Re: Janet's story

From: Millie (milliem@citlink.net)
Thu Apr 5 09:42:51 2001


Dear Janet, I lost your email address, so for now I am emailing you here. I've been thinking about you a lot. I am so upset today. Tuesday I had a colonoscopy, and when I asked the gastro yesterday, she said it was normal. She said she got the scope all the way through, and she said there is no obstruction, or inflammation. I did have a small bm this morning, but I did see some blood. It was a spot, but it's still blood. I hated to call her office again, but I did. She's supposed to call me around 1 p.m. Janet, did you ever have a colonoscopy? If you did, what did they find? Did you have this problem after? There are a few things I need to ask you, so please give me your email address. It's so important. The email I sent you went to the other address I did have for you. Thanks. Millie

> ----- Original Message -----
From: Janet Karam To: Multiple recipients of list ADHESIONS Sent: Wednesday, April 04, 2001 4:32 PM Subject: Janet's story

I recently undwent laparoscopic surgery for the removal of adhesions, gall bladder, and 4th stage endometriosis. The surgery was performed March 15, 2001 with Dr. Harry Reich and Dr. Jay Redan in Scranton, Pa. Prior to this I had abdominal surgery March,1999 and laparoscopic lysis of adhesions October, 1999.

The initial pain I felt was from polyps causing partial obstrucions and spasm within my colon. I had trouble keeping food down, was chronically bloated and constipated. I went through 2 months of testing from a gastroenterologist who was so convinced that I had Irratable Bowel Syndrome, that he ignored blatant findings on x-rays and tests pointing to polyps in the exact areas I indicated as painful. Eventually the polyps were found via colonoscopy. Within a couple of days, a surgeon cut a 9" midline incision in my abdomen, and removed 18" of large intestine.

One month went by, then the healing pain turned to a different kind of pain, and again food was not staying down. Because I still indicated the same area of pain before my surgery as I was now, and was experiencing the same symptoms, the doctors were even more convinced that I simply had IBS. Truth is, adhesions were causing pain and partial obstructions just as the polyps had. I wouldn't know it for another 2 years, but I was also suffering from a chronically inflamed gall bladder, and 4th stage endometriosis.

I had a series of tests done. 2 barium tests reported the "suggestion of adhesions", but my gastroenterologist and surgeon only told me that the findings were within normal limits. This is when I began an even more desperate search for help and answers, I knew my body, and that something wasn't right. I had heard the word adhesion by now, and was researching it on the internet, along with gall bladder disease, and other digestive disorders. I was pretty convinced that these were the things troubling me, and I began to search for a new doctor who would believe me, who could help me.

I would soon find out that this was no easy feat. I went to doctor after doctor, and was subjected to test after test. Most of the time I would get an IBS diagnosis all over again, a new prescription, the advice that I just needed to take Metamucil, or dismissal. I was told over again that my pain and digestive disorders were functional rather than mechanical. One doctor told me he thought I should just "get on with my life". It was suggested to me many times that I seek psychological help.

Finally, I decided I couldn't go on. I knew what I needed, and that was to get my adhesions taken care of. Although the IAS site was up and running, I still wouldn't find it for another year. My focus was completely on wanting to eat, and be relieved of my pain. I scheduled surgery with a laparoscopic surgeon for adhesiolysis. When the other doctors, and previous surgeons caught wind of this, they phoned the new surgeon via conference call. When I went for my pre-op visit with the new surgeon, he informed me of this call, and told me he would not be willing to perform my surgery until I had psychological testing from an appointed doctor. I was humiliated angry yet still determined. I knew I wasn't crazy...that this wasn't all in my head. I made the appointment for the next day for this psych testing with Dr. Lynn Smith. At the end a number is calculated on the Paindex factor, determining whether the patient's pain is legitimate, or psycho-somatic. I scored a 96, the highest score this doctor had ever seen, legitimizing my pain, and allowing for my surgery.

I had done enough research to know that there was a great chance that my adhesions would return after they had been lysed. But in my naivity and my determination to never have to seek another doctor, I did everything humanly possible to ensure that my adhesions wouldn't come back, and when they did return a month later, to manage tha pain and symptoms on my own. I tried stretching ,acupuncture, chinese herbs, western hebs, homeopathics, massage and meditation. Some of these gave me temporary relief of certain symptoms, but my overall condition became progressively worse.

After countless searches on the internet, I finally found the International Adhesions Society website December, 2000 and found the hope and help I had been looking for so long. I knew I was very sick for a long time, but I now understood fully the consequence of having surgery by a surgeon who did not understand how to treat adhesions. I knew I needed surgery when I found the IAS site, so I honed in immediately to the Adhesions Center in Scranton, PA. I scheduled surgery almost right away, though I had to wait 3 months to have both Dr. Reich and Dr. Redan present. Had it not been for the love of my sweet Joel, my family and my newfound IAS friends, I never would have made it...every ounce of support was vital.

I had a tough time getting ample pain medications until one of the IAS volunteers, and Dr. Redan called my family doctor to intervene. They helped him understand the pain of ARD, and the right of a patient to receive adequate pain medicines. There would also be struggles with the insurance company later. I am currently working on a 3rd level appeal after being denied pre-certification, and an expidited appeal.

As I write this, I am going on 3 weeks post-op, and feeling better than I have in a long time. I still have some healing to do, and some weight gaining to do. Due to the my ilinesses, I was unable to eat solid food, and had dropped down to 100lbs. I am able now after 2 1/2 years to eat just about whatever I want...what a joy it is to taste food again! I cannot describe the relief of having my health returned to me. I had suffered with endometriosis for 20 years, and just thought my symptoms were normal. In the end the endometriosis was so severe that it had meshed my uterus, bladder rectum and vagina altogether...no wonder nothing worked down there!

In some ways I feel better than I have all of my life. I never would have become who I am without suffering from ARD, my eyes are wider, my life is richer, and my heart more caring...even in sickness there can be many lessons, and many gifts. My wish is that everyone could receive excellence in healthcare from kind, concerned and educated doctors, and for this type of care to be prevalent rather than scarce. I will do everything in my power to help our voices be heard.


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