Help with Ostomy Apparatus and Fistula Wound

I have a fistula that my surgeon is trying to allow to heal from the inside out, so I have a small open wound (fistula) on my stomach that I bandage and tend to daily... because of this fistula's history of dumping bile into my body cavity and basically killing me once... my surgeon didn't want to put me back on TPN but rather give the bowels a break/rest, so he gave me an ostomy/stoma.

This happened in November 2012, and I have had hardly one single day of real rest and relaxation since the ostomy/stoma was done (it was a life or death decision). It was either create the ostomy/stoma and let the bowels rest and hope to repair the fistula - if it doesn't repair itself - and have the ostomy reversed in February 2014 OR... the other option, NOT do the ostomy/stoma and let the fistula slowly leak bile into my body cavity and all my organs slowly die off one by one...

My problem, other than the obvious fact that I now poop from a hole in my stomach, is getting my two-piece Convatec ostomy apparatus to work properly.

My stoma is about the size of the tip of my pinky finger and about 1/2 that in width. It is very, very tiny... it is also an "innie" stoma and not an "outtie" stoma.

I have so many problems with it I don't know where to start.

I can't stand the smell. It makes me so sick that I gag the entire time I am doing anything that involves cleaning or changing it.

Even though my bags have charcoal filters, I can still smell the odor when my bowels begin to move and dump into the bag or just when gas/wind passes... the stench makes me gag.

My two-piece apparatus I wear works some days and some days it doesn't work at all... the problem is that stool will get under the wafer somehow and once it does, it sits there and the bile eats away at my skin. My skin has been so red, raw, bloody, and probably slightly infected that I have had to remove the bag for 2-3 days at a time and stay awake in order to catch the stool when my bowels move/dump with tissue and flush it rather than wear the apparatus since my skin is so irritated and so in need of a break and fresh air.

I am NOT cutting the hole too big, and I am using the extra barrier rings, but still, the bile will somehow get under the rings and eat away at my skin.

I don't eat much anymore because eating means waste and waste means the bag, and the bag means having to mess with it (smell, changing, clean, etc...) and that means I get frustrated and sick.

It's like a vicious cycle that I am not sure how much longer I can bear it repeating.

Currently, I have the Fistula bandaged and covered properly as it is supposed to be; however, the stoma is open to the air with nothing but folded paper towels over it and my boxer shorts to hold them against my body.

I am doing it this way because I am able to keep ointment on the skin to clear the skin up from the last time the bile destroyed it, so it can get some air and breathe and because it is so much more comfortable than the ostomy bag and so much easier, really.

If anyone has any suggestions, please let me know.

Thanks in advance.

~s

Keeping your skin exposed to the open air will definitely help with healing.

If you have an innie, maybe a convex barrier would help. It sort of pushes the stoma out more so that output is more likely to go into the bag. Don't be afraid to ask for free samples to experiment.

For the smell, there are drops you can put in the bag, plus a pill that may help.

As for the filter, I consider it a fancy way of saying hole. And the filtered smell is almost no better than direct contact.

For general skin care, I like to use witch hazel. If your skin is raw, it will burn, but I like how it moisturizes without leaving a residue. I use it every time I change my appliance.

To help heal your skin while wearing an appliance, there is ostomy powder that you can apply to the raw skin. You dab the powder on, then apply a liquid barrier over it. The spray is the easiest to apply. If you have it as a barrier wipe, then dab it onto the powder. Some people do multiple layers, but I've never really had any luck with it. Once your skin is looking better, you can stop using the powder.

I hope this helps.

Hi Anise, sorry to hear you're having problems. We all did in the beginning. I had no internet to refer to 29 years ago when I got my ileo. I find it is better to eat thickening foods like bananas, oatmeal, rice, etc. than to limit eating, which causes gas and more liquidy stools that get under the wafer easier. Sinfulsot had a good suggestion for using the powder and barrier spray. Good luck, Ron in Mich.

Hi Anise. I can't add much to what's been said except this: What help are you getting from an ET nurse? Did you get any home care visits following your surgery? Check your insurance plan. You cannot go on under the circumstances you describe. Your issues should not be addressed by trial and error but by competent professionals. I think your surgeon has to be more proactive in your continuing care. Make some noise. All the best! PB

Hi Anise,

I can only quote the excellent advice the guys above have said. If it is possible, get to the nearest hospital that has an ostomy/wound care nurse available. You must be near exhaustion trying to treat the problems yourself.

If you have an "innie," a deep convex appliance is a must (with or without the barrier rings). They "push" the stoma out enough to prevent the output from coming into contact with your skin.
The lotion you are using may actually be preventing the ring/appliance from sticking to the skin. It is better if these are placed on clean, dry skin as they can form a healing barrier to the inflammation. Stomahesive Powder and Orabase Protective Paste can be used together to form a barrier beneath both the ring and base. These products are available from Convatec, although most ostomy companies have similar products.

There are bags without filters available. I actually use a filtered bag but place tape (any kind of tape is fine, from duct tape to sticky tape) over the filter. There is no smell, no leaks, and actually no "ballooning" of the bag either. I have come to the conclusion that the filters are an absolute waste of time.

But definitely in the short term, seek medical advice as soon as you can. Good luck and let us know how you get on.

Have you tried stoma powder? Are you using adhesive paste with the ring? If your stoma is an innie, perhaps there is a bag with a concave opening. I had to go with a convex bag... I went to a wound clinic to help me... gotta get a good seal. Oh yeah, I also use spray adhesive... make sure when you change the bag, you hold the whole darn thing to let the heat of your hands help with the hold. 60 seconds.

Anise,

There are sites that may help you understand the strong mind-body connection. The emotional quality of your life adversely affects your health status. This effect appears to be "bidirectional" and increases the feeling of despair, hopelessness, and depression.

I'm an ileo for 7 years and to be honest, I still have a lot of physical problems because of my personality type and my profession. I'm devoting a great deal of time to developing a website that focuses on patient-centered care and the mind-body connection.

I'm a strong believer that you have to surround yourself with people who support you and learn to be in charge of your health condition because health providers are a long way from providing us ostomates with proper, ethical, and effective care.

Seriously, I will be your person! Please allow me to make a difference in your life.

Debra

I concur with Moonshine's post. During the humidity season (I grew up near you, and I loved driving through Dallas!!!), sweat tends to never agree with ostomy appliances. Speak to a wound care nurse, and request either stoma powder or paste. Another option may be switching to ConvaTec, as it has a sturdier ring. I obtained ConvaTec from a fellow ostomate, due to me running out of supplies. I love this brand because I went from changing multiple times a day to only once a day. My stoma no longer retracts due to the bag sweating off.