Greetings. You have definitely made the right decision to pursue this treatment. I came across this forum back in September of last year (2005). When I first read Sheldon's testimony on how he cured his UC, I was very excited and skeptical at the same time. Let me begin by telling you our story:
My 9 year old son was diagnosed w/ UC last July, but had been suffering for 9 months prior to the diagnosis. Upon diagnosis, his Pediatric GI Doc prescribed 2400mg of Asacol daily. My first reaction when I read the prescription was that it had to be wrong - who would prescribe a 70lb kid that much of an asprin-based medication daily? I looked for information on the drug on the internet, and found that it has never been tested for use on children. I called the Dr. and she assured me that the dosage was correct and that she uses the medication for all of her IBD cases (who are all children) with great success. I reluctantly started the medication. I was told that his symptoms would start to improve within the first two weeks. I was also told that my son has no restrictions on his diet because diet has no impact on the disease.
The improvement I was waiting for never came. He continued to have 6 - 14 stools daily, and the pain and urgency of them was severe, (in retrospect we determined that this increased upon starting the Asacol)though there was no visible blood present. He had a number of accidents (one of them at school), and the disruption and limitations he had because of the disease were next to unbearable. Four weeks after starting the Asacol, my son became violently ill. It started with severe stomach pain and a little blood in his stool, and in a short time (2-3 hours) progressed to his having a 105+ fever and stools of pure blood. Of course, he was admitted to Children's Hospital where he was quarantined in case of infectious disease (even though they were aware of the UC diagnosis). He was put on a low-residue diet, and was given 45mg of Prednisone daily through his IV; they continued giving him the same dosage of Asacol that he'd been taking. (Prednisone really is a wonderful drug for UC patients when they have a flare-up, but only for short-term use because of the risk of Prednisone dependence and some pretty nasty and severe side-effects.) The fever went away after the first 24 hours on the Prednisone, but he was still kept in the hospital because all of his stools still contained blood. On the fourth day, there was no trace of blood in his stools, so they sent us home with a presciption for Prednisone (40mg daily) and told me to contact his GI doc for the weaning schedule. When I called her, she told me to cut the dosage by 10mg every 5 days, and then 5 mg for 5 days, then 5mg every other day for six days. I followed the weaning instructions to a T, and sure enough on the day of his last dose of Prednisone, he flared up again with blood in stool and fever. I took him to CH ER again, and they gave him a prescription for 20mg of Prednisone and sent us home. Our GI Doc gave the same weaning instructions, and two weeks later, my son was having pain and frequent stools even while on the Prednisone. GI Doc instructed me to increase the Asacol to 3200mg daily, which I did for about 4 days but dropped him back down when I realized it was making things worse. He flared again on the day of his last dose on the weaning schedule of the Prednisone. This time, I didn't make the drive to CH ER, I just called the GI fellow on call. I explained that I was concerned that the Asacol may be doing more harm than good, and he told me (off the record) to take him off of it if I really believe it is part of the problem because it is one of the lesser drugs they use to treat severly active UC. He put him back up on 40mg of Prednisone, and once again told me to contact our GI Doc for weaning schedule. At this point, I decided to find a new GI Doc and that it was time for me to move full-force forward with the Vitamin E treatment and cure (with my ultimate goal being getting him off of the Prednisone completely).
I did find a new GI doc for my son who we like very much. We weren't able to get in to see her until (11/14/05) my son was down to 5mg of prednisone every other day (in following the weaning schedule from the 3rd flare-up). She spent almost 2 hours taking information and examining my son. She was very pleased with his success in following the diet, taking vitamins and pro-biotics, but I didn't have the courage to tell her about the enemas (though I will definitely tell her now that I know how much it helped my son). At this point, he was having only 2-3 stools a day without visible blood, but upon examination she did find microsopic blood present in the rectum. She suggested that I keep him on the 5mg every other day, and scheduled an appt to see him in one month. We went back to see her on 12/21/05 and he was doing great at that time with 1-2 stools daily. She (after some persuasion on my part) agreed that we could reduce the Prednison to 2.5mg every other day. Unfortuantely, my son got sick the very next day. He had a throat infection and a low-grade fever that was accompanied by a small amount of blood in his stool. The GI Doc explained that other illnesses can sometimes cause UC patients to have minor disturbances and even flare-up. He was put on anti-biotics for the throat infection, and up to 10mg daily on the Prednisone until he recovered from the infection. I got him back down to 5mg every other day within a week, and took him down to 2.5mg every other day during the first week in January. I finally took him off of the Prednisone completely at the end of January.
I, like you, initially had reservations about Sheldon's procedure. I found Sheldon's posting a few weeks after my son's first flare-up. Since I knew very little about vitamin E, and it's positive and negative side effects, I started by calling our Pharmacist to find out if there are any drug interactions with the medications he was taking at the time. The Pharmacist told me that there were no interactions, but that he wouldn't give 400 IU of vitamin E to a child because it could cause cardiac problems (I've found no research that supports this claim), and that I should ask our doctor before starting. I called our regular Dr. and she told me that it is fine for him to take the vitamin E. I started the diet and enema just two days before he had his second flare-up, and stopped when he flared. I started my son on the procedure again about 10 days later (10/07/05) and have been following it religiously ever since. He had another flare in the middle of October, but I didn't stop the procedure even though he was put back up to 40mg of the Prednisone (that was also the time when I stopped giving him the Asacol). One additional thing I discovered during our experience that I think UC sufferers should consider is that part of the reason they lose weight is because the subconsciously eat less for fear of the frequent diarrhea. If you are following the procedure correctly and don't have good stool form, try eating more! Eat more rice and potato, and definitely eat as many veggies as you can!!!
My son has gotten progressively better within four short months thanks to Sheldon's procedure. I just discontinued the enemas around the middle of January. We are still following the diet for the most part, and he's still taking the vitamins and pro-biotics. He's completely off of the Prednisone now, and is doing wonderfully. His stools became firmer and more normal each time his dose of Prednisone was lowered (this is true during final weaning after the third flare-up only). He has one very normal stool daily, and sometimes even skips a day (kinda like the rest of us who don't have UC!). He's gained a few pounds, and actually has color in his cheeks now!
I'm not going to lie to you - there is nothing easy about following the diet. What I can tell you is that it's well worth a few months of sacrifice to have a lifetime of good health! I can't attest to how it will work long-term, but Sheldon has been symptom-free for more than 20 years and that is saying something. There is a lot of new medical research into the use of pro-biotics and combo vitamin/nutrient supplements in patients with IBD. They are actually coming up with prescription pro-biotics that will be available in the very near future (if they aren't already); I've heard rumors that they will be VERY expensive! I doubt the Pharmaceutical Industry will ever find a way to make money on healthy foods, but you never know. Whatever treatments they do come up with, I'm sure they'll cost you an arm, leg and your first born! I find it very frightening that it's taken Medical Research this long to figure out (only some of) what Sheldon discovered over 20 years ago on his own. Guess they were just waiting to find a way for the Pharmaceutical Industry to get their piece of it!
Anyhow, I could go on and on about our experience and success. You should read my previous posts which talk about things I've left out of this one (questions, concerns, whining, test resuts, etc.). I will continue to post updates as long as I am able so that others will know that this really does work. I hope this information helps you to stick with it. Good luck, and God bless!!!