Not getting on with ileostomy

Hi

You are perfectly correct I do get all my prescription items ""free"" not only because I have a permanent stoma but because I have reached (well over) the age where I get everything ""free""

I don't place anything under my stoma it's just something I've never thought about doing but I suppose it depends on the position of it.

You don't need a lot of paste just a little bead around the stoma where the base plate goes around..

It was the girls at Securicare who told me about the bed pads both disposable and washable.

Ask about them also not sure but I think they do other items like mattress covers.

I have an online account with them and order all my items using it and they do the rest and it has worked okay for the last 6 months that is except when the GP surgery claim they've not got the request but I also can check online if they've issued it and can get Securicare on the case quicker.

Link for 

Convatec me+ enrollment form

I would just mention if you go onto precut flanges make sure you have a supply of uncut ones in case you have a change in size, leaks happen because the hole is too small or too large.

I am always about if you need any other information.

Ian

Morning Mbun.

I used to sleep with a hand towel folded up and placed under my bag when I slept on my right - I felt a bit happier if it was supported. Once I bought one of the wraps (they look a bit like a boob tube for your bum but with a pocket inside for the bag to sit in!) then I felt a bit happier and ditched the towel. My ileostomy was a night bird and I used to wake up every 2 hours to check/empty the bag - I managed to do it with half an eye open so was able to get back to sleep but one night I went 4 hours and that was a precarious journey to the bathroom.

Hopefully with the support of Ian and your stoma nurse things will settle down and you’ll gain a bit more confidence and trust in your bag. 

Take care

Karen x

Does anybody have information here on buying wraps if you are living in the United States? I have a colostomy and have order from colostomysecrets but now getting that reversed and have to have an ileostomy for a couple of months or more while that heals. I don't have the surgery until April. But I'm going to be wanting a wrap so the bag won't be touching my skin. And I want it not to look too awful if you know what I'm getting at. Something discreet and that looks decent. My fiance and I live together most of the time and he's been an angel during these past nine months with my colostomy. But I have a couple pretty wraps. Is my ileostomy just going to be more uncomfortable and more problematic?

Hi 

Welcome to UK site.

I'm unsure exactly what you asking about, but would think that any wraps that you are using with your colostomy will do the job just as well with your new ileostomy and I take it you're talking about those special moments!

I assume that when you say colostomy secrets you are referring to  https://www.ostomysecrets.com/women

As the supplier of your wraps 

As far as I know in the US you have a greater choice of wraps than the ladies have here in the UK but you needn't have to go for wraps which can be expensive you could look for some nice scarfes that you could tie round your waist.

Having an ileostomy shouldn't be any more problematic that your colostomy except the output could be more liquid and less formed than your colostomy and your bags will now be drainable and you shouldn't find it any more uncomfortable that your colostomy.

Depending on the type of surgery you have, incisor or keyhole, the only problem you may have is if you have any scars near to your stoma that could effect the adhesion of the pouch, but your Wound, Ostomy and Continence Nurse (WOCN) should be able to sort that out for you.

I see that you have been very active in other parts of this group but if I can be of any more help please contact me and I will try to help but obviously my knowledge of the US way of doing things is a bit scarce although I did pick up a lot when I was a member of Team Inspire a few years ago.

Ian 

I am grateful for the quick response. Thank you so very much. I will stay in touch. We were disappointed because I believed there would be a reversal and that's it but because it's complicated, I have to have an ileostomy until the reconnection heels and there is some scar tissue and they will do more as a complete CT scan with Magnetic contrast. We will know more and the extent. Thank you

Hi @tehc and a warm welcome from me too.

Youve has some great advice from Ian aka and if you have any issues with your Ileostomy then he’s man to get in touch with.

I had a wrap from Ostomy Secrets that I wore to bed while I had my ileostomy and mine had an inside pocket on both the left and right so if yours is the same it will just be a case of popping your bag in the other side. During the day I wore big Bridget Jones knickers and a little strappy top tucked into whatever I was wearing so cover any gap if I stretched up or anything.

Ive not had a colostomy but, as Ian says, an Ileostomy tends to have a runnier output and you will empty the contents out of the bottom of the bag when necessary, fasten it back up and then carry on only changing the bag every other day.

Hope the op goes well and let us know how you’re getting on

Take care

Karen x

I've found this discussion very useful, thank you Bodach and Karen.

I'm about 13 weeks post ileostomy and been on chemo for about 9 weeks. I have pretty high output which I was just getting used to managing until change of chemo two weeks ago due to progression. I'm now on Eribulin, 2nd dose was day before yesterday and seems to be following last week's pattern - very thick output for 2 days followed by extremely loose, watery output for 3 days....... I'm 14mg loperamide 4 times a day, last week I reduced to 12mg when it went thick and increased fluid and fruit, I don't know if I overdid the adjustment or it was the drugs that made it go so loose. I upped to 16mg when loose and ate more carbs but it only changed on Saturday which might have been my management or the chemo! It's so unpredictable.

I've had my share of leaks and use the bed pads as you suggested Ian, didn't know I could get them on prescription, I'm with Fittleworth via my stoma nurse.

Thanks for the links on underwear, again I didn't know this was available on prescription. I do have an appointment with a support nurse next week to measure me for a belt as I do lots of sport. I'll ask her for more info too.

Also reminder about food is always useful. I have read conflicting advice on  porridge and dairy. I guess it's trial and error, with the added complication of my change of chemo.

All the best

Dawn

Hi Dawn

Glad you found my links helpful if you need any more help just give me a shout.

Support underwear can I say make sure you get your full annual allowance and find the best for you, as you probably realise that there are many different types available and some are more suited for active people unfortunately as this moment I am lying in my local hospital's RESUS unit with doctors carrying out test after test and I can't access my notes but as soon as I am moved into a ward I'll send you another message with some more details

Would you believe that I've just given a crash course on Stoma management! (and she's looking after me!!!!!!)

Will be back soon.

Ian

Apologies for any typos......,.....,.

Hi Dawn 

You might be interested in this

www.sashstomabelts.com

The owner of the company has a stoma as you most of his work force and understand the problems we all have.

They make items to order and you can get them on GP prescription.

Ian

Thank you Ian. I do hope you're ok and out of hospital soon