Retracted stoma

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Hi all,  had an ileostomy in August 2022 but due to a desmoid tumour near my pelvis couldn’t bring out the stoma much so it’s around 2cm below skin level, I also have 3 creases which means I need to use a convex bag, a convex barrier ring and a tre seal. At the moment I’m using either a Dansac bag or Hollister but I have red irritated and itchy skin where the bag sticks. I also leak a lot, have a burning feeling with output as it doesn’t feel like the appliances are getting near the stoma. 
I use flange extenders and a belt with the bags. 
has anyone had the same problems?

  • Hi  This is exactly how it worked for me before my gp surgery moved to using the appliance management service. Unfortunately I was given no choice in the matter and could not opt out of this. 

    Respond used to phone me too, and their staff are very pleasant to deal with. DPD have also always been excellent. It was a system which worked very well for me and I have unfortunately had a few hiccups with the new system, but ultimately Respond and DPD are who supply and deliver so at least that’s a plus point! 

    Sarah xx


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  • Hi Sarah

    I don't think that my GP surgery come into the equation at all.  The admin seems to work entirely between Respond and my stoma nurse who, I think, signs off the prescription each month. I must admit that I've never questioned who does what in the procedure as it's always been very seamless and I always take the view that if it aint broke, don't try to fix it. I'm in Scotland so maybe a slightly different system from down south.  I agree that the Respond staff are lovely.  They always ask how things are and is my skin ok etc.  I always get the same DPD driver too and he's great as well. Win, win.

    Stopfordian73 - I'm sorry that I couldn't help with the retracted stoma question as it must be very demoralising for you but, hopefully, you'll get someone nicer who can help to get things sorted out for you at your next appointment.

    Take care x  

  • Thanks for support anyway Heart 

  • My gp surgery sign off the prescription, and that is still the case, although with this prescription management company involved, they will not allow me to request a higher number of an item than I have previously ordered at any point in the past which is a ludicrous rule in my opinion and never applied when I spoke to Respond direct. 

    For example, I want to be able to get 2 adhesive remover sprays on each order (Respond’s own brand)-after all I do manage 2 stomas, but because I’ve only ordered one on a previous order, I’m not allowed to have 2 now. Just madness.

    If I’ve had a month where I’ve had more usage of bags it stands to reason in my logical thought process that I will go through more adhesive remover spray but on my last order it was a “no”. 

    The system wasn’t broken for me either so I can only imagine there is some kind of financial saving somewhere which has forced the change. I still have the same nice DPD driver though! 

    Sarah xx


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  • The systems certainly seem different, sometimes less efficient and more than a little crazy.  Definitely finance driven. You're probably not allowed the extra spray to help pay the management company costs!  I'm not allowed adhesive remover spray on prescription at all but have to pay for that myself - and that's despite only using pouches, dry wipes and disposal bags.  Mind you, that's not a complaint, I'm sure that all the treatment and supplies I've had thus far have cost a fortune.  

  • What strange rules and regulations there are around the whole process…I don’t use dry wipes so said not to supply them, but was told they were good for cleaning glass doors! Sometimes I just despair at the illogical nature of it all..

    Sarah xx


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  • The prescription service in Stockport was set up so the prescriptions didn’t go to my gp. I can’t order anything without the authorisation of my stoma nurse so I don’t bother now. 7 days after ordering my supplies I still haven’t received them. I’m losing the will to live