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, April 2, 2011

The S word, and I Guess I Hope It's the Honey Oaties

The last few days:

On Thursday we saw it, the undeniable bloogie in the tail end of Isaac's poop. What is a bloogie? A little red mucousy ribbon of blood found usually toward the end of a colitis poo. Of course we like to not see blood. On the other hand, we don't run to the hospital first thing when we see it either. As it were, the next day was a scheduled doctor's appointment (we generally have one every 4-6 weeks at this point), so we knew we could have a chat about it and see what was going on blood-wise.

For the doctor's visit, we heard the I word, Imuran, and we heard the S word, surgery. We've talked about an advanced med schedule for when what doesn't work and so on, but not for a while, because Isaac has been doing good for the most part. Reality sort of smacked us in the face a little, thinking again about the prospect that, yes, this might result in surgery someday. Stoma, colectomy, resection. Until last year these are words we couldn't precisely define. There are some that I still need to read up on. But you know, many of you who are reading this, that the reality of IBD sometimes involves these--that's just how it is.

Well, of course we want to avoid drastic treatments, or at least prolong the time before them, as long as we can keep Isaac in a healthy and beneficial state otherwise. Our approach, which you could call extra-medical if you want, because it sort of skirts and/or supplements the doctor's orders, is diet based and microbial based. We assert that while Isaac has some IBD genes and perhaps would have developed UC in any case, that it was triggered by early antibiotics, a meat-heavy diet early, and an intolerance/response to soy which may be a result of the above or may be incidental. We assert that his inflamed colon becomes so as a direct result of certain foods he eats or doesn't eat and/or his body's response to them, which in large part, we believe, has to do with having an optimum bowel environment for bowel microbes.

We have found, in our extra-medical approach, that Isaac has a really strong response to soy. But consider our week. On Sunday he accidentally got a couple goldfish at Sunday school. The apologetic caretaker caught it a little too late, but at least this time they caught it. Last time it happened, we had an accident that night. Well, we didn't see anything from it on Sunday, so we figured it was a good sign, possibly of improvement. (PS, to note, now that I look back at my blogs, I saw we had another inexplicable accident on another recent Sunday, so maybe it was these accidental Sunday school treats explain a lot.). Sigh.

Maybe, actually, it was an improvement. Continuing on, we had a nice vegan week. Wednesday, we ate at some Japanese friends' house. We were pretty sure Isaac steered clear from soy, but when we saw blood the next day we were second guessing.

The bloody poop continued on Friday, and that's when we put our heads together and decided that maybe Isaac was getting too much soy in the traces of soy found in a new brand of "cheerio" cereal we also bought Wednesday. This explanation really seemed to fit, because he actually ate a big bowl as soon as we got home Wednesday evening (having not eaten very much at the Nanamis'). We also missed that night dose of sulfasalazine. And then he ate more cereal on Thurday morning, and also later that day as a snack.

So far we haven't minded trying foods which explain in the ingredients that soy is processed in the same facility, blah blah blah. But this time we think that this may be the culprit. Also, the warning was a little stronger than normal: "Grains used in this product contain traces of soybeans." Unfortunately, he also got this cereal for breakfast and as a snack on Friday. Since then, we stopped feeding him this possible poison. Today, still some blooglets, but according to previous reactions, the real test will be tomorrow to see if the bleeding subsides or continues.

Of course, we want it to be the Honey Oaties. It is so easy to feed him a certain brand of cheerio cereal as opposed to another brand. Does it mean we step even further into that realm of the particular parents who check labels and go the extra mile to make sure the food ingredients aren't processed where soy is processed? I guess so, but of course we shamelessly go there if it means avoiding surgery or at least prolonging a healthy life before it. So that's it. That's why I guess I hope it's the Honey Oaties.

And by the way, we're scheduled to see the doctor again in a couple weeks to check in with this latest development. And the most recent blood work was in which showed absolutely normal SED rates for Isaac, giving us hope that when he's well he really is well.

4 comments:

  1. Our 18 month old daughter has had IBD from birth (Ketotifen, Nalcrom, Montelucast). We have had to avoid 'may have traces soya' since I had an exclusion diet while breastfeeding. I know how you feel about being a labelchecker parent but I'd just embrace it if I were you - no other way!! Good luck.

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  2. Hope things turn around again! It's not nice when you feel things are on the right track and then back at square one. Is it starting to clear up? Is he not sensitive to the corn that would be on cheerios?

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  3. I'll give a full blog post later, but as a catch-up, Isaac really did improve the next day, but today had another small bloogie at the end of a poo. So we're still monitoring to see what the next day or so brings...

    He doesn't seem to respond negatively to corn.

    @Anonymous, you're exactly right. And anyway, we eat so well now that we are checking all labels and making most everything homemade. Kudos to Bonnie for bringing 110% to our kitchen!

    Thank you for the comments.

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  4. bye bye honey oaties. When i read the label and see soy I think "when Isaac is here, he cannot eat this." Thanks for taking such great care of my dear nephew. Let's hope it is bye bye to blood in the poo too.
    -nic

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