Stoma pain

Hi  

Do you have a colostomy or ileostomy-sorry, I don’t recall?  I have never taken Immodium, but do try to control my level of output by diet with my colostomy-dry crackers, marshmallows, porridge, jelly babies are some of the things I would try as I’m not keen taking any medication for this.

Sarah xx

Hi Sarah - ileostomy, due to a very aggressive cancer tumour. Not only was my large bowel taken out, some of the smaller bowel too. I was told that the cancer was taken away, but, could come back.

Hi  

Sorry, I just noticed on another post you have an ileostomy-my memory is not what it used to be these days! 

Yes, it’s always a concern for anyone that’s been through a cancer diagnosis that it might come back. I chose to have my rectum removed although there was no cancer there to try and minimise my risk of recurrence. As I was having my bladder out at the same time in a bigger surgery, I thought I may as well have two bags for the price of one. I’m glad I made that decision.

Did I read somewhere else that you are struggling with the stoma bag or acceptance of having a stoma? 

Sarah xx

You sound very brave Sarah, having to go through all that - makes me feel sort of pathetic! Regarding the stoma bag, it drags all the time causing me discomfort, so I empty it very quickly to relieve that. I wonder how people with a stoma can go walking in the hills etc. - how do they manage to change their bags?

fatz x

Please don’t think you’re ever pathetic  -it’s a big deal living with any stoma. I don’t go walking in hills but I have emptied or rather changed my bag in some difficult places! 

I don’t like the feeling of the bag being at all heavy, and I don’t use a drainable bag, so I just change it each time it starts to fill. If I’m somewhere with no access to a loo-for example I have had to do this in a carpark once on a long journey-we park somewhere quiet and I cover up with a towel, whip the bag and contents into a disposable bag, clean up and put a fresh bag on. Probably takes me around 2 minutes in total. Then dispose of the bag just like a dog walker would dispose of a doggy poo bag.

Last week I needed to change at an airport but obviously it’s much easier somewhere like that, and I always use a disabled loo to have more space. I’ve also changed on a plane with less space than the average loo! 

Have you looked at using a stoma belt to see if that might be helpful for you to help with support and feeling more comfortable?

Sarah xx

WOW Sarah! I use bags which can be emptied. We are lucky in England  not having to pay for bags if you have a ileostomy. I was on YOU TUBE site re ileostomy etc. and in the USA they have to pay for them. One person said they washed their's out - OMG! We are lucky to have sites like this. Do only UK residents use this site? No, have not tried a belt.I'm having problems wearing my 'normal' clothes, as I lost so much weight.

fatz x

Anyone can use this site, even if they aren’t in the UK, but Macmillan can only advise on UK treatment protocols which may differ from those overseas. I have several friends in the States and they have to pay for all their stoma supplies unless they have insurance to cover the costs, but we are very lucky here to have all our stoma supplies provided for us. I can’t imagine how much it would cost me with two stomas and the extra “accessories” I need, especially with my urostomy! 

I used drainable bags for a while after my surgery when my output was very loose, but I wasn’t very keen on them-folding the end up etc made them feel more bulky for me. I moved to closed bags, and was able to choose a particularly small and very neat bag for my colostomy which feels barely noticeable and comes in a selection of colours-white, nude or black. I like to be able to change it quickly for a fresh one when required. My urostomy bag is regrettably not so dainty but obviously needs to be able to hold quite a lot of liquid as without a bladder to store urine, it goes constantly. It can end up feeling really heavy and dragging if I don’t empty it enough. 

I did lose 3.5 stone after my surgery, but that has long since stabilised. However, I found my stoma shape and size changed with my weight loss which led to some leaks. I tried a belt at one point, but it didn’t real suit me and I decided I didn’t really need it. 

Sarah xx

When my husband took me out of the hospital in a wheelchair - the lift was mirrored and I saw myself for the first time - OMG I looked like the walking dead ,skeleton - dark under eyes. First thing I did when I got home was crawl up the stairs and have a bath! Had trouble getting out of it though!

I'm still finding my way around this site - there is one room where people chat about  all sorts of things, but you can't reply.

It's been a pleasure chatting with you though and hope to chat again soon.

Not sure what you have planned for the rest of the weekend, but enjoy it and take care.

fatz x

You should be able to reply to any posts in any groups, although there are some groups which are very specific-like the carers only group, and incurable cancer group for patients only. If you want to let me know if there are any groups where you want to participate and haven’t been able to, please let me know and I’ll see if I can help. 

I’m around the community a lot in various groups, and always happy to chat. It can take a bit of getting used to how to navigate through everything when you first join up, but you’ll soon get the hang of it and just shout out if you need a hand.

Enjoy the rest of your weekend-I’m try to do some decluttering but not getting on very fast!

Sarah xx

I don't pay for my stoma bags and I'm in the USA. I imagine the stuff you saw on YouTube were from people who either didn't have insurance or had very substandard insurance.  These days people should be able to get decent insurance that covers bags but not everyone does.

I do envy the automatic coverage offered in the UK (and other places). Healthcare should be a basic human right and not left to chance. I would not have survived without having good insurance