Diagnosis of UC didn’t come until I was 40. I took two rounds of Accutane in my 20s, and my system hasn’t been the same since. I believe this is one of the main causes of my UC. I had a bad flare 3 years ago that took away my energy and fitness. I can’t wait to feel strong again! My goal is to be off all meds with the exception of low-dose naltrexone. I have had UC for many years and taken a great variety of meds, but I really believe prevention is the best cure through diet and lifestyle for me.
Some more about her:
I love to ski, which is a bit of a problem when you live in the western suburbs of Chicago. I grew up in Colorado.
I have two boys and a husband who love sports, so we have an active household. Football is currently the focus of the season, and we have the tv on with games a lot. I am focusing on getting back into shape, so I try to find time to workout. Watching my athletic kids and all those athletes on tv is inspirational!
In remission, thanks to a paleo diet and low dose naltrexone.
Help Finding Imuran
I was in the process of being weaned off imuran/azathioprine, when I went to refill a prescription and found that the supplier hadn’t “supplied”. This was 1 1/2 weeks ago. I was going refilling through Walgreens pharmacy. The pharmacy still has none of this drug. Does anyone know of a pharmacy that does? I live in the western suburbs of Chicago.
I was down to 150 mg/day from 400 a while ago. Has anyone else had experience getting off immune suppressants?
When I was first diagnose, I had a horrible GI doctor. After a colonoscopy, he told me I had ulcerative colitis and to take the meds he had prescribed, which was Asacol. I asked him to tell me more about what I had, and he said “you have ulcerative colitis,” and he walked out of the room. I never went back. After eliminating my symptoms with Asacol in about 4 months, I stopped taking the medication. Three or four years later I started experiencing symptoms again. I told my OB/GYN about my dilema and he recommended a different GI to me. That was the best recommendation ever. I still see him to this day. He put me on Colazal and I cannot remember what else. I did well, but eventually stopped taking that medication.
Then, 3 years ago, my symptoms came back and for months I tried controlling them with diet alone. When I finally went to my GI he was stunned at my condition and said that 95% of my colon was diseased. It had never been more than 25% before.
What I didn’t know was that the longer you let the symptoms go, the further up your colon the disease travels.
I have often thought of how helpful a little info like this would be to other sufferers. There is very little explanatory info out there that isn’t produced by a pharmaceutical company. Anyway, I was on predizone, cort enemas, Azulfadine, then they added a synthetic steroid, which made me blow up like a balloon. They also added imuran.
About this time, I went to visit my sister’s physician in Colorado, who also had UC. He added low dose naltrexone to the mix. Since taking this, I have noticed that I am more resistant to illness and my rotten hayfever that required antihistamines 5 months of the year is almost non-existent. It resets the immune system while you sleep, working with the lymphatic system. For anyone with an autoimmune condition, this is a fabulous solution to a difficult problem. It must be compounded, but it is cheap (which is why many doctors know nothing about it and why no pharmaceutical companies are researching it or promoting it). I pay $30 per month at my local pharmacy for it. If you search on low-dose naltrexone, you will find lots of information.
This physician is now in Oregon at Ventana Wellness, but I still “see” him through phone consults. On a side note, my GI is convinced that the imuran put me in remission, but my Oregon physician and I both KNOW it was the low-dose naltrexone. We’ll let my GI think it was the imuran, though, because it makes him feel better and he is a wonderful man.:)
Medications / Supplements:
Currently on Azulfadine, folic acid, low dose (4.5 mg) naltrexone (LDN)
written by Camille
submitted in the colitis venting area