daughter is having her op local, then will go to S t marks for her 6 monthly scope, she will be 17 when hers is done. Have tried the st marks mix but cant drink it my gp said that he can no longer prescribe Glucodrate i have cut my fluid down only drink tea, fizzy coke if i feel a bit blocked but its not made any difference my surgeon has said that this is my new normal and as i have tried everything that they have suggested and there has been no change that its unlikely to change now. did you try the low residue diet? :x::x:

GD1962

Hi @HopsiFAP

Have you been advised about trying some loperamide to help reduce your output?

Hugs :x:

HopsiFAP

Hi @GD1962 Yes, sorry, I should have said. I do take lots of loperamide and obviously this is very helpful. It was just such a shock for me because I was beginning to adjust to my body after my pelvic exenteration and then I had to have the Whipple procedure in September. Because I don’t have a duodenum now, it means that I have even less of a bowel so I have what they call a wet stoma. I’m beginning to get a handle on it now with the use of loperamide and monitoring my fluid intake. I have a urostomy too so obviously need to drink lots and stay hydrated so it’s a fine balancing act. I’m getting there though :x::x:

HopsiFAP

No worries @frankie I forgot to tag you anyway. Oh I see. I thought you might be at St Marks. Yes I heard Glucodrate has been taken from the market ..such a shame ..back to st Marks I guess... I drink a little bit of OJ. But mostly tea and then st Marks..however I’ve discovered that if I use plenty of loperamide I can enjoy a night out and even a small G&T! Yes I’m kind of that anyway and also eating bigger meals at lunchtime. And a small dinner early. Definitely helps :x::x:

GD1962

Awww @HopiFap bless you love you're having such a hard time, my ileostomy played up after liver resection due to them puncturing my bowel and removing much of it. Has settled down again though.

Hugs and positive healing thoughts :x::x::x:

HopsiFAP

@GD1962 thank you so much. I’ve just read your bio. You’ve been through so much too. That’s amazing your on phased return to work. The Christie sounds like an amazing hospital ? Much like the Marsden? I’m glad your ileostomy has settled down. I feel like I’ve got so much more of an idea on how mine works now too. It was just such a shock at how much it’s habits had changed. However with the use of loperamide, salt rehydration fluids and otosorb bags and watching what I eat, I’ve reducing how many times I have to empty my bag per day. I’m also adjusting to new convex bags as my original bags were leaking. I keep having to remind myself it’s early days still! :x::x:

charleyb

Glad to hear you are doing well Clare @HopsiFAP :x::x::x::x:

HopsiFAP

@charleyb Thanks so much. How are you guys doing? I saw Mr Rasheed on Wednesday. He was really pleased with how well I looked. He’s ordering my follow up scans as it’s coming up to a year since his operation now. So will be slightly anxious after these but I guess that’s standard. I’m seeing Thyroid surgeon on Thursday so hopefully I’ll have more of an idea of my operation to remove that. :x::x: