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.

speaking too soon....

Well, in the last blog I gave a good report, but it was a little too soon. Within an hour of posting, we were cleaning up brown watery puddles of diarrhea on the floor where Isaac couldn't run to the bathroom fast enough.

Bathroom troubles with tots presents a certain challenge. When Isaac started having his problems last year he wasn't potty trained yet. By the end of the year something clicked and he knew what was going on. But folks, that's still just a couple months ago! So when something like this happened, as parents, we have to ask the question if it's a potty training issue or something else. But on the other hand, it's easy to tell it's not a potty training issue when it's his second poop of the day and it's loose diarrhea compared to a nice stool.

The first thing that happens, simultaneous with the clean up, is a frustration, "What could be the cause of this?!" Everything we are doing is careful and systematic, and we don't like to see something we can't explain. But then we replay the day, and realize he must have got a "treat" at church that afternoon. "Treats" like granola bars and goldfish, and well, almost anything bought in a store, contain soy lecethin or soybean oil, and if Isaac gets these things in his system, they're going to take a fast track of evacuation. The gals watching him that day were different from the regular Sunday crew, so we're putting it down to that.

As some of you may know dealing with allergies, we just have to be on top of this with Isaac's caregivers. I think it paints a good picture if we explain that if he gets anything unacceptable, in eight hours he will have uncontrollable diarrhea all over our house in a trail to the bathroom.

Other than that, we've started using the spreadsheet Matt posted for tracking diet and symptoms. And that was a couple days ago. Isaac has seemed to bounce back fine from that episode of diarrhea. We quizzed Orry about foods at church. Usually Orry (our four year old) is conscientious of what Isaac eats and "if it has soy in it", but we couldn't get a clear answer if they ate something or what they ate.

This morning is an early morning at the zoo, and we'll report more later.

inspiring and overwhelming

Reading about so many other IBD experiences is both inspiring and overwhelming. On one hand you have a lot of cure/treatment stories which tend to give you hope that the right treatment/diet/circumstances will keep it from being chronic. On the other hand, you get the other side of it too, where one thing leads only to something else, and any number of drug treatments and surgeries later and still the pain and problems persist.

Somewhere in the middle of this hope spectrum we and most IBD patients exist. A really good interpretation of this is the spoon theory penned by lupus patient Christine Miserandino. It describes an aspect of chronic disease, and as far as I can say, also gives you a perspective of parenting a wee one diagnosed with IBD.

Today for example, we went to an activity at a church which is new to us (we are also new to our area). The kids we dropped off with a nursery there. We dropped them off with snacks, and we have paperwork filled out about Isaac not tolerating soy anything, which also includes almost every merchandised food product. However, almost the whole time I was eating and snacking on the foods provided to us adults, I couldn't help but think about how I sure hoped Isaac wasn't getting any of that sneaked to him by a caregiver with good intentions (soy things just really inflame him). Happily, nothing like that transpired, but it sure made me think about others who have to care so much about paricular allergies/diets/exposures.

Also, nowadays everything is going okay with him. But if it weren't, I can't imagine that we could do activities where Bonnie and I are both doing something for more than an hour (or maybe even that). Until, I guess, we know enough caregivers that we can make arrangements. We'll see--more no that as we experience it. It's probably best to worry about things as they occur and not so much before.

update series: the liberation

At our doctor's appointment just before thanksgiving we got explicit instructions to liberate Isaac's diet, which meant give him some animal proteins. He weighed a pound less than his previous appointment and his iron levels were low, so let's beef him up, I think they thought.

I was still pretty insistent on getting back to the vegan diet and using vegan tools to increase weight and iron. But around this time it got pretty heated again, between Bonnie and me. One of the factors that kept coming up were my control issues. Now, I will admit I have some control issues. I always like to analyze my self and make improvements when necessary, and I think I've handled my control issues fairly well since I was 17. This particular situation didn't seem to me to be about my control issues AT ALL, but after hearing it a few times, I said something like, "You (directed at any audience which thinks so) think I want to be in charge of all this? I would happily accept the care/instructions of somebody else who will do better. But I am completely convinced that there are other, more reasonable and scientific treatments to try before steroids or at least before assuming we can't make progress with diet."

So in my controlling way, I relinquished control entirely and told Bonnie that she was in charge of what Isaac was eating and taking and so on. And at most I would only frown upon what I saw, and put in my two cents.

He was actually having softer bowel movements ever since that first couple weeks of nice solid poops. but these bowel movements were completely formed and still definitely within normal and healthy, it would seem. He continued in this way for another week or so after we "liberated his diet".

scope prep, etc

This week we've got the scope rescheduled for Thursday. We had some insurance issues and it got changed, and, well, there's a whole story about that drama, but for now it looks like Thursday will be a revealing day for our little guy.

We have identified, with high probability, one factor that inflames Isaac's colon, and that is soy and soy things. Like soy lecithin, or soy fat, which is in a lot of things--just look at the ingredients. How much will cause a flare-up? Not much, since there can't be much in a couple bites of foodstuffs, and that is how much seemed to prompt two flare-ups Isaac has had in the past week. With those small amounts we can expect one episode of bathroom tribulation, a couple or few hours of "having to go", but passing what in the worst case is just blood and mucus. This is good information. It tells us that the stuff passes through his system at a normal rate, even when he's flared up.

With colitis, and we still don't know for sure what it is, exactly, that we're dealing with, something (like soy) may aggravate the colon one time, but perhaps not aggravate it another time. But it's good to know, that for now, we have identified a dietary factor of inflammation. We had suspicions about soy from the first of Isaac's worst bowel movements. It should be noted that for at least 6 months (20 mos to 26 mos) he had mostly soy milk for his milk purposes. He had diarrhea during this time (he's always had diarrhea), but no episodes like we've been experiencing the last couple months.

Anyway, we had quite a weekend with his flaring up one night where I spent a lot of one night in the bathroom instead of the bed. I wanted to bring out the colonics kit, but it was in Houston, and we were in Louisiana. As it was, it was good to see that the episode came and went and so did Isaac's discomfort, apparently.

A positive thing is that with all this bathroom duty, it seems like Isaac is really figuring out his potty urges and how to get us to help him get to the potty. Hooray!