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.

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 pbskids.org, book time, some movie time with Jake and the Neverland Pirates, bubbles and water fun outside, and falling asleep in Aunt Liz's bed.

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.

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.

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.

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.

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.