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.

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.

6 comments:

  1. Dear friend,

    I am so sorry to hear about Isaac's woes. I highly recommend you check the Body Ecology Diet if you haven't already come across it. It is my new food bible. I was having a lot of digestion problems and sorted it out with the B.E.D. and hyro-colonics, and probiotics. Also, if he isn't already on organic veggies only....I would make the switch. Sorry if I'm repeating things you already know. I wish you the best of luck with this. You would think something as simple as eating would be intuitive or straight forward but there is so much to nutrition. Best of luck!

    Heart,
    Jenn

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  2. P.S. Here is a link about B.E.D. and IBS:

    http://www.bodyecology.com/07/09/06/body_ecology_ibs_solution.php

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  3. We've been praying for Isaac (and for your whole family) and will continue to do so.

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  4. You shouldn't do colonics on a child that is #1 having blood stools or #2 who is not constipated.

    I gave Bonnie handouts tonight that are based in medical fact about the diet and it's relation to IBD. I hope it helps. If you want printouts of the medical literature behind the recommendations, I'll send you that too.

    Let me know the final date for the colonoscopy so I can take the day off to watch the other 2 :)

    Love you all
    tete laura

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  5. My son is 3 been having poo issues since a baby along with abdominal cramps has vit d deficiency and aneamia with raised crp levels. Endoscope was normal just waiting on results from barium test now. On a bad day can be 15 poos a day not liquid but very soft with lumps of food not digested in it.

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  6. Thank you for writing. I hope your son heals well and you get a good diagnosis. Please keep us posted.

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