Retracted stoma

Hi Stopfordian73 

I’m sorry you didn’t receive a reply when you made your post and hope you don’t mind me responding although my situation isn’t quite the same. 

I have an end colostomy and a urostomy, and neither stoma comes out beyond skin level, so I do use a convex bag on my urostomy. 

I notice you mentioned creases around your stoma so I wondered if you were using any special product to fill these in before attaching your bag? I mention this because I had 2 creases in the skin round my stoma and had issues like you describe in the months after my surgery. You can get stoma paste to fill them in (which I didn’t personally get along with) and also stoma gel which I found to be very good, made by a company called Trio Healthcare. 

This comes in a little tube and you put it in the creases when you change the bag-I found it stopped my problems with leaking and sore skin. I also use flange extenders for a better seal, but no longer need to use the barrier rings. 

Do you have a stoma nurse you can contact for advice? It may be that a change of bag type might help-for example there are ones which are hypoallergenic and ones with manuka honey which can be soothing. Your stoma supply company should also have nurses you can contact to recommend things which may help, and you can request free sample products from the manufacturers to try out.

I hope you can find a solution-I’ve found it difficult to be in touch with others who have a flush to the skin or retracted stoma as it doesn’t seem so common. 

Sarah xx

Hi Sarah

Thanks for getting back to me.

I do have a stoma nurse that was assigned to me after my operation but she often ignores my emails.

I've tried cohesive paste as well as a stoma adhesive but both are nightmare when i leak trying to get them off my skin which make the irritation worse.

At the moment i have to put a convex barrier ring on the convex bag and then a tre seal but they just feel so awkward. i can go 2 weeks without leaking and then I'm leaking 1 - 2 times a day.

I'm seeing the stoma nurse at Manchester Royal on Thursday to see what they can suggest but I'm not very hopeful.

Chris.

Hi Stopfordian73 

I definitely didn’t like the paste for my creases and found it messy and unhelpful but the gel was much easier to work with. I’m sorry that your stoma nurse doesn’t get back to you-I found the nurses in hospital not much use, but the one from my stoma supply company who worked in the community and visited me regularly was a mine of useful advice and tips.

For my irritated skin I put some calomine lotion on a cotton wool pad and wiped it on the skin all round the stoma and gently dried off with the hairdryer so it didn’t affect the bag sticking. 

I hope you will get some help from the stoma nurse this week, and some good advice that works for you. 

Sarah xx

The stoma nurses at my local hospital are good but its a different hospital on thursday. Where i live we have to go through a prescription service run by NHS Stockport so i have no contact with any stoma supplies companies.

I've been using a Brava barrier cream and Orabase paste for the bleeding skin around the stoma.

I had a colostomy in 2014/15 and that was an outy so far easier to manage.

Just curious but how long does it take for your supplies to get delivered from when you ordered them?

I also now have to go through a prescription supply service which I was recently transferred to by my gp surgery, rather than contacting my supplier direct as in the past. My supplies typically come within a few days, but they also have a nurse service available for advice, and can provide an annual review/check up which I haven’t used yet. When I phone for my prescription to be made, they always ask how I am and if I’m experiencing any issues. 

However, you can still contact companies like Salts, Hollister, Trio Healthcare etc who produce the products directly yourself to request free samples. You can find them online and usually it’s just a matter of filling in a form online. I’ve done this many times and received lots of different samples to try out. I found it took almost a year after surgery to find the products which suit me best, after a lot of trial and error!

Sarah xx

I ordered my supplies last Monday and haven't received them yet, last month it was 2 weeks but then again its my stoma nurse who does the ordering 

i think this time I'm having a reaction to the bags adhesive.

I’ve never had a stoma nurse order my supplies-even when I was just out of surgery so I’ve always felt in control of things myself. I hope they’ve been ordered for you- I know how stressful it is to feel you are running low. Is there a reason your nurse does it rather than yourself? Even when I was transferred onto this new prescription service it’s up to me to do my own ordering.

Sarah xx

I have to phone up and the wait is usually 30 minutes which is difficult as i'm at work so i was given the choice of emailing my orders to the prescription service. My stoma nurse then picks up the order so i never know which company is sending them. At first i was using coloplast charter and they gave you notifications when the order was going to be delivered.

Last month i ordered on the 10th and the stoma nurse replied to say they were ordered, when the order was finally delivered the order date on the packing note was the 16th.

Gosh-that seems quite an unnecessarily complicated process. I phone the prescription service, they send the prescription to the GP and then my supply company, which is Respond, sends the supplies to me once the prescription has been signed electronically. I used to phone Respond direct to order,  and the change to the prescription management service hasn’t changed the fact that they are my supplier. 

Then I get a text on the delivery date from DPD with a hour’s slot telling me when the box will arrive that day. Very straightforward.

Sarah xx

I use Respond too, the only difference being that Respond themselves phone me to ask what I need.  This is a regular once a month phone call from them, with my order being delivered within 2 weeks (by DPD).  They've also told me that, should I run out of anything, I can get an emergency supply sent out immediately (never needed to do it, but handy to know).  In my experience it seems like a good system and a reliable company.