[Crohn's] Ileostomy supplies

Zombrex

Hi guys,

Quick background (not vital so skip if tl;dr) -

Diagnosed with Crohn's in 2005, had a reasonably ok time of it until Jan 2012 when major flare up happened, lost a lot of weight (6 stone), and eventually after unsuccessful bout of Remicade went for surgery for bowl resection in May.

When they opened me up they found a ton of infection in the form of abscesses (which made me shudder given that I was on Remicade). So they closed me up again and said they weren't going to do anything until the abscesses were clear. I had an abdominal drain in for a few weeks but eventually my body itself made 2 fistulas to the skin and 1 two my bladder to drain the abscesses so they took out the abdominal drain and I've just been draining out the fistulas into two small bags and my urine since then. All a bit gross and painful (particular the urine bit) but it has stopped the infection and allowed me to be antibiotic free since October.

So finally scheduled for the surgery again at end of January to do the bowl resection. Doctor says that he probably won't be able to join bowls up again this operation so he thinks I will have to have a ileostomy for at least 6 months following the operation. I'm ok with that, I've had fistulas to the skin and bladder draining puss for the last 6 months which are sore all the time and constantly leak, so a stoma seems like a much easier ride.

Question -

Finally, on to my question. The wound pouches and other stuff I have had to buy for draining the fistulas have been a headache, difficult to get hold of and very expensive.

I'm hoping to have an easier ride of it with stoma supplies as I'm assuming more people with stomas means wider selection and cheaper too. There seems to be a lot of stuff on the Internet, including things like the Stealth Belt to help secure your bag in place for sports, sleeping and (shudder) sex.

All this stuff is on the internet though, and because it is expensive I would be nervous ordering something without being sure if it is the right thing. I like to chat to the person selling me something like this to make sure I'm doing things right, particularly because I will be new to having a stoma.

Does anyone know of supply store in the Dublin area that has ranges of stoma supplies but also has someone you can chat to about what works, maybe try samples etc.

Or anyone with a stoma, am I thinking about this wrong? Should I be getting stuff from the stoma nurse or through the hospital? Maybe you order online and have no trouble at all? Am I thinking about this all wrong?

Any advice on how/where you get your supplies or stories how you managed would help. I might be jumping the gun, my stoma nurse might sort all this stuff out for me, but I just thought I would check with you guys as well and see what advice there is.

Thanks and to all my fellow Crohn's sufferers.

Kristopherus

Your stoma nurse will know all there is to know about stomacare requisites. Be guided by her/him. Do you have a medical card? If so, a lot of the requisites are covered. If not, you should apply.

CarrickMcJoe

Stoma nurse will sort all out including your monthly order from chemist.
Wish you luck with the med card as they have clamped down big time. If not you will have to fork out €144 every month. If in the VHI you can claim all back except the first €300 euro.

Try Comfizz.com for support wear.


Good luck with op.

mgn

There is a group on facebook you should check out its called,CROHNS AND ULCERATIVE COLITIS IRELAND,over 900 people on it with either crohns or colitis great place to get info,im sure someone on there will be able to help you.