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.

poop

for reference:

By this poop chart, we can discuss stool consistency with a common reference. For the most part, people with IBD seem to struggle with diarrhea, but also many are affected with constipation instead/too. In Isaac's case, as an infant, he went from normal infant breastmilk poop (which is not solid), to a similar consistency of brown soft stool when he started eating solids. At this time with most kids, their stool gets harder and "normal"--Bristol Poo #3 or #4.

But for almost 20 months, that soft stool seemed fine. We talked about it with the doctors, but they didn't seem too concerned. However, last July the diarrhea began to worsen in the sense of liquidity, frequency, and duration of the bowel movement. (As a note of interest, we think it was about when we switched from soy milk to almond milk that this happened. Even though we've determined that soy is what causes him to react immediately--at least for now.). Then it got worse and bloody and progressed worse and worse until a dramatic turnaround to #2 for three weeks, then a gradual shift to #4-#5 and worse for some time, and then a gradual improvement until about two weeks ago, whereupon he's right at #3-#4 once a day or sometimes skipping a day if he has a low residue day.

Keeping a food/poop diary is a must for us while Isaac is growing and developing. We need to get on that. What we need to develop is a good method for us collecting our menu items and to report on stool on the same calendar. Bonnie already writes down the menu plans but it's always on separate pieces of paper. Hmmm.... Any thoughts or ideas or what works for you?

IBD Jigsaw Challenge

How are your jigsaw skills? How are your competitive skills? Here is an online jigsaw puzzle challenge for you (my time was 54 sec). While you solve it, say a little prayer (or otherwise send some good thoughts) for all people with ulcerative colitis or Crohn's.

Crohnies and other IBD peeps, at that site, make your own puzzle with a picture of you and come back and post the URL here in the comments!

steroid-free, statistics, stool report

This week we've finished the tapering of prednisolone and now for medications Isaac has only his teaspoon of sulfasalazine three times a day, compounded in a goldenrod liquid form. If he eats any soy product, he'll have loose diarrhea the next bowel movement. If he drinks milk or consumes a lot of cheese, his stool seems to get softer--maybe not the next stool but at least the following one. He seems to do well otherwise, although currently his diet is mostly vegan and vegetarian.

We are getting more interested in the number of young children with IBD who also were exposed to antibiotics at a tender young age. For the science, however, we also want to see how many total children are exposed to antibiotics at a tender young age. Then compare the statistics and see if we have some significant correlation. Even if there is, it would be good then to see if we can determine a cause of IBD to be an imbalance of bacterial and microbial development in the digestive system. Perhaps if the genes are right, this imbalance can trigger IBD. Perhaps even if the genes are not right, this imbalance alone can cause IBD. It seems that when the immune system is reset, IBD is curable. As far as we can tell from testimonies, it seems that healing has taken place when somebody with IBD is able to heal themselves with juiced whole foods and diet change and/or probiotics. It's hard to gather stats for people who have a slight (or significant) run-in with IBD, but then heal completely. Because if someone heals completely, s/he isn't going to be counted in any sort of statistic set of IBD patients. S/He is just a normal person who is not going to be seeing the doctor about her/his condition. Moreover, the condition is probably retrospectively not going to be seen as IBD, which goes down as a mysterious chronic disease and not something that spontaneously resolves. I think I'm going to make some library trips and read up on the literature out there and see what more we can learn.

I think Bonnie wasn't thinking the other day when at the museum, she got some McDonalds for a lunch for the boys. They had chicken nuggets and french fries, but sure enough, we saw a loose liquidy stool yesterday (Actually the second stool of the day. The first one started fine but ended loose). It's unnerving because we don't want him to have another flare-up and it's this sort of thing that can induce one. We generally keep up on his poop in order to monitor this sort of stuff and also see how different foods affect him. For example, today we're going easy on fiber in order to not overwork his system. We'll see what we're looking at next before we go to the level of doctor notification....

linking together the IBD community

I would like to work more to link the IBD community. In order to do that, I will periodically link to sites that I also feature along the left side of the blog, like this, my post about valetudinarianism at crohnsforum.com.

Also, I want to share a great organized site called Crohn's End which catches a lot of my hope about the science of IBD treatment.

Next is a call-out for the best online meeting place, forum, and information spot for tots with IBD and the families of tots with IBD. I've found a few places, including the crohnsforum above and ccfa.org, but nothing specific and popular enough to entail what I envision. Maybe we'll get that in the works for a broader IBD in our HOMES project. Please send site suggestions if you've got them.

Lastly, hopefully you saw the comic about Crohn's, which gives a good visual representation of what life may be like for those with IBD.

Live on.

treatments and statistics and, to Isaac:

Oh, how I would love to get my hands on a diverse set of statistics ranging from holistic treatments, diet change, surgery, medications, and plainly see how much each was effective. Since there's such a range of actual illness chunked together as IBD, it's no surprise that some are cured by diet, some by surgery, some aren't cured, some seem to grow out of their problems, and so on.

Isaac is talking more and more. I'm looking forward to being able to talk about his experience with him. But as a parent, you know, I also want to savor the young years. So no hurry, Isaac, but it's nice to see you stringing sentences together.

Poopwise, you're doing great. We have a fun time stuffing delicious stews in your face, but we know you like the extra attention. Also, your mealtime prayers are the cutest. After a few more months maybe we'll understand better what you're saying!

Isaac, one thing you're going to understand by the time you are a teenager is science. Because a large portion of how you're being raised depends on the scientific method. You're going to know all about control, careful experiment. And just wait until we can get you to fill out your food input/output diary.

Love,
your parents.

IBD around the world

I got curious about the incidence of IBD in various countries. Immediately google delivered:

abstracts of a few journal articles about IBD in various countries

Here it looks like as you can expect. Lots of mystery and different conclusions where IBD appears and even how it appears. Overall it looks like a disease of affluence which is impacted at least as much by environmental factors (like diet) as genetics.

One of the obvious problems, however, is the idea that many IBD patients can go a lifetime without medical treatment or diagnosis. And since it is a personal and sort of taboo matter, and since nobody really wants to be probed, I imagine it tends to be under-represented in studies. In order to get more statistics, I'd love to be in charge of large broad-based survey studies of adults with ulcers, asthma, allergies, arthritis, and various GI pathologies, asking questions such as "Can you verify if you had excessive diarrhea as a toddler? Bloody stool ever?" and so on.

Then, continuing systematically, we want a giant spreadsheet of patients organizable by symptoms, indications, diagnoses, ages, gender, family history, treatments that work, treatments that don't work, allergies, and you name it. And then we try to sift out various types of IBD and see what patterns we can find. Or even if we do some statistical analysis on the hundreds of thousands of US patients. Am I too impatient here to think that at least we can gather up patients who react/don't react similarly, and see if we can get to some physiological tendencies/causes?

I know bright scientific minds are on this, but now that it has hit home so closely, I want to be closer to the cutting edge of research I guess.

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.

networking and pondering

Isaac is doing great these days, with nice normal poops, no apparent pain or problems. Our goal, as I mentioned, is to keep with our same routines for an extended time period and see how stable he stays and for how long.

Meanwhile, we have been perusing Crohn's Forum because it's a massive forum of people and families with family members who have IBD. Because IBD is a little under the radar in most social discourse, it might be surprising to people unaware how many people are affected and to what extent. Actually, sorting through the various statistics are dizzying, and I didn't find anything conclusive enough to post. But because it does affect so much those of us it affects, it is worth opening up social discourse to include it, and by the way, it's nice to be able to network with people who are going through similar experiences. Plus, since we are somewhat few and far between--and most times invisible to each other anyway, a website where people come together with IBD as a common denominator means you're going to get a lot more first-hand experience and observations.

I started listing links and sites on the right of the blog so you can visit other people's blogs, or information sites if you so desire.

Another thing I've been thinking about lately is my own immune system. When I was young I had such issues with allergies and asthma--so I want to explore more to see how my immune system might actually have been doing something similar (perhaps) to Isaac's. Also, for example, I want to explore a little more the possible incidence of IBD in my family members. Not the sort of IBD that gets you medicated and surgeries--but more like chronic diarrhea. And my mom seemed to have a lactose intolerance if I remember right. I'm curiouser and curiouser about all of this and how it relates.