Not getting on with ileostomy

Hi

Hadn't heard from you for a while and had thought you must be getting on well and it makes me sorry to hear about your problems.

You are perfectly correct the GPs just don't understand the problems we have and this is why I always suggest that we should all keep in touch with our stoma care nurses, they are the ones in the know and I would suggest, if you have not already done so, contact her for a full examination she can then contact your GP.

With the Immodium in liquid form has your GP prescribed you with a higher dose than that shown on the bottle, you can take quite a bit more.

I know you're an old hand at this by are you still keeping to eat smaller often principle and watching and noting the high fibre foods you eat and I am sure you are. 

Having leaks is often a problem especially the night time ones and maybe later we can have a look at this, it would help if I knew all the products you use in your stoma management.

Don't give up yet together we'll find the solution but we can't have you go through this for the next 7 months.

Hernia, are you wearing any support products, if not now is the time to get some on prescription, they are available from many sources, I have details if you need any information.

I'll have a think about how we can go about getting a solution for you and if you let me know everything you use perhaps there is something we could add.

Speak later.

Ian

Permanent ileostomy just replaced due to hernia.

Hi Ian, 

I do have 3 hernia prevention belts, but I don't like wearing them, as when I have output it's so close to my skin, it feels horrible. You know, really warm and then I panic and think I've leaked. 

I had no problem wearing with the colostomy as the output was thick like normal stool, most of the time. Plus I didn't have my bowel poking out of my body. 

To be honest, I'm so squeamish about my stoma, fearing I'm going to push it into my body by wearing the belt. 

I'm in men's tracksuit bottoms everyday, this gets me down, but they're the only thing that's comfortable to wear. 

I'm using the drainable pouches and Salt aloe Vera rings. I change my bag every 2-3 days and I have to pick my moment to change as the output is pretty much 24/7. Cutting out the pouches are awkward as my stoma isn't round. 

I've had days where I've had to sit on the toilet for half an hour as I just can't get the pouch on, due to the stoma constantly letting out runny stool. Which then leaves me sore. It's so frustrating when this happens. 

I've just started to use LBF barrier film spray and this helped with the soreness last night. 

I always use the stoma powder, I feel protected when I use it, and I always make sure I've blown and wiped away any loose powder. 

I tried the convex pouches but I leaked more with them and I don't get on with the belt as it always rides up my back, and makes the pouch stretch making the whole I cut wider at the sides. 

I had mince a couple of weeks ago and soon learnt I cannot eat it, as you can't chew mince into a soft pulp, so it came out as it went in and made me sore and it felt very uncomfortable. I've also learnt I cannot eat bananas as they give me terrible cramps. I was only eating them as I learnt they're good for stomach ulcers. 

I do have natural live yogurt and honey for my stomach ulcer. 

I can't drink alcohol, my stoma doesn't like it. 

I am in contact with my stoma nurse, and she is helpful. But I just don't think anyone gets how I feel about it. 

Thank you for your help, Ian.  

Hi Mbun

I shall leave you in Ians capable hands regarding your stoma issues but would just like to suggest a couple of things - 

My stoma was a bit floppy so I always struggled getting the bag up close and tight so found the Salts Aloe Vera rings a big help. I used to go see the nurse every couple of weeks in the early days and ask her to measure me and cut a couple of bags. I then used the plastic peel off bit that she’d cut as my template for future bags. Once your stoma has stopped changing in size then you can get your bags pre-cut - some people like this, others don’t but it’s an option to consider.

My only leak was when the nurse used stoma powder on me and although she thoroughly brushed it off I still had a leak - the large glass of fresh orange juice that I had may also have contributed.

Now - ladies underwear! The warm feeling against your skin when outputting is not nice I agree. I was going to recommend a wrap from Ostomysecrets but they no longer seem to be trading which is a shame. Another option is knickers from Vanillablush which have a pocket inside for your bag to sit in so it’s not against your skin. I think you can get 6 pairs on the nhs or you may want to treat yourself if you fancy something a bit less basic. 

http://www.vblush.com/productdisplay/ladies-black-nhs-ostomy-underwear

Hope this helps

Take care

Karen x

Thanks for your reply I have put the following together in the hope that might be of interest to you and of course anyone else who will read this. I do appreciate that you will know much of the information.

independence products sample request

I was introduced to this product by hospital stoma nurse and I am amazed how sticky it makes my skin prior to attaching pouch and helps to protect my skin as it's also a barrier film.

Independence Fusion
Product Code: BW2

I use these to really extend my flange and find them very good and sticky. I carry a few around with me when I out and use as patch up job if I feel a leak about to start. Really do rate them but I am really a belt and braces person when it comes to flange extenders.

AcuBond Strips
Product Code: SB2

QUESTION Do you apply paste around your stoma and any creases before applying pouch? You should always try and use an alcohol free one to avoid stinging.

I have a large dip where my belly button should be which I fill with a seal and paste and cover with an adhesive dressing plaster (10 cm X 10 cm square) and it seems to help stem leakage. All part of our well known trial and error principle.

Clothing for Ostomates (support and outdoor)

I don't know why stoma nurses keep pushing belts when there are so many other products available like underwear that also give support and confizz has varying degrees of support depending on time of day or night. Most are prescription items.

I've not worn proper trousers for 6 years now just jogging bottoms.

I am like you find that pouch belts pull too tight and cause problems.

I have a strange shaped stoma almost egg shaped which makes it difficult getting the flange in the right position 

This is a leaflet produced by Yeovil Hospital much of it will be old hat but maybe will also will be a gentle reminder especially the medication alternatives that you could show to your GP.

High output stoma management guide

I don't eat too late and hope I can get a good empty before bed by which I mean before I fall asleep

One of the little tricks I have adopted to help with night time leaks is to wrap a disposable bed pad round my front covering my pouch before going to bed and holding it in place with underwear, it doesn't stop the leaks but it does save the output spreading all over the bed and avoiding night time bed linen changes. The beds pads come complementary from my supplier.

Another little trick I've learned over the years is to get the supply company to request the monthly order direct from the GP and have the prescription sent directly to them. Depending on the supply company you can easily add new products to your order and in the case of my supply company they do it without questioning why I'm ordering, I know of at least one company that police requests and insist on stoma nurse approval, what rubbish.

Let's keep talking and get the problem under control.

Ian

By clicking on any of the green text above will open up new pages for you.

Thank you Karen, I'll speak to my doctor about getting this underwear on prescription, or do I have to ask the stoma nurse?

Also can pouches be pre-cut for ileostomy's? As my stoma isn't round.

Also my stoma isn't floppy, it just sticks out. My stoma nurse said it was flat but my surgeon said it isn't. 

Hi Ian, 

I didn't know you could get bed pads, I will look into this.

Also is it ok to try samples with another company and not use them for orders? I use securicare and with this I get the support of the hospital stoma nurses. If I changed to another company I would lose their support. I was told this by my stoma nurse as she works for securicare. 

My stoma is the shape of a rugby ball, I cut my bag length ways 35mm and width just under 30mm. This gives my stoma a little extra space for when it stretches during output. 

I don't use the paste, the last time I did I leaked. 

Hi Mbun

Yes the bags can be pre-cut for ileostomies once the stoma has settled down to its final size. The nurse measured mine and sent the template off to my provider and then every box I had delivered after that was already cut out for me.

Not sure about the prescription but maybe you could make an appointment with the nurse to discuss the pre-cut bags and see if she can do it? My doctors seem to be cutting back on what they deem as ‘un-necessary’ prescriptions - I agreed to change from Imodium dispersable to loperamide capsules as it was cheaper - but if your stoma nurse can issue prescriptions then she might be more sympathetic to your cause.

As Ian says your GP probably doesn’t know enough about stomas to be able to help - your stoma nurse is your best bet although Ian runs a close second! Not sure about losing your stoma nurse support if you changed providers - I thought the nurses were part of the NHS?

Karen x

Hi again

I use Securicare also and they supply me with disposable bed pads AND also washable bed pads just ask them.

My stoma care nurse is employed by Salts Medilink.

You can order samples from ANY manufacturer you want, if you don't continue to use their products they won't know, the only manufacturer that keeps checking up on my usage is Trio.

I like to believe if I apply a seal round my stoma as a neat fit if the flange hole is a bit big or my stoma changes size the seal and if course the paste helps. I use a paste from Convatec which had been recommended to me by my Salts stoma nurse..

I don't think it's a big secret on here but at one time I was using nearly all the supply companies to obtain my supplies and only settled on Securicare after my repair operation in the summer when the hospital stoma nurse asked who supplied me and the first name out of my mouth was Securicare and I am extremely happy with the service I receive maybe because I am looked after by one of the managers but all the girls know me and they are always very helpful and friendly as you've no doubt found.

Note to (Karen) thanks for the information about Ostomysecrets hang realised they had closed.

if you open up the page for above you will see a reference to Convatec and me+ this programme is worth joining as they have a lot of useful information.

Ian

Hi Karen, 

Thanks for your reply. It's good to know I can get my pouches pre-cut to size. 

I'm going to phone my stoma nurse on Monday to talk a few things through. I'm at the hospital next week for my next cycle of Chemo, so I'll get her to look at my stoma and see if she thinks I do have hernia developing. 

Hi Ian, 

I like securicare too, they're always helpful. I get my supplies on prescription, as I have a medical exemption certificate. 

I'm sure if you have a permanent stoma, you get them free on prescription. May be in wrong here? 

I will try the paste, to be honest I don't have experience with it. 

I'm definitely going to ask about the pads. 

Also I wanted to ask, do you sleep with a cushion under your belly? I find that my stoma needs a bit of support when I sleep on my right side. May be it's just me as I'm squeamish about my ileostomy. 

I can't find the conveta + me link, could you link it for me please. 

In feeling better today about it all, and it's all down to yours and Karen's support. Thank you.