Roadtrips & Snack Plans

First, the poop scoop:

Isaac's stool has continued to be pass inspection since our last post. These are not ideal stools, but no blood, and we're continuing to be hopeful that we are on the cusp of a good remission. Yesterday he had some snacks with soy, and we didn't have any problems last night. He even passed a #6 stool this morning that didn't seem problematic, so that seemed good.

Also, we have ventured on a roadtrip and a weekend "away", and we are pleased to report that it was a success. We have a new procedure on the books. And I don't mean medical procedure, good heavens, but rather, a

Procedure for Social Snacking

When a group of ten kiddos get Easter cupcakes, for example, and you don't know if the ingredients pass stringent criteria, and your little boy is part of that group, it is really difficult to say, "No, you can't have one," unless you have a plan. And so now our plan is going to include some sort of snack bag which we'll have with us at all time so that we can make a suitable substitute snack that Isaac will enjoy will everybody else is enjoying an Easter cupcake.

solid poop again!

Okay, at last, today, there was much to do around the toilet bowl as Isaac squeezed out a healthy 3,4 stool. It follows a 3,6 stool yesterday, which suggests that we're on the up and up at last.

Today was also a doctor appointment, with the doctor down the street from the usual guy. I took the luxury of attending this appointment, and have decided to also meet every other appointment or so with our regular doc, in the aim of developing a better relationship. The second doctor gave a pretty good affirmation of the stance of the first doctor, and we talked and talked about this and that. We found out we can get a prescription for probiotics, so we're pleased about that as it will help with the bills.

Well, we were so pleased with a better stool today (after the doctor appointment) that it pretty much has overshadowed our dismay. We also don't know if it is finally the steroids, or if it was the fish oil we started giving the other day, and also we have a small list of other things we could put it down to. Meanwhile, no more honey oaties, as we mentioned before.

the latest latest

Our doctor wants to

a) increase the sulfasalazine
b) start Imuran
c) hit the steroids

And of course we're torn. We want to do whatever it takes for Isaac to be at his optimum health in his condition, but we also want to do the least drastic thing. Bonnie is more at peace with the meds. I am less.

Two more stools today with blood present. We need to do something. Something I wanted to check is why not try another 5-ASA drug other than sulfasalazine. We also still have the SCD to try out instead of our vegan efforts. We also have a battery of other things to try, but we don't want to waste too much time trying things that won't work. And that's exactly the doctor's perspective I think.

Here is a graphic so you can see our stool report since we started taking careful records in February. Sorry it's so non viewer friendly. The lightest are caution #6 stools. The bright red are #7 stools, and the dark red cells indicate blood.

2/24	5.5
	n/a
	3,6.5
	3,4
	n/a
	3,4
	n/a
	3
	n/a
	n/a
	3,4
	4
3/8	4,7
	7
	5
	5,6,7
	4,5
	n/a
	n/a
	3,4
	3
	4,5,6
	5
	n/a
	3,4 5,6
	5
3/22	6,7
	3,4 5,6
	3,6
	4
	4,6 4,5
	n/a
	3,5
	3,5
	n/a
	3,5
4/1	6b 6b 6b
	4,6b
	6,7 5
	5,6 5,6b
	7b
	6b
	6b
	3,6
	6,7 6,7
	4,6(b)
	7b 6b

the latest on the latest

It's time for the follow-up to report on how Isaac's week was following his last bloody stools last week. As a recap, we guessed it was traces of soy in some new toasted oat cereal, cut it out of the diet, and then waited to see what happened. We cut out the new cereal after Friday, and Saturday he still had a little bloogie at the end of his bowel movement.

Sunday was immediately better, blood-wise, although the poop was still a 6,7 Bristol-wise. He had a second bowel movement that was hardly worth mentioning--just two little turds, except that they were small little #5 UC turds, which are more like, I don't know, small soft squeezed pooplets.

(If you think we need an exact poop vocabulary, I agree and you're probably right. Here's something the Japanese classify:

unpi 「うんぴ」 : Diarrheal stool. Could be connected to overeating, having a cold, or stress. It is usually a yellowish-color and it has a very strong smell.
unnyo 「うんにょ」 : Soft and tender poop, but not diarrehea. It comes out when you are feel some indigestion. Yellow-ish or light brown in color.
unchi 「うんち」 : Nice poop. It comes out when you’ve been eating healthy balanced meals. It has a clean brown color and doesn’t smell very much.
ungo 「うんご」 : Comes out when you’ve not been eating enough vegetables, and you’re probably constipated when you squeeze out an ungo. Ungo is dark black and really stinky.)

Monday also had two bowel movements. Both were 5,6s. The first was bloodless, but the second had some blood. Tuesday we also saw some blood and a total 7 diarrhea stool. We also started back in with some L-glutamine and acidopholus on Tuesday (before that Isaac was having only sacchromyces boulardii every day in addition to his prescribed sulfasalazine) On Wednesday, an improved bowel movement, with the tiniest fleck of blood visible. Thursday, also blood just visible. Friday, the best stool in a week, #3 at the start, but the movement ended up with a #6, but no blood. And today he had two pretty bad 6,7 stools, but no blood at all to be seen.

Also, about last night and this morning, Isaac indicated he had a belly ache. Since he almost never expresses this, we take it pretty seriously, although it seemed to resolve with a little food and drink.

To our dismay, this evening Isaac found little sister's cup of honey oaties (the cereal with the traces of soy that has seemed to start this episode) and helped himself to four of them before we stopped him. It illustrates some of the challenge of having soy products in the home and also of reasoning with a two year old about what he can and cannot eat, and of course, about parenting in general.

Our take? Well, my thoughts are that we have another flare-up of inflammation triggered by the soy food. Although we removed the soy from exposure in his gut, I think his inflamed response has lingered but is in the process of healing.

I am looking into the amino acids of glutamine and lysine. Lysine has really seemed to help quickly resolve mouth ulcers I've had in the past, and it seems like these free form amino acids are reported to do well in the gut. We'll chat about that with the doctor at our Monday appointment.

For some reason we had also slacked off on the sacchromyces capsules for the three days leading up to this episode.

We are hoping that this is positively indicating that we can handle small reactions and that Isaac's body will respond well if not normally in order to "get back on track". However, it has been a week, and we still had bad stools today, even if they aren't bloody, so we'll continue with our observation over the next week and see if we can't give a fuller report.

We also have a doctor's appointment on Monday. Hopefully he will be of similar mind. He doesn't have much of a response whenever we mention that we've linked Isaac's bowel health to soy avoidance.

And to be fair, our soy observations may be only part of a big picture we have yet to realize. This is another item we've been taking seriously this past week. Partly because an author of another UC blog we follow died this last month, bringing to the forefront of our mind the full threat of the mortality of IBD. And this whole last episode made us really second guess... "traces of soy really has such an effect on Isaac's bowels?" "Okay, how long is he really going to make it before stronger meds and/or surgery, etc....?"

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.

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.

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.