Re: PLEASE DON'T GIVE UP!!!!!!

From: rikam (rikam@uswest.net)
Wed Mar 14 18:58:29 2001


I've met many people who have been in your situation and mine. I've also met many loved ones who were left... Even my neighbor sustained a severe injury when she went in for a minor procedure. She begged, pleaded, screamed, and cried for an open procedure. Nope! No can do they told her. Doc said her particular injury more than likely would not have happened during an open procedure. The doctor felt miserable. The patient, my friend and neighbor...well you can just imagine how she felt. It was so weird, here we were both, "bag ladies" please forgive the pun, it was the only way we could get through it and cope. Luckily her problems ended there. Luckily she also learned her lesson the first time.

Did they encounter any problems when you went for your reanastamosis(spl)?

I am so sorry this happened to you. There are so many out there who also survived this type of thing as well as many who didn't survive. You have a lot of courage speaking out and telling your story. Many times when a Survivor speaks out they get harassed. Some comes in the form of; "oh, they all just seem to find each other" "Oh, one little thing goes wrong and they blow it all out of proportion and latch on to that one little isolated experience and then it ruins it for everyone else." or, "oh, the risks are so low. They are the exception. It hardly ever happens. But, just get one of them in a room and they sure can cause a lot of problems." The numbers are wrong. I know for a fact that the numbers are wrong, so do other doctors. They know why they are wrong as well. I've heard others be put down in this way. If it happens to you, just don't listen as what they say is not true. Just save lives with your story. It's just a way to make the survivor feel bad, shut them up, and justify things. That's all. I really feel for you. It's like going to hell and back. The coming back part is really hard. For me it was not just a perforation and a "simple" colostomy. It was not one injury or one isolated event. There were multiple events. I wish you good health and I know, that you know, that you have a responsibility.

> ----- Original Message -----
From: jackie burgess To: Multiple recipients of list ADHESIONS Sent: Wednesday, March 14, 2001 4:05 PM Subject: PLEASE DON'T GIVE UP!!!!!!

Hi everybody, >
>6yrs ago I went into hospital on a friday morn. was told that i
>would only be in for half a day, had my op. removal of ovaries,
>that afternoon my hubby rang up to see if he could collect me to
>take me home, he was told there had been some sort of complications,
>but not told what. On the sat. junior dr came round on ward round
>and said that i could go home, I stated that I had not passed
>urine, or opened my bowels AND SIMPLY DID NOT FEEL WELL ENOUGH TO
>GO HOME, I was absolutely desperate to go to wee, so they inserted
>a catheter(relief). so they kept me in hospital. On the sunday
>morn.i felt a little better but not right, on the mon. morn. at
>6.30am they came to remove my catheter with the prospect of going
>home that day, well after that all hell broke loose I was being
>violently sick, but it was a horrible blacky/green in colour, and
>the pain was excruciating, this progressed for most of the morn. I
>went to try to open bowels but i was literally crawling on my hands
>and knees, i thought i was going to die(little did I know I was,
>actually). After my husband kicked up a right stink that the
>consultant should be called he eventually arrived around 3.00ish
>and said oops it looks like i might have nicked your bowel and
>bladder, because at this point I was totally incontinent of urine. I
>was then rushed into theatre as an emergency at around 10.00pm and
>came out of theatre around 2.00am with tubes in every orifice in my
>body, in my neck up my nose all over my body and to my horror and
>yes it was horror a colostomy, of course i was heavily sedated
>on morphine. I was kept in hospital for roughly 3 months so I had
>no alternative but to cope with my new friend!!! > HA HA. But
>everyone kept telling me how well i was coping, but they didnt know
>what was going on in my mind only i did, yes i'll admit i didnt want
>to carry on life as a 'Freak' but then i had to weigh up the
>alternatives. I KNOW I went through the tunnel to GOD. I could tell u
> everybody that was standing at my bedside mourning me, everything
>was white,the whole room was white and very very bright, but i
>wasnt frightened, it was so serene I eventually had the colostomy
>reversed in the dec. and its the worst mistake i had to make. at
>least i could do more things then than i can now.They didnt repair
>the whole in my bladder til the following february, that was worse
>than having a colostomy, you think u smell of urine all the time, and
>if and when i did go out i was wearing adult nappies two pairs
>of underwear just to try to remain dry, i did have a few mishaps and
>i just burst out crying with the humiliation of WETTING myself.
>I DID NOT find a colostomy hard to care for, as i didnt have a
>choice, hey this is what i'd been dealt so I had to get on with
>it, It was the coping mentally, what were people thinking of me,
>could they smell 'the pooh' all those kinds of things.would my
>hubby want to make love to me with a colostomy? Since then i
>have had 17 ops to try to sort all the problems out, but my inside
>is an absolute mess, and I wont ever be cured of pain. one of the
>worst things is trying to have a sex life, or opening my bowels.
>either of these things take me to my bed with so much pain, and
>sometimes vomiting straight after. as i said before i am now
>registered disabled and have not worked for 6 yrs since and cannot
>do housework cooking very often, all the things people take for
>granted.BUT this is how i'm going to be for the rest of my life so
>i HAVE to learn to cope, not saying that i do all the time,
>sometimes i'm so depressed, but what other choice do i have, GOD gave
>me a second chance at life, i've a job to do, still,on this earth,
>so i WILL do it to the best of my abilities, disabled or not.
>I dont mean to be patronising, but, try not to look on what could
>happen, all the time, YES u have to be realistic and be aware of
>what could go wrong, but you could get all het up worrying about a
>colostomy. In MY OWN PERSONAL OPINION, IT WASNT THAT BAD. try to
>stay as positive as u can. I was just very unlucky, but then i let
>the judicial system fight my case, and happily i won. So many
>things go wrong in this world, but God put us on this earth as he
said "for just one day, any more time u get after that one day, is a >bonus.I know its hard to stay strong at times, but IF i can cope then
>i know others can Hope this answers some of your concerns, and
>if i've helped then its been my pleasure to share MY experience
>with others

Hi everybody thought i would reply to your email. I >myself ended up with a colostomy 5yrs ago NOT due to a stretching of
>the colon but having my ovaries removed, the surgeon accidently cut
>my bowel and bladder. I know the thought of a colostomy frightens
>people, but in MY OWN experience I managed to cope with it(well I had
>to ) it was coming to terms with what had happened and my own opinion
>of what others must have been thinking about me. 7 months later i had
>it reversed and although it was excruciatingly painful at the time of
>the reversal, I didnt have half as many problems as i do now.
>
>Somtimes I regret making the decision to have my bowel re-sectioned >
>again,at least then I could live life fuller than I can now.
>
>As so many people have already stated things CAN go wrong unfortunately,
>but I had to make the best of what I had.If it meant me having a
>better quality of life than I do now then I would opt for another
>colostomy. I even asked my surgeon if he would consider me having
>another one, needless to say his reply was unless there is a clinical
>obstruction then no. I did actually suffer from peritonitis and its
>not a very pleasant experience to go through, I know I went through
>the tunnel to God, but fortunately my time was not up.
>
>Please dont think i'm being negative, but people must hear what its
>like to end up having peritonitis or a colostomy.

>I would not want to offend or upset anyone this is just MY OWN experience of what can go wrong.
>I guess I was just very unfortunate
>
>hope this helps alittle regards
>
>jackie B England


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