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.

Wednesday, December 29, 2010

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".

update series: the deception

Well, it is my duty to write updates on our IBD experience. And a lot of time and drama has ensued since my last post. I will catch up in a series of posts which hopefully capture our experience chronologically.

The first day of our steroids resulted in solid poop. And we also, that day, went back to the basic elimination diet with the intent of various food introduction while keeping vegan. And the other important piece of information is that I, dad, was in charge of morning medications, which included the daily steroids.

Well, I was so tickled at that immediate response, and as I reported, uncomfortable about the steroids, that the next day I gave him 4.5 ml instead of 5ml to see if we could tell a difference. And day 2, also nothing but a nice solid poop in the evening. So day 3, I gave him only 4ml. Solid poop. On day 4 I realized that from then on I was going to be giving him only a little steroids, and not enough to be very significant. But I decided to go ahead and see if his reaction changed. And it didn't. For the next few days I kept reducing it to nothing at all, and meanwhile Isaac's poop was nice and healthy.

This was all good and well, except that I hadn't consulted with the doctor, or even Isaac's mom. So you can imagine how upset she was when about 12 days later I broke her the news. I had to tell her, because I was going somewhere and she was going to be giving him his morning medications, and I didn't want her to just give him full doses of steroids for no good reason. Well, she flipped out, and then I felt so sheepish I called the doctor's office to confess and see if they wanted to advise us differently.

Since Isaac's stool was nice and healthy they said not to worry about anything until our next doctor's appointment which was coming right up.

I will reiterate that this whole ordeal has been quite a strain for Bonnie and me. We keep reminding ourselves that we both want the same thing, but it is clear that I don't really trust conventional health care (pharmaceuticals, mainly) to get us to that point and Bonnie wants to trust it. So we butt heads about methods. However, let me say, it wasn't very good of me to pull what I pulled. What would have been better is clear communication with lots of persuasive reasoning, followed by an informed consensus between my wife, me, and the doctor.

Also in this span of time, Isaac went to his grandparents. And chomped on some bacon and I don't know what else, but I know that a vegan diet doesn't follow him around very well unless we're at home.

Tuesday, November 2, 2010

roids and so on

We started steroids today, and I just have an awful feeling about it. Also today we took a step back in our diet. The last week has been a lot of digression in poop habits, and it was the week we re-introduced meat and cheese. Also we ran into a bunch of convincing information about animal proteins and UC.

The other medicine Isaac is on is something a lot like aspirin, which is made to specifically target the colon with anti-inflammatory action. Actually, I'm not that bothered by that. There is lots of long-term aspirin research out there and it just isn't that scary. However, for a reason not clear to me, this particular drug also contains a sulfa drug to administer the 5-ASA (the sulfa drug binds to it until it reaches the colon, where something about the colon-specific environment breaks down the connection and absorbs the 5-ASA). There are other drugs that do it differently. What bothers me is that the sulfa drug is an antibiotic, so it's got to be killing all the probiotics we're attempting to grow in that colon-specific environment, no? I'm waiting to hear from the doctor on that one. It might be that dosing a 13kg tyke is tricky (the non sulfa drug uses a pH coating which allows it to get to the colon before breaking down--but Isaac's dose is probably .2 or .25 the usual minimum dose).

We did see a small solid turd tonight, which is such a rare sight we can barely wait until the morning to see what else might come out of Isaac's colon.

Thursday, October 28, 2010


Diagnosis: ulcerative colitis. Did you know its incidence is around 3 in one million for his age group? So he is one of the about 15 kiddos here in Houston with similar conditions. Actually, they have a center here for families with kids with IBD. That's nice. I think we'll get involved.

The doctor is hopeful, and so are we, that he will respond positively to an anti-inflammatory medication he will presumably take for the rest of his life. We'll keep you posted.

Monday, October 25, 2010

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!

Sunday, October 10, 2010

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.

Monday, October 4, 2010

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.