My brother-in-law just sent me a great article about a drug used for people coming off of alcohol and narcotic additions that has been used successfully with Crohn's (89% of patients using it showed improvement, and 67% achieved remission of symptoms!), and I plan to ask my doctor about it next week at my appointment.
Click on this sentence to read the article.
Tuesday, May 30, 2006
Still doing well!
Well, I survived a holiday weekend of eating. I graduated to two solid meals on Sunday, and it is going great! I'm having small meals, on the low-residue/low-fiber diet that I got from the hospital, and they're going great. I'm so happy to be able to satisfy some of the cravings I've had since the hospital: cheese, bread, pasta, tomato soup. Such simple foods, yet such a problem at times. I'm still anticipating being well enough to have pizza sometime soon.
I feel like I'm really understanding what it means to rest from this obstruction. I feel like it's almost become intuitive: I need to rest my bowels so, for instance, I should not snack during the day on little solid foods, even if I know that I could digest them, because then my intestines are having to work and that doesn't allow them rest. I should just eat solid foods at mealtimes.
And I need to create a relaxed space in my mind and body while I'm consuming food, even if I'm at a loud picnic, and it's pretty easy to do: breathe slowly, relax my stomach muscles, sit up straight, be aware of chewing thoroughly. And this allows me to be more present to those I'm eating with, too, to look around and listen.
It's a gift to be learning how to take care of myself, how to respect my body as it heals instead of trying to bully it into becoming healthy. Thank you, God.
I feel like I'm really understanding what it means to rest from this obstruction. I feel like it's almost become intuitive: I need to rest my bowels so, for instance, I should not snack during the day on little solid foods, even if I know that I could digest them, because then my intestines are having to work and that doesn't allow them rest. I should just eat solid foods at mealtimes.
And I need to create a relaxed space in my mind and body while I'm consuming food, even if I'm at a loud picnic, and it's pretty easy to do: breathe slowly, relax my stomach muscles, sit up straight, be aware of chewing thoroughly. And this allows me to be more present to those I'm eating with, too, to look around and listen.
It's a gift to be learning how to take care of myself, how to respect my body as it heals instead of trying to bully it into becoming healthy. Thank you, God.
Friday, May 26, 2006
Going well
Things are going very well. My little meals are growing in complexity, and my body is handling them very well. I feel gurgling in a healthy way, no pain, no trapped gas, no nothing. It's lovely. I feel like the steroids are working. Praise the Lord!
I'm quickly weaning off my Prednisone, and today I started the first of five days of 10mg of Prednisone, and after these five days are up, I'm free of it and back on a similar medicine regime as before the obstruction. That's frightening, because it didn't work before, in a way, but I am also in a better place, I think. My prayer is that the less-strong steroids I'm going back on (Entocort) will continue the work of the major steroid (Prednisone) in my body. And I have some faith that it will.
Things feel much more normal, except for all the drinking of Boost. My body is feeling more familiar to me, which is such a relief. And my husband and I were talking about it, and we both feel like I know my body better now and am treating it differently than I ever have, in good ways. I feel much more attuned to my body, not just in the gut but also with recognizing stress and emotional fluctuations (which are much reduced due to the lessening Prednisone influence). I feel more gentle with my body, more forgiving, though that co-exists with feelings of frustration and hatred toward my broken body. I think that I'll try and treat my body with great care and gentleness. Hatred and frustration can only create badness within me.
These words from Psalm 139 (which was read at our wedding) come to mind:
"I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be."
Who am I to say my body is no good? God created it, and He is amazing. I have to trust that when he ordained my days, looking at my body and knowing what lay ahead, He didn't just say, "Oh well, good luck!"
I'm quickly weaning off my Prednisone, and today I started the first of five days of 10mg of Prednisone, and after these five days are up, I'm free of it and back on a similar medicine regime as before the obstruction. That's frightening, because it didn't work before, in a way, but I am also in a better place, I think. My prayer is that the less-strong steroids I'm going back on (Entocort) will continue the work of the major steroid (Prednisone) in my body. And I have some faith that it will.
Things feel much more normal, except for all the drinking of Boost. My body is feeling more familiar to me, which is such a relief. And my husband and I were talking about it, and we both feel like I know my body better now and am treating it differently than I ever have, in good ways. I feel much more attuned to my body, not just in the gut but also with recognizing stress and emotional fluctuations (which are much reduced due to the lessening Prednisone influence). I feel more gentle with my body, more forgiving, though that co-exists with feelings of frustration and hatred toward my broken body. I think that I'll try and treat my body with great care and gentleness. Hatred and frustration can only create badness within me.
These words from Psalm 139 (which was read at our wedding) come to mind:
"I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be."
Who am I to say my body is no good? God created it, and He is amazing. I have to trust that when he ordained my days, looking at my body and knowing what lay ahead, He didn't just say, "Oh well, good luck!"
Wednesday, May 24, 2006
Stress
The milk went well! Yay! I can have pudding!
And then the little spaghetti meal went well last night, too, after some anxiety. I'm starting to do something new when I feel stressed: I can actually feel my stomach muscles tightening with anxiety and so I physically relax those muscles while I eat. Sound silly? Well, I think it's working.
I mean, I feel like there must be a way to deal with stress in a healthy way. Or maybe it's healthier to just not get stressed at all. Is that possible? And what do you do if you get stressed? Do you just suck it up and say "I will not be stressed, it is too hard for my body"? I feel like that is called repression, and I think repressing my feelings is part of what aggravates my Crohn's symptoms.
I'm on the hunt to find a healthy way to deal with stress. It seems unavoidable; there must be a way to deal with it responsibly. At least, this is what my husband and I would like to believe.
And then the little spaghetti meal went well last night, too, after some anxiety. I'm starting to do something new when I feel stressed: I can actually feel my stomach muscles tightening with anxiety and so I physically relax those muscles while I eat. Sound silly? Well, I think it's working.
I mean, I feel like there must be a way to deal with stress in a healthy way. Or maybe it's healthier to just not get stressed at all. Is that possible? And what do you do if you get stressed? Do you just suck it up and say "I will not be stressed, it is too hard for my body"? I feel like that is called repression, and I think repressing my feelings is part of what aggravates my Crohn's symptoms.
I'm on the hunt to find a healthy way to deal with stress. It seems unavoidable; there must be a way to deal with it responsibly. At least, this is what my husband and I would like to believe.
Tuesday, May 23, 2006
A little note about milk
I just bought some Lactaid milk. I am drinking a little test glass, because I'm worried about how my body will take it. I feel like a baby, not in that I'm weepy or something, but in that I am introducing new foods to this tender little digestive system, wondering what it will be able to handle.
So, I'm praying that I am not allergic to milk or unable to handle any type of dairy (even that without lactose), because that is true for some Crohn's patients (which I learned through one of my many internet searches).
Please pray with me. If I can have Lactaid milk, then I can have pudding and rice cereal and then numerous other things when I graduate to solid foods. Please also pray that I don't freak out waiting to see if my intestines can handle this. I need to stay relaxed.
So, I'm praying that I am not allergic to milk or unable to handle any type of dairy (even that without lactose), because that is true for some Crohn's patients (which I learned through one of my many internet searches).
Please pray with me. If I can have Lactaid milk, then I can have pudding and rice cereal and then numerous other things when I graduate to solid foods. Please also pray that I don't freak out waiting to see if my intestines can handle this. I need to stay relaxed.
I'm afraid of noodles.
My chicken noodle soup last night--the kind with the big noodles--has been approved by my body, or so it stands as of right now.
Praise the Lord!
I was very afraid that these noodles wouldn't go through well. I'm supposed to be having one little meal a day for a week and if that goes well, I graduate to two little meals a day for a week, etc. I started with the cheap chicken noodle soup for my first little meal, the kind of soup with short, super-thin noodles. And my body did well with that for two days. Then, last night, I decided (with much consternation) to try the chicken noodle soup with bigger noodles and little bits of chicken in it. It felt like the moment of truth: if I have inflammation that has solidified into scar tissue, the only things that will get through are Boost and other liquids and very small foods. But if I have inflammation that is going down because of the drugs, then I should be able to eat more and larger foods. But the only way to find out is to try larger foods and see if I'm in pain. I could think of no other way.
So, we stayed calm, talked about it alot, stopped talking about it, and watched how it went. It went great! No pain, no cramps at all. No nothing (except for normal "end products"). It looks like I'm doing well!
Now we have to figure out tonight's meal...
Praise the Lord!
I was very afraid that these noodles wouldn't go through well. I'm supposed to be having one little meal a day for a week and if that goes well, I graduate to two little meals a day for a week, etc. I started with the cheap chicken noodle soup for my first little meal, the kind of soup with short, super-thin noodles. And my body did well with that for two days. Then, last night, I decided (with much consternation) to try the chicken noodle soup with bigger noodles and little bits of chicken in it. It felt like the moment of truth: if I have inflammation that has solidified into scar tissue, the only things that will get through are Boost and other liquids and very small foods. But if I have inflammation that is going down because of the drugs, then I should be able to eat more and larger foods. But the only way to find out is to try larger foods and see if I'm in pain. I could think of no other way.
So, we stayed calm, talked about it alot, stopped talking about it, and watched how it went. It went great! No pain, no cramps at all. No nothing (except for normal "end products"). It looks like I'm doing well!
Now we have to figure out tonight's meal...
Monday, May 22, 2006
Thin again
Well, I'm skinny again. As the Prednisone dose is decreasing, and as I'm not eating anything but broth, jello, juice, water and Boost, I am losing weight. Before the obstruction, I had gained weight for the first time in years, but now I'm back to that lower weight. I wish losing weight could be a positive thing for me, but it usually signals that my Crohn's is active, not allowing me to absorb the nutrients (as well as the fats) that I'm eating. Losing weight is usually a bad thing. In this case, I'm hoping it's just because I'm having Boost and thus on a bit of a diet.
My husband and I talked and I'm going to have at least 3 Boosts a day, maybe 4, plus anything else on the liquid diet list that I can stand that has fat and calories (pudding made with Lactaid, 2% Lactaid milk, etc.). Each Boost has only 350 calories.
I'm trying not to worry about it, but I naturally do. I pray against despair, which I'm constanting battling (I'm so good at instantly going to the Worst Case Scenario for everything that happens to me). But I have peace. I think there are good reasons for this weight loss. And as I'm successfully adding new foods and my inflammation is going down, I think I'll gain weight.
Pray for pounds.
My husband and I talked and I'm going to have at least 3 Boosts a day, maybe 4, plus anything else on the liquid diet list that I can stand that has fat and calories (pudding made with Lactaid, 2% Lactaid milk, etc.). Each Boost has only 350 calories.
I'm trying not to worry about it, but I naturally do. I pray against despair, which I'm constanting battling (I'm so good at instantly going to the Worst Case Scenario for everything that happens to me). But I have peace. I think there are good reasons for this weight loss. And as I'm successfully adding new foods and my inflammation is going down, I think I'll gain weight.
Pray for pounds.
Resting
Learning to rest is hard. Resting my intestines is extremely hard. It's one thing to stay off of a sprained ankle, because when you put weight on it, it hurts immediately. When I eat a piece of pizza, I enjoy the experience of eating it. It's a few hours later that I will experience the crushing pain of my body being unable to digest it.
But I am proud of myself for resisting even a bite of pizza last night while we helped our friends move. I drank my Boost and smiled and enjoyed the smell of the pizza and the excellent way my digestive system was working--no cramps, no gas, no nothing. I am learning the rewards of being responsible.
"For you, O God, have proved us; you have tried us just as silver is tried.
You brought us into the snare; you laid heavy burdens upon our backs.
You let enemies ride over our heads; we went through fire and water;
but you brought us out into a place of refreshment."
This was from our reading on Sunday morning, and it struck a cord. I am rejoicing when I am in the place of refreshment.
But I am proud of myself for resisting even a bite of pizza last night while we helped our friends move. I drank my Boost and smiled and enjoyed the smell of the pizza and the excellent way my digestive system was working--no cramps, no gas, no nothing. I am learning the rewards of being responsible.
"For you, O God, have proved us; you have tried us just as silver is tried.
You brought us into the snare; you laid heavy burdens upon our backs.
You let enemies ride over our heads; we went through fire and water;
but you brought us out into a place of refreshment."
This was from our reading on Sunday morning, and it struck a cord. I am rejoicing when I am in the place of refreshment.
Saturday, May 20, 2006
Saturday
Today we mourned the loss of sharing meals. We cried, my husband and I, mourning the absense of choosing what to eat for supper together, of sharing our favorite foods with each other, of making special food for each other. How can you anticipate such a loss? It feels like an unbearable loss.
And at the same time, we know to be thankful that I am home, that we are together, running our errands together, shopping at Target, meeting friends for a movie, worshipping together at church. And we know to be thankful to sit down at the table together, me with my Boost shake, water and chicken broth, he with his solid meal. We can look at each other across the table, share fellowship, even with different food. And we are learning to not just know to be thankful but to actually be thankful.
I learned something interesting today when I tried to get to the bottom of what is happening in my intestines. My book (Eating Right for a Bad Gut) said that when the Crohn's-affected intestines have gone through a flare, the intestines are inflammed, like an ankle, except the inflammation fills the tube of the intestines--expanding in instead of out. And like a sprained ankle, what the intestines need is rest, and to have small steps taken back to getting on your feet. The thing both conditions need most is REST, and this means as little digestion as possible for a time (AKA Boost).
This was very helpful to understand.
Another interesting insight is from a new book from my dad--The Maker's Diet. I just paged through it initially, and while I feel it's not necessary right-on as a whole, I found this bit of truth:
"Don't eat when you're angry, sad, scared or anxious. These emotions all shut down digestion. When you are emotionally out of balance, it is better not to eat at all."
Very interesting. And I think it can be true for me.
Physically, I feel great today. I always do when I stick to a liquid diet. I feel lean and strong and clear-headed, like I imagine a monk to be. My body is free from distractions, free from digestion, fasting from digestion. Thank you, Jesus.
And at the same time, we know to be thankful that I am home, that we are together, running our errands together, shopping at Target, meeting friends for a movie, worshipping together at church. And we know to be thankful to sit down at the table together, me with my Boost shake, water and chicken broth, he with his solid meal. We can look at each other across the table, share fellowship, even with different food. And we are learning to not just know to be thankful but to actually be thankful.
I learned something interesting today when I tried to get to the bottom of what is happening in my intestines. My book (Eating Right for a Bad Gut) said that when the Crohn's-affected intestines have gone through a flare, the intestines are inflammed, like an ankle, except the inflammation fills the tube of the intestines--expanding in instead of out. And like a sprained ankle, what the intestines need is rest, and to have small steps taken back to getting on your feet. The thing both conditions need most is REST, and this means as little digestion as possible for a time (AKA Boost).
This was very helpful to understand.
Another interesting insight is from a new book from my dad--The Maker's Diet. I just paged through it initially, and while I feel it's not necessary right-on as a whole, I found this bit of truth:
"Don't eat when you're angry, sad, scared or anxious. These emotions all shut down digestion. When you are emotionally out of balance, it is better not to eat at all."
Very interesting. And I think it can be true for me.
Physically, I feel great today. I always do when I stick to a liquid diet. I feel lean and strong and clear-headed, like I imagine a monk to be. My body is free from distractions, free from digestion, fasting from digestion. Thank you, Jesus.
Friday, May 19, 2006
Not the most amazing gameplan
I had an appointment with my GI doctor this morning.
Nothing too exciting. He's upping my dose of the drug I've been taking since my first hospital experience (Immuran) from 100mg to 150mg/daily, and wants me to continue taking the Prednisone as the hospital doctor established (40mg/day for 5 days, 30mg/day for 5 days, and so on).
He said that he's discouraged by my flare on Wednesday night, but said that the Prednisone often takes some time to really get established in a person's body. So, maybe it's just taking me awhile to recover. I need to take it REALLY slowly. He said to introduce one solid meal a day (a small one), do that for a week, then move up to another meal. And I need to stop comparing this time to the last time in the hospital.
I see him in 2 weeks to see how it's going.
He said that we're running out of options and surgery may be necessary. We just need to take time and see what works. He said that if I do have to have surgery,
they would probably take out the biggest Crohn's-affected, strictured area, which may be the trouble spot (there are several infected areas that they found in my intestines). But we'll wait and see about that. I was able to voice my concerns and questions to this sometimes-difficult doctor, and that makes me glad.
I feel let down, sort of. I guess I wish he had met with his colleagues and come up with some brilliant plan for my future health. Hey, maybe he did meet with them, but it feels like there aren't a lot of options for me and I think that's just the nature of the disease. I need to get used to that (the wily nature of Crohn's) and accept small victories, small steps.
God is taking care of me. My body can handle this liquid diet (Boost, chicken broth, apple juice) really well, I am not losing much weight, I can handle the
Prednisone remarkably well (a real surprise), I have energy, and I am learning to take care of my stress. All blessings! We are learning to give thanks.
But I am so hungry for some real food.
Nothing too exciting. He's upping my dose of the drug I've been taking since my first hospital experience (Immuran) from 100mg to 150mg/daily, and wants me to continue taking the Prednisone as the hospital doctor established (40mg/day for 5 days, 30mg/day for 5 days, and so on).
He said that he's discouraged by my flare on Wednesday night, but said that the Prednisone often takes some time to really get established in a person's body. So, maybe it's just taking me awhile to recover. I need to take it REALLY slowly. He said to introduce one solid meal a day (a small one), do that for a week, then move up to another meal. And I need to stop comparing this time to the last time in the hospital.
I see him in 2 weeks to see how it's going.
He said that we're running out of options and surgery may be necessary. We just need to take time and see what works. He said that if I do have to have surgery,
they would probably take out the biggest Crohn's-affected, strictured area, which may be the trouble spot (there are several infected areas that they found in my intestines). But we'll wait and see about that. I was able to voice my concerns and questions to this sometimes-difficult doctor, and that makes me glad.
I feel let down, sort of. I guess I wish he had met with his colleagues and come up with some brilliant plan for my future health. Hey, maybe he did meet with them, but it feels like there aren't a lot of options for me and I think that's just the nature of the disease. I need to get used to that (the wily nature of Crohn's) and accept small victories, small steps.
God is taking care of me. My body can handle this liquid diet (Boost, chicken broth, apple juice) really well, I am not losing much weight, I can handle the
Prednisone remarkably well (a real surprise), I have energy, and I am learning to take care of my stress. All blessings! We are learning to give thanks.
But I am so hungry for some real food.
Thursday, May 18, 2006
Habits
What am I doing to stay healthy, to try and help my digestion?
-Taking slow walks after meals
-Eating slowly
-Drinking water while I eat
-Crying when I need to
-Talking when I need to
-Making lists--of what I'm eating, of what makes me happy, of how I'm staying healthy...
-Learning to relax with stretching and breathing exercises
-Trying to address and let go of stress and anxiety early on in its lifetime.
I don't know if any of it does any good, but it feels good to do. Feels good to try something.
-Taking slow walks after meals
-Eating slowly
-Drinking water while I eat
-Crying when I need to
-Talking when I need to
-Making lists--of what I'm eating, of what makes me happy, of how I'm staying healthy...
-Learning to relax with stretching and breathing exercises
-Trying to address and let go of stress and anxiety early on in its lifetime.
I don't know if any of it does any good, but it feels good to do. Feels good to try something.
Last night
Last night was a rough night. Another stricture, though not bad enough to go to the hospital. It was so frustrating. I felt like I'd been doing really well, and then BOOM. Back in pain. We managed to get me to relax and that really helped. Eventually the pain passed and I fell asleep early, we both did, exhausted, unsure of what it meant. I feel great this morning, everything moving as it should. I left a VM for my doctor telling him what happened, telling him I'm going back on liquid diet until I see him tomorrow morning. I need a gameplan.
Praise the Lord it passed! But where was He when the pain started? What does He mean by allowing it to exist at all? How can we see Him in these everyday pains? It feels so much easier to see Him in the big, miraculous signs. We pray that He will show Himself--and His plan--to us, to help us to see Him in the everyday ways He is showing Himself to us.
Praise the Lord it passed! But where was He when the pain started? What does He mean by allowing it to exist at all? How can we see Him in these everyday pains? It feels so much easier to see Him in the big, miraculous signs. We pray that He will show Himself--and His plan--to us, to help us to see Him in the everyday ways He is showing Himself to us.
I have a blog
I wanted a place to post my thoughts and updates about my Crohn's. A place where my loved ones can get updates on my health and the disease I'm dealing with. Nothing too personal, but nothing to pass around to too many people. Just a visually-interesting place (unlike general emails) to post my thoughts for people who know me and don't mind hearing my many thoughts about how I'm living in the reality of having Crohn's Disease. I don't care to hear stories from people about their terrible experiences with Crohn's, just want to share things that pertain to my own journey. Selfish? Yes. Escapist? Perhaps. But this is what I need right now, so I'm going to do it.