Mild symptoms, thankfully. Some cramping, loose BM. My Bristol scale is 4-6. No bleeding in 3 mos. at which time it was very mild and lasted only a few days because I went to daily Rowasa usage. having read many entries, I feel truly blessed my symptoms aren’t as severe as others here!
Something interesting about me: I’m American Indian and sing at Pow Wow’s.
I was first diagnosed, C-Scope, at 50 with Proctitis. I was using Canassa off and on probably because I was in denial and didn’t have severe symptoms. I was good for about 7 years and then I began to bleed more frequently etc.. Last C-Scope two years ago revealed Proctosigmoiditis.
So, needless to say I was a bit more freaked out. Began the Rowasa regimen which I was in saddened, depressed and full of anxiety about. Rowasa has worked very good keeping my symptoms mild. Over the past 3or 4 weeks, I started experiencing some abdominal cramping, loose BM etc but no blood. So, I started poking around the internet and thankfully fell into this site!
Just began SCD and FODMAP. After a few days what a marked difference! If it weren’t for this site I may have never stumbled upon this way of living! My ultimate goal, as probably us all, is to get off Meds!
My question is for my veteran SCD and FODMAP followers…..how long did it for your symptoms to go so far into remission you ended or cut back your medicinal regimen?
Thank you! Thank you! Thank you!
Hey fellow UC’ers! I’m Tony hailing from the smallest state in the Union…..RI. I’m 59 and live with my wife, daughter and Charlie the Dog!
I have had UC for 37 years now. I have followed the SCD for the past 21 years, 100%. It’s the best thing I have found to reduce inflammation and symptoms. Many of the conventional medicines have never really worked for me. So, I have alway been looking to alternatives. Currently, I take 4.5mg of low dose naltrexone (LDN) nightly. This I have been doing successfully for almost 5 years now. There has been the occasional flare up, but I’ve been able to knock it back with a short course of prednisone. I usually stop the LDN for a week while I get the flare under control. I find that LDN is great for maintenance once I get into remission, but not so good at getting me there. Hope this helps.
Hi there…..i haven’t checked in in awhile and hope alls well with you Peter! Seeing you’re a UC long hauler, i was curious to know how often you get a colonoscopy? My last one was about 2.5 years ago when proctitis progressed to proctosigmoiditis. My symptoms ate mild compared to others I’ve read about on here but I want to be as on top of this as I can! Thanks and be healthy! Tony
Hi Tony…I think you are on the right track. FODMAP is usually best with IBS NOT IBD. I’m a UC lifer with over 40 yrs of diagnosis. I have been off meds since 2011 and used SCD after running out of meds, allergies, etc.
First, you really need to get the book…Breaking the Vicious Cycle Elaine Gottschall…and Read it!! Understanding the science and the basics is key.
Second, use this site and Adam’s recipes.
Third…I used a site called Pecanbread.com which proved to be super helpful…the section called stages, (http://pecanbread.com/p/how/stages.html )but read through the site. It helped me immensely because I am super picky and couldn’t eat Some of the things like Adam (he has tons of recipes plus uses kefir) was eating due to intolerances, etc. I also did not use bone broth and cheated with chicken broth. I cooked everything thoroughly. Eating out is basically a no go! Some days I could eat something and other I would have issues. Next important point…
Fourth, you really, really need to keep a food and med journal! It is important to know what works and what doesn’t!! Also, if you change too many things at once you won’t know what caused it-both good and bad.
Fifth, be patient…you didn’t get sick overnight and it is a slow and steady marathon with many ups and downs…that’s the definition of UC/Crohn’s, too!
Everyone has similarities, but reacts differently. Also, You may lose weight at first. It can be frustrating And it is a lot of work…but worth it. American diets are the worst and consist of lots of chemicals.
Sixth, exercise and reducing stress is crucial.
I also would consider using a probiotic(there are plenty of recommendations on here-Bev! …mine is crazy Rx strength Visbiome), and/or kefir like Adam.
Good luck and good health.
Hi there…..i haven’t checked in in awhile and hope alls well with you Shelly! (I know, same reply I sent Peter. I value your insights). Seeing you’re a UC long hauler, i was curious to know how often you get a colonoscopy? My last one was about 2.5 years ago when proctitis progressed to proctosigmoiditis. My symptoms ate mild compared to others I’ve read about on here but I want to be as on top of this as I can! Thanks and be healthy! Tony
Do you use dairy kefir or dairy free like a coconut kefir? I’ve read stories of people like Kenny Honnas and Jordan Rubin who healed themselves of IBD or got into remission using kefir made from raw dairy. But for those of us who don’t tolerate dairy, I’m wondering if dairy alternatives for kefir work just as well.
Thank you for your reply….very encouraging to hear of your success with SCD! I have read a bit about LDN. I’m going to my GI on Wednesday to discuss. As I mentioned, I’ve been very fortunate to have mild symptoms and rare flare ups….2x/year and I’ve been able to control with Rowasa. The flare ups occurred when I was using Rowasa every third night. When I went back to nightly it was under control in a few days. Now, I’m every other night with Rowasa and just started SCD. So, I’m hoping I can wean down further in the next couple of months? Have you heard of/tried Ancient Nutrition Multi Collagen Lemon-Ginger Gut Restore? My brother in law has Crohn’s and has been taking this for a few years with great success! I just ordered it and well, we’ll see what happens? Thanks again and Be Healthy!
I’ve used dairy kefir and quite frankly I’m not sure if it was helpful or hurtful. I should really probably do a food elimination and see if Kefir is cool with me? I haven’t heard of coconut kefir….wondering if Whole Foods would carry? Have you tried it? Thanks.