Re: Helen and Katie's Response

From: Susan Kuszczak (susan.kuszczak@att.net)
Thu Mar 26 15:43:08 2009


I know that what I am about to say is something most doctors will not agree with.  I have succumb to the fact that I will, at least at this time, require at least a laparoscopy, if not a laparotomy,  every 2-3 yrs dependening on the severity of the symptoms.  My last one was 19 mos ago and I am facing another.  I have done really well this time.  I develop such severe intestinal problems that foregoing the surgery and medicating instead, simply is not enough. 3 yrs ago I very nearly died.  The doctors and hospital would not believe me that all of my problems were due to adhesions...they ran tests and procedures causing severe complications putting me in ICU, etc etc. Then they referred me out saying they could not find anything wrong..Luckily, I finally found a doctor who truly specializes in this area and truly believes in the debilitating effects of this disease. He was apalled when they went in.   Exercising regularly, a healthy diet high in fiber and soy products help.....and the adhesion barriers seem to be more and more effective with each procedure.  This time the symptoms appeared much more slowly and are not as severe.  Of course, my doctor does NOT want me to wait until they become severe. 

I was also told to gain some weight which really did help alot.  I am only 4'9" tall and  now weigh 95 lbs.  At one point, I was down to 77 lbs (no eating disorders), I was vomiting at least 6x per day due to the intestinal adhesions.  I was told that people with "less body fat" FEEL the pain more because they do not have enough fat to absorb the sensations.  I do not know how much truth there is to that, but it did help me.  And I gained the weight with the help of an excellent nutritionist so that it would be a "healthy" weight gain combined with exercise.

I am certainly "no" health guru, smoker, social drinker, love french fries, etc....but WAS at my wits end.  And again, I have come to accept the fact, for the time being, these surgeries, although inconvenient, do provide months of quality time before symptoms return, and with each round of adhesion barrier, I get longer and longer bouts of being pain free.  Maybe this time no symptoms will return. 

I don't know if this helps.  But my first surgery was at the age of 18.  I will be 43 in April.  I feel as if I lost my youth, my womanhood, etc.  I am sure you all know what I mean.  But, my family is great!  My husband, who met me 1week before my hysterectomy and has stood by me ever since is a SAINT!  Take advantage of all the goodness that you do have and try not to focus on the negative.  As far as I am concerned, I think there are alot of people out there who have it worse than me.

--- On Thu, 3/26/09, Kelly Murray <klmurray_61@msn.com> wrote: From: Kelly Murray <klmurray_61@msn.com> Subject: Re: Helen and Katie's Response To: "Multiple recipients of list ADHESIONS" <adhesions@mail.obgyn.net> Date: Thursday, March 26, 2009, 4:50 PM

What have they done for you?  You are saying no pain meds but surgery?  or are you doing other kinds of therapy for the pain?  I am very open to any options we have besides surgery after surgery or pain meds.  I am on the patch for pain and I also exercise regularly stay active and get massage's but it almost isn't enough.

> ----- Original Message -----
From: Susan Kuszczak To: Multiple recipients of list ADHESIONS Sent: Thursday, March 26, 2009 1:06 PM Subject: RE: Helen and Katie's Response

I have Severe Pelvic Adhesive Disease, facing my 18th or 19th surgery in 25 years....hard to hold a job, lost my home, cars, savings, inability to have children,  etc.  Suffered many complications as result of hospitalizations and surgeries (sent the priest in 2x for last rights), BUT, even so, I cannot agree more with Katie's response regarding the years of pain medication.

After a long history of ovarian cysts, endometriosis, adenomyosis, blood clots, adhesions and intestinal blockages due to adhesions, I have found 2 wonderful physicans NOT so interested in medicating and who do NOT think it is in my head.  1)  Dr. Dodds, Providence Hospital in Southfield Michigan, 2) Dr. Advincula at University of Michigan Hospital in Ann Arbor Michigan.

They saved my life!  If you can get to Michigan, schedule an appointment with either of them! 

Good luck and wish me luck with my next surgery!

Susan


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