In 2010 we got a diagnosis of ulcerative colitis for our son Isaac who was then 27 months old. For a year and a half we had been concerned about his persistent soft stools. Now that we're going down the road of living with IBD in our house, we want to be able to share our story, connect with similar families or individuals, and increase our awareness of the experience of others.

Some of our related interests are diet, kids and families with IBD, and discussing and sharing experiences.

Saturday, January 29, 2011

life after roids

Well, we're still in the "weaning off" stage of discontinuing six weeks of full dose prednisolone for Isaac's UC. For a two and a half year old, parents are bound to experience mood changes and independence--a particular vigor of life which often leaves parents wringing their hands for the "terrible twos" to pass. Well, especially the last few weeks left us wringing our hands with little Isaac.

The best anecdote was when Bonnie listed off half a dozen bizarre scenarios which included the slinging of toilet water, climbing on top of the TV, jumping off the couch, bouncing everywhere like a bunny, getting into this or getting into that. By and large, it wasn't anything different from any run of the mill experience with a two year old. Then, she clarified, however, at the end of the list, that it was merely the antics of one day. Many of you who have had kids can understand, I know. Just string all of those such days together with no naps for a few weeks and then I think you've got it.

Now that we've cut back on the steroids, he is napping again and he seems to have his regular self back, already. You know from my writing that I was a little anxious about the steroids, so I am relieved to see that he seems to be getting back to normal just fine. Although I do still await what the next few weeks will bring, and of course I hope he has no long-term ill effects.

Bowel-wise, we're all good. From our previous experience, it's going to be hard to convince me that the steroids are necessary. The science of it goes like this. At our last check up, when we were given the clear to reduce the steroid dosage, they took no blood work. The results they gave us that day were from the previous bloodwork three weeks ago. In that time, we saw improvement, but now we have no baseline for what "good" is really like. We will see the doctor in another month (six weeks from the last appointment) though so hopefully Isaac will still be doing just fine. I am pretty optimistic about the probiotics, which seem to be getting the best and surest results. Although, like I've written about before--it's so hard to tell what is doing what since we're doing a lot all at once.

This isn't the first time I've written this, but we suspect cow's milk triggers reactions--less than soy but greater than any other thing we've identified as far as we can tell.

I'm pretty comfortable with our diet and Isaac. We eat omnivorously on Wednesdays, vegetarian on days that begin with T, and vegan on the other days.

We have wanted to get more involved with families around Houston who cope with IBD, but so far we haven't done any of that. Perhaps as we get settled into our house and this side of town we'll be more on top of social networking. Our goal at this point is to keep on top of intake and output and register any fluctations, keep up on the anti-inflammatory medicine (hopefully get him switched to non-antibacterial pills instead of the antibacterial liquid form), stay faithful with the probiotics and see if we can't keep his condition stable for a long a time as possible. Being involved with other families with similar goals would probably help.

Monday, January 17, 2011

update series: the frustration

A while after we liberated Isaac's diet to include meat, wouldn't you know it, his poops started getting softer. And there soon came a time when we felt like he was going to start having problems again. I guess the indications were the softer poop, but also he seemed to be needing to poop longer, starting to show more signs of discomfort. And maybe there were the twice a day potty time instead of once a day. Anyway, the other thing was the smell. I remember at one point thinking, this smell reminds me of before.

So shortly after those signs he started to have some bad diarrhea and blood showing up. Intent to nip the problem in the bud, we got him in right away to the doctor, who prescribed a real steroid treatment that we should expect to adhere to for weeks. Well, we were thinking that it's probably best. But what was in store was more frustration.

Isaac responded to the steroids maybe, but not immediately, and not so fully as what we saw previously. Even after three weeks of steroids we couldn't really say that his poop was "better", although it definitely wasn't bloody and it did seem to be more acceptable than unacceptable (acceptable is formed but soft--we call it "soft serve" frankly--that may break apart some in water, but unacceptable is more liquidy or formed stool that immediately breaks apart completely when it hits the water). At that point the doctor said that we should continue for another three weeks and see if we can learn anything.

His sed rates for these times showed curious things. Sed rates measure the sedimentation rates of eurythrocytes in blood, and it is a good indicator of inflammation. Isaac gets blood drawn every time, but the blood they tell us about was "last time's" blood. So we have an unfortunate lag between real time and inflammation indicators. Anyway, I can't remember the sed details except that they were a little baffling, and the doctor explained that sometimes sed rates lag behind inflammation as well.

Anyway, we have had some good poop days, but we've also had some bad ones. The bad ones have taught us that surely Isaac has a bad and immediate reaction with soy products. We actually knew this before, but it was reaffirmed, and now we're really strict about no soy. When he had soy he really had cloudy liquidy diarrhea, in bouts that would have him up almost all the night.

He also has developed a history now with vomiting a few different times in the past month. And we don't mean vomiting just once, but vomiting uncontrollably in episodes that would keep him up all night. At this stage, we are eyeing these times of vomiting as unrelated and more like an increased susceptibility/reaction to a stomach bug. But of course, we can't help but think that this is colitis turning into Crohn's, or that maybe these are effects of medicines. His latest vomiting coincided with a nasty throat cough that afflicted Isaac this past week. Some cough/congestion medicine has helped with that and he is doing what we call fine.

On the positive side of things, all of this poop awareness has resulted in a fully potty trained boy. We are thrilled about that, of course. The transition was moreorless Isaac's doing. It seemed like especially with that streak (ha ha) of good poos, he just got it. And now he always notifies us and makes it to the bathroom, although he says poo-poo whether or not he has to pee or poop. And, also positively, we saw regular baby poop from Annie now that she's been eating solid foods. It might be a small celebration, but since we've experienced this ordeal with Isaac, we were a little concerned that she might suffer from something similar. Sure, it might be a super low occurrence, but maybe we've hit on just the specific gene balance that helps it show up.

Our diet lately? We have kept it pretty open, but open for us is not very meaty at all. Bonnie's plan, nowadays, is a diet where Wednesday is an omnivorous day. The days that start with T are vegetarian days, and the remaining days are vegan days. We want to get back into keeping a strict in/out GI diary, and that way we might track anything related to animal protein. We have been doing more with probiotics regularly these past couple weeks, and it seems like we can owe a lot of gut health to that.