Re: Merri Ellen

From: Merri Ellen (
Mon Oct 25 19:45:13 1999

Tina, Thanks so much for the forum reply! I have been very discouraged over the weekend. The Levbid was as you say...worthless. I am expecting a return call for a new med from the GI tommorrow.

I was definitely awake for the colonoscopy. They were surprised but yes I stayed with it. I don't trust people with knives, scopes or blunt objects...I wasn't going to shut my eyes for love nor money! :o) It was uncomfortable at times but the over whelming pain was coming from the gall stone problem. Kind of like breaking your toe and then slamming your hand in the car door...which one is causing the most pain?

My mother had Chrohn's disease resulting in an emergency ileostomy at 34 years old. Her bowel was full of ulcers and she had severe diarreah, pain everywhere and a fever of 102. Her GP sent her home with a diagnosis of THE FLU! We were 12, 9, 8 and 5. We found her on the floor when we came home from school. Blood was everywhere. It was something that I will never forget. She stayed in the hospital for 2 months. Hyper-al in the vena cava, weighed 72 pounds. They missed a section and had to go in again 18 days later...the ostomy was just pouring blood into the bag. My mom got 25 extra years out of that surgery but the adhesions were terrible. She recently died from lung cancer that had metastisized. Not only have I endured this adhesion problem but I also watched my mother struggle with it for years.

Once the hysterectomy was done I did not return to the GYN. I was instead bounced to a GI surgeon who refused to admit that adhesions can attach to internal areas causing pain and damage. I was a naive, doctor shy 23 year old girl. If they said I was having imaginary pain...what could I do or say. It seemed hopeless and I just gave up on the medical community. To be honest...I was involved in a domestic violent relationship, which almost cost me my life. VICTIM was written somewhere on my forehead, I just know it was! Well...somehow God gave me the strength to break the cycle of violence and I survived. And I vowed I would never let another person ever hurt me again...including doctors. This is a very big step for me to even consider entering a doctors office let alone letting them examine me. To them it seems like such a small thing...but to me it is a really big deal! My family knows that this is a dire situation, otherwise I would have suffered quietly and said nothing.

I have played games with this bowel rollercoaster for 17 years! I have to have just the right balance of water, fiber, veggies, degree of stress, rest and exercise...and oh yeah...the moon has to be in the first quarter and the color blue! I know many of you can TOTALLY identify with that description! Recently I have switched over to a modified diet. I don't eat red meat, sausage, pork, or ham. I eat vegatarian 4 days a week and chicken or turkey on the other three. I stay away from food preservatives, carbonated drinks and try to limit caffeine. Does anyone else have a dietary routine that keeps things moving without going 60 miles per hour?

I will keep you informed as to what the torture chamber reveals...barium workups are to be done next. Thank you for your encouraging letter. Just having people to talk to that understand my life is very comforting. I have never heard of another person who had to lay down after using the toilet. But just today I read a post from someone who has to do the same thing! I almost could'nt believe it!

Take care of yourself and thanks again!

At Mon, 25 Oct 1999, Tina Shelby wrote: >
>Merri Ellen,
>So sorry for taking so long to get back to your letter - as I told Chris - I
>have had to be away from my computer for a few days and am now trying to
>catch up.
>I'm impressed with your GI specialist - the fact that he even recognized
>that adhesions can cause pain is encouraging. I don't know how old you are
>but the recommendation for GI workup in relatives of patients with cancer is
>around 10 years. In other words - if your mom was diagnosed with colon
>cancer at age 50 - it is recommended that the children start being checked
>Did you have to go through your last colonoscpy awake? The reason I ask is
>you express concern about him pushing the scope through areas of resistance.
>You should not know if that happens - or at least not remember it.
>As far as Levibid - the GI docs in this area have stopped using it all
>together because in his words "its worthless" - We recommended using Levsin
>SL. Although you took it 4 times a day - you can also put one under your
>tongue for quick relief of spastic bowel problems. But again - keep in mind
>- if the internal colon structure has no obvious abnormalities - the catch
>all diagnosis is irritable bowel syndrome.
>As far as adhesions forming inside organs - ie the colon after a colon
>resection - I never say never - but I will say I have never seen it nor
>heard of any that did. The most common complications from a bowel resection
>are a leak or bleeding. Adhesions can and usually do form around the outside
>of the resection site. So in your case it is very likely that that the bowel
>resection site may have an adhesive stricture on the outside causing bowel
>distention at the site - causing pain and bowel problems.
>I will also add that yes it is possible for the scope to rupture the bowel -
>but that is usually not a problem unless IBD is present.
>I hope this helps -

Merri Ellen

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