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.

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.