Ehlers-Danlos Concerns with Stoma Surgery After RNY Bypass

Hi there,

I was told yesterday that i need to have at least a colostomy, probably an Ileosotomy, (I already have an RNY gastric bypass).  I am not as worried about losing my intestines as I AM worried about my skin tearing, and the stoma ripping after surgery. I have Ehlers-Danlos Diesease (Type 3), which is a genetic  collagen disorder, where the body does not produce enough healthy collagen to hold itself together. I found out AFTER i had the weight loss surgery and was not fat any more and finally started getting medical treatment for things like colonic inertia. (and other things).  At any rate, my skins tears so much that the only thing that I can use band-aide wise is Coban and paper tape.  I am kindof nervous about what would be used in terms of a bag etc if I can't tolerate any kind of adhesive?  Is it absolutely neccessary to have something glued to ones skin?  

what happens is that my skin literally peels off onto whatever band-aid and I have to use neosporin or something, even after ten minutes. even the

The specialist I saw the other day said that my nerves are basically dead and not going to get the signal that i need to poop, so havng the thing routed out my rear is not really an option. 

The other problem is that I have bad asthma and the smallest hint of a smelly perfume smell will start an asthma fit. 

 

is there any way to be tested for either of these things?  Any other EDS folks here on this site/

Any other RNY gastiric bypass folks here? would love to connect. so many questions. Thanks

Hello bibo. Thanks for posting your quetions.

I don't know  lot about your condition so I'll stick to answering what I do know.

If you have a colostomy, then after six weeks you should be able to irrigate which will make your life a lot easier with regard to output during the day and perhaps less necessity to rely on bags.

I have experimented with not using the adhesive wafers by making up devices that simply hold firmly against the skin with an adjustable belt. They do work to some degree but they are not as reliable as adhesive waifers when it comes to being active. There is a soft rubber substance that is used by disabled people (to stop things slipping on sufaces) which I have cut to shape and it seems to stick reasonably well to my skin without an adhesive.

When you need something out of the ordinary it seems to be a matter of experimenting until you find something that works for you. I hope you manage to sort things out for yourself and if there is anything we can help with - you only need to ask.

Best wishes

Bill

Thanks Bill. Will probably be interested in something like these at some point.  Ehlers Danlos is considered a "rare" disease, if you would like to read more about it, there is a site called ednf.org

basically I  know next to nothing about the particulars of ostomies, except that my ex mother in law had one, and she was very active and did all kinds of stuff, and it didn't slow her down at all. I had a client that I used to care for who had to be tube fed, but thankully I am not there yet. 

I don't have much of a stomach because i had weight loss surgery. 

that's when i found out how easily my skin and guts can tear. It's like paper. Just rips because it's Tuesday at three. Totally sucks. But once I get healed, things are ok. I just have to be VERY VERY careful about adhesives and bandaids and glues and stuff. 

 

Does everyone use deoderants or perfumes or scented stuff in their bags? 

Is that neccessary? 

Could an essential oil be used instead of a manufactued spray? 

Thanks for the input

pHello Bibo. Thanks for the information. I went on the ednf site to inform myself of what the condition is.  Not an enviable situation to be in and with a stoma on top of that. You will have your work cut out to balance the needs of one with the other.

The answer to your question about deoderants, perfumes etc  is that some people use them and other do not. People have tried all sorts of alternatives to good effect and essential oils are a perfectly reasonable choice. Others have posted that they slip mints into the bag along with other things that i cannot recall just now. Hopefully others will join this thread and give you a better idea of what they use.

If you have to use the adhesive stuff, don't be too despondent at this stage as the adhesive wafers come away very easily if you use a medical adhesive remover  spray or wipe. I've tried a few and they all work, but of late I've been using SALTS products because their 'wipeaway' spray smells of mint - Just a preference! as there are many others that smell of different things.

There have been a number of old posts on here where people have had very sore skin and have found solutions to their problems so it  might pay to trawl through  some of the old stuff to see if there is anything that strikes you as a possibility for your condition.

I wish you the very best in your endeavours to cope in  the coming months.

Best wishes

Bill. 

Hello bibo. I've just been wandering around this site and in the file called 'premium content' there is a file called  tips from ostomates  in which there are suggestions about alternatives to deoderant sprays.

I hope this helps.

best wishes

Bill 

Words of Encouragement from Ostomy Advocates I Hollister