Reading about so many other IBD experiences is both inspiring and overwhelming. On one hand you have a lot of cure/treatment stories which tend to give you hope that the right treatment/diet/circumstances will keep it from being chronic. On the other hand, you get the other side of it too, where one thing leads only to something else, and any number of drug treatments and surgeries later and still the pain and problems persist.
Somewhere in the middle of this hope spectrum we and most IBD patients exist. A really good interpretation of this is the spoon theory penned by lupus patient Christine Miserandino. It describes an aspect of chronic disease, and as far as I can say, also gives you a perspective of parenting a wee one diagnosed with IBD.
Today for example, we went to an activity at a church which is new to us (we are also new to our area). The kids we dropped off with a nursery there. We dropped them off with snacks, and we have paperwork filled out about Isaac not tolerating soy anything, which also includes almost every merchandised food product. However, almost the whole time I was eating and snacking on the foods provided to us adults, I couldn't help but think about how I sure hoped Isaac wasn't getting any of that sneaked to him by a caregiver with good intentions (soy things just really inflame him). Happily, nothing like that transpired, but it sure made me think about others who have to care so much about paricular allergies/diets/exposures.
Also, nowadays everything is going okay with him. But if it weren't, I can't imagine that we could do activities where Bonnie and I are both doing something for more than an hour (or maybe even that). Until, I guess, we know enough caregivers that we can make arrangements. We'll see--more no that as we experience it. It's probably best to worry about things as they occur and not so much before.
Saturday, February 5, 2011
Tuesday, February 1, 2011
networking and pondering
Isaac is doing great these days, with nice normal poops, no apparent pain or problems. Our goal, as I mentioned, is to keep with our same routines for an extended time period and see how stable he stays and for how long.
Meanwhile, we have been perusing Crohn's Forum because it's a massive forum of people and families with family members who have IBD. Because IBD is a little under the radar in most social discourse, it might be surprising to people unaware how many people are affected and to what extent. Actually, sorting through the various statistics are dizzying, and I didn't find anything conclusive enough to post. But because it does affect so much those of us it affects, it is worth opening up social discourse to include it, and by the way, it's nice to be able to network with people who are going through similar experiences. Plus, since we are somewhat few and far between--and most times invisible to each other anyway, a website where people come together with IBD as a common denominator means you're going to get a lot more first-hand experience and observations.
I started listing links and sites on the right of the blog so you can visit other people's blogs, or information sites if you so desire.
Another thing I've been thinking about lately is my own immune system. When I was young I had such issues with allergies and asthma--so I want to explore more to see how my immune system might actually have been doing something similar (perhaps) to Isaac's. Also, for example, I want to explore a little more the possible incidence of IBD in my family members. Not the sort of IBD that gets you medicated and surgeries--but more like chronic diarrhea. And my mom seemed to have a lactose intolerance if I remember right. I'm curiouser and curiouser about all of this and how it relates.
Meanwhile, we have been perusing Crohn's Forum because it's a massive forum of people and families with family members who have IBD. Because IBD is a little under the radar in most social discourse, it might be surprising to people unaware how many people are affected and to what extent. Actually, sorting through the various statistics are dizzying, and I didn't find anything conclusive enough to post. But because it does affect so much those of us it affects, it is worth opening up social discourse to include it, and by the way, it's nice to be able to network with people who are going through similar experiences. Plus, since we are somewhat few and far between--and most times invisible to each other anyway, a website where people come together with IBD as a common denominator means you're going to get a lot more first-hand experience and observations.
I started listing links and sites on the right of the blog so you can visit other people's blogs, or information sites if you so desire.
Another thing I've been thinking about lately is my own immune system. When I was young I had such issues with allergies and asthma--so I want to explore more to see how my immune system might actually have been doing something similar (perhaps) to Isaac's. Also, for example, I want to explore a little more the possible incidence of IBD in my family members. Not the sort of IBD that gets you medicated and surgeries--but more like chronic diarrhea. And my mom seemed to have a lactose intolerance if I remember right. I'm curiouser and curiouser about all of this and how it relates.
Saturday, January 29, 2011
life after roids
Well, we're still in the "weaning off" stage of discontinuing six weeks of full dose prednisolone for Isaac's UC. For a two and a half year old, parents are bound to experience mood changes and independence--a particular vigor of life which often leaves parents wringing their hands for the "terrible twos" to pass. Well, especially the last few weeks left us wringing our hands with little Isaac.
The best anecdote was when Bonnie listed off half a dozen bizarre scenarios which included the slinging of toilet water, climbing on top of the TV, jumping off the couch, bouncing everywhere like a bunny, getting into this or getting into that. By and large, it wasn't anything different from any run of the mill experience with a two year old. Then, she clarified, however, at the end of the list, that it was merely the antics of one day. Many of you who have had kids can understand, I know. Just string all of those such days together with no naps for a few weeks and then I think you've got it.
Now that we've cut back on the steroids, he is napping again and he seems to have his regular self back, already. You know from my writing that I was a little anxious about the steroids, so I am relieved to see that he seems to be getting back to normal just fine. Although I do still await what the next few weeks will bring, and of course I hope he has no long-term ill effects.
Bowel-wise, we're all good. From our previous experience, it's going to be hard to convince me that the steroids are necessary. The science of it goes like this. At our last check up, when we were given the clear to reduce the steroid dosage, they took no blood work. The results they gave us that day were from the previous bloodwork three weeks ago. In that time, we saw improvement, but now we have no baseline for what "good" is really like. We will see the doctor in another month (six weeks from the last appointment) though so hopefully Isaac will still be doing just fine. I am pretty optimistic about the probiotics, which seem to be getting the best and surest results. Although, like I've written about before--it's so hard to tell what is doing what since we're doing a lot all at once.
This isn't the first time I've written this, but we suspect cow's milk triggers reactions--less than soy but greater than any other thing we've identified as far as we can tell.
I'm pretty comfortable with our diet and Isaac. We eat omnivorously on Wednesdays, vegetarian on days that begin with T, and vegan on the other days.
We have wanted to get more involved with families around Houston who cope with IBD, but so far we haven't done any of that. Perhaps as we get settled into our house and this side of town we'll be more on top of social networking. Our goal at this point is to keep on top of intake and output and register any fluctations, keep up on the anti-inflammatory medicine (hopefully get him switched to non-antibacterial pills instead of the antibacterial liquid form), stay faithful with the probiotics and see if we can't keep his condition stable for a long a time as possible. Being involved with other families with similar goals would probably help.
The best anecdote was when Bonnie listed off half a dozen bizarre scenarios which included the slinging of toilet water, climbing on top of the TV, jumping off the couch, bouncing everywhere like a bunny, getting into this or getting into that. By and large, it wasn't anything different from any run of the mill experience with a two year old. Then, she clarified, however, at the end of the list, that it was merely the antics of one day. Many of you who have had kids can understand, I know. Just string all of those such days together with no naps for a few weeks and then I think you've got it.
Now that we've cut back on the steroids, he is napping again and he seems to have his regular self back, already. You know from my writing that I was a little anxious about the steroids, so I am relieved to see that he seems to be getting back to normal just fine. Although I do still await what the next few weeks will bring, and of course I hope he has no long-term ill effects.
Bowel-wise, we're all good. From our previous experience, it's going to be hard to convince me that the steroids are necessary. The science of it goes like this. At our last check up, when we were given the clear to reduce the steroid dosage, they took no blood work. The results they gave us that day were from the previous bloodwork three weeks ago. In that time, we saw improvement, but now we have no baseline for what "good" is really like. We will see the doctor in another month (six weeks from the last appointment) though so hopefully Isaac will still be doing just fine. I am pretty optimistic about the probiotics, which seem to be getting the best and surest results. Although, like I've written about before--it's so hard to tell what is doing what since we're doing a lot all at once.
This isn't the first time I've written this, but we suspect cow's milk triggers reactions--less than soy but greater than any other thing we've identified as far as we can tell.
I'm pretty comfortable with our diet and Isaac. We eat omnivorously on Wednesdays, vegetarian on days that begin with T, and vegan on the other days.
We have wanted to get more involved with families around Houston who cope with IBD, but so far we haven't done any of that. Perhaps as we get settled into our house and this side of town we'll be more on top of social networking. Our goal at this point is to keep on top of intake and output and register any fluctations, keep up on the anti-inflammatory medicine (hopefully get him switched to non-antibacterial pills instead of the antibacterial liquid form), stay faithful with the probiotics and see if we can't keep his condition stable for a long a time as possible. Being involved with other families with similar goals would probably help.
Monday, January 17, 2011
update series: the frustration
A while after we liberated Isaac's diet to include meat, wouldn't you know it, his poops started getting softer. And there soon came a time when we felt like he was going to start having problems again. I guess the indications were the softer poop, but also he seemed to be needing to poop longer, starting to show more signs of discomfort. And maybe there were the twice a day potty time instead of once a day. Anyway, the other thing was the smell. I remember at one point thinking, this smell reminds me of before.
So shortly after those signs he started to have some bad diarrhea and blood showing up. Intent to nip the problem in the bud, we got him in right away to the doctor, who prescribed a real steroid treatment that we should expect to adhere to for weeks. Well, we were thinking that it's probably best. But what was in store was more frustration.
Isaac responded to the steroids maybe, but not immediately, and not so fully as what we saw previously. Even after three weeks of steroids we couldn't really say that his poop was "better", although it definitely wasn't bloody and it did seem to be more acceptable than unacceptable (acceptable is formed but soft--we call it "soft serve" frankly--that may break apart some in water, but unacceptable is more liquidy or formed stool that immediately breaks apart completely when it hits the water). At that point the doctor said that we should continue for another three weeks and see if we can learn anything.
His sed rates for these times showed curious things. Sed rates measure the sedimentation rates of eurythrocytes in blood, and it is a good indicator of inflammation. Isaac gets blood drawn every time, but the blood they tell us about was "last time's" blood. So we have an unfortunate lag between real time and inflammation indicators. Anyway, I can't remember the sed details except that they were a little baffling, and the doctor explained that sometimes sed rates lag behind inflammation as well.
Anyway, we have had some good poop days, but we've also had some bad ones. The bad ones have taught us that surely Isaac has a bad and immediate reaction with soy products. We actually knew this before, but it was reaffirmed, and now we're really strict about no soy. When he had soy he really had cloudy liquidy diarrhea, in bouts that would have him up almost all the night.
He also has developed a history now with vomiting a few different times in the past month. And we don't mean vomiting just once, but vomiting uncontrollably in episodes that would keep him up all night. At this stage, we are eyeing these times of vomiting as unrelated and more like an increased susceptibility/reaction to a stomach bug. But of course, we can't help but think that this is colitis turning into Crohn's, or that maybe these are effects of medicines. His latest vomiting coincided with a nasty throat cough that afflicted Isaac this past week. Some cough/congestion medicine has helped with that and he is doing what we call fine.
On the positive side of things, all of this poop awareness has resulted in a fully potty trained boy. We are thrilled about that, of course. The transition was moreorless Isaac's doing. It seemed like especially with that streak (ha ha) of good poos, he just got it. And now he always notifies us and makes it to the bathroom, although he says poo-poo whether or not he has to pee or poop. And, also positively, we saw regular baby poop from Annie now that she's been eating solid foods. It might be a small celebration, but since we've experienced this ordeal with Isaac, we were a little concerned that she might suffer from something similar. Sure, it might be a super low occurrence, but maybe we've hit on just the specific gene balance that helps it show up.
Our diet lately? We have kept it pretty open, but open for us is not very meaty at all. Bonnie's plan, nowadays, is a diet where Wednesday is an omnivorous day. The days that start with T are vegetarian days, and the remaining days are vegan days. We want to get back into keeping a strict in/out GI diary, and that way we might track anything related to animal protein. We have been doing more with probiotics regularly these past couple weeks, and it seems like we can owe a lot of gut health to that.
So shortly after those signs he started to have some bad diarrhea and blood showing up. Intent to nip the problem in the bud, we got him in right away to the doctor, who prescribed a real steroid treatment that we should expect to adhere to for weeks. Well, we were thinking that it's probably best. But what was in store was more frustration.
Isaac responded to the steroids maybe, but not immediately, and not so fully as what we saw previously. Even after three weeks of steroids we couldn't really say that his poop was "better", although it definitely wasn't bloody and it did seem to be more acceptable than unacceptable (acceptable is formed but soft--we call it "soft serve" frankly--that may break apart some in water, but unacceptable is more liquidy or formed stool that immediately breaks apart completely when it hits the water). At that point the doctor said that we should continue for another three weeks and see if we can learn anything.
His sed rates for these times showed curious things. Sed rates measure the sedimentation rates of eurythrocytes in blood, and it is a good indicator of inflammation. Isaac gets blood drawn every time, but the blood they tell us about was "last time's" blood. So we have an unfortunate lag between real time and inflammation indicators. Anyway, I can't remember the sed details except that they were a little baffling, and the doctor explained that sometimes sed rates lag behind inflammation as well.
Anyway, we have had some good poop days, but we've also had some bad ones. The bad ones have taught us that surely Isaac has a bad and immediate reaction with soy products. We actually knew this before, but it was reaffirmed, and now we're really strict about no soy. When he had soy he really had cloudy liquidy diarrhea, in bouts that would have him up almost all the night.
He also has developed a history now with vomiting a few different times in the past month. And we don't mean vomiting just once, but vomiting uncontrollably in episodes that would keep him up all night. At this stage, we are eyeing these times of vomiting as unrelated and more like an increased susceptibility/reaction to a stomach bug. But of course, we can't help but think that this is colitis turning into Crohn's, or that maybe these are effects of medicines. His latest vomiting coincided with a nasty throat cough that afflicted Isaac this past week. Some cough/congestion medicine has helped with that and he is doing what we call fine.
On the positive side of things, all of this poop awareness has resulted in a fully potty trained boy. We are thrilled about that, of course. The transition was moreorless Isaac's doing. It seemed like especially with that streak (ha ha) of good poos, he just got it. And now he always notifies us and makes it to the bathroom, although he says poo-poo whether or not he has to pee or poop. And, also positively, we saw regular baby poop from Annie now that she's been eating solid foods. It might be a small celebration, but since we've experienced this ordeal with Isaac, we were a little concerned that she might suffer from something similar. Sure, it might be a super low occurrence, but maybe we've hit on just the specific gene balance that helps it show up.
Our diet lately? We have kept it pretty open, but open for us is not very meaty at all. Bonnie's plan, nowadays, is a diet where Wednesday is an omnivorous day. The days that start with T are vegetarian days, and the remaining days are vegan days. We want to get back into keeping a strict in/out GI diary, and that way we might track anything related to animal protein. We have been doing more with probiotics regularly these past couple weeks, and it seems like we can owe a lot of gut health to that.
Wednesday, December 29, 2010
update series: the liberation
At our doctor's appointment just before thanksgiving we got explicit instructions to liberate Isaac's diet, which meant give him some animal proteins. He weighed a pound less than his previous appointment and his iron levels were low, so let's beef him up, I think they thought.
I was still pretty insistent on getting back to the vegan diet and using vegan tools to increase weight and iron. But around this time it got pretty heated again, between Bonnie and me. One of the factors that kept coming up were my control issues. Now, I will admit I have some control issues. I always like to analyze my self and make improvements when necessary, and I think I've handled my control issues fairly well since I was 17. This particular situation didn't seem to me to be about my control issues AT ALL, but after hearing it a few times, I said something like, "You (directed at any audience which thinks so) think I want to be in charge of all this? I would happily accept the care/instructions of somebody else who will do better. But I am completely convinced that there are other, more reasonable and scientific treatments to try before steroids or at least before assuming we can't make progress with diet."
So in my controlling way, I relinquished control entirely and told Bonnie that she was in charge of what Isaac was eating and taking and so on. And at most I would only frown upon what I saw, and put in my two cents.
He was actually having softer bowel movements ever since that first couple weeks of nice solid poops. but these bowel movements were completely formed and still definitely within normal and healthy, it would seem. He continued in this way for another week or so after we "liberated his diet".
I was still pretty insistent on getting back to the vegan diet and using vegan tools to increase weight and iron. But around this time it got pretty heated again, between Bonnie and me. One of the factors that kept coming up were my control issues. Now, I will admit I have some control issues. I always like to analyze my self and make improvements when necessary, and I think I've handled my control issues fairly well since I was 17. This particular situation didn't seem to me to be about my control issues AT ALL, but after hearing it a few times, I said something like, "You (directed at any audience which thinks so) think I want to be in charge of all this? I would happily accept the care/instructions of somebody else who will do better. But I am completely convinced that there are other, more reasonable and scientific treatments to try before steroids or at least before assuming we can't make progress with diet."
So in my controlling way, I relinquished control entirely and told Bonnie that she was in charge of what Isaac was eating and taking and so on. And at most I would only frown upon what I saw, and put in my two cents.
He was actually having softer bowel movements ever since that first couple weeks of nice solid poops. but these bowel movements were completely formed and still definitely within normal and healthy, it would seem. He continued in this way for another week or so after we "liberated his diet".
update series: the deception
Well, it is my duty to write updates on our IBD experience. And a lot of time and drama has ensued since my last post. I will catch up in a series of posts which hopefully capture our experience chronologically.
The first day of our steroids resulted in solid poop. And we also, that day, went back to the basic elimination diet with the intent of various food introduction while keeping vegan. And the other important piece of information is that I, dad, was in charge of morning medications, which included the daily steroids.
Well, I was so tickled at that immediate response, and as I reported, uncomfortable about the steroids, that the next day I gave him 4.5 ml instead of 5ml to see if we could tell a difference. And day 2, also nothing but a nice solid poop in the evening. So day 3, I gave him only 4ml. Solid poop. On day 4 I realized that from then on I was going to be giving him only a little steroids, and not enough to be very significant. But I decided to go ahead and see if his reaction changed. And it didn't. For the next few days I kept reducing it to nothing at all, and meanwhile Isaac's poop was nice and healthy.
This was all good and well, except that I hadn't consulted with the doctor, or even Isaac's mom. So you can imagine how upset she was when about 12 days later I broke her the news. I had to tell her, because I was going somewhere and she was going to be giving him his morning medications, and I didn't want her to just give him full doses of steroids for no good reason. Well, she flipped out, and then I felt so sheepish I called the doctor's office to confess and see if they wanted to advise us differently.
Since Isaac's stool was nice and healthy they said not to worry about anything until our next doctor's appointment which was coming right up.
I will reiterate that this whole ordeal has been quite a strain for Bonnie and me. We keep reminding ourselves that we both want the same thing, but it is clear that I don't really trust conventional health care (pharmaceuticals, mainly) to get us to that point and Bonnie wants to trust it. So we butt heads about methods. However, let me say, it wasn't very good of me to pull what I pulled. What would have been better is clear communication with lots of persuasive reasoning, followed by an informed consensus between my wife, me, and the doctor.
Also in this span of time, Isaac went to his grandparents. And chomped on some bacon and I don't know what else, but I know that a vegan diet doesn't follow him around very well unless we're at home.
The first day of our steroids resulted in solid poop. And we also, that day, went back to the basic elimination diet with the intent of various food introduction while keeping vegan. And the other important piece of information is that I, dad, was in charge of morning medications, which included the daily steroids.
Well, I was so tickled at that immediate response, and as I reported, uncomfortable about the steroids, that the next day I gave him 4.5 ml instead of 5ml to see if we could tell a difference. And day 2, also nothing but a nice solid poop in the evening. So day 3, I gave him only 4ml. Solid poop. On day 4 I realized that from then on I was going to be giving him only a little steroids, and not enough to be very significant. But I decided to go ahead and see if his reaction changed. And it didn't. For the next few days I kept reducing it to nothing at all, and meanwhile Isaac's poop was nice and healthy.
This was all good and well, except that I hadn't consulted with the doctor, or even Isaac's mom. So you can imagine how upset she was when about 12 days later I broke her the news. I had to tell her, because I was going somewhere and she was going to be giving him his morning medications, and I didn't want her to just give him full doses of steroids for no good reason. Well, she flipped out, and then I felt so sheepish I called the doctor's office to confess and see if they wanted to advise us differently.
Since Isaac's stool was nice and healthy they said not to worry about anything until our next doctor's appointment which was coming right up.
I will reiterate that this whole ordeal has been quite a strain for Bonnie and me. We keep reminding ourselves that we both want the same thing, but it is clear that I don't really trust conventional health care (pharmaceuticals, mainly) to get us to that point and Bonnie wants to trust it. So we butt heads about methods. However, let me say, it wasn't very good of me to pull what I pulled. What would have been better is clear communication with lots of persuasive reasoning, followed by an informed consensus between my wife, me, and the doctor.
Also in this span of time, Isaac went to his grandparents. And chomped on some bacon and I don't know what else, but I know that a vegan diet doesn't follow him around very well unless we're at home.
Tuesday, November 2, 2010
roids and so on
We started steroids today, and I just have an awful feeling about it. Also today we took a step back in our diet. The last week has been a lot of digression in poop habits, and it was the week we re-introduced meat and cheese. Also we ran into a bunch of convincing information about animal proteins and UC.
The other medicine Isaac is on is something a lot like aspirin, which is made to specifically target the colon with anti-inflammatory action. Actually, I'm not that bothered by that. There is lots of long-term aspirin research out there and it just isn't that scary. However, for a reason not clear to me, this particular drug also contains a sulfa drug to administer the 5-ASA (the sulfa drug binds to it until it reaches the colon, where something about the colon-specific environment breaks down the connection and absorbs the 5-ASA). There are other drugs that do it differently. What bothers me is that the sulfa drug is an antibiotic, so it's got to be killing all the probiotics we're attempting to grow in that colon-specific environment, no? I'm waiting to hear from the doctor on that one. It might be that dosing a 13kg tyke is tricky (the non sulfa drug uses a pH coating which allows it to get to the colon before breaking down--but Isaac's dose is probably .2 or .25 the usual minimum dose).
We did see a small solid turd tonight, which is such a rare sight we can barely wait until the morning to see what else might come out of Isaac's colon.
The other medicine Isaac is on is something a lot like aspirin, which is made to specifically target the colon with anti-inflammatory action. Actually, I'm not that bothered by that. There is lots of long-term aspirin research out there and it just isn't that scary. However, for a reason not clear to me, this particular drug also contains a sulfa drug to administer the 5-ASA (the sulfa drug binds to it until it reaches the colon, where something about the colon-specific environment breaks down the connection and absorbs the 5-ASA). There are other drugs that do it differently. What bothers me is that the sulfa drug is an antibiotic, so it's got to be killing all the probiotics we're attempting to grow in that colon-specific environment, no? I'm waiting to hear from the doctor on that one. It might be that dosing a 13kg tyke is tricky (the non sulfa drug uses a pH coating which allows it to get to the colon before breaking down--but Isaac's dose is probably .2 or .25 the usual minimum dose).
We did see a small solid turd tonight, which is such a rare sight we can barely wait until the morning to see what else might come out of Isaac's colon.
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