As the parent of a child with Ulcerative Colitis, I am always waiting...holding my breath and waiting...to see what each day will bring. Or, more accurately, what each trip to the bathroom will reveal. Will my sweet girl flare or will she be ok for another day? That is basically what it comes down to. Last week, I got the answer I had been dreading: No, she's not ok. There was blood in the toilet. Ugh. It was so deflating. We'd been working so hard on sticking to the Specific Carbohydrate Diet (SCD). We hadn't missed a dose of medication. She had been in remission for over six months and things were looking so good. I felt like the diet was working, but now what? What did this mean? Was it all for nothing? After months of feeling so comfortably in control, this was so frustrating.
I honestly didn't see it coming, but I guess I should have...
We have been testing the addition of non-SCD foods into our diet since November, at the rate of one new food per month. Many advocates of the SCD warn not to try new foods until you have been symptom free for over a year or more, however, some people (ie: some doctors) believe that not every SCD-illegal food necessarily needs to be illegal. Because there has been no scientific testing done, it is a bit of a crap-shoot as to which illegal foods may be safely reincorporated into your diet. And it very likely differs for each person, so what works for us, may not work for you. Nature of the beast, I'm afraid.
So, why would we push to add new foods after only two months on the diet? That is a very valid question, which has a complex and emotional answer.
First, and foremost, my daughter's GI doctor was concerned about my daughter getting enough calories on this diet. She was not losing weight, but was tiny to start with and had not gained much of anything since being diagnosed this past spring. She's 7. She should be growing. The fact is, you need to eat a LOT of fruits and veggies to make up for the calories lost by not eating complex carbs and that can be hard to do...especially for an active developing child. Our doctor felt that since she was doing so well and not showing any signs of inflammation, we could safely start testing new foods in an effort to boost her caloric intake. Remember, that this is all experimental anyway, so there is no right or wrong answer here.
Second, there is a quality of life issue. At the age of seven, having all of your favorite foods taken away feels like a punishment. For a child who is already suffering through the discomfort of her disease and the meds she is taking, it seems wildly unfair to then "punish" her with a restricted diet. Even though we are doing what we believe is the best thing for her health, I'm keenly aware of how it affects her mentally. Sometimes I think it would be easier for her if we just went with the hard-core meds and let her eat whatever she wants, but then I remember that she's too young to know what's best and even though she may feel deprived now, if we stick with the diet and it works, it will be so much better for her body and will leave her with so many more options down the road if she needs or chooses them.
It's a frustrating emotional battle between wanting what will make my child healthy vs. what will make her happy. We are programmed to want what is best for our children, but what is that? Health or happiness? Is one more important than the other? Of course, I want both, but I have to find the balance. For me, that means working to help my daughter get back some of her favorite foods so her "punishment" is lessened without compromising her health.
So back to the flare...I will go into more detail in another post about the process of adding new foods to our diet, but to make a long story short, I believe oats caused this flare and I'm more convinced than ever that the diet IS working. That may sound completely screwed up in light of the fact that my daughter is flaring, but hear me out. After each new food we have tried, we have had my daughter's calprotecin level (inflammatory markers) tested to find out if the foods were having an impact. At the end of December, they were normal. At the end of January, they were a smidge over normal, but it was such a slight elevation that the doctor was not concerned. We were cleared to start testing oats that same week and within two weeks and after only three servings of oats, her calprotectin level increased by almost ten times. That's a pretty big jump after six months of remission to be just a coincidence. The real test will come in a month or so when we test her again to see where she is. If she's back to normal with the removal of oats (the only variable), we can safely assume that oats were the cause. In the meantime, all signs are pointing to the flare clearing up on it's own with the removal of oats from her diet and no additional medication other than what she is currently taking. (If you've missed my previous posts, you can read more about my daughter's story here and my perspective on the SCD here.)
It's a slow process, but we are seeing progress. My daughter's symptoms have diminished considerably over the past week, although it's baffling how they change from day to day. She is definitely feeling much better and her color and energy have returned. She's not out of the woods yet, but I have faith that if we stick to the SCD, we will get back on track. We will probably have to wait a while before resuming our food tests, which is going to break my daughter's heart and will, in turn, break mine. But it's progress. We know something now that we didn't know before and that's a good thing. Like, I keep saying, knowledge is power and that's why I'm sharing this information with you. The more we know, the more powerful we become.
In the next few posts, I will share some information about surviving a flare while sticking to the SCD...it's hard to know what to eat. I'll also share more information about the process behind our food tests and some inspiration for anyone else who is hoping to add foods back in. I'd really love to hear any thoughts on this topic, so please feel free to share your stories, experiences or comments. Thanks so much for stopping by. I hope that if you or someone you know has IBD you'll keep coming back to join me in Fighting Flare. Stay in touch at any of the links below...