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.

Sunday, March 27, 2011

chronic illness and love and other drugs

We watched Love and Other Drugs. While the content itself is a world away from our experience with Isaac, it is worth mentioning that the character living with a chronic disease hit home in a big way thinking about Isaac and his life ahead of him. In the movie, the character with Parkinson's has done a lot of self-work coming to terms with her conditions, but her love interest has to start at the beginning, which is where my wife and I started as well, about seven months ago or so.

At the beginning we both hope and fear for a diagnosis. Of course we hope the diagnosis is something curable and treatable, even while it looks like all signs point otherwise. But also, before a good diagnosis is made, we just want to know something. Simultaneously, we don't want to hear a diagnosis that means a lifetime of attention, surgery, or anything drastic.

Maybe that's why the first stage after that is some sort of rosy hope stage where we are sure that we can find a way to beat the disease. We know that if we just eat the right thing or can make the right adjustment then everything will be okay, that even everything will be as we otherwise expected, save for the adjustments. In the movie, as soon as Jamie (the love interest) realizes the reality of Maggie's Parkinson's symptoms, he is off like a shot to find all the latest treatments and figure out just how they are going to solve the problem. It reminds me of me, and diet and probiotics, with Isaac.

But there is this stage of acceptance that I am easing into, and it is what follows the fervor of the newly-diagnosed. One sort of finds a peace with the reality of the condition, and without losing hope and doing whatever we can to treat and cure, we also accept that this condition affects us and will do so for a long long time if not forever. The movie does a good job of showing Maggie's inspiring balance she has found, and Jamie's struggle as to whether or not he can make it to that acceptance phase.

Of course there are other themes in the movie worth mentioning. Like the pharmaceutical racket, the disillusionment of doctors, and the eruption of the US health insurance system.

Sunday, March 20, 2011

uncontrollable diarrhea

Of course, we'll continue to study our eating patterns, but today Isaac had another poop episode that makes us question everything we are and aren't doing.

Most of the day was great. Church was great. We played at home. We went to a park and flew some kites, which was awesome. In the evening before dinner, Isaac had a poop, but actually it looked great (a Bristol 3 to 4 in range), although it was pretty gassy and smelly (in retrospect let me call it gassy in the UC way) and came with some straining at the end that sort of drew out the episode. And then, a few minutes later, after cleaning up and venturing back out to play, he came running back to the bathroom, but not in time to make it into the potty. Then we cleaned that up, and a few minutes later he ran back again, this time making it to the toilet, but with the sort of stool parents don't like to see. No blood as far as we could tell, but very loose, and then stringy, and again with the straining that draws out the bowel movement.

So, should we put it down to the dietary looseness in our regimen? Shall we put it down to symptoms that simply need to be controlled with more medicines? Shall we put it down to this, or that? In our limited experience, we understand we shall do the best we can and accumulate our experiences and observations to make the best choices...

Since I have been speaking so highly of probiotics, let me include also in our report that he has been taking sacchromyces boulardii for the past week. He didn't have it today yet, but I feel like this is a counter example of his bowels faring best while he's taking probiotics.

On the positive side, and I was thinking of this while he was bounding out of the bathroom to go play his dinosaur game, he really doesn't know anything different. And he takes this sort of discomfort really well. If it were me, bowel issues like that can really sour a day. But let us take that as one more lesson of how to live our lives.

Saturday, March 19, 2011

being almost vegan

The thing is, I can understand how easy it is to slide from vegan to not vegan unless you're oh so strict about it. The plan is that Isaac is on a vegan diet 4 days a week, and on Tuesdays and Thursdays vegetarian, while Wednesday is our omnivorous day.

The plan seems fine, and we stick to it pretty well for dinners, but what we find is that as we look back on our food diary, every day but one over the last two weeks Isaac has had an omnivorous diet! One day was a vegetarian day. Now, mind you, we mostly stick to the plan. But often leftovers for lunch, or french toast for breakfast, or some morsel of meat will keep a day from being completely vegan. But still, we are surprised. Really? 13 out of the last 14 days Isaac ate omnivorously? So much for giving vegan a shot! Now that we're aware of it though, we are going to cinch down more now and see how the next weeks go.

Analyzing the data from the past month, it looks like we can make a case for Isaac's poop patterns and whether or not he's eating animal based protein. We'll keep scrutinizing and keep you posted. Lately we've been a little concerned about looser stools than we expect. Partly, that's why we're talking about being vegan today.

There are so many exciting ways to eat vegan. Recipe and food blogs abound, so making the adjustment has actually been more enjoyable and easier than the overwhelming feeling for Bonnie at the beginning. However, we are understanding the difference between being vegan, nad being almost vegan.

Saturday, March 12, 2011

more poop, and probiotics

Well, the day after that last post we had another poop incident. On one hand, we were thinking even more about it being a potty training issue, but then we drew a conclusion that seems obvious. Since Isaac was having that episode of vomiting, we haven't been giving him that probiotic capsule (s. boulardii). First, it was because we didn't want to upset his touchy stomach, but then when we all went to the in-laws' we did so without those probiotics. This morning I ventured out and found some Florastor at Walmart and we'll let that do for the next couple days until we get back home. Today his poop was looking better but let's see what happens in the next few days.

If Isaac's poop has a dramatic turnaround, we have even stronger evidence in his case of regular probiotic use correlating with good stools, and not giving probiotics correlating with bad stools. I'll want to tell the doctor if that's the case, and see what he thinks of experimenting a little with reducing the sulfasalazine. (I can't help but think the antibiotic Sulfa drug compromises in part the probiotic impact. We talked about this with our doc, who assured us the Sulfa is not impacting the good bacteria in the gut. I want to know more.)

Through all this, Isaac's had great spirits. How nice it was to toss him up today and play some with him. On a blog like this, I want to focus more on all the positive things about our family situation. I am also thinking about incorporating a "poop scoop" report which hopefully might help encourage others to keep a in/out diary, and might help others of you notice any patterns or similarities or anything else of note.

Thursday, March 10, 2011

Wednesday, March 9, 2011

days that end in question marks

A day like today is a day that ends in question marks. The first point of note is that our home this week stretches across two states, as I am in Texas and the wife and tots are in Louisiana. So yeah, it's a nice peaceful home for me, but no, actually I really miss having my brood within shouting distance. Bonnie and the children are enjoying Mamita and Papa and Aunt Liz so it sounds like all is well on that side.

So Isaac pooed his shorts today, with no easily understandable explanation. The culprit poo was also looser than we like to see, so all this, you see, is why there are the question marks. We go to bed wondering if it's going to be worse tomorrow, if maybe it was just excitement at the mall where it happened, and maybe it's a potty training issue? And back to examining the diet and symptoms tracker to see if we can scrutinize any possible causes? We suggested the idea of dog allergies and colitis--try googling that one. But mostly, what next?

As you know, it's best to focus on now. And now, presumably, Isaac is sleeping, and dreaming of triceratops, and maybe squishing around in tar pits.

On Saturday morning hopefully I'll be there to twirl him around and get those laughs and squeals of delight which we can count as blessings at the end of the day. And tonight, instead of ending the day in question marks, I'll go nod off myself, and maybe join Isaac in the late Cretaceous, and accompanying ellipses....

Wednesday, March 2, 2011

normal sickness and UC

We haven't yet determined how normal sicknesses affect Isaac, but right now we're getting some ideas. A couple days after the last episode I wrote about, with the diarrhea, Isaac began throwing up. Of course, the first time, we didn't suspect it was anything more than an isolated event, but it was weird, because he vomited after taking his probiotic capsule (He has recently become good about taking pills--which is a whole other subject to blog about because that is one challenge of meds and young'uns.) and curiously, the pill itself stayed down. After that, at dinner, he spewed all of the rice milk he had drunk when we finally got him to take a bite of his food. At this point we were thinking that maybe he has a sort of upset stomach or that he had some bug. After he threw up that time, he did eat some more of his food without a problem.

Well, the next day, Bonnie reported that it seemed evident to her that he had learned how to throw up in defiance when we try to get him to eat something he doesn't want to eat. But as it is, we're not a 100% sure of that either, because he did develop a fever that day, which has persisted throughout today, and now he has a little sneezing, coughing, and sinus drip. In short, it seems like he has a little cold, and right now we're in observation mode because he has it, the other kids don't, and we hope it doesn't trigger a bowel issue or something like that. His appetite has definitely been down the last couple days, and he's had some tylenol and some cough medicine to help with some symptoms. Thankfully, his poop has seemed okay and he is on a regular sort of schedule even though it's twice a day since his last diarrhea episode I wrote about.

We have finally got into a good habit with our diet/symptom diary. We used Matt's spreadsheets (found in the left margin here), adjusted a little for our needs, and it's a great tool for us not only for the documentation and record keeping, but also for the reflecting and together time and discussion it promotes every evening when we fill it out.