Disintegrating slowly

Hi William and a very warm welcome to the online community

I'm very sorry to read that you feel that everything after surgery is getting worse. I can understand how frustrating that can be especially as your nurse says everything is okay.

I haven't any experience with this type of surgery myself but noticed that your post had gone unanswered. By replying to you it will 'bump' your post back to the top of the discussions list where it'll be more easily seen.

Hi WilliamD, 

Just read your post and I am so sorry to hear that you are having problems.  Do you have an ileostomy or a colonoscopy?

I am no expert at all but I have an Ileostomy and I have found that when i have had the same problems as you, the leakage and the itching,  it has been when my output has been thick and I have had what I believe is called pancaking.  I spoke to my stoma nurses and they sent me some little sachets of gel that I inserted into the pouch and this really helped. I also have used a few drops of baby oil inside the pouch too , this stops it sticking and moves the output down the pouch. 

My skin was  also very sore, almost raw and I was sent some little donut shaped rings that I applied before the pouch. Have you got the barrier wipes and the healing powder too? Your stoma nurses should send you all this but you can send for samples online to try out.

Calamine lotion is also fabulous for your sore skin but make sure it drys before you apply your bag.

It has been hard to manage with covid, I have only seen my stoma nurses once and it has really been trial and error.

I have coped ok with my stoma, but I have to say I cannot bear having it. I appreciate it possibly saved my life and if I have to have it forever then so be it. I do not think will ever be able to "name" it and be friends with it like some people have.  I will learn to live with it.

I sent a message on here a few days ago to a lady whose husband has a new stoma listing all the products I use, this may be helpful to you.  This was on a post called something like wife on a learning curve, there are a few really useful replies on there .

Take care and keep safe.

Good Morning I had my emergency up 7 weeks ago and now getting there.At first  fitting my bag was the hardest thing to do as my bag was cut to the size of my loop Stoma .In fact it should have been t to the size of the base As your Stoma has no nerves  you won't have any pain from it I have my supplier set up by my Stoma nurse .All I do now is phone and they help  fix  how my problems  Don't c your bag to big as it's the acid from your bowls that's burning the skin . You don't have to like it just take care of it and yourself.

Hello All,

Just a few comments to add to the thread so far starting with 'me too'.  Blimey this ileostomy business is a bit of a stress, isn't it.  

Got mine after emergency surgery.  The skin problems do settle down in time though I don't have one of those 'supermodel' type stomas with lovely clear skin all round and neat as a button.  And when it spat out three of my internal staples it changed shape completely.  Two years on I still have some red patches and the occasional sore spot, but I can manage things now with non-stick powders (Orahesive works for me) and barrier spray (Cavillon spray) when things are a bit tender.  

Like Aldan, I have a good relationship with my delivery service and get all the products I  need.  I also use pre-cut pouches though I know some people have not liked those.  It has been fine for me and cuts down the fiddle of pouch changes.  But, if you are worried, always speak to your stoma nurse as they know all the products.  If they are not helpful (not been my experience) try the charities, ColostomyUK and the Ileostomy Association.  I have had great support from both in the past two years and ColostomyUK's phone lines are still working.

It really does get better with time but you can't hurry the process.  You and your stoma have to settle down after major surgery and follow-up treatment that messes with everything all over again.  I'm sorry that you are finding it so hard, Phoebeb21.  It is a real adjustment to make but I decided right from the start that I needed to have a relationship with my stoma, Charlie, and the naming made it feel like something I could relate to rather than something that had been done to me.  Charlie has saved my life as you say and he's pretty astonishing, a piece of medical wizardry and just miraculous.  A hundred years ago I would have been dead.  Instead I am in possession of a pet I didn't want (someone said that and it is so true) but we go forward together to more adventures.  I am so grateful to Charlie. Even if his most conspicuous talent is farting, his timing is impeccable particularly in political discussions......

But to all of the community, I hope that you stay safe and well.  Here's wishing that 2021 brings us all the security we need and the positivity to get through.  Take care