Just a little update.
I'm feeling okay. I noticed that I've felt kind of funky (meaning gassy, etc.) every evening (just before supper until bedtime) for the last week or so. I don't know what that means. Perhaps my body is getting used to not being on as many steroids. Perhaps I'm eating more fiber (which I am half-heartedly trying to do, per my dietician's advice) and that's harder for my body to figure out. Perhaps I'm not doing good stress management.
I always feel fine in the morning, but it makes me wonder. I want to keep an eye on trends, not just assessing myself in a daily manner. If I look back to the time leading up to the last hospital stay, I was doing things on a daily basis that were hard on my body--being stressed, eating beef, cheating on foods. Daily. And because I felt okay on average--not great, but okay--everyday, I figured I was doing fine. It was just in looking back on the time as a whole that I noticed, hey, I had two flares in two weeks. Hey, I was feeling 75-80% everyday for two weeks. Hey, I had just finished an EXTREMELY stressful Holy Week and hadn't taken time to get extra rest or be super easy on foods for as long as I could have. And the kicker--perhaps my Crohn's was acting up on its own accord, regardless of what I was doing.
So, I'm trying to figure out how to keep a small picture and big picture outlook, without overreacting (this is the rub). Breathing...
Wednesday, August 30, 2006
Thursday, August 17, 2006
Mystery
Some mysterious gas last night. Ah, gas stories. Aren't you glad you get to hear them?
Anyway, I don't know why I was having it, but it was sort of sharp, so maybe it wasn't gas. I don't know, but the only reason I can think that I was having it is because we spent the night running around to three grocery stores to get all our groceries, among other errands, and perhaps I wasn't being stressfree in a helpful way to my body. It was that positive stress, the energy of getting things done, but I think I should have been calmer about getting things done (advice I get often from my husband).
Having Crohn's makes me a detective, I am finding out. I had a doc in the hospital this last time that I liked at first because he listened to my medical history and then asked all sorts of random questions that, when we pressed him, he explained had helped him to understand my condition. (We didn't like him much after awhile, because it felt like he was keeping me at the hospital for longer than I needed to be there. Turns out, it was probably okay that I stayed, seeing as I had a flare a few days after I got out and it took me a month to get onto full solid meals. Things were more serious that we'd thought.)
So, I'm doing great, despite the mystery gas, and amazed that my body is handling the lessening of steroids so well. Praise God!
Anyway, I don't know why I was having it, but it was sort of sharp, so maybe it wasn't gas. I don't know, but the only reason I can think that I was having it is because we spent the night running around to three grocery stores to get all our groceries, among other errands, and perhaps I wasn't being stressfree in a helpful way to my body. It was that positive stress, the energy of getting things done, but I think I should have been calmer about getting things done (advice I get often from my husband).
Having Crohn's makes me a detective, I am finding out. I had a doc in the hospital this last time that I liked at first because he listened to my medical history and then asked all sorts of random questions that, when we pressed him, he explained had helped him to understand my condition. (We didn't like him much after awhile, because it felt like he was keeping me at the hospital for longer than I needed to be there. Turns out, it was probably okay that I stayed, seeing as I had a flare a few days after I got out and it took me a month to get onto full solid meals. Things were more serious that we'd thought.)
So, I'm doing great, despite the mystery gas, and amazed that my body is handling the lessening of steroids so well. Praise God!
Monday, August 14, 2006
Caramels!
I figured out the reason for the mysterious and frustrating gassy night from last week:
Brach's caramels!
I had two of them in the middle of the day, and I didn't take a Lactaid pill with them. You never think of candy having a significant amount of Lactose in it, but these caramels have milk listed as the third ingredient. And their full name should have been a clue: Brach's Milk Maid Caramels.
Oops.
Well, as my husband observed, now we know that the worst thing that happens when I have some lactose is an evening of gas. Meaning, I didn't have a flare.
So, I am much encouraged.
Brach's caramels!
I had two of them in the middle of the day, and I didn't take a Lactaid pill with them. You never think of candy having a significant amount of Lactose in it, but these caramels have milk listed as the third ingredient. And their full name should have been a clue: Brach's Milk Maid Caramels.
Oops.
Well, as my husband observed, now we know that the worst thing that happens when I have some lactose is an evening of gas. Meaning, I didn't have a flare.
So, I am much encouraged.
Thursday, August 10, 2006
Frustrated
Last night I left a little early from work because of gas in my abdomen that wasn't moving. I needed to lay flat on my back (the best way to give things room to move, I've found).
So frustrating.
I didn't eat supper, tried to relax, tried to get things to move. They didn't resolve themselves fully until this morning, though I had no trouble sleeping. We had people over last night for a movie, and I couldn't join them with banana bread and tea. At least, I didn't feel like I should eat, because what if it is a blockage, or a less-serious but still serious stricture? If gas can't even get through, then how can a whole meal? Even a wonderful meal that my husband created?
So. Frustrating.
Today I'm taking it a little easy. Having a Boost or two during the day with solid breakfast and (hopefully) supper. Back to keeping my food diary reliously. Trying to process my frustration and big emotions, not hold them in (as usual, this is good for so many reasons). Trying not to feel depressed, like this is a setback. I mean, there's no reason for last night's episode, except that I had a lot of sugar during the afternoon, much more than usual. But I never noticed sugar being a problem until the dietician mentioned it. Now I notice it, or think I do. Grrr...
Please pray. My steroids go down to one/day tomorrow, and it worries me a little.
I'm trying to stay open to healing, in whatever form that takes.
O God, the source of all health: So fill my heart with faith in your love, that with calm expectancy I may make room for your power to possess me, and gracefully accept your healing; through Jesus Christ our Lord. Amen.
(From the BCP)
So frustrating.
I didn't eat supper, tried to relax, tried to get things to move. They didn't resolve themselves fully until this morning, though I had no trouble sleeping. We had people over last night for a movie, and I couldn't join them with banana bread and tea. At least, I didn't feel like I should eat, because what if it is a blockage, or a less-serious but still serious stricture? If gas can't even get through, then how can a whole meal? Even a wonderful meal that my husband created?
So. Frustrating.
Today I'm taking it a little easy. Having a Boost or two during the day with solid breakfast and (hopefully) supper. Back to keeping my food diary reliously. Trying to process my frustration and big emotions, not hold them in (as usual, this is good for so many reasons). Trying not to feel depressed, like this is a setback. I mean, there's no reason for last night's episode, except that I had a lot of sugar during the afternoon, much more than usual. But I never noticed sugar being a problem until the dietician mentioned it. Now I notice it, or think I do. Grrr...
Please pray. My steroids go down to one/day tomorrow, and it worries me a little.
I'm trying to stay open to healing, in whatever form that takes.
O God, the source of all health: So fill my heart with faith in your love, that with calm expectancy I may make room for your power to possess me, and gracefully accept your healing; through Jesus Christ our Lord. Amen.
(From the BCP)
Tuesday, August 08, 2006
Went well
Just an update about yesterday's doctor appointment:
It went well!
Doc was very glad I was doing well off my steroids. My husband was very helpful in helping me remember to bring up my questions and report my symptoms (when I'm at the doctor, it's easy to forget everything that's going on, and remember to say it all at one time).
Doc is having me continue on with going off the steroids. He said to keep decreasing until I'm done (which right now means I'll be off them as of September 11), and ideally, I'll be fine on Imuran, which is a maintenance drug. Sounds fine to me, as long as I don't want to get pregnant (it's not the safest drug for pregnancies: there's potential for birth defects, though when my husband I looked up the details, it said that among the test subjects, there was no higher chance of birth defects than the regular population).
Keep praying! I'm doing well!
It went well!
Doc was very glad I was doing well off my steroids. My husband was very helpful in helping me remember to bring up my questions and report my symptoms (when I'm at the doctor, it's easy to forget everything that's going on, and remember to say it all at one time).
Doc is having me continue on with going off the steroids. He said to keep decreasing until I'm done (which right now means I'll be off them as of September 11), and ideally, I'll be fine on Imuran, which is a maintenance drug. Sounds fine to me, as long as I don't want to get pregnant (it's not the safest drug for pregnancies: there's potential for birth defects, though when my husband I looked up the details, it said that among the test subjects, there was no higher chance of birth defects than the regular population).
Keep praying! I'm doing well!
Monday, August 07, 2006
This Afternoon
This afternoon I have an appointment with my GI. I had to schedule it after my last appointment, so I assume it's just to see how things are going, to see how it's going without my steroids (it's going great!). But I also wonder (as I often do) if the doc is also going to say, "Okay, now that you're stable, let's see about surgery." Because he doesn't want me to keep going in to the hospital at random times. As I've expounded upon in earlier posts, there may be a more permanent problem than inflammation that we'll have to deal with in a major way: scar tissue in the intestines. It doesn't go away with medication.
So, I woke up feeling nervous, but when my husband and I were praying this morning, I felt a lot of peace about the appointment. I felt, as I felt yesterday in church while praying for two friends of ours who are sick with brain cancer and colon cancer, that God has a plan for our lives. It may be to allow us to be sick for awhile. As my husband and I prayed this morning from the Book of Common Prayer: "We thank you also for those disappointments and failures that lead us to acknowledge our dependence on you alone." Hard to hear, but true. I really believe that. And there is freedom in trusting that God has a plan for me. It gives me breathing room, room to say, "I'm doing all I can. And I have to trust that God is working it into a larger plan for me. I'm not in charge of my larger plan."
Things I miss eating (and thus, things that help me to actually want surgery so I can possibly have them again):
-Carbonated beverages (can you believe I haven't had a soda in 3 months???)
-Beef products
-Strawberries
-Fresh peaches
-So much more...
Haven't had these in 6 years or so:
-Most vegetables
-Berries
-Yogurt
-My favorite cereals: this morning I was missing Cheerios. I also miss Grape Nuts, Grape Nut Flakes, Honey Bunches of Oats, Wheat Chex, Ohs, and I could go on.
-Popcorn
I'll let you all know what happens at the doc appt. My husband can come with me, so that'll be cool for him to see (for the first time) what my appointments are like, and also offer help if a big decision must be made.
So, I woke up feeling nervous, but when my husband and I were praying this morning, I felt a lot of peace about the appointment. I felt, as I felt yesterday in church while praying for two friends of ours who are sick with brain cancer and colon cancer, that God has a plan for our lives. It may be to allow us to be sick for awhile. As my husband and I prayed this morning from the Book of Common Prayer: "We thank you also for those disappointments and failures that lead us to acknowledge our dependence on you alone." Hard to hear, but true. I really believe that. And there is freedom in trusting that God has a plan for me. It gives me breathing room, room to say, "I'm doing all I can. And I have to trust that God is working it into a larger plan for me. I'm not in charge of my larger plan."
Things I miss eating (and thus, things that help me to actually want surgery so I can possibly have them again):
-Carbonated beverages (can you believe I haven't had a soda in 3 months???)
-Beef products
-Strawberries
-Fresh peaches
-So much more...
Haven't had these in 6 years or so:
-Most vegetables
-Berries
-Yogurt
-My favorite cereals: this morning I was missing Cheerios. I also miss Grape Nuts, Grape Nut Flakes, Honey Bunches of Oats, Wheat Chex, Ohs, and I could go on.
-Popcorn
I'll let you all know what happens at the doc appt. My husband can come with me, so that'll be cool for him to see (for the first time) what my appointments are like, and also offer help if a big decision must be made.