I have Crohn’s disease since many years and I have actually only had one flare up during my entire life, and I’ve been symptom-free ever since. I don’t have any PSC-symptoms either, so I don’t really know if vanco is working. I’m going to take new blood samples in 3 weeks, and I hope my LFT:s have decreased.
I’m from Sweden, and kids here are primarly treated with a 6-8 week exclusive enteral nutrition diet (instead of steroids). In plain English, this means that kids only drink nutritional supplement drinks for 6-8 weeks (in other words, they totally abstain from solid food). The theory behind this is that the intestines “rest” when you don’t eat any solid food, and thereby get time to recuperate. I got this exact treatment when I hade my one and only flare up as a kid, and it worked wonderfully and I’ve been symptom-free ever since. This is a very unorthodox treatment for American doctors, but it is totally risk-free since the only thing you do is abstain from solid food and anything containing fibers for 6-8 weeks. I’d certanly recommend trying this treatment before doing something drastic. Keep in mind, abstaining from solid food is a huge mental challenge and your son has to be 110% motivated in order to complete such a treatment.
On a side note, in Japan, adults are also treated with exclusive enteral nutrition.
Thank you Andreas. I totally agree with nutrition part and doctors here in US don’t think nutrition plays any role with digestive diseases. My son is an adult and he is totally going with what doctors say about nutrition or don’t say. Unfortunately, in last 17 years no doctor has recommended him to see a nutritionist. I so much wish some one would tell him to go on liquid diet or look at his diet. We have tried to talk about this all these years but it is now moving to colectomy if vanco doesn’t help. It is looking like I am bashing the doctors but I know their hands are tied, it is the whole system which heavily favors pharmaceuticals ONLY approach while for complex diseases like these multi pronged approach should be applied to improve quality of life.
The fact that the American system favors pharmaceuticals is both a bad and good thing. I have to fly to the US and pay everything out of pocket in order to get a hold of vancomycin, since doctors in Sweden are too scared of prescribing it.
If you’d like to try it, you could visit a doctor that’s more posetive towards it. You could also try it out yourselfs, since it ain’t illegal to abstain from solid food. Keep in mind though, it is very important to not abruptly change your eating pattern. You should change it slowly over the course of a week.
-What does the 6-8w liquid diet consist of?
-Why are you going to the us for vanco? it is cheaper over here in Europe and you can find prescribing physicians.
I’d read many on Vancomycin have UC resolve as well as PSC stop progressing or reverse even. As I’ve dysplasia in a area of my colon I’m praying for this to happen. As I wrote elsewhere, my colonoscopy and forty biopsies three months into taking VO showed no change.
I read in another group someone said her UC improved from 3 (severe) to 1 (mild) on vanco. I can’t find the thread right now but some one said he/she had dysplasia and it reversed on Vanco treatment but I can’t remember the timeline. I hope you get good news after your next colonoscopy.
The exclusive enteral nutrition (EEN) treatment consist of basicly only drinking nutritional supplement drinks (such as THESE ones) instead of eating food for a certain amount of weeks. The nutritional drinks used should NOT contain any dietary fibers. This treatment is usually prescribed by a GI, and administered by a nutritionist.
I’ve haven’t heard of a doctor that prescribes vanco in Europe to other people than his/her family members or friends. Do you mind sharing the name of a doctor that prescribes vanco in Europe?
