Hi All, I have been reading these posts for about
8 months trying to figure out how to heal. I was diagnosed with Ulcerative Proctitis in 12/2009. My symptoms were mostly mucous and some blood. It followed a few month course of antibiotics in the form of acne skin cream! Didn't realize til I read the label that it was the antibiotic clindamycin and the side effects included colitis. I was scared, anxious, losing sleep.
I was put on Canasa 1000mg nightly for 3 weeks. The Canasa stopped my symptoms, but after 2 weeks off the Canasa my symptoms came back even stronger. I went back on Canasa but realized I needed to also get to the root of the problem, the bacteria imbalance caused by antibiotics. At my urging, my GI prescribed DS (double strength) VSL#3 probiotic packets 4x day for 6 weeks, 1 a day after to maintain remission as directed. [Check the studies, these probiotics when taken CORRECTLY (as described above) have great published results.] I hated that I was reliant on meds (Canasa) and committed myself to serious diet research along with the probiotics so that I could taper off the meds slowly while I fixed the true root of the problem. [The meds don't solve this thing, what they do is control symptoms and make a lot of $$ for the insurance companies (who sponsor the studies that influence all of our doctors, BTW). They are not a cure.] I followed my GI's advice about
going off the meds- he told me going cold turkey off the meds is a bad idea, even if its just mesalamine, you want to slowly wean and see how you do.
After much trial and error, here is what finally got me into med-free remission:
(1) Vitamin E enemas. Let me remind you that I was diagnosed with proctitis, so irritation only in my lower rectum, which is probably why Vitamin E enemas worked for me to help me heal and reduce inflammation:
Buy a baby's ear syringe at your local pharmacy. Buy vitamin e 1000mg tablets (they are easier to use than smaller ones) and use 4 at a time for each retention enema (its easier to cut them with a small scissor as opposed to a pin). You can build up to 8 at a time, but after improvement, I went back down to 4 a day. I use vitamin shop vitamin e because it has no SCD illegal ingredients and has the tocopherol combination suggested by Sheldon, another blogger who had lots of success with this. I had the best results when I stopped mixing the vitamin e with distilled water and just used the pure vitamin e by itself. I would use the Canasa at night, and vitamin e after I used the restroom in the morning. Lay on each side, lay on your back and your front, let the vitamin coat your insides. Once I was off the Canasa (see #3), I use the vitamin e every night instead of canasa, its easier to keep in at night. Remember be careful with the enema, and do not squeeze hard. You need to be gently to yourself to heal yourself. ALSO don't overdo it with the vitamins, but some natural antiinflammatories like fish oil or curcumin are OK.
(2) DIET IS EXTREMELY IMPORTANT. I decided I needed to get off the meds after their side effects started kicking in (twitches in my abdomen, joint pain, hair loss etc – which ended by the way as soon as I began tapering, so don’t believe the doctors when they say its from your UC!! Read the side effects of all of your meds). I started the diet kindof drastically, but it helped a lot. The SCD diet was the answer for me, and led me to complete remission med-free (see #3). When you start you are supposed to start with softer foods, and build up to the harder foods, so just keep that in mind if you do want to start the SCD diet.
(3) I started tapering off Canasa. Taper off meds slowly, and keep your doctor informed. Meds mask your symptoms, but your symptoms can be an indicator of your progress, so its important to also learn from your symptoms. My doc said that I could take the Canasa 1000mg every other night if my symptoms were under control. [After looking into the absorption rate of the med and the amount of time it is in your body, I decided that I would take 500mg each night as opposed to 1000mg every other. Problem – they don’t make Canasa 500mg anymore! Instead I got a razor blade, ran the Canasa 1000mg under warm water while in the wrapper, cut it lengthwise from top to bottom while in the wrapper, smoothed any rough edges and inserted only half a night.] I was surprised and relieved to see that my symptoms didn’t increase. I would see mucous every here and there on the 1000mg, and it did not increase when I downgraded to 500mg a night. My doctor said every time you taper down, keep the dosage consistent for a few weeks (2-3) so you can see if symptoms return, and if they do, just go back up to the previous dosage. Taper at your own rate. Soon I was alternating 500mg one night, and approx 250mg the next (1/4 of a 1000mg Canasa), which I did for 2 weeks. Then it was 500mg every other day for about
2 weeks. On the off night, I was using the vitamin e retention enema at night. Then I just stopped the Canasa and switched solely to vitamin e retention enemas each night, still taking my VSL#3 (at first 4X a day for 6 weeks, after that 1X a day according to the published studies and my doctor's advice).
(4) Finally to come into full med-free remission (no more sightings of mucous/blood). I modified my diet so that I had extremely soft BM's for like 2 weeks (some people do a juice diet to achieve this). It gave my system a rest from scraping and scratching and by the time I was back to SCD normal foods I saw no more blood. I guess the "break" from hard foods allowed those sore areas to heal.
UPDATE: It as been over a year and I am still med-free. I stay on the SCD diet about
95% (but was 100% for about
6 months) and I am fine.
Also, on a side note, Canasa made my hair shed for 3 months after I stopped taking it. It was mortifying, I thought I would go bald. It did stop shedding and grew back and all is normal, but then again I was lucky enough to get off the Canasa the same month my hair started shedding.
Post Edited (KatieinBrooklyn) : 6/17/2011 10:40:04 AM (GMT-6)