Stopping 6mp Thanks to SCD

Introduction:

I am a 36 year-old, happily married mom of two boys (8 and 13). I am currently attending California State University, Chico with the goal of becoming an elementary school teacher. I was diagnosed with Ulcerative Colitis in 1997 at the age of 19 (almost 20).

Some more about me:

I like the feeling of being fit, so I work out all the time. I enjoy arts and crafts, do-it-yourself projects, sewing and being outside. I have a pretty good sense of humor, love to laugh, love a good joke.

Symptoms:

Currently I have no UC symptoms.

Stopping 6mp Thanks to SCD

This is an update to my story which was submitted around January of 2013 (all of my stories are written here: https://www.ihaveuc.com/author/nikki-in-chico/). At the time I was having a “mild” flare, which by my definition was around five to ten painful bathroom trips per day (plus a couple at night) with some urgency. There was mucus and blood with cramping and fatigue, often feeling like I was in labor during “go time.” And “go time” was never very productive. I don’t know what ever became of the food I was eating, but mostly what came out of me was mucus and blood. Looking back, I’m thinking wondering how I considered that “mild.” Well, I have definitely had it worse, but this flare was big enough to force me to consider going back on stupid Prednisone.

For a year I had been taking 6mp (1 tablet/50 mg per day), plus I had been on Colazal (Balsalazide Disodium, 3 capsules, 3 times per day) for over two years. I didn’t want to add in Prednisone because I had taken it several times before, and it only works while I’m on it. The last few times I have taken it, my symptoms only partially went away.

I have always been embarrassed about having UC.

Only my family and closest friends knew I had it, and I didn’t talk about it much, even when I was sick and in pain. Then I stumbled upon this website, and I read about how the Specific Carbohydrate Diet (SCD) has helped thousands and thousands of people. I had always suspected bacteria as a factor in this disease. I bought the yogurt maker and decided to give it a try. The diet was a bit difficult at first, and I didn’t do it all the way. I just eliminated all of the bad foods and stayed away from nuts and raw fruits and veggies at first, while my insides were healing. I was really missing bread, crackers, chips, cereal, milk, ice cream and chocolate! I checked out a few good websites with healthy and yummy SCD recipes. After a few weeks I was feeling much better, and I was getting used to my new way of eating.

After a few months, my UC symptoms were gone! Soon I was feeling so good that I asked my doctor to take me off of the 6mp. For the past 12 weeks, I have been tapering down off of the drug, and in three days I will be completely off of it! I will post another update in a couple of months, but I believe that the SCD has helped me get my UC under control. I now follow the diet loosely. I don’t pay close attention to spices, for instance, and I drizzle a little ranch on my salads (which I eat almost daily). I have half & half in my coffee (another daily habit), I drink some juices from concentrate (popsicles, yum!). I use a little balsamic or rice vinegar here and there, but that’s about it on the “cheating.”

So yeah, the diet takes a little getting used to, but it’s so worth it! Some people are a little jealous that I “have” to eat so healthy. My skin looks better, and I feel fantastic! I’m SO glad that I am almost done taking the 6mp. I have read that the drug can have side effects that appear months or even years AFTER STOPPING it. That’s a little freaky. I did notice some skin changes on my face when I started lowering my dose– a dime-sized rashy patch on my chin and a couple of water-filled bumps in the crease of my smile that would not go away. Those skin issues lasted for about six weeks, but now I’m better.

If my symptoms do come back, first I will get strict on the SCD. If that doesn’t help, I will try Bev’s regimen of the probiotic and fermented L-Glutamine. If that doesn’t help I will try the Olive Oil. If that doesn’t help, I will go back on shark liver oil from Master Formulas which has put me into remission and kept me there before. If that doesn’t help, I will try some other suggestions which can be found on this site. A shout-out to Adam (and his beautiful wife): This website is amazing. Thanks to this community of UCers, I’m not afraid to talk about my UC. In fact, I have even found others who have similar issues; I’ve told them about the SCD, and they are seeing improvements as well. Thank you, and thanks to Elaine Gottschall, the creator of the diet!

Medications:

6mp worked great for me for almost a year, but while tapering off of it I have noticed strange skin issues pop up on my face. In short, be aware that 6mp can cause side effects even after you stop taking it!

I have done enemas and suppositories, which never worked for me.

I have taken Prednisone so many times in my life that it no longer works for me.

I still take Colazal, which supposedly has no side effects (not sure if I believe that).

written by Nikki

submitted in the colitis venting area