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Irritable Bowel Syndrome (IBS) Message Board
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Old 09-06-2001, 08:37 PM   #1
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Join Date: Jul 2001
Location: TX
Posts: 9
Gena HB User
HELP - failed surgical & other treatements!

My friend Kimmie needs your help!

I have offered to post her story on as many sites as possible in the hopes of finding even one of you that have the same symptoms and/or can offer her some help.

Hereís Kimmie:

"I am looking for people all over who have the same problems that I do because I want to know if this is related to the endo that I have or some other intestinal problem. The doctors are stumped in my case. Has anyone out there experienced these types of symptoms with the loss of weight? Here is my story: I have stage IV endo that has invaded my bowels and my bladder. I have had 8 surgeries and saw big endo specialists who are stumped. I do have lots of adhesions but I did not have these problems until my surgery in 1999. I woke up from that surgery knowing that something was wrong. I did have an ileus (obstruction in 1998 with my laparotomy). I have had extensive testing done, colonoscopy, upper GI with small bowel follow through, bowel marker studies, stool analysis, food testing, sprue testing for celiac disease, and all they can tell me is that my intestines are sluggish and my stomach is to fast. I have a motility disorder without a name or place to go for help. I did show an overgrowth of bacteria, severe dysbiosis, and a candida overgrowth, which, is quite common in women with endo. They put me on antibiotics to clear the bacteria, Nizoral for the candida overgrowth and a special diet. While on this program I developed a vaginal staphyloccus Aureus infection and nearly died. Apparently it is very rare and was the cause of toxic shock syndrome that killed years ago (I do not use tampons because of the pain and also because my tubes are filled with fluid). So they are stumped by that. The doctors have told me that my bowel situation is so bad that they are considering an intestinal transplant. I have a hard time eating and keeping my weight on due to bloating, fullness, gas and pain. Every time I eat I feel like a bowling ball has entered my system and th epain is horrible. I get constipated with my periods and when I eat red meat. I have tried multiple treatments for this with little or no success. I have painful bowel movements and feel like a toxic wast dump most of the time. Food is my enemy and not my friend. I have lost so much weight that I am on Isocal liquid supplementation because in June of this year I was down to 88 pounds. I have gained back 17 pounds on the Isocal but I am miserable. I have been turned down by Redwine, who is world renowned for endo GI problems, because he said that I had failed all conservative surgical treatments. I have seen multiple nutritionists and have failed their treatments as well. I am frustrated and could use some brainstorming and support. I have a heck of a time getting motivated to eat and the Isocalis so horrible that I can only tolerate so much.

Talk to me . . . Kimmie"

 
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Old 11-02-2001, 05:05 AM   #2
 
Join Date: Nov 2001
Location: Florida
Posts: 0
Brienne HB User
Re: HELP - failed surgical & other treatements!

I haven't quite been through what you have but I do know how you feel. I have been dealing with endo and IBS since I was 12. I only recently found out there was a connection and it was through my own research, not my doctor. There have been many times that I swore that I would do ANYTHING to get rid of the pain. I just kept thinking that noone is supposed to live like this. Few people understand and I am soo tired of people assuming I am have an eating disorder. I also am not able to use tampons because of the intense pain!! And like you, I have chosen not to eat at times. I was on a liquid diet for a while because I just couldn't function and eat. Right now things are soo bad that I had to drop out of college because I was just too sick to go to class. I am having my first laperoscopy on Nov. 20th so I guess I will find out what stage of endo I am in. I am really scared that they are going to give me the same options as you have, like completely rebuilding the intestines.
I can't offer you a good doctors name but I can offer understanding and sympathy.
Question: I have a new boyfriend and I just recently told him about the endo but I am soo embarrased to explain the IBS. I usually just tell people "I get sick" and let them draw their own conclusions. Any advice on how to tell him?

 
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