Managing Ileostomy Supplies: Challenges and Solutions

Hi all

I have an ileostomy which I've had for almost 2 years now. While I know that the stoma nurses say that a porridge texture is best, it's very rare that I manage to get this texture.

I eat anything I like and do not have any issues. On the odd occasion I can get the texture right, usually if I've eaten potato or banana, or if I haven't had any fluids. The majority of the time my output is very liquidy, which is pretty normal for most with an ileostomy.

I've never taken medication such as loperamide (nor do I want to). I have seen online that people put a gel sachet into their pouch and it solves the problem.

My problem is - whenever I ask my supplier (Coloplast Charter) for advice, they always have to get a clinician to call me and try to advise me otherwise.

Am I not free to try these products which they have on their website without being given the Spanish Inquisition and then try to deter me? I understand that the GPs try to keep costs down, but if these things are available to make our lives simpler, then we should be able to use them.

My stoma nurse discharged me from her care after 12 months as she was happy with me coping on my own, so I would need to be re-referred by my GP if I needed to speak to her. It all seems like too much faffing about.

Two months ago I requested a support belt on my prescription order and immediately Coloplast said I could not have one, as I needed to be fitted first. I explained that I only want a belt to give me some support when doing things like gardening (times when I need to lift or strain). They asked me to contact Respond.uk - who very kindly sent me a tape measure and explained exactly where to measure. I emailed them the measurements and one of their team recommended a belt. I gave that model reference to Coloplast (explaining it was recommended by Respond.uk) and they then requested the prescription from my GP.

It just seems so awkward to be able to get hold of these things. We are advised to use them, but quizzed on why we want them.

Does anyone else have any issues trying to get hold of supplies? The hospital recommended Coloplast Charter to me, but I'm wondering if I should change suppliers. Sometimes I place an order and a week later my GP has still not approved my prescription, but Coloplast does not chase it up. I have been waiting up to 3 weeks sometimes for my order and I have to contact Coloplast and ask them to resend the prescription to the GP.

My nominated chemist for general medication is Morrisons and when I place an order with them, if they don't have a response from the GP within a couple of days, they are chasing it up quicksmart. I wish Coloplast Charter were the same.

Depending on your insurance, those extra things may not be covered. You can always buy them yourself though. 

Hello ET1.

I am with Coloplast Charter for my stoma supplies and have had very few problems. However, my other prescription medications come via the local  pharmacy (Lloyds) and there seems to be plenty of problems one way or another. It is difficult to tell where the problems lie but in my case I'M CONVINCED THAT IT IS WITH THE PHARMACY!  However, it sounds as if your problems might be with your GP surgery. I found that an appointment with the doctor on some other pretext offers an opportunity to explain the difficulties with the people in charge rather than receptionists. This usually sorts out the prescription management problems (and other stuff) because they don't like people mentioning these things as it is treated as a 'complaint'. 

I get 3 hernia belts per year on prescription from CUI international (www.cuiwear.com  0800 279 2050) and they do a whole range of belts as well as making some made-to-measure ones for me when I was experimenting with designs of my own. 

As for the stoma nurses, I rarely use them now but when I phone them they are only too happy to discuss problems and/or give me an appointment to discuss things with them face to face. I have never needed a GP rereferral to access them. 

Last week I received a text from my GP surgery to say that several stoma-related items are no longer available on prescription (according to NICE guidelines). Other stuff has been unavailable because of 'Brexit'! and some because the manufacturers have stopped producing it. 

I HOPE THIS INFORMATION IS HELPFUL TO YOU IN YOUR QUEST TO GET THE SERVICE YOU DESERVE !

Best wishes

Bill

Hi Et1 

I have had my ileostomy for 18m and the item you are enquiring about are called absorbagel satchets from colour plast. I too have watery output and use these daily. If you need anything else let me know xx 

 

 

we have to purcgase all supplies here in Nova Scotia.....as for watery output I am basically the same all depends on what I eat...Like you I eat away and just dump away etc as all food breaks down and passes different in us all....Hope you get ur velt I use Coloplast here for free samples and my orders etc and they have been awesome my pharmacist calls in what I want and orders 😀 

Words of Encouragement from Ostomy Advocates I Hollister