> ----- Original Message -----
From: rikam
To: Multiple recipients of list ADHESIONS
Sent: Wednesday, April 11, 2001 10:40 AM
Subject: Re: FOR MILLIE (colostomiy)
I missed the original post...did someone just get a colostomy? If you have any questions feel free to ask, I've had mine for six years now. Also there are Colostomates in just about every large city who meet monthly. It's an organization something like United Ostomy ___????I can look it up if you like. Talk about getting neat tips. Also, there is a national magazine publication and they are on the internet as well. The local clubs usually put out monthly newsletters with lot of tips.
They always are looking for folks to help counsel new ostomates especially folks under 40. There are many varied reasons why folks end up with an ostomy. When you hear about a knife or gun injury involving abdominal injuries...many times these people wake up with ostomys. There was an 18 year old on the floor when I had mine. He was flipping out...he sustained an abdominal knife injury and "woke up" with his. Mine was a total surprise as well. I've been able to help a few people by sharing my experiences of how I learned to cope with the surprise factor. I know of another gentleman who was in his twenties and on the verge of suicide. His was a complete surprise as well. I was counseling his girlfriend. He wouldn't allow her, the woman who loved him dearly, to come near him or visit even once he got home. They had been planning to marry. He was so humiliated, he felt ashamed, dirty, and he couldn't find any way within himself to help himself cope. He had no inner resource for this type of problem. He couldn't talk to others with this problem because it was so private to him. He experienced something that I did as well, Every so often you become overwhelmed with this strong feeling of panic; it's like you HAVE to pull it off, you have to get rid of it, you have to make it go away, sometimes you sort of paw at it because it needs to disappear...I think it's a control issue, you had no control over what happened, it is something that happened to you, without consent, without warning, without understanding and it is suddenly there...so the panic shows up because it's your attempt to master the situation, it's an attempt to regain control but it's so hard to cope with because you never can gain control, you don't have control, it's impossible to get rid of it or take it back etc. And had you been conscious you may have made the decision not to have it regardless of the situation or circumstances or it's affect on your health. This gentleman I told you about pleaded and begged with a every surgeon he could find to make it go away, to reverse it. He didn't want it. He wanted it gone. But no surgeon would do this for him. No surgeon would reconnect him. I really feel for this guy; his frustration, his humiliation, his loss of control, his inability to adapt or cope. It's really hard on those who wake up with one. It is something that is non consensual (spl) affecting a very private function of your body. As children parents will make an ordeal out of body functions...sometimes spanking children because of accidents with urination or bowel movements. It may not seem to, but does have an affect on many people when they grow up...it really comes out when you have a surprise ostomy and suddenly you have absolutely no control over this body function. We are taught to be embarrassed and humiliated by accidents when we are young, we are taught to be ashamed. Some parents do this intentionally others do it by accident by sighing or muttering, or making statements such as, "again last night" or "why didn't you just get up and go" etc. That has got to be one of the worst things you can do to a child, teaching them to be ashamed of their body functions, teaching them to be ashamed of themselves, in essence, you make them feel dirty. There are plenty of other ways to deal with this other than making a child feel put down. ...other children tease and taunt if you lose control...and as adults other adults will snicker and point if you lose it sometimes breaking out in laughter. So for someone who is 18, 20, 30, etc. it can really affect them. We have doors on public bathrooms (which is a good thing) and we go in the bathroom at home, closing the door, and having privacy...so suddenly having doctors and nurses taking an intimate part in your elimination can be extremely stressful. It can be stressful having a girlfriend or spouse helping with this when you are first home from the hospital. Also, having acc idents because of a colostomy is not easy to cope with. Also, not all insurance covers colostomy supplies so not everyone with a colostomy has a bag to catch what comes out. The supplies are very costly. I have awesome, incredible insurance that will allow me to choose any doctor in the world I would like to see...but, it does not cover colostomy supplies...go figure. When someone has a medical trauma or devastation even if they do have insurance to cover hospital and surgeons it can still wipe you out financially because the medical devastation affects other areas of your life. Then what do you do?
Some folks are lucky as they have a continent ostomy. It doesn't leak. Others may take meds that cause almost constant leakage or filling of bags. For instance taking antibiotics messes up the healthy bacteria and can cause diarrhea of icky proportions in some of us. Oh heck and those CT scans...the white chalky stuff they make you drink will blow a bag up and off of you faster than almost anything.
Humor really helps. We have jokes around here that others might find inappropriate, insensitive, or "cruel" but, they help me to cope with it. Plus, once you heal from the psychological damage as best you can, there is some humor in it.
Also, there are some obstacles and hurdles. For instance I used to be active in Karate. At the time a shield had been designed for a football player but it wasn't being manufactured regularly and far too costly for me. So I had to quit. Seat belts can pose a problem. Dogs, goats, or other animals jumping on you can be a problem. I have to wear the waist of my pants below my navel now, and that is a real hassle. I feel like my pants are dragging. The waist if I put it wear it goes cuts right across the middle of my stoma and with or without a belt is very irritating. I wish I could buy pants with a scooped down edge on that one side. There are all sorts of gadgets out there as well to help folks cope. Probably one of the best ways to adapt is by visiting patients at the hospital or doing some telephonic counseling...reaching out and helping others usually seems to do the trick and new ostomates can really use it.
The ostomy club folks have a recipe for an electrolyte solution that really helps. It's home made, I like the taste, it's simple, and it works. Many of the patients are aware of adhesions as well.