Finding my stoma bag repulsive!

[Katyrah]

A quick background - 3 weeks ago I had my large intestine removed, an ileoanal pouch made and I now have a stoma bag for the next 12 weeks or so.

I am really struggling with it, it's making me wretch when I empty it, and I've discovered I can't eat fruit and veg because it gets blocked.

So I don't know if anyone on here has one; do you have any tips to stop me from wretching and hating it? I've lost over a stone in 2 weeks since the surgery and want to keep it off; any tips on how to do this when anything remotely healthy blocks my stoma and leaves me with a temperature and very ill!

Thanks for your help :)

[Bluestocking]

So sorry, no advice, but didn't want you to feel ignored. I had a colostomy bag for several months some years ago and it wasn't much fun but sounds like a walk in the park compared to what you're enduring. Do you have a stoma nurse you can talk to? Mine was really helpful and made the whole grisly business much easier. Good luck!

[Katyrah]

Hi! There's about 4 stoma nurses that I speak too, but everytime
I ring up they're dead clinical only really bothered if I can change the bag properly not about anything else really! Makes it difficult to talk to them (haha because asking lots of strangers on the Internet is better, but at least you don't have to look at my very embarrassed face!!!)

[piprabbit]

Can your nurses put you in touch with a local support group? It sounds like some of your questions could do with being talked through with somebody who has been there.

So sorry you are struggling at the moment.

[ThisIsANiceCage]

I've just found IA (the ileostomy and internal pouch support group) by googling. I don't know anything about them, but they seem to have forums. There are bound to be people there who know all too much about living with stoma bags.

Good luck with all this, and I hope the next op goes well too.

[ThingOne]

Hi Katyrah. I have a colostomy. Obviously it's easier to deal with than an ileostomy. Mine is permanent so I had to deal with it, or have a shit rest of my life but it still has its frustrations.

There are a couple of general ostomy forums where you can whinge to your heart's content about how to chew, and how to remember never to eat seeded bread, and find other people who are managing to get along. There's one run by volunteers called ostomyland (not sure of URL as it's a while since I've been there). It had a really good section called the ostomy lifestyle guide which I found very helpful while I was adjusting. There's also one which seems to be funded by Salts healthcare called something like CCC, but it you go to the Salts website I'm sure you can find it.

As for the smell while changing the bag, there are some easy things you can do. Firstly - and I am not being flip - you need to decide that you are not going to feel like wretching next time and that you absolutely can do it. I have an oil burner in the bathroom. My bags aren't always smelly (well, any more than a normal poo!) but if my tummy has been upset (often!) or I am on antibiotics if stinks. I have a stash of super cheap ikea tealights. I start burning it before I open the bag, and leave it for a while afterwards. You can also strike a match, which does burn off some of the smell - honestly! There are also a number of prescription sprays you can use. You spray them in the air before you remove your bag, and again afterwards.

As for the not being able to eat remotely healthily, you will have to look at the suggested diets on the sites we have told you about. It is hard, even with a colostomy, to eat a "proper" healthy diet so I do feel your pain. Look on the bright side - you can eat crisps :o. High calorie, nutritious foods you can probably manage include humous and avocados. Are you well enough to make your own bread? Then you could manage to make a decent white bread that won't make you feel so cheated.

I could go on but I won't unless you want more.

[RachelHRD]

Hi there

Sorry to hear you have been having a difficult time with your stoma. My DD (16 months) has a colostomy so I'm very familiar with bag changing and problems with leakage etc.

You might find it easier and less unpleasant to change the bag rather than emptying it. I have found with DD since weaning that the consistency of her output makes leakages under the seal more common and at the moment I change her bag twice daily and I find that easier and less smelly than emptying it - and it also means I catch leaks before they get too bad and damage her skin.

For bag changing I make up the bag and then warm it under my armpit whilst I'm taking the old bag off which helps the seal to stick better. I gently prise the old bag off around the edges and then remove it (I don't use any sprays as they made it more uncomfortable for her). I then use fragrance free baby wipes to clean the area and remove any excess adhesive and then a folded square of Kitchen towel to dry it thoroughly. I have also found OstoSeal powder good when her skin has been sore. I then put on the new bag and hold my hand over the seal area for a minute or so to warm the seal to stick better.

The best bags I have found for DD are Dansac Nova EasiFold drainable ones as they have a filter to disperse wind and are easy to drain if you need to.

Food wise DD has a varied diet and does eat a lot of fruit and her output varies and of course she's not great at chewing things thoroughly which doesn't help!! I'd recommend asking your stoma nurse about diet recommendations - perhaps try fruit smoothies to see if the consistency helps?

Rach

[Katyrah]

Thanks so much for your help everyone :-)!

I like the idea of the oil burner in the bathroom! Might have to try that, as well as look into the website addresses so thanks :-).

I didn't think of fruit smoothies and such like, I'll have to try them! Being so new after the op I hate it when it gets blocked up (let's just say I will never be eating onions and sweetcorn again!)

It's nice to hear you manage to live with yours Thing, I'm quite concerned that the pouch will fail and I'll have to live with it forever so it's good to know you can get used to it! Suppose I should be grateful that I'm able to eat ice cream and cheese and lose weight!

Rachel, I hope your DD is ok, here's me moaning about mine it must be very difficult for you and your DD with her being so young! I only change mine every 2 days, my stoma nurse said id get really sore skin otherwise but if it doesn't seem to be affecting your DD (who I'm assuming, at 16mo has much more sensitive skin than mine!) I might try every day, as it's always the second day when the stomas 'been in use' that I find it turns my stomah!

[PUMBA]

Hi my little girl is nine and has a colostomy called flo !! We get minimal output from flo but still change her daily as she gets really worried about the smell !! I definitely reccommend looking up ostomyland as it's full of great people with some awesome advice !! They really did make a huge difference to us in the early days !! x

[RunnerHasbeen]

It calms down after a wee while but it is worth getting used to cutting out certain foods now because you will be sensitive and inflamed after the pouch starts working and you can get blockages then, which is more scary (8 years on and I still can't face a beansprout). I didn't get my normal diet back for about 2 years, but I was scared of blockages by then and took things slowly, now I can eat anything but I have got in the habit of chewing things carefully and eating more slowly. I don't think you should even be thinking about your weight just now - once you get your health back you are in a much better position to deal with that, if you need to.

It is the peel in things like peppers that causes problems, so they can be peeled. Good fruits are raspberries, bananas or even peeled apples. If things are moving too fast, it helps to eat squares of jelly and marshmallows. If you are having gas problems, with the bag inflating, you can try taking charcoal tablets which can also help with odour. White carbs are better just now, so you have to stop thinking of things as generally healthy - right now brown bread and leafy green veg are bad for you and marshmallows and white bread are good!

As for changing it, just try to think of it as practice for nappies. I did it first thing in the morning before I had eaten anything, in a very much grin and bear it way. I couldn't stand dreading it for the whole day. Once you get into the routine of it, you will know when the output is likely to happen and you can shower without a bag - which helps you feel cleaner. It is much easier to put a new one on after a shower. You can get a thing called AbsorbaGel that goes into the bag to neutralise the odour and makes the contents more gel like, it is available on prescription (which is now free for you).

So sorry you are finding it hard, I did too, but it isn't for long, fingers crossed the next operation goes smoothly.

[Bluestocking]

Hi Katyrah, how are you feeling today? Great advice from Runner about timing your shower so you can have it without the bag - I used to do this and it definitely helped me feel I'd washed properly and was really clean, and it was easier putting a new bag on to freshly showered skin. I've also remembered the one plus of a colostomy bag - no smelly farts - they all go in the bag which has a charcoal filter to make sure no nasty niffs escape!
Good luck with the next op, I hope it all goes well.

[Katyrah]

I had a non bag shower! I was so scared of it hurting, but it actually didn't and because I did it in the morning nothing leaked out which was good! Also the onion I had at the weekend seems to have worked it's way through now (I am never eating onion again, or sweetcorn) so that's made me feel a lot less sick!

Thanks for all your advice, Im going to try some charcoal tablets because it gets really inflated in the night and I'm worried it may explode one night! As for my diet, I think you're right runner my weight isn't that important and I'm just steering clear of vegetables at the minute, it's only for the time being I suppose!

Seeing my stoma nurse tomorrow because apparently the stinking and itching that I'm experiencing isn't normal so hopefully that will get sorted, and who knows in the near future I may be able to wear something other than elasticated waist bands!

It really means a lot that you've all taken the time to respond to me, it's nice to feel like I'm not the only one in the world and that there are solutions to these little niggles!!

[Katyrah]

I meant stinging not stinking! Stupid I phone correct!

[RachelHRD]

Glad to hear your shower was OK - I love it when I can give DD a bag free bath. I wish I could give her more bag free time but it's difficult with a crawling baby and unpredictable stoma!!

You are doing really well considering you only had surgery 3 weeks ago! I was reading up about the pouch procedure last night and it is a lot to go through. With the inflating bag problem I found it much better when we got DD the bags with the charcoal filter and if you are changing them daily it is less of a problem. I do notice however when she has a slightly off tummy or has eaten loads of fruit (she's a fruit fiend!!) but it is much better than before.

My DD is doing really well thanks and she has had the stoma since she was 5 weeks old so it is normal for her and actually easier to cope with than stinky messy nappies!! I'm sure it must be much harder to deal with when you are older. I hope your pouch works out OK for you - DD is due a stoma reversal soon - she was born with imperforate anus (bowel not connected to an external opening) and has had her plumbing 'fixed' so next step is the reversal and then she can start using her new plumbing!

Hope the stoma nurse can help with the stinging and itching - might be your skin getting used to the adhesive and the poo around the stoma - OstoSeal is really good if it is sore. DD rarely has problems with hers unless she has had an undetected leak under the seal and then the OstoSeal has helped to clear it up.

Rach x

[Katyrah]

Thanks Rachel, everyone says I'm doing well and I'm up and about a lot quicker than most - but I'd rather push myself than spend all day in bed feeling sorry for myself! My DH and family draw the line at me returning to work yet though! Saw my nurse today, turns out I'm allergic to the adhesive on the bags I had (don't know the name) so I've been swapped to a softer seal one (again, I have no idea what it's called) it's only been a few hours and I can already tell the difference!!

Wow your DD has been through so much, bless her! That must of been a scary time for all of you, and I really hope the reversal and everything goes to plan for her! It really is amazing what they can do with surgery, I'm still in awe and what theyve actually done to me and I'm still walking and talking!

[ThingOne]

Sounds good news on the glue front.

I use a cavilon wipe on my skin under my bag and remove them with a spray called appeel. All on prescription. But mine are free for ever, for everything as mine is permanent.

[HonestyBox]

Sorry I can't be of help on the bag front but wanted to say that it might be worth asking in the food section for ideas on meals etc. I have a juicer (suitable for veg and fruit) and one good thing about it from your point of view is that it removes all the fibre from the material it juices and the vitamins and watery parts remain as the 'juice' so it is different from a blender if you see what I mean - I'm assuming that this would be good for your output situation and lessen the chances of a blockage.

[bellavita]

DH says to make sure you speak to someone who has had a pouch before your surgery, recovery can be difficult and is much easier if you understand what is going on. Your stoma nurse should be able to arrange it. If not, contact him (details here and he will arrange it.

[Katyrah]

Thanks bellavita - is recovery with the pouch difficult then? I was expecting it all to be plain sailing and me to be up and back to normal with it within a week or two! Will ask my stoma nurse tomorrow about talking to someone with a pouch!

My stoma keeps blocking, I swear I'm just giving up a food god knows what I'm doing wrong, another trip to the hospital tomorrow - yay.

Sorry for moaning, I'm honestly not this depressing normally!

[RachelHRD]

Don't apologise Katyrah you are doing brilliantly and are not moaning!

Glad to hear the adhesive change has helped the itching and stinging.

When I was reading up on your operation I came across this which is a diary of a 31 year old guy who had the operations after having ulcerative colitis for 7 years. Might help to give you an idea of what to expect?

[Katyrah]

Thanks for that link Rach, it was really useful - I can definatley relate to that man and he's had the same operation as me!

I know I should use Google more, but it scares me, I remember googling my UC symptoms and being told I had cancer and was going to die so I steer clear unless sites are recommended to me!

[bellavita]

Hi Katyrah, please don't apologise for moaning.

It isn't me that has the pouch, it's DH. He does huge amounts of volunteer work for the IA and is on all sorts of committees for them.

If you email the link, he will answer any queries (or he will tonight when he gets home from the day job!!)

[RachelHRD]

I think that's very wise advice Katyrah - don't Google!! I scared myself witless during my pregnancy with DD as we had lots of complications and now err on the side of caution as regards Google!

Hope you have a lovely weekend x

[saturdaygirl]

Hi, I know this is a bit late but have just found this thread.

I had an illeostomy in June and have the same problems as you had, find it repulsive, leaking and constant soreness and itching of the skin.

I am hopefully having a reversal at some point but at the moment feel very alone and isolated. (dont know anyone else with one)

Are you still around to maybe compare notes or anyone with any advice - please.

Thank you