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, 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.