Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 Hi Tom and welcome to the group. Wow, your situation certainly sounds very painful. I don't know what would help, but a couple of thoughts came to me while reading your message. Have you done any research into what nutrients are needed to form the lining of the colon? Is it possible that somebody knows and put that info on the internet or in medical books? If there is no research on the rectum, maybe research on the lining of other organs would provide useful hints? My mom has trouble with the lining of her bladder wearing away. I've wondered if she would be better off if she ate a different kind of fat. Right now she uses canola oil and Benecol margarine. I've wondered if some fats were more conducive to forming and healing tissue? Maybe coconut oil and/or all natural cultured butter for cooking? Cod liver oil and krill oil for supplements? I MAY BE WAY OFF BASE. I haven't done much research on it because my mom wouldn't change the way she cooks and eats anyway. Nourishing Traditions (book) has some info on fats. It is a combination textbook and cookbook (NOT SCD, so you probably wouldn't want to buy it but I got it from my library.) It has 16 pages of info on fats, so I can't write it all here, but I highly encourage you to read it. (It is a GREAT book, but again, not SCD. It specializes in nutrient dense food). One of the authors also wrote a book on fat that I will buy when I have the $. When I do buy it, if it has anything useful I will post a message to you again.) The other thought that I had may sound even more ridiculous, but I have to write it anyway. There is a fistula hospital in Ethiopia, started by two Austrialian doctors. (Fistula's are common in Ethiopia because the women are married so young, too young for their bodies to be having babies, and they end up having fistula's as a result.) Is it possible that you could correspond with the doctor there and ask for advice? It seems like doctors who deal with ONLY fistula patients would have more experience for difficult cases like yours rather than doctors who do fistulas only part time, which I am assuming (but may be wrong) is the case with your current doctor. The hospital name is Addis Ababa Fistula Hospital located in Addis Ababa (the capital of Ethiopia). Their website is fistulafoundation.org. There is some medical info linked to that website. Click on " what is fistula? " and then " doctor's corner " . Wow, I really wish that I could help you more. Oh, you asked for prayers and I can do that! I will pray for your healing. Best wishes, Carolyn SCD - 12 days > > Hello everyone, > > My name is Tom Coburn. > I've bad CD over 9 years now, and I run a discussion forum called > http://www.crohnsdaily.com where I give SCD and Crohn's Support > > Anyway, I've been on SCD for 3 years now, at one time I had symtoms pretty > much from the throat on down, all my symtoms went away after the first 6 > months or so on SCD, > > but then a year into SCD, a Fistula suddenly appeared out of " nowhere " > > trying to get it to go away for the last 2 years has been really trying.. > 3 years now, and the Fistulas have now spread. I now have 3 external, and 1 > internal Fistula. At first they looked like hemaroids, this internal one > is hard to desribe, > its umm, like a " hole " inside the rectal cavity somewhere, so as BM passes > down thru the upper rectum, (its like a " leak " I guess would be the best > way to describe it, a rectal leak) it " leaks " into both butt cheeks after > every BM, so then I keep having surgery to drain the stuff out, but then it > fills back up again and they have to " poke " it with a needle. Finally, they > put a " seeton wire " in there until they can fix the Leak. > THey tried to fix the Leak surgically by doing a procedure called a " Flap " > (where they try to graf some skin over the hole to stop the leak) but it > didn't work, so now there trying " Remicade " hoping that'll close up the > Leak. > > I've had 2 Remicade infusions so far, and don't notice any difference so > far, but it could be too early to tell who knows.. The infusions are > $9,000 a shot! and my insurance covers maybe 80% of it, but thats it, so I > owe the hospital 80% of $9,000 + the $1,500 hospital bill on top of that, > for the last 2 infusions, which I have no clue at all how I'm going to pay > for, but i don't know what else to do to stop this leak > > its painful beyond belief, you guys just can't immagine I've been > fussing with it for 2 years now, some days spending literally " days " in the > bathtub crying until the pain goes away, and at the same time trying to have > enouch courage to stand up for 8 hours at work without screaming at the top > of my lungs every day... Been dealing with this for 2 years now, > > and I swear, I will try anything right now, I don't care what, to get this > leak to go away its worse then any pain I've ever experienced in my > life, worse then the Cathetor, worse then the tube up the nose without > novacane, its just beyond what I thought any human can tollerate pain wise, > > > if nothing else, I could really use some prayer right about now. I just > want to leak to close please > > take care, > > Tom Coburn (bubazoo) > CD 9 years > SCD 3 years > webmaster: http://www.crohnsdaily.com > > > Quote Link to comment Share on other sites More sharing options...
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