Yes, it's Thursday and that's the best title I can come up with.
I'm doing well, feeling pretty good, still on my regular dose of steroids. We are going to my in-laws a week from today, and I'm considering starting the decrease when I get home from their place, because if something happens, I want to be at home to go to the hospital, not go to the hospital in a faraway place, especially if surgery could be involved. We'll see. I know that seems like I keep putting it off, but seriously, I think it's a good reason to.
I have been feeling kinda crampy lately, not 100%, and my husband reminded me a few days ago of the quote from "The Maker's Diet," about not eating when I'm angry, anxious, etc. Making my eating environment a calm place. While I do continue to relax my stomach muscles while eating, I've definitely lost focus with keeping a safe, calm environment. And this, frankly, is good for everyone's dining environment, not just mine.
We also are walking again after meals, which we'd not been doing for a little while. So, I'm feeling much better overall.
Thank you for your love and concern. I'll keep you updated as necessary.
Thursday, June 29, 2006
Friday, June 23, 2006
Food? Who cares.
Well, I'm no longer dreaming about food. It doesn't occupy my every-other thought. I am often not hungry when mealtime comes, or nothing sounds good to me. Ah, it was fun while it lasted.
And I'm also not feeling beautifully clean and cramp-free anymore, either. This week I've been feeling gassy (inside, not out) for about half of every day, and it usually clears up by the morning but is still discouraging. I imagine the inside of my intestines, in the troubled area, getting smaller and smaller again, in small increments, waiting to close up on me again. This is the fear talking mostly, I'm sure, but I also want to be good about learning the warning signs for a flare. I can recognize the signs for an obstruction now, but not a flare. For instance, some people's joints ache before they flare (I think it's related to inflammation), but I didn't experience that until I read that little fact and now my joints hurt intermittently, with no flares following (I'm very suggestable).
How do I respond to this gas and other things (like diarrhea) with proper action and not fear? How do I know if it's time to have a Boost and let things calm down? How do I not have a Boost just out of fear? I aim for a better motivation: I don't want to only act out of fear. But I also have been burned in the past. Lord, have mercy.
I am not doing as good a job of being calm, being stressfree. I am drinking water, and staying on my strict diet.
In a week or two, I start reducing my steroids from 3 tablets to 2 everyday. It sounds like if things flare up, I'll have surgery (instead of going back onto steroids). And right now, I don't feel like I'll do well off steroids. Please pray.
And I'm also not feeling beautifully clean and cramp-free anymore, either. This week I've been feeling gassy (inside, not out) for about half of every day, and it usually clears up by the morning but is still discouraging. I imagine the inside of my intestines, in the troubled area, getting smaller and smaller again, in small increments, waiting to close up on me again. This is the fear talking mostly, I'm sure, but I also want to be good about learning the warning signs for a flare. I can recognize the signs for an obstruction now, but not a flare. For instance, some people's joints ache before they flare (I think it's related to inflammation), but I didn't experience that until I read that little fact and now my joints hurt intermittently, with no flares following (I'm very suggestable).
How do I respond to this gas and other things (like diarrhea) with proper action and not fear? How do I know if it's time to have a Boost and let things calm down? How do I not have a Boost just out of fear? I aim for a better motivation: I don't want to only act out of fear. But I also have been burned in the past. Lord, have mercy.
I am not doing as good a job of being calm, being stressfree. I am drinking water, and staying on my strict diet.
In a week or two, I start reducing my steroids from 3 tablets to 2 everyday. It sounds like if things flare up, I'll have surgery (instead of going back onto steroids). And right now, I don't feel like I'll do well off steroids. Please pray.
Wednesday, June 14, 2006
Not much new
It's hard to post new entries when there isn't much new happening with my Crohn's. I am happy about that! It's pretty safe to assume (unless you get a call from my husband at the hospital) that if I haven't written in awhile, it's because I'm feeling good and don't have much new to say. ;)
I'm feeling great. I decided to have snacks because, darn it, I love snacks! I don't nibble all day, though, and that's a good thing. I used to do that occasionally, to stay awake, or to keep from becoming bored, but it's not a good thing for my body. Now I have a snack like I'd have an extra meal--all at once and in a predetermined amount. I also am finding that having a Boost in the middle of the afternoon does a LOT for my energy level (yes, all you pun-lovers, it does give me a boost).
My food diary is a challenge to keep up-to-date while I'm feeling good. I forget about it when I don't have to look it up and see if I can figure out why I was feeling crappy... But I want to see this dietician sometime, and I think having a well-maintained food diary will help him/her give me advice on how to eat.
I am staying on this strict low-fiber, low-residue diet, but I honestly don't know how long I should, or how long I need to. I'm sure my doctor would say to take it slow, see how things go... My trend is usually to be hyper-vigilant about things I'm afraid about until I get really sick of being vigilant, or forget why I was afraid, and then I let things go to the wind. So, I'm trying to remember that I'm still in recovery but when I see a piece of pepperoni pizza, I want to just chow down. I haven't yet, but I've gotten close. Baby steps, baby steps. I'm going to stay on it until the end of the month, and then maybe eat like I did before the obstruction (except without the bad food choices, the things I shouldn't have been eating anyway, like steak).
I got a Nalgene-like water bottle a couple of days ago, so I'm hoping that it will encourage me to keep drinking water. It holds 20 oz, which sets a good goal: drink one bottle during the day at work. Add that to a glass with breakfast and a glass with supper, and I'm doing well. And if I'm tempted to snack, bring on more water!
More goals: try out a yoga class, see if my insurance will cover the dietician appointment, get enough sleep.
I hope you're all doing well!
I'm feeling great. I decided to have snacks because, darn it, I love snacks! I don't nibble all day, though, and that's a good thing. I used to do that occasionally, to stay awake, or to keep from becoming bored, but it's not a good thing for my body. Now I have a snack like I'd have an extra meal--all at once and in a predetermined amount. I also am finding that having a Boost in the middle of the afternoon does a LOT for my energy level (yes, all you pun-lovers, it does give me a boost).
My food diary is a challenge to keep up-to-date while I'm feeling good. I forget about it when I don't have to look it up and see if I can figure out why I was feeling crappy... But I want to see this dietician sometime, and I think having a well-maintained food diary will help him/her give me advice on how to eat.
I am staying on this strict low-fiber, low-residue diet, but I honestly don't know how long I should, or how long I need to. I'm sure my doctor would say to take it slow, see how things go... My trend is usually to be hyper-vigilant about things I'm afraid about until I get really sick of being vigilant, or forget why I was afraid, and then I let things go to the wind. So, I'm trying to remember that I'm still in recovery but when I see a piece of pepperoni pizza, I want to just chow down. I haven't yet, but I've gotten close. Baby steps, baby steps. I'm going to stay on it until the end of the month, and then maybe eat like I did before the obstruction (except without the bad food choices, the things I shouldn't have been eating anyway, like steak).
I got a Nalgene-like water bottle a couple of days ago, so I'm hoping that it will encourage me to keep drinking water. It holds 20 oz, which sets a good goal: drink one bottle during the day at work. Add that to a glass with breakfast and a glass with supper, and I'm doing well. And if I'm tempted to snack, bring on more water!
More goals: try out a yoga class, see if my insurance will cover the dietician appointment, get enough sleep.
I hope you're all doing well!
Friday, June 09, 2006
Water
I'm feeling good these days. The three meals seem to be working. And I'm being really good about having only these three meals--no snacks in between. I want to continue to rest my gut.
Something I realized the other day: I am off caffeine! I haven't had it since the day I went into the hospital, over a month ago. And I'm doing fine without it! I think I picked an excellent way to detox, though: the first few days I was off caffeine, I was also on some really strong painkillers and I was being constantly hydrated by the IV in my arm. This helps a lot with the withdrawal symptoms. ;) So, why go back on? I can easily have tea without caffeine, and I'm avoiding carbonated beverages for the time being: who needs all that extra gas in their body? Certainly not me.
My newest method of taking care of myself, in addition to all I've learned, is to drink a lot of water. I know I've aimed to drink water in the past, but I'm really feeling the positive side-effects of drinking lots of water. I never knew how important water was for your colon, especially when you're not on a fibrous diet. And I just feel like it keeps me cleaned out, keeps the toxins, etc. moving through my body, like a helpful traffic light system, instead of letting things sit in there forever.
So, I'm drinking water. Lots of it. I have it with every meal. I'm trying to acquire the taste for it. And though I've been its fair-weather friend in the past, I'm vowing to commit this time, to stay in daily touch, to take it out for lunch, even to buy it birthday presents.
Something I realized the other day: I am off caffeine! I haven't had it since the day I went into the hospital, over a month ago. And I'm doing fine without it! I think I picked an excellent way to detox, though: the first few days I was off caffeine, I was also on some really strong painkillers and I was being constantly hydrated by the IV in my arm. This helps a lot with the withdrawal symptoms. ;) So, why go back on? I can easily have tea without caffeine, and I'm avoiding carbonated beverages for the time being: who needs all that extra gas in their body? Certainly not me.
My newest method of taking care of myself, in addition to all I've learned, is to drink a lot of water. I know I've aimed to drink water in the past, but I'm really feeling the positive side-effects of drinking lots of water. I never knew how important water was for your colon, especially when you're not on a fibrous diet. And I just feel like it keeps me cleaned out, keeps the toxins, etc. moving through my body, like a helpful traffic light system, instead of letting things sit in there forever.
So, I'm drinking water. Lots of it. I have it with every meal. I'm trying to acquire the taste for it. And though I've been its fair-weather friend in the past, I'm vowing to commit this time, to stay in daily touch, to take it out for lunch, even to buy it birthday presents.
Tuesday, June 06, 2006
Doc Appt
Well, I went to see my GI doc today for the second follow-up after the hospital/obstruction. It went well. He was pleased with my progress.
His next step is to take me from 9mg of Entocort (a steroid that releases in the small intestines where it's needed, instead of getting into the bloodstream needlessly) to 6mg in a month.
YIKES!
This freaks me out.
I told him that it makes me nervous, and he said that I've been on steroids for a year and a half and I need to get off them.
I asked him if people have flares when they go off steroids, and he said "sometimes," but it is NOT GOOD for me to be on them, not for a young lady such as myself. They are not good for the body.
I said I was still really nervous (testing his patience by now, I know, but I had to be honest and I had to hear more about what he was planning and thinking), and he said that if it is between a lifetime of steroids and surgery, surgery is the MUCH better option.
So, it sounds to me like I am going to go off the steroids and if I have another obstruction, I'll have the surgery. If I handle the transition off Entocort well, then I'm successfully off steroids and haven't had to have surgery, only taking a maintenance drug. My husband is encouraged by this doc appointment, as he said it's a great thing that my doctor is looking after my longterm health, not just quick, temporary fixes. He's right.
Reasons why I might have another obstruction when they lower my dose of steroids and take me off:
--I had an obstruction the last time they starting weaning me off Entocort(August 2005).
--My body is SUPER sensitive to fluctuations in medicine and takes things hard.
--My body will take this even harder b/c it's become dependent on steroids to be well and because steroids are the only thing keeping me on this side of surgery.
Reasons why I might be just fine transitioning off of steroids:
--I am not recovering from PLANNING A MAJOR EVENT when I'll be going down to 6mg (in a month). Stress is a major trigger of Crohn's symptoms for me, and I believe that it played a HUGE role in my two obstructions.
--I went off the Prednisone just fine, no problemo, and apparently, that's not necessarily a given.
--I know how to take care of myself so much better than I did even a month ago. I could prepare for this transition emotionally (perhaps I could talk myself into looking forward to this and thus, anticipate it in a good way, stimulating dopamine and all those good things), physically (perhaps having liquid diet for a day or so to ease things, etc.), and spiritually (receive prayer at church, pray about it, etc.).
So, I'm going to focus on the second list.
Oh, and my doc hadn't heard about that new drug, and sounded extremely skeptical, so I'm going to mail him some information.
PS. The problem I mentioned yesterday has now, at long last and with much gnashing of teeth, resolved itself, with some help from drugs. Praise the Lord!
His next step is to take me from 9mg of Entocort (a steroid that releases in the small intestines where it's needed, instead of getting into the bloodstream needlessly) to 6mg in a month.
YIKES!
This freaks me out.
I told him that it makes me nervous, and he said that I've been on steroids for a year and a half and I need to get off them.
I asked him if people have flares when they go off steroids, and he said "sometimes," but it is NOT GOOD for me to be on them, not for a young lady such as myself. They are not good for the body.
I said I was still really nervous (testing his patience by now, I know, but I had to be honest and I had to hear more about what he was planning and thinking), and he said that if it is between a lifetime of steroids and surgery, surgery is the MUCH better option.
So, it sounds to me like I am going to go off the steroids and if I have another obstruction, I'll have the surgery. If I handle the transition off Entocort well, then I'm successfully off steroids and haven't had to have surgery, only taking a maintenance drug. My husband is encouraged by this doc appointment, as he said it's a great thing that my doctor is looking after my longterm health, not just quick, temporary fixes. He's right.
Reasons why I might have another obstruction when they lower my dose of steroids and take me off:
--I had an obstruction the last time they starting weaning me off Entocort(August 2005).
--My body is SUPER sensitive to fluctuations in medicine and takes things hard.
--My body will take this even harder b/c it's become dependent on steroids to be well and because steroids are the only thing keeping me on this side of surgery.
Reasons why I might be just fine transitioning off of steroids:
--I am not recovering from PLANNING A MAJOR EVENT when I'll be going down to 6mg (in a month). Stress is a major trigger of Crohn's symptoms for me, and I believe that it played a HUGE role in my two obstructions.
--I went off the Prednisone just fine, no problemo, and apparently, that's not necessarily a given.
--I know how to take care of myself so much better than I did even a month ago. I could prepare for this transition emotionally (perhaps I could talk myself into looking forward to this and thus, anticipate it in a good way, stimulating dopamine and all those good things), physically (perhaps having liquid diet for a day or so to ease things, etc.), and spiritually (receive prayer at church, pray about it, etc.).
So, I'm going to focus on the second list.
Oh, and my doc hadn't heard about that new drug, and sounded extremely skeptical, so I'm going to mail him some information.
PS. The problem I mentioned yesterday has now, at long last and with much gnashing of teeth, resolved itself, with some help from drugs. Praise the Lord!
Monday, June 05, 2006
THREE MEALS!!!
Yay! I'm up to three meals--started yesterday--and am doing great. Well, I haven't been eating ANY fiber at all, so I'm having some issues of that genre, but my doctor hooked me up with a cure for that ailment, and then I'll be 100% great (and I've decided to start eating more soluble fiber, so hopefully I will stop having this frustrating problem).
I feel super. No cramps, no nothing of the Crohn's sort. Praise the Lord! I guess I just needed to ease into food more slowly, let my gut rest. My personality is very cautious and not excited about risks; I guess I shouldn't be surprised that my body is slow and cautious, too.
I see my doctor tomorrow--pray about it if you think of it. It's a big day--my father-in-law is having his surgery, too, so pray for that. I'm hoping my doc appointment won't result in a decision about surgery. I have a fear that the doc will say something like, "Okay, now you're stable, and I've been reviewing your files and I think you need surgery so these osbstructions will stop happening." But there is little basis in reality for that fear (as is so often the case). Our prayer is that I can be healed of Crohn's without surgery. I'm going to bring in the article about the new drug.
My husband and I had tomato soup (good soluble fiber) and grilled cheese last night, together. It is such a gift, everytime we are able to eat food together--solid food, the same food as the other person. I am so much more aware now of my blessings, of the good things in my life.
I feel super. No cramps, no nothing of the Crohn's sort. Praise the Lord! I guess I just needed to ease into food more slowly, let my gut rest. My personality is very cautious and not excited about risks; I guess I shouldn't be surprised that my body is slow and cautious, too.
I see my doctor tomorrow--pray about it if you think of it. It's a big day--my father-in-law is having his surgery, too, so pray for that. I'm hoping my doc appointment won't result in a decision about surgery. I have a fear that the doc will say something like, "Okay, now you're stable, and I've been reviewing your files and I think you need surgery so these osbstructions will stop happening." But there is little basis in reality for that fear (as is so often the case). Our prayer is that I can be healed of Crohn's without surgery. I'm going to bring in the article about the new drug.
My husband and I had tomato soup (good soluble fiber) and grilled cheese last night, together. It is such a gift, everytime we are able to eat food together--solid food, the same food as the other person. I am so much more aware now of my blessings, of the good things in my life.
Friday, June 02, 2006
Nothing new
I guess when I'm feeling well, I think about my Crohn's less. I ate something Wednesday night that caused my gut to work harder than it has been lately, but it all went through okay in the end. And there wasn't any pain or discomfort, just some unfamiliar gurgling and processing sensations. I picture my stomach as much smaller than it was previous to the obstruction, and I picture it having to expand and that feeling a little strange to me. So, it's all good.
I feel just fine, but I still dream of food. My coworkers brought in a whole bunch of pastries this morning, and I put some in baggies--one for my husband and one for me later--but I'm still dreaming of eating them. Another pastry they brought in has nuts so I wouldn't be able to have that anyway. Oh well. It's hard, not being able to eat when and what I like. But as I've said before, it's worth more to me to be able to not be in pain, not be in the hospital, and not be having surgery.
When I went to my PCP last week for a follow-up after the hospital stay (in addition to seeing my GI), I asked him to give me a referral to a dietician if he could. He did, and I recieved the referral in the mail yesterday. My husband and I are thinking up some good questions to ask him/her. I am looking forward to FINALLY talking to someone about my nutrition questions (i.e., am I getting the nutrition I need with the way I eat? What does the dietician think of all these strange diets? What does he/she think about probiotics or other supplements? What role does water play in my life with Crohn's? etc.) but I am NOT looking forward to another doctor's appointment. I'm sick of doc appointments. I want to just live my life.
I guess part of why I'm writing is to say that sometimes, no news is good news. Such has been the case this week.
I feel just fine, but I still dream of food. My coworkers brought in a whole bunch of pastries this morning, and I put some in baggies--one for my husband and one for me later--but I'm still dreaming of eating them. Another pastry they brought in has nuts so I wouldn't be able to have that anyway. Oh well. It's hard, not being able to eat when and what I like. But as I've said before, it's worth more to me to be able to not be in pain, not be in the hospital, and not be having surgery.
When I went to my PCP last week for a follow-up after the hospital stay (in addition to seeing my GI), I asked him to give me a referral to a dietician if he could. He did, and I recieved the referral in the mail yesterday. My husband and I are thinking up some good questions to ask him/her. I am looking forward to FINALLY talking to someone about my nutrition questions (i.e., am I getting the nutrition I need with the way I eat? What does the dietician think of all these strange diets? What does he/she think about probiotics or other supplements? What role does water play in my life with Crohn's? etc.) but I am NOT looking forward to another doctor's appointment. I'm sick of doc appointments. I want to just live my life.
I guess part of why I'm writing is to say that sometimes, no news is good news. Such has been the case this week.