crohn's

Digestive health
1

Hi all, my name is nick i have had crohn's for 12 years now and then diagnosed with coilitis just before christmas last year. I have had 6 operations for crohn's upto now removing most of my small bowel. Then in febuary just gone i had more surgery because of colitis, leaving me with a end colostomy. plus they removed more of my small bowel, im penciled in for more surgery after crimbo for a total colectomy and maybe TPN tubes due to lack of small bowel. 

​But the question i want to ask is, does anyone have problems with their colostomy bags coming free from the skin? the problem i have is, im a roofer which involves bending most of the day. I use the salts convex bags and belts BUT! i find they still come away from the skin on the top right hand side next to my scar? they don't come off enough for me to get in a mess, but just down to the convex part. Or so that there is a small gap for wind to escape. I have tried a few differant bags from coloplast with still no joy, if not worse? and pretty soon i will have my stoma for life so i need to sort these little things out.

i will be very greatful for anybodys help or ideas.

2

Hi nick I can't offer any help but I do hope your future surgery goes well and you can get some help. You have been through so much and I am in amazement that you are still continuing to do such a physical job. Good luck

3

Hi Nick

I do not know the answer as I do not use same as you but I have found the manufacturers helpful. Salts may have some kind of patient helpline that you could ring. I use micropore to get better adhesion but that may not help you so suggest you contact Salts. Best of luck.

4

Hi, thanks for your post and I will keep my fingers crossed, thank you

5

Hi, thanks for that, I never thought about asking the company for advice

6

Hi Nick. I use Convatec flexible flanges and bags. It's a 2 piece system. The flange has the inner ring like a pool neck jumper so that no matter how much you move it remains snuggly fitted to the stoma. Sticks really well to the skin even over scar area as has a double sticking area.

Best advice is to go onto manufacturers websites and they can all send you samples of ones you want to try. Try Salts, Convatec, or just put 'ileostomy bag companies' in your search engine.

I've had all my colon, rectum and an us removed and most of my small bowel. I'm left with 1.5m of not great quality small bowel. I spent 6 wks on tpn last autumn before my last bowel surgery and it was easy to do myself. Now I have 4000 calories a day to maintain my weight by eating normally and also using 6-8 ensure plus drinks a day.

Good luck with your surgery and with getting your bag sorted. I started on Coloplast but changed to Convatec as after about 3 months the Coloplast stopped sticking to my skin.

7

Hi,

​  Thanks a lot for your help, i will get some samples from salts. I tried a couple of smples from coloplast with pretty much no joy, and i would like to get things right for after my next operation and avoid leaks and stuff as best i can.

​thanks again, and good luck for the future with every thing

8

Try Convatec as I swoped to them when I had problems with bags not sticking properly with the Coloplast ones. Because the 2 piece system has an extra ring if adhesive they give you better sticking area and more confidence.

9

Just to be sure, are they the sur-fit natura mouldable covatec?

10

Hi,

Thanks for your advice, I got straight on to convatec and they sent me some samples. I am wearing the 2 piece pouch now and it seems great! I wore it training last night, and to work today for the first time.

So far so good, fingers crossed.

Thanks again for the help

Nick

11

Glad they're working well. I've always found them really reliable and the extra sticky area gives more confidence.

12

I have been using something called pink tape. I put it around the entire wafer and half on my skin. I also use a Hollister wafer called new image. Skin barrier floating flange. It has no tape and is all skin Barrier material (the same as the inside sections of the safer). That may help hope so. Good luck as I know bending at the waiste is a hard job for a colostomy.

Fred

13

Hi Nick, how are the new bags going? Any joy with avoiding the sticking issues.

14

So far so good? I have to wear the salts belt with them as when I didn't they started coming away towards the end of my work day, but with the belt they are good. I'm going to try the one piece pouch today and see how I get on with that.

15

That sounds good. Everyone has to experiment with different ways to make the colostomy work.

16

Very true, and I feel more at ease for the future. The last thing I want is to have to spend the rest of my life with bags that come off half hour after putting it on.

17

Hi Nick

Sorry to hear you have been having problems with your bag coming away. The last thing you need when you're up on a roof!

have you tried Salts SecuPlast security strips? They're available on prescription and are a sort of half moon shape of tape (like the aloe type material that Salts bags have) that you stick over the edges of the bag once it's in place. So long as your skin is dry once they're put on they stick like the proverbial poop to a blanket! I used them when swimming abroad on holiday and they stayed in place until the next bag change - even though my skin was a bit sweaty due to the sort of temperatures we don't get at home!

I initially got a sample from Bullens - who send my monthly stash. The product code is SPHA2 and they come in packs of 30. I'm sure either Salts or Bullens will send you some to try but if you have difficulty in getting some I have a spare pack I could send to you.

Another thought is if you were putting a new bag on just before work and then getting a bit hot it may be why the bag doesn't stay put..? I have had a bag come away when I (stupidly) put it on before I had a bath. Doh! My job is quite physical so I change my bag a couple of hours beforehand and, touch wood, haven't had a problem so far!

Good luck!

Alison

18

Hi Alison,

Thanks for that, I do have a couple of them half moon strips that coloplast sent me last week as a tester. But I was going to use them with the bags they sent, and didn't think I could use them with other bags.

I am trying the convatec convex bag at the moment but found I have to use my salts belt with it as well all the time (which I would like to not wear once in a while) I am going to try the coloplast bags later but I'm sure I will have trouble with them.

Thanks a lot for your help

Nick

19

Hi Nick. Sorry but I didn't see your problem with your Colostomy equipment coming loose. I agree you need to get this sorted and I have had to get help for this myself. I use Convatec equipment 2 piece. I now use Coloplast Brava Elastic Tape to give more security. I don't know where you get your equipment but I eventually ended up gettng in touch with Alpha Med who deal with problems and your prescriptions very easily. I use Barrier Wipes to stop my skin getting sore, there are things to put in your bags to stop smell if necessary. I have found 2 piece systems the best, because my skin would not tolerate with ripping the back plate off all the time. What I can tell you is that my stomach became more peaceful after 1/2 years and I have found that Co-codamol for pain will help to slow the output down a bit. They always warn you with these that you may develop constipation, and I laugh and say NO for the first time I have some control.

Best wishes and good luck with everything Sheila

20

Agree with the codeine to slow things down. I tried Immodium but needed to take 6 capsules at a time 4 times a day for them to have any effect and they gave me raging headaches. Due to your joint pain problems (I responded to that on your other thread) your gp may be happy to prescribe some co-codamol as a duel effect, to slow down the bowel, reduce bag output and give you some pain relief for your joints. Go and see your gp and explain why you want them and it would be a pretty unsympathetic Dr who wouldn't prescribe some to see if they help