Re: Re[2]: Any alternatives???

From: Karla Nygren (ifirgit@up.net)
Fri Apr 21 06:13:07 2000


Igor,

Thank you so much for your response. I totally agree with everything that you are saying.....there is absolutely NO way that I would undergo another surgery unless it was absolutely necessary. But I absolutely have no choice. Back in 1991 most of my problems began when they constructed a new bladder for me...actually they first attempted to repair my bladder by removing the bad tissues and replacing it with bowel tissue and making it larger at the same time. When that was unsuccessful they made an entirely new bladder...less than 6 months later.

This surgery was quite successful in that it decreased my loss of urine substantially. I realize now that adhesions were probably causing the problems that led to these surgeries, but as I am sure you understand, there is no going back. About a year later I developed an obstruction (it ended up being only partial) and when they opened me up they found 15 hernias......one huge one and 14 smaller ones. It was not 15 separate hernia repairs..although I suspect we may be beyond that point now (I have never sat down to count how many hernia repairs have been done). The marlex/gortex that they built my abdominal wall with became grossly infected and they would remove sections of the mesh as they became involved. They would leave the wound open to heal from within....and I subsequently developed a fistula from my bowel to my bladder. At that time they attempted an exploratory surgery to repair the bowel only to go in 2 weeks later to remove my bladder.

Since then (1993) I have been dealing with a urostomy that has created a weak point in an already weak abdominal wall. Hernias keep developing adjacent to the urostomy creating difficulties with the flow of urine and thus I end up with kidney infections and now the beginnings of kidney deterioration. Each time they have gone in to repair the hernias it has never been less than 6 hernias that they have found. A little over a year ago I began developing urosepsis....an infection that has gone throughout my entire urinary system and into my blood system as well. After the first time the doctor felt that it was just a fluke but said that if it happened again to let him know. A month and a half later I had to undergo another hernia repair, was discharged only to go home and have to be readmitted a day later with another severe case of urosepsis. It was then that they began to investigate what was going on. Approximately 5 months after my first case of urosepsis and 4 episodes later they learned that my ureters were blocking off every time I stood or sat. On August 30th I underwent a urinary revision and another hernia repair. The day after this surgery the stoma nurse discovered that the urinary revision was not successful and I was still having a reflux of urine intermittently when I stood or sat. My abdomen always appeared distended to me after this surgery and approximately a month and a half later I discovered that I had yet another hernia. Since this last surgery I have not been able to obtain a seal on my urostomy appliances...thus I leak urine constantly. The hernia is now the size of a football and I look like I am 9 months pregnant on one side of my body. I have been told by my doctors that I must spend my time lying down to prevent the urosepsis and to lessen the amount of urine that leaks.

Igor, this is a very dehumanizing condition. I am constantly wet with urine...it smells and I am too embarassed to go anywhere. I continue to suffer with urosepsis as well as extremely high blood pressure that has confined me to the intensive care unit of our hospital (because of the severe pain). It is not a surgery that I want to undergo....I have been told that it will kill me. But I have also been told that I will die without it. At this time I am not allowed to even hold my grandchildren....the light of my life. This is not a life that I can live with. I feel that God has given me this opportunity to get my life back....and I also feel I really don't have a choice. I cannot continue to live my life like this.....it is no life.

God Bless You!

Karla

>----- Original Message -----
From: Igor Gudymenko <igudym@eos.comint.net> To: Multiple recipients of list ADHESIONS <adhesions@forum.obgyn.net> Sent: Friday, April 21, 2000 2:49 AM Subject: Re[2]: Any alternatives???

> Dear Karla,
> I have read some your recent messages and arrived at a
> conclusion that is something awfully wrong with your health.
> Maybe my words wouldn't sound correctly but I'm sure you
> have to think over your situation indeed. 27 operations are
> really too much for anybody! I suppose you should seek
> another methods. The knife is not the best way about it.
>
> > I just want to mention that yes exercise is critical....particularly
> > sit-ups. I was told over and over that my abdominal wall could be
> > strengthened with situps, however due to other medical issues was unable
to > > do them. From a chronic hernia sufferer you can get hernias from
standing > > up, laughing, sneezing, sweeping, vacuuming, making the bed and
scrubbing > > the floor. I have gotten hernias from each and every one of these
methods > > and probably many more. I can actually feel it when I pop a hernia.
>
> No, Karla, I'm sure you are wrong here. If man's abdominal
> wall is too rigid and the body is intoxicated by tons of drugs
> he could get a hernia from usual bowel movement. After every
> surgery your intoxication level is just being raised. Then
> again the lack of normal blood circulation in the abdomen. And
> the congestion again. And the muscles' rigidity on the side.
> But very rigid muscle is a weak muscle in fact since it can't
> endure the sharp and instant load. It's like a vicious
> circle... :(
>
> > If you absolutely need surgery it is very critical that you get
appropriate > > treatment. When I had my first hernia repair they had to place an
entire > > wall of marlex and gortex because I had 15 hernias. Despite having this
> > prosthetic wall I continued to have hernias. If this is happening to
anyone > > they need to find a surgeon that is willing to be aggressive in your
> > treatment.
>
> 15 hernia surgeries? I suppose it's quite enough to stop
> there and realize that problem is not in the surgery itself
> but in the recovering process.
>
> > I am soon
> > to be scheduled for my 27th laparotomy since 1991.....I have no choice
since > > it is medically necessary for me to survive. I am in a situation where
not > > only do I have extremely bad adhesions, but I also have absolutely no
> > abdominal wall remaining and I am continuously herniating despite
repeated > > repairs.
>
> I dare say if I were you and haven't any whole obstruction or
> strangulated loop I would try to more natural methods. You
> maybe seem it is too easy to talk like that but when I had
> realized that the surgery isn't effective for me I chose other
> way..
>
> You noted:
> > I do not care to see anyone end up in the same situation
> > as I am in (go ahead and read my story on the quilt...Karla N).
>
> I suspect you possibly think about your case as unique and
> very hard to cure. Considering my personal experience I can
> assure you that if a man wants to recover from a severe disease
> he has to change his mentality at first and forget about
> rareness of own case. It helps to avoid his concentration on
> the sick moments. It's not easy but necessary.
> So, Karla, try to forget about yours too..
>
> Igor Gudymenko
>


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