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.

Saturday, November 19, 2011

healing or not healing....

Well, without steroids we did notice natural healing, but the next month we again saw runny stools and blood evident...  There isn't a lot of blood, so we and the doctor have been waiting to see what happens.  Isaac's health otherwise is great.

At our doctor's appointment yesterday we scheduled another colonoscopy and talked about where this is going.  Our doctor is interested in Remicade or Humira and wants us to think about that.  They also want to double check on the diseased parts to re-rule out Crohn's (in thinking ahead about a colectomy).

My gut reaction is to hold off on everything so as to not accelerate towards surgery.  It seems like Isaac is thriving well in spite of the gut condition, and more time allows us to check allergies and other food reactions and maybe get a better grasp of the situation and be able to handle it without the exotic medications or removing bowels.  Also, it allows time for more treatments to develop.

Sunday, October 9, 2011

Healing Without Steroids

Without steroids, this is what we experienced. The same number of days of bloody stool, which has seemed to resolve itself. For the past few weeks we have been bloodless, with poops improving in consistency until now, where everything is as good as it's been, which are nice healthy 2s and 3s (by Bristol) once everyday or every other day. What we observed is practically the same as our last run of steroids, where we had 17 days of bloody stool. This time it was 18 days without prednisolone, except for a few traces of blood we observed a couple days into the "bloodless days". Overall, we were really tickled that he healed from this flare-up, and so quickly.

Apart from the natural healing of a healthy human body, and from divine intervention, for the record, we can also record the following:

We again had a enema treatment early into the bloody stools (which didn't really seem to be so effective, but who knows).
We didn't really get to any dietary changes we were talking about, with the SCD or other diet changes (our normal diet these days includes some meat and dairy, almost completely soy free, and mostly all healthy natural and homemade foods), except that we had a low-residue diet during the bloody stool phase.
We did start a daily regimen of VSL#3, a high potency probiotic. Isaac had finally gained some weight and we increased our doses of sulfasalazine and azathioprine. We discounted this from his healing because those drugs by themselves don't seem to bring about healing according to the studies. But hopefully we have the right dose to maintain remission for a long long time. Isaac also got a fresh run of L-Glutamine.

We are really happy. We had a colonoscopy scheduled and everything. The doctor was fine with being hopeful and patient to see if he came around on his own, and when we started to see improvement we went with the flow and canceled the colonoscopy. One downside is that the VSL has a nasty taste and it's difficult to get it into Isaac sometimes. We hide it in ice cream and yogurt and drinks, but it's tough.

Saturday, September 10, 2011

the return of the red toilet water

And, now we're back at it. At the beginning of this month, we again saw blood showing up in Isaac's poop. Of course, at first, we hoped that it was just a quick bloogie, but no, it persisted for days and has continued to persist.

At this juncture, we had already pre-agreed that when it came to blood again we would avoid steroids and see what the natural healing process is like. Assisted by natural means other than pharmaceuticals. Now, we'll go ahead and continue with the sulfasalazine and the azathioprine. And actually, we're even going to go strong with the potent probiotics sold as VSL#3. And we will continue down the oral with diet modifications in hopes of effecting change.

Our hope here is to see what the natural healing process is like. If Isaac is going to have semiannual flare-ups, but if his own body heals within a month, then we will be no worse off than we have been the past year with medical interventions, but without the side-effects and extra risks. The long term risk of chronic inflammation is the scar tissue built up over time, but right now we're weighing that with colectomy. And our appointment to discuss Remicade and surgery is actually next week, so it is a little premature for me to tell you what we decide, but this is what we're thinking now.

And so far so good, with the new probiotic regimen. We started Tuesday, and already are having a hard time finding blood in the poops today. But we're patient with our excitement these days. Also on the agenda is the SCD. Instead of starting all-in, we are planning to cut one item at a time to see if it helps, but we'll have to see, because if his bloody stools do in fact persist, we will probably go all-in anyway. All-in means no more starch or gluten and so on. And it would be quite a drastic change from our current nearly vegan but no soy diet, but we'll see. I'll keep blogging about the developments of our adaptive diet.

Fortunately, Isaac has been growing in height and weight, and other than his extra toilet time and some stomachaches on the onset of the return of the red toilet water, he is healthy and robust and a delightful little man. Right now he is watching Tangled and his favorite animals at the zoo have been rhinos lately.

Sunday, August 7, 2011

Chewing the Fat

This week I just need to direct you to Bonnie's we talk dinosaur blog. It talks about Isaac, like usual, but specifically about his weight, which is what is on our minds these days. He is still a healthy weight, but he hasn't gained weight really, in the past 10 months.

We are in Louisiana now, visiting grandparents and Aunt Liz before the school year picks up again in Houston. Isaac's activities today included toy time, watching brother with his baking soda and vinegar rocket, some computer games at, book time, some movie time with Jake and the Neverland Pirates, bubbles and water fun outside, and falling asleep in Aunt Liz's bed.

Wednesday, July 20, 2011

steroid free again again

And now we enter that phase of hope that everything will remain as it is or better yet, get better. Other than Isaac's sulfasalazine and azathioprine (and folic acid and probiotics), he and his colon are living a healthy life.

Some of our latest exploits can be found on Bonnie's we talk dinosaur blog. What we're looking forward to this weekend is our first boys-only camping trip into the wilderness of a yet-to-be-determined Texas state park.

One thing I want to mention as a sort of follow up to our last post is that when everything is going well with us, we really appreciate it. Our prayers and thoughts remain with those with IBD who are suffering, that each sufferer finds remission or at least some relief or peace soon!

Also, for those of you just stumbling on some IBD blogs, I point you to the right of my blogspot, where you can find other IBD stories which may interest you.

Wednesday, July 6, 2011

chronic amplification

Having a young tot with a chronic disease seems to amplify both the good and the bad. We probably appreciate Isaac's health and milestones more than we might otherwise, but when something new and scary happens we're also all the more concerned. The concern of this week involves what we are going to call a small blood blister on his butt. And of course, we were initally bombarded with all the feelings of fistulae, disease advancement, undiagnosable problems, surgery. But then we took a step back, took some magic breaths, googled for a while, and decided not to be so worried about it for now. Slowing down the alarm bells reminds us to take it easy and of course report it to the doctor. It's not like all of the sudden Isaac is having pain or has any indications that anything is wrong. Of course it's good to notice change, so we'll keep an eye on things and see how it goes.

Everything is going great as far as poop goes. We are just ready to finish up with this long steroid weaning. And for that the doctor is dragging his feet a little to make sure the azathioprine (Imuran) levels are at a therapeutic level for a human Isaac's size. His prednisolone dose is small, but it's still there. And meanwhile he's growing an excess of fuzzy body and facial hair!

And that reminds me, we have tended to downgrade our strict attentiveness to soy. Since Isaac got this last flare under control he has been exposed to definite traces-of-soy foods without any noticable effect. When we get off the steroids completely we will surely play it safe, especially for the first months, but we might be more skeptical than before that it is soy and soy alone that triggers the flare-up. I think the model in our minds is something more like: Isaac's guts have some imbalance, and any little thing is bound to trigger the flare-up at that time. And maybe it was traces of soy, but other times soy might be fine for him, and it might just as well been other grains, dairy, meat, or anything really.

Tuesday, June 28, 2011

health insurance

Are hearts sank for a while when we were notified by Medicaid that we longer qualify and that after next month we will no longer get taxpayer sponsored insurance. A closer second look eased our initial reaction though, because we still qualify for CHIP coverage, which is still affordable for us now. In fact, as you can imagine, we're really happy to advance out of poverty if that's what you want to call it. But that first notice really caught us, since our budget stretches pretty thin. And we know that a) coverage for our family costs us more than $1000 per month more than what we currently pay, and b) with Isaac's health care, we'd definitely be paying a lot for doctor and pharmacy copays and I'm sure we would be maxing out deductibles each year. Well, as it is, we'll do our best to get to that bridge and cross it when we do.

Also, I am being a little pessimistic. If Isaac continues in remission for years, our extra costs would be limited by his medicine costs and routine visits only.

Monday, June 20, 2011

writing about writing

Weblogs are a good way to share experience. As for IBD in our home, I am encouraged by readers who write, readers who only read, and other writers who don't even read. Lately we were included in a list of IBD blogs and websites. Also, I am continually reading about old patients, new patients, stories new and old, and anything else IBD in forums and in other places which list randomly 40 at a time on the right side of my blog....

I definitely recommend blogging for the journal aspect, for connecting with others in similar situations, and for helping others down the road. As you share your experience, it can really help someone else in a similar situation.

We are still weaning Isaac off of the prednisolone. And everything seems to be going just fine as it has been for a while....

Last week was Vacation Bible School at our church, and Isaac and his brother had a good time each day. Yesterday, they helped lead some of their songs during church, and how delightful it was to see little Isaac doing his body movements and gestures for the songs... Actually I had quite a moment, since one of their songs (How Great Thou Art) was one of my late grandmother's favorites. I am a bridge between her and them, and maybe it is all but impossible to fully relate the connection, but how delightful to see her progeny celebrating the same song that moved her decades ago.

Thursday, June 9, 2011

Isaac and Imuran, so far so good

Isaac continues to do well. His latest bloodwork showed lower 6-TG levels than his doc wants to see, so we are slightly increasing his consumption of Azathioprine (Imuran). Instead of every other day doses he is now getting 5 doses a week. We continue to taper his prednisolone. We have another doctor's appointment tomorrow.

6-TG is a derivative of thiopurine. There is a lot to learn. If you're interested, you can start with this article which deals specifically with IBD. In that article, you, like me, might get a little excited about giving such a drug to a young'un. But having said that, our doctor understands and is concerned about the risks and we are monitoring Isaac closely while he is introduced to this drug (for the first several months) to make sure his body tolerates it just fine.

The poop scoop: We remain in a phase of normal poops.

Friday, May 27, 2011

pharmacy fun

Today we drove around and around looking for our new pharmacy, the Inwood Pharmacy in north Houston. We had neglected to grab the phone before we left, so we were just going by our memory of where it appeared to be on google maps. But no pharmacy was evident. I stopped at a place which was part of a hospital campus in order to ask about where this pharmacy might be. And lo and behold, there was the Inwood Pharmacy tucked inside, with no signage whatsoever outside its doors.

But let me tell you--we are happy to have found it. The owner is the pharmacist, who will compound our special drugs, and he filled our first prescription in a timely manner. The place is small and exactly how a pharmacy should be, where you talk to the pharmacist and know who is filling your prescriptions.

We switched from chain pharmacies after having bad luck with the Walgreens near us. Not all Walgreens pharmacies compound drugs, first of all, there are only a few in Houston. One was pretty close to where we live, but we kept running into problems. First it was that they don't compound on the weekend, but they neglected to tell us. Next, when we called in our refill early so they could compound it before the weekend, it wasn't early enough. Finally, there was just no good reason, and they had our drugs ready a couple days later than we expected. In Isaac's case, we don't want to miss doses, especially multiple doses. And he runs out of the medicine pretty quick, because he has 7mL three times a day.

Our new pharmacist, Vince, gave us two nice sized bottles so that we won't have to keep coming back so often. And he was straightforward about when he could get the drug components and when we would have it completed. We like that. On a day like today, when we make sure to fill something before a long weekend, it is good to know that we have somebody reliable we can count on.

Having said all that, if Isaac starts to relapse again, Bonnie and I are on the same page about trying the more potent VSL probiotics and giving probiotics and diet a good long run before we resort to steroids. We didn't get too far in slowly introducing the SCD (Specific Carb Diet), where we decided to eliminate first sugar, then lactose completey (he already doesn't have much dairy at all), gluten. In fact, he's cleared up really well now and having good old regular poop and everything seems hunky dory. Of course we think, well, this is the good thing about the steroids, bad as I believe them to be... but of course, we don't really know that he wouldn't naturally get to this healed point without--or that anything else we might do might bring about a similar result.

We have these facts. Isaac was relapsed down to stools with blood (albeit small amounts) daily. (This started with the soy incident at the end of March. And even though we got back to our good soy free, vegetarian-no-dairy-milk diet). After 11 days he started daily doses of the steroid medication prednisolone. A couple days later he also got a water cleansing enema. After five days of the steroids we saw the last blood in his stool. But except for a few good starts (sometimes a bowel movement would start of like a "perfect 3" and then degrade to a watery 7) they remained smelly (We label the smell "UC smell" because it's become distinctive), and generally unhealthy for about 10 days after taking steroids. At that point, the good stools took over and have seemed to improve in consistency and regularity. So, anyway, 17 days of stool with blood.

My my, I've got to get less wordy.

Saturday, May 21, 2011

Isaac these days

Since I'm changing the website photo I thought I'd put up the old one, plus a bonus photo of little Isaac. He's turning 3 in 8 days!

The med situation is that we are tapering down the steroids (the rate will depend on analysis of his blood--to see how much the Imuran is affecting him by now). Isaac's response to steroids wasn't as responsive this time as before--as far as his mood changes and "wiredness". About affecting his bowels, let us give the poop scoop below. We haven't started the VSL#3s yet but it's in the plans. Since he's doing alright, we might just wait for another relapse or hint of relapse before we try that....

Poop scoop: All better as far as poop goes. We're seeing nice 3s and 4s every day or every other day, and there seems to be no other indication of inflammation as far as we can tell....

Monday, May 9, 2011

shocked in spite of myself

We are continuing meds, and I have to repeat what I mentioned to Bonnie the other day, which is that I'm really surprised--shocked even--that our entire response to Isaac's condition is going on the way it is. What I mean by this, mainly, is that I am generally so pro-natural if not anti-pharmaceutical when it comes to treatments. Yet here we are finishing our fourth week of our second (or third--if you count that one isolated week) round of steroids since October, and Isaac is now taking a second drug--this one suppresses the body's immune response.

What I wish? I think we could effectively test out a few treatments which involve mostly diet and probiotics. Actually, by doing this alongside of what the doctor orders, I think we have found some good information about some of what affects Isaac. We have thought, from time to time, that we're onto something with probiotics we give him, but we don't have good evidence of that. We are going to get some strong concentrated probiotics to help alter Isaac's natural intestinal microbiome, but as he seems to be in a more "healthier" stage now, it may only help loosely point to what is/isn't effective. There are also many things out there that our doctor is shy about. Like probiotic enemas, and bacteriotherapy (an infusion of a donor's healthy stool to help adjust the culture of Isaac's gut).

So why is our doctor about these treatments and not shy about pushing expensive carcinogenic drugs to our two year old, talking about them as a pathway to probable surgery? One reason, of course, is the trend of research and science behind health care. A lot of research gets funded for things that make money. And simultaneously, the trends of health care point to miracle pills or substances which can treat symptoms and/or fix conditions as opposed to more mysterious treatments which contain components which are difficult to isolate and control. And that's especially true if the treatment does nothing more than encourage a body's system to do its job even though modern medicine has deemed the body's system pathological. Then there's the actual money factor, which isn't just about the science of medicine, but the actual money driven aspect of what pays and what doesn't. These expensive medicines Isaac takes help, in a twisted short-term way, to drive our economy. A cheap fecal transplant only helps the economy in the long run. I really hate that analysis, but that's our health care system for you.

I got a good private response from a reader about a situation similar to ours, where this family's toddler was diagnosed at a similar time. Their response to the diagnosis has leaned toward the nonpharmeceutical. One difference that Bonnie points out is that Isaac's case seems more moderate-severe whereas the reader's child's situation may be more mild-moderate, but in both cases we have diarrhea and blood. And in both cases, honestly, it seems like the outcome has been about the same. Some improvement, but some "relapse" in our case with drugs, and the same to be said for the nonpharmaceutical approach. So I ask myself, what are we doing exposing Isaac to months and months of steroids, for the same results we can get by going with probiotics and dietary changes?!

Of course you may anticipate the answer. We don't want Isaac to miss out on growth spurts. we don't want scar tissue to develop in his guts which may lead to surgery sooner rather than later. And we don't know--maybe without drugs, he would have needed surgery by now.

Anyway, this is my struggle. We'll probably wrestle some more, see how the VSL#3 goes, continue little by little finding more out with our dietary/stool/symptom diary, and who knows. I would still be thrilled to work with a scientist/doctor who wants to investigate this bacteriotherapy (I realize now that I have yet to write a good entry for the fecal transplant).

The poop scoop: Isaac has continued to poop pretty well, going once a day or once in two days. His last stool was a 4-5, but he also had an ideal 3-4 the time before that.

Monday, April 25, 2011

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.

Tuesday, April 19, 2011

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.

Monday, April 11, 2011

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.


















































3,4 5,6






3,4 5,6






4,6 4,5












6b 6b 6b




6,7 5


5,6 5,6b










6,7 6,7




7b 6b

Saturday, April 9, 2011

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....?"

Saturday, April 2, 2011

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.

Sunday, March 27, 2011

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.

Sunday, March 20, 2011

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.