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.

Poop Inspection

One of the main motivations for having a separate IBD blog is to report such matters as poop inspection. I always think it's strange and a little neurotic when I hear the fecally concerned reporting such things as frequency and details of bowel movements concerning onseself, each other, or of pets. But here I was this morning, rinsing off a diaper this morning investigating the vegetable contents and wondering, "now, what is that?" and so on. Normally, who would share this? And normally, who would want to read this? But when it comes to chronic bowel disease, or regarding colon health for anybody curious about making changes in their health, "poop talk" is no stranger.

So nevermind football. Let's talk stool. With Isaac on an elimination diet, it is easier to tell if we've got an added irritation. In theory. What it really means is that our investigation is something short of a crap shoot. We have noticed an improvement this last week, and we are mostly on the basics, though we are including wheat, and lately have also included a little chicken meat and eggs the last couple days. The animal proteins are a lot to add, and if this morning is an indication of what may come, we may re-restrict those. Actually, I don't know why we are feeding him anything animal based at all. From some literature, you see a high incidence of bowel disease where meat is a big part of diet. I don't think that meat is responsible for Isaac's condition, but it seems to me easily feasible that a mostly meat diet helped activate it. He's always been a little meat eater (since age 1), and honestly, part of the reason we are feeding him chicken is because he will readily eat it.

Bonnie reminded me just now, the other reason is that we are feeding him chicken is because he is not only on an elimination diet, but also low fiber, and meat offers him some nutrition in addition to the flour tortillas and rice he's eating.

It's hard to get him to eat things, like soft cooked vegetables and canned soft fruit. Or yogurt or quinoa. Any ideas? We can't seem to plea with him, trick him with smoothies, or hide it. Maybe we'll try pizza with mashed vegetables in the tomato sauce.

So this week we learned to really hold off on the fiber during a flare-up. We were feeding him a lot of rice and beans because he loves it, it's a good complete protein source, and it's plant based. But pushing out the fiber puts unwanted stress on his inflamed bowel walls.

Colonics. Let me report more about this. Over the past months Isaac's defecation was tending towards hour long episodes of multiple bowels that would clean out everything in there, and then the blood and mucus caused by the scouring. During that hour, Isaac was, especially lately, evidently experiencing more pain or cramping and at the end it seemed like what I want to call dry heaves on the other end of the GI tract. Not at all excited to try out enemas ever, much less with my son, I crossed the line and did it, mostly because if I were experiencing what he seemed to be experiencing, I would have wanted to try it--even if it offered only a temporary relief. Get something in there to give the bowels something to squeeze out, as well as helping rinse out the bowels with something pH balanced.

In two such episodes, upon administering these enemas, the episode ceased. What I mean is that after the post-enema void, Isaac's "hour of misery" ended, and no more poops. Plus, we noticed the next poops were not bloody. In the last case, he actually went 40 hours after without passing significant blood, and since then, he hasn't had the bloody mucus, or a single 'one hour episode' as described above. Before last week and that first enema, he was having those hour episodes twice daily. Once in the morning, voiding dinner from the night before, and once in the evening, voiding breakfast.

Now, the enemas weren't the only factor that changed this week (But I liked the immediate observations from the enemas, I must say). The other major factors were the dietary changes--going to the elimination and low fiber diet, which for most of the week were plant based, although recently we introduced some animal protein foods. The other changes were some supplements. B vitamins, probiotics in a pill (acidophilus), and an amino acid L-glutamine which we decapsulate and dissolve in Gatorade. And I guess I can't leave out football, because that was some game against the Gators last night.

Our next goal is to get probiotics in capsules that we can hopefully give Isaac more easily. The pills we have just don't go down easily, and Friday it ended up with a living room full of vomit. It's not a complication we want to add to a troubled GI tract.