I'm new to this board, hoping to chat with some other people suffering from ulcerative colitis, hopefully get some tips and advice.
Basically, I was diagnosed with proctitis a few years ago. Had bloody stools and had 6-10 bowel movements per day. Doc put me on mesavant (1 pill a day) as maintenance and salofalk suppositories for flare ups. Things have been pretty steady since then but have gotten worse in the past 2 months. I want at all costs to avoid going on stronger meds, but right now I'm having urgent diarrhea everyday, lots of blood in my stool, and lots of gas. I dont even think the mesavant is actually doing anything. I went to see a naturopathic dr and she recommended I cut out gluten, dairy, red meat and peanuts for the next 3 weeks. Its only been about 4 days, but I havent seen any improvement at all, and I dont think that gluten/dairy are my problems.
Feeling a bit desperate right now, if anyone has any tips on things that have worked for them, please let me know. My diet is pretty clean, lots of lean protein, veggies, good carbs like oatmeal, rice, etc. I tend to avoid fruits because they make me have to go to the bathroom more often.
I will tell you what helped me. I have lived with UC for 2 years. I have been in remission for the last 6 months. I had moderate to severe UC. Bad days BMs 8-12 times a day. Spent half my waking hours on the toilet on bad days. Suspicious of everything I ate. Severe cramps and nasuea. Scope and blood test with the diagnosis delivered by the nurse practitioner (doctor always booked out at least 2 months). One day the normal NP was on vacation so got to see the other NP. I was on 2.4 g of Lialda a day. Did a course of prednesone which didn't help the UC (made the aches and pains go away while I trained and raced Mtn bike s(hobby) (surprisingly I didn't have to go when I was riding (was in the porta potty until the race started though). The normal NP was guiding me toward remicade. Didn't want to do that so when I saw the other NP I asked if there was anything else? He said VSL#3 (probiotic) had some success in limited clinical trials. It didn't work as advertised just taking it alone. Got to thinking the best I felt over the two years was after the colonoscopy. Colon seemed to heal a little. So asked the NP if I could get some colon prep. He said no but there is some over the counter colon cleanse (magnesium citrate I think). He said take plenty of electrolytes just like the colon prep. I go till clear on a Saturday (drink plenty of water and electrolytes (warm chicken broth, gatorade, tea and jello work for me). Don't eat until Sunday. Take 8 VSL #3 capsules first thing Sunday morning (capsules I think give the bacteria the best chance of making it through the stomach and are no where near as nasty as the powder in water). Keep taking your medication for the UC (mine was as mentioned above the Lialda). Start eating low fiber food for a few days and move to more normal food. Bananas are a great prebiotic so eat a few bananas right after taking the VSL#3. I took 4 to 6 VSL#3 capsules each day along with the Lialda. Started to feel better within a few days with fewer BM's but the UC was not completely gone. Stools were loose for nearly a month while the bacteria repopulated my GI tract. I had to repeat the cleanse after about a month when my symptoms flared up again (I wouldn't do a cleanse more than once a month, I think it is hard on the body and you loose some weight in process). It steadily got better each week and better every time I did a cleanse. It took 4 months before my colon healed and my BM's looked normal (didn't think I would remember what that looked like). The bottom line is it worked for me and it may not work for everyone. Sounds like medication advertisement but ask your doctor first. The VSL#3 by itself has some clinical evidence that it works and I think no risk of side effects. Just taking the VSL#3 everyday did not work for me. Reducing the problem bacteria population with a cleanse and seeding my GI track with the good bacteria population seemed to help me. I had some flare ups when I traveled for work and ate hotel yogurt (so only take the VSL#3 and no other yogurt, keifer or other probiotics for a few months (probably UC food suspicion on my part but happened twice). I went on an 8 day backpacking trip recently so no VSL #3 for 8 days with no issues. I just recently stopped taking the lialda but keep a full bottle just in case. It may be temporary but I am enjoying the remission. I hope this helps someone else cause I felt pretty hopeless more than a few times.
Last edited by spatters; 10-29-2012 at 09:55 PM.
Reason: Limit number of cleanses to no more than 1 per month
Daughter was diagnosed with Crohn's 7 years ago. She lost a lot of weight and was sick for about a year before being diagnosed. She took prednisone for a short time, and then began following the strict diet in the book Breaking The Vicious Cycle. She has been drug and symptom free as long as she doesn't cheat, for 6 years. It is supposed to work for UC too.
Last edited by elizabeth62; 10-29-2012 at 10:02 PM.
Spatters: That is very interesting stuff, thank you for the reply. I have never heard of trying that but it does make sense and I will definitely keep it in mind. I just bought a probiotic, brand name "Tuzen" that I have heard good things about from UC sufferers. Will let you guys know if it works as well as I've been hearing.
Elizabeth: thank you, I will look into that book.
I have used 2 mesalamine suppositories yesterday and I do feel a lot better, I am hoping this will last. I "re-introduced" potatoes and tomatoes into my diet last night and so far there is no difference. I highly doubt the diet is the problem...its just the most frustrating thing when you don't know what is causing your illness.
If anyone has any more tips or stories I'd love to hear them I will be browswing the forum as well.