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

update series: the frustration

A while after we liberated Isaac's diet to include meat, wouldn't you know it, his poops started getting softer. And there soon came a time when we felt like he was going to start having problems again. I guess the indications were the softer poop, but also he seemed to be needing to poop longer, starting to show more signs of discomfort. And maybe there were the twice a day potty time instead of once a day. Anyway, the other thing was the smell. I remember at one point thinking, this smell reminds me of before.

So shortly after those signs he started to have some bad diarrhea and blood showing up. Intent to nip the problem in the bud, we got him in right away to the doctor, who prescribed a real steroid treatment that we should expect to adhere to for weeks. Well, we were thinking that it's probably best. But what was in store was more frustration.

Isaac responded to the steroids maybe, but not immediately, and not so fully as what we saw previously. Even after three weeks of steroids we couldn't really say that his poop was "better", although it definitely wasn't bloody and it did seem to be more acceptable than unacceptable (acceptable is formed but soft--we call it "soft serve" frankly--that may break apart some in water, but unacceptable is more liquidy or formed stool that immediately breaks apart completely when it hits the water). At that point the doctor said that we should continue for another three weeks and see if we can learn anything.

His sed rates for these times showed curious things. Sed rates measure the sedimentation rates of eurythrocytes in blood, and it is a good indicator of inflammation. Isaac gets blood drawn every time, but the blood they tell us about was "last time's" blood. So we have an unfortunate lag between real time and inflammation indicators. Anyway, I can't remember the sed details except that they were a little baffling, and the doctor explained that sometimes sed rates lag behind inflammation as well.

Anyway, we have had some good poop days, but we've also had some bad ones. The bad ones have taught us that surely Isaac has a bad and immediate reaction with soy products. We actually knew this before, but it was reaffirmed, and now we're really strict about no soy. When he had soy he really had cloudy liquidy diarrhea, in bouts that would have him up almost all the night.

He also has developed a history now with vomiting a few different times in the past month. And we don't mean vomiting just once, but vomiting uncontrollably in episodes that would keep him up all night. At this stage, we are eyeing these times of vomiting as unrelated and more like an increased susceptibility/reaction to a stomach bug. But of course, we can't help but think that this is colitis turning into Crohn's, or that maybe these are effects of medicines. His latest vomiting coincided with a nasty throat cough that afflicted Isaac this past week. Some cough/congestion medicine has helped with that and he is doing what we call fine.

On the positive side of things, all of this poop awareness has resulted in a fully potty trained boy. We are thrilled about that, of course. The transition was moreorless Isaac's doing. It seemed like especially with that streak (ha ha) of good poos, he just got it. And now he always notifies us and makes it to the bathroom, although he says poo-poo whether or not he has to pee or poop. And, also positively, we saw regular baby poop from Annie now that she's been eating solid foods. It might be a small celebration, but since we've experienced this ordeal with Isaac, we were a little concerned that she might suffer from something similar. Sure, it might be a super low occurrence, but maybe we've hit on just the specific gene balance that helps it show up.

Our diet lately? We have kept it pretty open, but open for us is not very meaty at all. Bonnie's plan, nowadays, is a diet where Wednesday is an omnivorous day. The days that start with T are vegetarian days, and the remaining days are vegan days. We want to get back into keeping a strict in/out GI diary, and that way we might track anything related to animal protein. We have been doing more with probiotics regularly these past couple weeks, and it seems like we can owe a lot of gut health to that.

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".

Our Rundown

IBD in Our Home reports our experiences. Further, it aims to cultivate community support and to increase the collective experiential learning of anybody curious about IBD or who is affected by a member of the household with IBD.

Our two year old child Isaac is about to become diagnosed, we presume, with ulcerative colitis or another version of Inflammatory Bowel Disease. Not long ago (less than a month) it seemed like quite a shocker to relate a chronic disease to this quite perfect and bubbly lovable kiddo. But the diagnosis seemed probably based on what I could find on the internet, and since then, all tests seem to point in that direction. A colonoscopy is scheduled for next week, but it might not happens because of insurance reasons. And honestly, I'm not that eager for the scope, although I would like to get a treatment going to help heal his bowel inflammation (whatever the underlying disease or cause).

It is an incredible stressor on our spousal relationship. It seems like whatever I say seems to set off my wife, and vice verse, regarding diagnosis, prognosis, treatment, role of diet, etc. This is easily as much friction as we have experienced in our marriage. And I wouldn't even say we have vastly different viewpoints--it's just that we are intense about our feelings for diagnosis and treatment, and we're critical of each other's desires, since the amount of "control" we have ourselves is so very limited in the first place. For example, I would be happy to forego the colonoscopy, at least for now, and get going right away on a steroid treatment, where as Bonnie feels like the knowledge we can gain from the colonoscopy is essential to Isaac's eventual prognosis and treatment details. As it is, it seems like Fate might be taking care of it, since we learned today that our insurance isn't accepted by the doctor we've already seen who scheduled the scope.

Meanwhile, we are taking a treatment in our own hands, which we should have concerned ourselves with at a higher priority much earlier. Isaac never switched from baby breastfed poop (which is primarily runny and not at all formed, and is, actually, a lot like mustard, to remind or inform you), to solid poop. Our first child made this switch naturally when he changed to solids, and I understand that's normal. We always had our eyebrows raised at Isaac's stool, because of this, but our measures included a mediocre attempt at switching some foods to check for allergies. As long as we could tell, we could detect no reactions, but we were never inclined to investigate thoroughly or long-term.

We brought our concern to our doctor early on, but heard about toddler's diarrhea, and pretty much kept assuming, like our doctor, I guess, that it was a temporary situation which would correct itself. We cut down on fruit juice, which our doctor mentioned, and tried in our non-desperate way to get Isaac to eat yogurt.

Our own diet? Ironically, about a year ago, we went mostly vegan/vegetarian. We didn't cut meat from our boys' diets as much as we did from ours, but especially in retrospect it seems like Isaac ate more and more meat when we ate less and less. I'll expand more on Isaac's lifetime diet history another time.

Nowadays, Isaac is going mostly vegan too. And soft, easy to digest foods. This just really started the other day, though. The past two weeks he's been on meat and milk restrictions, but we're going to continue with an elimination diet and see if we can strictly understand some diet sensitivities.

The other big deal nowadays is colonics. It became clear lately that this sort of thing is going to help the little guy. So finally yesterday I went and got an enema kit and we're going down that path. I had a big mental block about this, but it was easy to overcome the more I read about it and the more I sensed the desperation of Isaac's bowels and the way the Health Care and Insurance system is bound to treat him. Our first experience with it was notedly positive, so we'll continue and I can report more about that later too.

Isaac is 28 months old, and since he was weaned at 12 months, he has had bowel issues for about 16 months at least. Overall, he is happy, bubbly, and other than his diaper contents, no one would expect a pathology. But in the past two months his diarrhea became bloody and, more recently, persistently worse. How bad? Sometimes it's just blood and mucus. Mostly it's runny, with blood. And we also still see soft stools (not at all formed, but not liquidy). His blood levels are acceptable, to assuage your immediate concern if you have it.

My hope is that with diet and colonics we can help his body get over the flare-up while we wait for the doctors to schedule appointments and make their prognoses. I will keep this blog up-to-date so we can share this experience and perhaps hear from others of you if you have something to share.