An introduction - New to HW, old to UC, trying out SCD

Hi all,

I guess it's about time I join in on the fun. I was diagnosed ~17 years ago as a teenager. From reading this forum I realize I am pretty lucky as far as UC goes...I've had a few awful flares and some not-so-awful ones, but have been symptom-free most of my life. I was hospitalized last October while in a major flare (it had been 15 years since my last hospitalization) and started Remicade. While the Remicade cleared up the digestive symptoms immediately, I still haven't felt like I'm totally in remission in the last year.

My non-digestive issues include fatigue, painful acne, and swelling in my eyelids (it seems like allergies, but sometimes like styes...my doc says it is not UC related, but it feels connected to me). So my gut reaction (no pun intended) is that something is still "off" even though the Remicade is stopping the awful UC symptoms we all know too well. Additionally, I started flaring about 12 days before my last infusion and while I was able to slow it down a bit with Imodium, the bleeding didn't stop until the infusion. I discussed moving the infusions closer together with my doctor (I'm at every 8 weeks) but I'd rather not if possible. I'm also worried that the Remicade will eventually stop working, since that seems pretty common.

So, about the time of my last infusion (7 weeks ago) I decided to cut refined sugar out of my diet. I'd tried the SCD during my flare in October and while it hadn't done much for my D and blood, I had noticed that within a week of going on the diet, my skin had cleared up amazingly. So I decided to cut out sugar to see if it helped my skin. It did help a bit but I wasn't perfect about it and it wasn't as dramatic as when I tried SCD. Then about a month ago I started to get my "warning" rash on my lower leg (anyone else get that...I always get a horrible, itchy and painful rash on my legs before a flare...sometimes days before, sometimes weeks before). My mom had been trying to convince me for months to try the SCD again, so I decided to give it a try because I'm tired of not feeling like myself.

I didn't start with the intro diet (I just followed the legal/illegal list) because when I started I was totally okay digestion-wise (once a day, no blood, totally normal). The rash on my leg was not too bad. On day 3 my leg exploded with the rash...the worst I ever remember it. On day 6, I woke up to D with lots of blood. I think I went 10-12 times that day...not good but not as bad as it could be. I think I was three and a half weeks away from my infusion at that point. I decided to go back to the intro diet now that I was flaring. It seemed to help, though slowly...in about a week I was down to 5-8 times a day and less blood. Then I had to travel for five days and while I didn't "cheat" at all, I was eating raw veggies and likely had something illegal while eating out despite my best efforts. So I stalled a bit. I got home a week ago and the improvement has been dramatic since getting back to the strict diet. I'm down to ~2 times a day since Friday and actually only went once yesterday! I didn't even realize until I was going to bed last night that I hadn't gone all day. It is not totally formed, but seems to be getting closer to a normal BM. And the bleeding is almost gone! Since Friday I've gone six times and two of those times I may have seen a tiny bit of blood, but it is so little I am really not sure if it is blood. Usually there is no question about it. The other four times I couldn't see any, and I always check. Oh, and I don't have the usually urgency or cramps/pain.

I am feeling really optimistic about SCD right now, though I know if it is still very early. I know it doesn't work for everyone but it seems to be doing something good for me. My next infusion is on Friday afternoon and I actually wish it was a little further off so I could keep tracking my progress. Last time we ended up moving my infusion from a Monday to a Friday because I was feeling rotten. So my questions are:

1) Has anyone else ever tried the diet when they aren't flaring or just mildly flaring? Could the diet have caused this mini-flare through die-off or was I likely just getting ready to flare anyway? I searched the internet but haven't found anyone with a similar story. It doesn't surprise me since it is a pretty extreme diet to try unless you are desperate. My husband and I would like to try to have children soon so that adds to my desire to minimize the dose and frequency of Remicade I am taking and try to get my body back to as healthy as possible...I'm tired of being tired. So I decided to take the leap even though I've refused in the past while much sicker.

2) I'm assuming after my infusion on Friday I'll be back to once-a-day normalcy (maybe I'm too optimistic but it has worked very quickly every other time). So I'm not sure how to move forward with the diet and introducing new foods. If the Remicade is reducing the inflammation, is it safe to eat raw veggies and fruits? Or will that still slow down the healing? I feel like the med might mask my reaction to foods so I can't tell what is bothering me as I introduce them. I can't wait to eat raw fruits and veggies again, but also want to allow my colon to heal as much as possible. Any advice? Also, I know I should probably be taking some vitamins or supplements but am not sure what.

As far as my other issues...I feel like my energy is coming back, though I have had a few days when I've been exhausted. I think I am ready to start running again...I actually feel like I want to go out for a run. I used to run a lot...I was running a lot of road races a year ago and feeling great and even finishing in the top of my age group in some small races. But this last year, even when I was in "remission", if I manage to drag myself out for a run I felt like I just couldn't move and I was dragging myself the entire time for just a mile run. But it feels like the weights that were holding me down are gone.

My acne is 99% better...it is unbelievable what a difference it makes...I could do a before and after for one of those Proactive commercials. :) My eyes are also doing better...I've had it come back a couple times but it clears up quickly and now they have been good for about a week. And my leg rash is almost gone. All in all I am starting to feel like me again.

I know the SCD doesn't work for everyone, but the difference it has made for me in the last month has really amazed me. Why I have I refused to try this for so long?

This turned into a bit of a novel...I guess 17 years with this disease and a frustrating last year has left me with a lot to say!

Hi Lizze,

I fought it (SCD) for a long time as well. What finally got me into full remission was both Remicade and SCD. Neither worked on their own, but something about the combination did the trick. This difference as you say was quite remarkable.

However I built up a resistance to Remicade and had to stop - in any case it was the only time (doing both) where I achieved a full on clinical diagnosis of remission and provided me relief of the symptoms for quite some time.

I encourage you to keep at it... and hopefully find success as well.

On a side note - I had to go slow adding raw items in, but eventually it became a non-issue and I tolerated any raw veggies - also I used a juicer for the first while with excellent results. I'd make fresh carrot and apple juice with a bit of water and olive oil mixed in. Actually to date I still do this, but add spinach as well.