I’ve recently reached my five year anniversary of Ulcerative Colitis (yay?) Still currently have a colon, although it’s been a very bumpy ride! My doctor has begun pushing the surgery so I’m currently exploring all options before making a decision.
Some more details:
I work in higher ed marketing and am an active kickball and flag football player. I have been trying to get into more running and recently completed a 5 mile race (the biggest accomplishment was no bathroom breaks!) I am getting married in December to an incredibly supportive guy who has enthusiastically tried every wacky recipe I’ve made this year in an effort to control my UC.
Symptoms Right Now:
Minor urgency, 3-5 bowel movements a day.
Fodmap Diet – Success So Far for My Colitis
Hello everyone! I wanted to share my recent experience on a low FODMAP diet. I’ve dealt with on-going flares over the last year and a half and my most recent scope showed severe active colitis. The “it might be time to visit a surgeon” conversation was tossed around, so I am doubling back on my efforts to revisit the impact that diet has on this disease.
I’ll be open about my struggles with the SCD diet. I’ve never felt well on it, and always continued to have active diarrhea unless I am on a higher prednisone dose as well. In an effort to try something new, I visited a nutritionist that specializes in IBD/IBS. She listened to my list of what I was eating and suggested that I try a no/low FODMAP diet. More information can be found here: http://blog.katescarlata.com/fodmaps-basics/. It was created with IBS in mind but what immediately struck me is how food such as apples, onions, and honey are high in FODMAPs. These are foods that I eat everyday, whether through cooked applesauce or in my chicken soup. Otherwise, the diets have many similarities (eat veggies, fruits, and meat/fish and stay away from wheat/gluten, sugar, and processed foods).
I have been trying the FODMAP plan for three weeks now, and I’m very excited about the initial response-solid bowel movements 3-5 times a day (mostly in the morning, for the last few days I haven’t even needed to go at all during the afternoon and evening) no bleeding, but the biggest difference is I have absolutely NONE of the bloating or cramping that I typically have, and I’ve noticed improvement in urgency.
I know UC is such a personalized disease, but I wanted to share for anyone who may have noticed some on-going triggers with SCD friendly food in the hopes that you can find what works for your body!
Medications I’m Also Using:
Currently on Ascacol, entyvio, and a prednisone taper (down to 5 mg every other day). Have tried Remicade as well as 6-mp and Imuran (horrible reactions).
written by Court
submitted in the colitis venting area
Hello, I’m a 29 year old girl from Massachusetts. I was diagnosed with UC in September of 2010. Hobbies include playing the piano/guitar and mapping out public restrooms on my commute.
I have also had more success on a low fodmap diet. Fish and rice is my go to flare food. I can’t tolerate any prebiotics.
A lot people say fodmap intolerance is due to SIBO, I’ve always meant to get a hydrogen breath test but never got round to it.
Hi Andy! That’s great to hear. I agree, I’ve been eating a lot more fish and it’s so soothing on the digestive system. That’s interesting about the SIBO, I will have to look into that!
what were your reactions to remicade? Just received my first dose at MGH yesterday.
Hey Andrea-Remicade eventually started causing allergic reactions (hives and congestion). I switched to Entyvio last fall and haven’t noticed anything. I’m at Beth Israel and I do know of plenty of patients that don’t have any reactions to Remicade though.
REmicade was horrible,caused drug induced lupus an now taking prednizone,ldn and lialda and feeling much better
I also didn’t find success with SCD. I think that diet has too much animal protein and fat for me. Eating at most 4 ounces of animal protein per day has been helpful. Currently only on Remicade and recently started taking Chlorella and Spirulina. I’ve tried a lot of diets and supplements that haven’t worked.
Hi Ethan, definitely agree with you! I feel best with small amounts of protein and plenty of low FODMAP veggies. I’m not familiar with Chlorella and Spirulina, do they seem to be working for you?
Hi Court. The algae Chlorella and Spirulina seem to be really helpful. They are supposedly extremely healthy. It might be a great supplement to take during flare ups because of the high concentration of micro-nutrients and low amount of fiber. Right now I’m taking 0.5-1g of each per day and I think it has helped reduce BMs from 5-6 down to 2-3.
Hey Court, I also saw Kate Scarlata about a year ago. She was very pleasant and offered up some great advice for me.
I have been on Imuran for almost 2 years, and started Remicade in January this year as well. Nothing has brought me into remission, and I’m now looking at switching to Entyvio. Curious what you have experienced when making that switch? I think you and I have had similar timelines, though I was diagnosed back in 2012, a couple years after you were.
Hi Mark, she is great! I actually saw her a few years ago but was a little overwhelmed with the disease at the time and didn’t take the diet to heart. I kept her cookbook though and revisited it when looking into FODMAP’s again, it’s been really helpful as well as her grocery charts.
I was flipped from you medication wise-I was on Remincade for a year first which lost it’s effectiveness and caused some minor allergic reactions so my doctor put me on 6mp and then Imuran. It caused vomiting and flu like systems for weeks, so my doctor switched me to entyvio. I was flaring at the time and she put me on a prednisone dose–the medication is a lot more effective when you aren’t actively flaring.
So far I feel better on entyvio than I ever did on Remicade. I was frustrated with being unable to taper from the prednisone, but the FODMAP diet seems to finally be getting me to a place where I can taper without starting to bleed again.
I also use the Low Fodmap diet. I recently went off of it and my symptoms came back. I only lasted a few days on the SCD but felt horrible on it so was not motivated to continue. My symptoms are mostly proctitis although I have had small ulcers higher up. I find soluble fiber such as oats (and squash) are very beneficial. I was diagnosed in 2003.
I love squash! Butternut has been my go to dinner side for months now :)
I have been using the Fodmap system for about 6 months and have had great success. I am currently not on any medication and down to 2 solid movements a day. I was eating a good deal of fruits that I should have been avoiding.
Hi Kristy, wow! That’s so awesome to hear, especially since you’ve been on the diet for awhile. I’ve noticed a big difference cutting out apples and watermelon fruitwise.