i definately can relate with all of this. i basically drink only ensure, w no fiber, and w extra protien, and even then i get obstructed. it doesnt seem to matter that i only drink liquids, its very frequent and very random that i am in the hospital (on suicide watch) because im in for yet another small bowel obstruction. im a nurse and i cant work because i am in the hospital as a patient so much. i have attempted suicide, and i feel like no one can help me. my surgeon in salt lake has never heard of "spray gel" which they have been using in germany for 4 years as far as i know, and it is supposed to work better than the seprafilm they have been using on me every time i have surgery for lysis of adhesions. my husband left me (he couldnt "take it anymore", like it is something i can control! what happened to the "in sickness or health" part of the marriage vows?) hes seeking custody of our daughter, because my "Medical Condition" is so unpredictable. i can go from being fine to projectile vomiting and excruciating labor type pains w/in a half an hour. i feel helpless and VERY HOPELESS. in the meantime, ive had to sell my house, cash out my retirement of $48,000 to live on and pay medical bills. ive applied for dissability, my best friend committed suicide when i was in the hospital, and i was not able to even go to the funeral cause i was still in the hospital. i use to travel, hike, kayak, run marathons, attend church and teach preschoolers, now i have no energy and also have to plan to be near a hospital. i have 5 kids, 2 have been tested for Gardners Syndrome and are negative, but i still have to have the other 3 tested. im so scared they might have it. that is what keeps me alive.....i go to salt lake the 21 of august for examination by my GI doc, and hopefully my surgeon can help me figure this all out when im there. Ive been flown to SLC at least 20 times in the last 3 years because i live 10 hours away (no exaggeration either) and no one here will even touch me surgically except one sweet female doc, who is placing my 3rd portacath on the 11th since i have no more veins left. PLEASE PLEASE if anyone can help.......sometimes i think i would have been better off not knowing i had Gardners Syndrome, (with its 99.9% colon cancer rate) and then i could have died a noble death fighting a tumor. i think if i got cancer at this point in my life i would just want palative care. Julie Hix Klimko
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Date: Wed, 6 Aug 2008 03:19:11 -0500
-- ________________________________________ From: shoover2804@comcast.net To: adhesions@mail.obgyn.net Subject: Re: Will this never end?I too would like to see more national coverage of this disease. It is far more serious than what the medical community takes it for. I have written to Oprah and Dr. Phil but have never heard any response. I wish Dr. Oz would give it some attention. There are some really good doctors who are not afraid of tackling these adhesions however it is very cost prohibitive for those people who don't have insurance or who do have insurance that won't support out of the network treatment. I have suffered with adhesions for 21 years now. I have had one 3 and one half hour surgery to free them up some 10 years ago...they are back full force and now I try deep tissue massage as well as really watch my diet...I do best with taking lots of probiotics and soft foods...I always end up a mess when I go off the wagon to eat normally.
>-------------- Original message -------------- From: krdfld@aol.com Start composing a letter to Oprah with a brief history about yourself and the lack of medical help and education. I will try to get an address or e-mail we can send them to and let everyone know what it is. Kathi
-----Original Message----- From: jmoore4877@aol.com To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net> Sent: Sun, 27 Jul 2008 6:53 pm Subject: Re: Will this never end? I am in. Let me know what to do!!!
-----Original Message----- From: carynlruzich@comcast.net To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net> Sent: Sat, 26 Jul 2008 10:24 pm Subject: Re: Will this never end? I think that's a great idea! I'll write Oprah because it's going to take a high profile celeb or show to do this disorder justice. How about 20/20 or one those national news shows. Until I found this site a few months ago, I really thought I was pretty much alone. My mother had a lot of problems with adhesions from several bowel surgeries, but I thought that may just have been hereditary. Now I know it's a much bigger issue and the number of people suffering is unacceptable. Not only does our quality of life suck, but it hurts our loved ones, make life so much harder for us to function in the world and medicine has little to no help for us. And I think it's time something be done about it.