Appt. set

I'm going in Wednesday night at 6:30pm for my dental appointment. Should be fun! Six cavities need temporary fillings and the one I already got needs to be checked (in my opinion; because it's sunk quite deep, but it is only temporary, so we'll see).

So, just wanted you to know. I'm not sure if I'll indulge in drug relief, but I'm certainly not feeling a lot of anxiety about this appointment. I barely remember it. Perhaps partly because I'm so busy!

Love you all. Merry Christmas!

So lucky

You guys are so lucky, getting to hear only about my medical issues. I was reminded of this by a faithful blog reader, and I apologize. It just means that I am not doing a good job of staying in touch with you outside of this blog. ;)

So, here's another medical update:

My dentist stalker, as I am now going to call him, is meeting my husband for prayer (they're prayer partners, did I mention that?) and when they scheduled the prayer time, the dentist also asked if I could come in sometime "soon" to have my other six cavities sedated until next year when I can get real fillings. Because he's worried about the decay necessitating crowns next year and wants to save us money. I asked my husband to clarify "soon" and he said that our friend said "I have openings this week!" Hurumph. That's why he's my dentist stalker. He's always looking out for me and my teeth, and he won't leave my dental health alone! ;) I am very lucky to have such a stalker, I realize, and to have such a talented and reasonably-priced dentist is a gift from the Lord. So, I gave my husband some available times so that they could schedule at the prayer meeting today, and then I'll probably go in for my four shots (b/c there's at least one cavity on the upper right, upper left, lower left, and lower right sides of my mouth--all sides) sometime later this week, maybe even tomorrow. We'll see if I decide to go with the Valium. I'm feeling fine right now, just irritated that I can't wait for this fun work until after the holidays. ;)

As for my Crohn's, I haven't been feeling great, but I think it's okay. Life has been full of positive stress (Thanksgiving travel and family) and negative stress (LONG to-do list at home and large church art project due soon), and both affect my Crohn's the same way. We're working on going on more walks and I'm trying to be careful with what I eat (especially during the holidays). And I'm trying to express emotions healthily and on time.

Thank you for your prayers. I hope your Advent has started well.

I SURVIVED!

Yes, it's true, I survived. And yes, it wasn't as bad as I thought it would be. The valium helped a little to calm me, but truly, the shot itself wasn't nearly as bad as I'd anticipated (I hear a collective, "SEE!"). And I kept my eyes closed and prayed for the rest of the procedure, which went well.

So, praise the Lord! Thank you for praying for me and thinking of me throughout all this.

The dentist said that the tooth was all hollowed out inside, and even cracked, so it was VERY good that I went in when I did. He said I will definitely need a root canal, but that can wait for January. I just have to continue to be gentle with that tooth when chewing.

The main issue right now is that I can't feel a quarter of my mouth area (including half my tongue), and that's very odd. I hope it wears off soon. He said it usually takes half an hour to three hours; the shot he's given that's lastested the longest lasted eight hours. But that's VERY unusual. He gave me lots of warnings to be careful about my tongue, so I'm concentrating on keeping my mouth and jaw from clenching, which I tend to do when nervous. Oh well. I just overeact. ;)

He said I did a great job with the shot (even told my husband when I was in the restroom that he flinches more than I did).

Thank you again. I love you all. Happy Thanksgiving!

New appointment time

TUESDAY. NOON.

I'm feeling much calmer, though I'm still planning to take Valium (we're trying two this time, because one didn't do anything). I talked some more to the dentist about what he's going to do, and that helps me feel better (I usually feel better when I'm better informed). He's going to clean out the tooth and fill it with a "sedative filling," which should be okay until he puts in a crown or something more permanent next year. Sounds good. Also, further feedback from friends about Novicane shots makes me feel calmer as well. Not to mention the biggest help: I received prayer about all this anxiety on Sunday. The anxiety is sadly affecting my Crohn's. So, after all that, I think I'll be fine.

Thank you for your prayers. I'll update the blog with how the appt. went.

RESCHEDULING

Well, as luck (or something else) would have it, my dentist's back is out and he can't come to work this morning. So, we're going to talk at church tomorrow and reschedule.

I'm so sad that my husband and I couldn't sleep in, but glad I don't have to go through it today, but sad that I have to get ready for it all over again another day... Perhaps this false start will lessen the anxiety before the actual event. We'll see.

I'll keep in touch. Thank you for your prayers.

Doing okay

I'm doing okay, just so you know. I'm not freaking out very much, I just happen to think about my appointment tomorrow a lot. And then I just try to give it to the Lord. He can handle my anxiety and instill peace in my mind and heart.

So, I think I'll be fine. I'm feeling especially hopeful because my doctor said there wouldn't be a problem with having dental work on Imuran and I should be fine using Valium on Imuran, too. Yippee! So, I'm doing a little "experiment" tonight, as my dentist/friend instructs me, to see how Valium makes me feel. He said there's a small percentage of people who have the opposite reaction to Valium than hoped: they get really restless and unable to settle down. Or other people just get knocked out and fall asleep. I've had a generic Valium in college for my (first) colonoscopy, and it had the "intended affect:" I was very restful and happy and at ease. I'm hoping I'll have a similar experience this time.

And for anyone worried: my husband will be driving me to and fro tomorrow. ;)

Some of you have brought up a good point: there's a chance that this dental work will improve my health. If indeed my teeth have been allowing bacteria into my body willy-nilly, then closing those doors will keep me healthier. We'll see!

Teeth

Here's the (long) story:

Monday night after small groups, my husband and I were talking to our friend, who's a dentist. We were asking him about dental insurance and how good mine was. He said he would take a look at our teeth, if we wanted, to see what kind of work we might need in the next year, so we'd know what kind of plan to get. I said that I haven't been to the dentist in like seven years (sorry Mom and Dad!) but I would like to know. So, he fit us in today, Wednesday (it's very nice to have a friend who's a dentist).

He took a look this afternoon and said, "Well, you're making up for lost time."

Seven cavities. One of which looks dead and will probably need a root canal and to be rebuilt (crown, etc.). Four wisdom teeth need to be removed.

Start the panic.

As some people who read this blog know, I have a little problem with dentists. I freaked out at the dentist for many years growing up (like, three hygenists holding me down every time, just for teeth cleaning). I was probably in middle school before I settled down. I've only been to one dentist in my life until today, partly because I. Hate. Going. To. The. Dentist.

And now I'm making up for lost time. Yes, I'm freaking out. You know me! But I know that it will be okay, once I get over this hump. And if I take care of my teeth, I probably won't have to worry about this magnitude of work for a long time after all this work gets done.

He asked me when I can come in. I said, "How about January 1, when my insurance kicks in?" He said, how about tomorrow? Yup. He said I cannot wait much longer to take care of especially one of my teeth. It's that bad. So, I'm going in on Saturday.

I write this on my Crohn's blog because (1) it relates to my health and the way I deal with health problems, (2) I want to update my family and friends all at once so you can be praying hard, and (3) my Crohn's adds some difficulty to this situation. If I didn't have Crohn's, I could just sign up for an appointment, get some valium (tee, hee), and get started. Because I have Crohn's and am taking a heavy-duty immunosuppresant drug, I have to get clearance from my doctor, which might mean some preventative medicine before or after the appointment. And I won't be able to take Advil for the exam or for afterwards. And if I want to take Valium (which I do), I need my doctor to okay it.

So, needless to say, please pray. Please pray that I can deal with all this panic as it comes up without repressing it (b/c that flares my Crohn's), but also pray that I can find a way to give it to God and be able to relax during the procedure this Saturday morning (provided my doctor clears me) without ignoring what's going on. There has to be a healthy way to divert my attention, don't you think?

Pray, pray, pray. Breathe, breathe, breathe. Lord Jesus, have mercy.

False Alarm

Yup. I just heard from the nurse today and they got my additional blood work back and my B12 level is normal. So, I don't have pernicious anemia.

Why am I not excited?

I should be! I should be happy that the B12 vitamins have apparently been working. And that's good news because it implies that I am absorbing those nutrients well.

But I feel kind of let down. I mean, I still don't have an explanation for why my hair continues to fall out. And I guess I was hoping that the B12 shots would give me increased energy and brain power and warmth (I tend to be cold). It was great having a scapegoat ("Tired? Don't worry, it's just the pernicious anemia!"). And I don't have an answer for the shortness of breath, though I have to say, I am breathing just fine this week. Maybe I was just stressed and not getting enough sleep.

I could still take the referral from my doc and see a pulmonary specialist, take some breathing tests and see if anything's wrong there. But I don't know. I think I'll see how I feel for awhile and then maybe go in before my HMO runs out at the end of the year if I'm still having problems.

I think that, in general, I need more sleep and more exercise, and the scales will tip back into normality in many areas. Please continue to pray, though.

Bloody nose

Yup, I had two surprise bloody noses this morning. That's all. I thought I would record them here for posterity. I apologize that you have to witness posterity, but oh well.

I thought people with anemia don't have enough blood to go around, much less lots extra to bleed out their noses!

I'm fine now. I think it happened because it's VERY dry here these days and I tend to blow my nose too hard. But I wanted to write it down in case it will be important to remember in the future.

Pernicious Anemia

Yup. My doc thinks I have pernicious anemia.

I went into the doc on Wednesday because of some persistent shortness of breath (breath shortness?) that I've had since Saturday, to the point where I have to concentrate on breathing in and out. My inhaler didn't help, but my peak flow meter (asthmatics own them: you breath hard into it and it tells you if you are taking enough air in) says that I'm getting enough air. So, that knowledge helped some with the panic that I felt about not getting as many full breaths as usual. But I still wanted to see the doctor.

He said I sounded fine, breath sounds and heart rate, no heart murmurs or anything. I was pale but I told him I'm always pale (do I hear an amen?). I'm not coughing at all or having soreness in my chest.

He ordered a chest x-ray, and it came back normal (I got to see it and was stunned at how beautiful it was, how beautiful I am on the inside. ;) It was even cool to see the pocket of gas in my stomach (though you didn't have to tell me it was there)). It was the blood tests (just a CBC, mom-in-law) that came back with this diagnosis.

When the nurse called this morning and said pernicious anemia, I asked what exactly it was, and she said it was a B12 deficiency. I had to ask her to repeat it, because I am taking B12 supplements and have been for a year now. My B12 levels were great the last time I saw blood work, but my husband and I think those results were from before the last hospitalization.

Still, it's frustrating. I'm feeling good, I'm even sneaking a little bit of lactose into my diet and my body is doing fine (i.e., I don't take a Lactaid tablet when I have bread, even though whey is an ingredient). Maybe the anemia is partially due to having NO red meat in my diet anymore. I don't know. As my husband said, this anemia may just be par for the course with having Crohn's Disease.

The nurse said they're going to do some more blood work to confirm the results and I don't have to get more blood drawn; they're going to try and use more of the blood they already took. And then I might have to start getting B12 shots. As the webpage I linked to above says, the prognosis for recovery is extremely good if caught early and if I follow treatment. So, I'll do what I can. Maybe then I can get a good breath of air, and maybe then my hair will stop falling out so much, too. ;)

Not excellent

I'm not feeling excellent this morning, and I felt like writing a post about it. I feel bloated and my tummy is really big. It's unusual to feel yucky in the morning; that's usually my best time (I think because there's so much less food in my body). And I didn't have anything unusual or risky this morning for breakfast, so I don't know what could be causing it, except for the apple pie last night and a VERY cheesy pasta dish last night. But that should have passed, and I took a lot of lactaid pills. Hmm.

I think I'd feel better if I was in an environment where I could release some of this pressure, if you know what I mean.

But I can't.

I'm at work.

Oh well. I'm sure it will pass (tee, hee), but I may have to have a Boost instead of solid food for lunch, just to make sure not to add anything new to the mix. And then I'll probably feel fine.

But in the meantime, I feel not excellent.

Apple

I ate half an apple just now, with much trepidation. I get mixed reports about ripe apples and Crohn's sufferers: they're bad for some, fine for most. All agree that the peel is bad news, so I took care of that right away. But the applesauce went okay yesterday, and I'm hoping I can stand ripe, unpeeled apples in order to enjoy the apple-picking expedition my husband and I have planned for this Saturday.

Not to mention the potential benefits of adding this little insoluble fiber to my diet. ;)

Hard

Please note that this is a pretty personal entry and more for my sake (to remember this journey) than anyone else's. I apologize ahead of time for the candidness. ;)

My latest and continuing frustation in the Crohn's area of my body is this constipation. It's constant, and it reminds me of the time during the first semester of college that I struggled with it for four months (probably because of a drastic change in diet).

I've tried everything--drinking lots of water, adding fiber to my diet (though not insoluble), walking more--and nothing seems to work. I don't want to get addicted to laxatives, but I'm afraid that that's where I'm going to have to go next, because the complications brought on by const. are not good. I won't explain them, and I've probably already shared too much, but they're aren't good.

So, I'm trying some applesauce daily (potentially gentle and insoluble fiber) and trying to walk more and also trying a key thing: not pushing too hard.

Sorry again for the grossness.

Doct Appt Today

A GREAT doc appointment today. It was two months from last time, and the big difference was that I am now OFF steroids (and have been for about a month). So, when the nurse asked me the usual "what drugs are you taking?" question, I only had ONE drug to say: Imuran! Freedom!

The nurse went on and on about how great I looked, how much more energy I seem to have, how my color is so much better. I had to admit to her that my appointments are usually in the late afternoon, after work, and I generally look and feel better in the mornings (at least, after I've fully woken up). But we both agreed that I'm doing better.

And the doc had good things to say (though in his usual flair-less style):

-I told him my main pains in the intestinal vacinity right now are probably related to the fiber supplements I've been taking (5 g/day). He said, "And why are you taking fiber?" Well, I thought I was supposed to be taking it, because it's good for you and because I don't have any in my diet and because I'm getting constipated (there, I've said it) every other week or so. He said that he has a low threshold for getting me off fiber, because it "causes so many symptoms," so if I have too many troubles, I am fine getting off it. I guess I'd rather try and see if it could work, because I don't want to get addicted to laxatives.

-When he asked me the usual "are you having any diarrhea?" (the big Crohn's problem) soon after the fiber conversation, I said, "no, my problems are all in the other direction." (Like I said!) And he said that he was sort of encouraged (not his words) by that, because he said it could mean that my Crohn's is going down a little and my body is normalizing. VERY exciting!

-He asked if I was planning on getting pregnant anytime soon. Good grief! He's only told me a thousand times that I am NOT supposed to get pregnant on this drug! If he wants to remind me, I'd rather he just said, "I just want to remind you that it is not advisable... blah blah blah" Anyway, he's a little annoying, though the bearer of much encouragement today. So, I said, "No, I'm not planning to get pregnant until my Crohn's is much better, but I was planning to--" and his eyes snapped up to mine (tee, hee, freaking him out), and I said "--get a flu shot. Can I get one while I'm on Imuran?" "Yes, yes, get a flu shot." I couldn't help a sucker punch.

-I told him about my hair falling out. Well, it's falling out much more quickly than usual, and I noticed it's a possible side effect of Imuran. He said that we should wait and see how it goes, because it could be a nutrition deficiency, and as I'm improving in health, my nutrition retention will improve, too, and then my hair might decide not to fall out. So, we're keeping an eye on it. Oh well. I'm glad I had a lot of hair to begin with.

So, overall, good news. And the best news: he said I should see him in THREE months! Yay! I've been seeing him every two weeks, then every month, then every other month, and now every THREE months! Very encouraging! Forward progress! Praise the Lord!

I think my challenges now are to figure out the fiber, to get started on the Omegas (yeah, yeah, I know, I'm stalling), and to manage stress. It's been stressful lately.

Thank you for your love and prayers!

Blood report

I just heard from my nurse after some harrowing phone tag. She left a voicemail message saying that she had the results of my bloodwork and I could call her at ... Well, I thought they would call only if something was wrong, so I called right back, and she wasn't there. So, I promptly began to freak out and called my husband, who did an admirable job of trying to calm me down. I mean, there are many bad things that can happen with this drug: high susceptibility to infection, liver damage, and last but certainly not least, many types of cancer.

http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682167.html

However, not to continue to leave you in suspense: my blood is fine. No problems. I can stay on the Imuran (even if my hair is falling out faster than usual).

Blood

Oh, don't worry, I'm just trying to be sensationalistic (is that a word?). ;)

I got my blood drawn, finally, to check on the Imuran/aziathropene and how it is affecting my body. I should be getting it drawn every 3 months. There is a chance, I believe, for adverse side effects on my liver or kidneys or something. I don't remember. I lose track. But I'm not that worried, honestly. I can't begin worrying about the only drug that (a) my Crohn's responds to and (b) my doctor will let me be on. The stress would ruin everything. I have an appointment with him, with my GI, next Friday, so I'll probably find out then how my blood looks, unless it's really bad and they have to call me right away.

I'm feeling good, still, praise the Lord! I am gaining a little weight, which is awesome. I have occasional evenings of minor intestinal discomfort but I can usually create an explanation. It's amazing how much time heals my mind. I'm no longer freaking out about every little gas or cramp I feel. I'm keeping cool, keeping calm and doing smart things: drinking lots of water, walking, talking about things that bother me instead of holding them in ,eating in an atmosphere of calm, etc. And I'm even able to eat things that bothered me just a month or two ago: fried foods, fatty foods, broccoli. Most aren't things I should eat anyway, but at least I don't have to be so hyper-vigilant to avoid them.

Thanks for checking in and for loving me. I hope you are all well, too.

Goals, cont.

So, I started the Metamucil a day later than I planned because I wasn't feeling 100% on Friday and I didn't want to complicate things.

But I have now taken it two days in a row, and things are... okay. I am pretty bloated, though not in pain, and so I decided to ask the GI nurse about it when I called her about blood work for my medication. She said that (though she was the one who said it originally was okay) fiber suppliments are pretty gassy by nature, but Metamucil is known for being EXTRA gassy. Hmmm. I reminded her that I have Crohn's and said I wanted to up my fiber intake b/c I don't get much in my regular diet and was it okay for me to take these suppliment at all? "Oh, yes! Your doc says it's great." But she recommended Citrucel or Fibercon this time, which are a little less gassy but still gentle.

I guess my husband's going to have to finish that big container of Metamucil that I bought in bulk. ;)

Off Steroids

At long last, I post again.

I am now officially off steroids. I've been off them since Sunday, and it's going well! I feel just fine. Whenever I have gas or something irregular, I can generally trace it back to a risky food choice or stressful time. Praise the Lord!

I have some goals for myself in the next few weeks. I say "few weeks" because I am afraid to do them and want to give myself time to build up to them. My goals are as such:

--Metamucil.

I always assumed I couldn't have any kind of fiber, but the more I read about fiber, soluble and insoluble, the more I learn that insoluble fiber is my enemy, not soluble fiber. I should be having soluble fiber for good intestinal health (sometimes weak intestines can be reason enough for surgery) as well as for the reasons everyone else takes extra fiber: regularity, bulking, lowering cholesterol, etc. And Metamucil is a safe brand. So, I'm going to start it tonight. Yup, tonight. And I'm going to see how it goes.

--Omega 3's

"Didn't the dietician tell you about that in July?" Yes, she did. I'm just, well, afraid of trying that, too. I feel lots of fear about putting unknown items down my throat--which makes medicine hard to try out. And honestly, to give myself some grace, who could blame me? Two hospital stays don't make a woman more confident about her health. But I need to try these out. I'm only on one drug right now and feeling good--a person could even say that I'm stable. Perhaps I should try some remedies that could play a big role in getting my health back on track, and maybe even lessen my Crohn's.

--Florastor (probiotics)

I can't use this without a prescription, so I'm going to ask my GI doc about it next time (in about a month). It feels extremely risky, because it plays around with the bacteria in my digestive system. I don't know if I should upset the delicate balance of things, but maybe my balance is off and this probiotic would help. Heck, they give this stuff to newborns.

So, we'll see what happens. I'll let you know.

While taking the Eucharist last Sunday, I had a moment of feeling like I should open my mouth, because when healing comes, it will come into my mouth. Not a prophetic word or anything fancy, just a sense that I need to be open to healing, that I need to be willing to open my mouth, to open my mind, to take risks. My husband felt like healing through my mouth could also mean a healing of my relationship with food, because I'm afraid of food in many ways. It just reminds me that God heals in many ways, and even if He didn't heal my body completely, He may have other ways of healing in mind for me.

Daily

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...

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!

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.

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)

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!

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.

Good thing

Yet again, I stress that no news is good news for my Crohn's blog (unless, of course, you get a call from my husband saying otherwise). I'm doing well! After all that stressing about the lessening steroids, I'm doing fine.

I go to my doctor August 7 for another check-up, and we'll see what happens then. I spoke with a distant relative of mine over the weekend who said that her son was recently diagnosed with Crohn's, but they discovered it simultaneously with discovering that he needed immediate surgery. He had absesses on his intestines, I think growing on the walls of the intestines, not the insides. Yikes. He had surgery and is doing much better, but is having stricturing inside his intestines now and those little tunnels that connect inside your body but aren't supposed to... what are they called?... fistulas (I had to look it up online, which is something my husband doesn't recommend I do, for good reason--I'm highly suggestible).

Anyway, needless to say, he's having complications from his surgery, but he's better off than those absesses breaking open inside his intestinal cavity, which is what had started to happen. And his mom mentioned that the doctors would have preferred to do surgery when he was not so inflammed and in trouble, and she thinks that's probably part of why he's having complications now. He had 18" of his small intestines removed with an ostomy for 3 months (which I don't think is too bad, considering how much they took out). He probably has to go to the bathroom a lot more now, but that's a small price to pay for not living in the hospital.

I was able to give his mom some information that I've learned: about the need to manage stress, about not holding in your emotions, about relaxing your body and mind when you eat, about praying and trusting in God. She was very interested, and wanted to know the title and author of the book I love ("Eating Right for a Bad Gut").

It felt good to help her, but it was also hard to hear (as it always is for me) of someone else's really hard time with Crohn's. I don't really like hearing other people's stories, unless they're positive. Ridiculous and escapist, I know. It's just such a wiley disease that you hear these horror stories and can't count on escaping those horrors yourself. Lord, have mercy.

Doing well

I just thought I should leave a little post saying how I'm doing with the reduced dose of steroids.

I'm doing fine. No differences from how I was feeling before I lowered the dose. I would still characterize my Crohn's as "active," meaning, I have to be very careful about what I eat and I don't feel 100% good all the time. But I'm not in pain, just gassy in the evenings, and I am getting enough nutrition. At least, enough nutrition is going in my mouth. Hopefully it's sticking to my body (though I'm not losing weight, so something must be sticking).

There you go. Nothing exciting, but frankly, that's good news! Keep praying. I imagine it'll take awhile (now that I'm thinking lucidly) for the steroids to come out of my body and for me to really experience the effects. I go to the doctor in the next few weeks, so we'll see what he says.

I love my dietician!!!

Praise the Lord for my dietician!

I just had an amazing appointment with a dietician. I've been diagnosed since 2000 and NEVER been to a dietician. All my docs dismissed them, saying that food doesn't affect Crohn's. Well, it might not change the trajectory of the disease, but it does affect my stress and pain levels, which DO affect my Crohn's!

So, we talked, and I learned about so many things, and had all my questions answered (my husband and I wrote down all our questions beforehand for me to bring in). She was amazing, very kind and a great listener, and not at all pushy or like a know-it-all. More like a knowledgable aunt. I was able to voice all my questions, and all my doubts. I just brought something up everytime I was unsure or unclear, and she addressed it!

I don't know where to begin with all I learned! This will be the longest post ever. I'll just jump in.

She wants me to get 76 g of protein a day. She said that my weight indicates that I should get at least 65 g/day, but because I'm in a rebuilding phase (after the hospital, etc.), I should be getting around 76 (and more is great, too). She went through my food diary that I had brought and counted out all the protein and calcium in my diet. (She gave me a copy of the chart she used that had all the amounts of protein for food servings.) The first day she checked--Saturday--I got exactly 76 g of protein! And the next day, Monday, I got 75! She said she isn't worried about my protein levels. ;)

I do need more calcium, though. The average adult should get 1,000 a day, but I should get 1200 because of my Crohn's and steroids and everything, and I'm getting around 700-800. She taught me about Lactose and how lactose is a carbo, so if a food product (even a cheese) has no carbs, then it has no lactose! So cool!

She taught me about the chemical make up of foods and why they might not work for my Crohn's. I told her about avoiding aspertame, and she said that aspertame is made of two amino acids also found in meat and milk, so it probably isn't the problem. She mentioned, though, that I have a lot of juice and juice has a lot of sugar, which can cause gas as it drags extra water into intestines. She said to keep an eye on whether or not I feel gassy after having juice. If I do, I could change to Splenda Light juices (you're right about the wonders of splenda, my mom- and sister-in-law!), because Splenda is made of sugar. She did say that it's important, though, to avoid things that don't work for me, but it was SO helpful to know what these things are (i.e., she said that Splenda is made from sugar, with an oxygen molecule (or something) replaced by a hydrogen (or something, I can't remember). Knowledge is definitely power for me, as so much of this food battle is my mind's worrying about it all.

She said that with my food diary, I should keep track of amounts of everything, as well as my stress levels, because they sound important for my health ;). She said that I should know within several hours if a food doesn't agree with me.

She said one of the most important things I can do is to chew really well, because when you chew, the act of chewing along with the saliva actually start digestion well along, and help relieve my body of having to do more digestion. People don't realize how much it helps.

She said my Flintstones chewable vitamin is fine, but there is a new liquid multivitamin from Centrum which may be better (more calcium for adults and better for digestion).

Here are the things I'm going to try:
--Liquid Centrum multivitamin
--More calcium
--Less sugar, maybe add Splenda
--Caffeine in small amounts (not a problem, really, in small amounts, with low acid, like in tea)
--Take Windmill-brand Omega III (another thing you thought of, mom-in-law!), starting with 1,000mg a day, because Crohn's patients often have low levels of Omega III in comparison to the general population (and I would give you the specifics but I grabbed a wrong page from the nutritionist). But don't take Omega III before the dentist or surgery, because it thins the blood.
--Start with a probiotic (she said, 'have you thought about probiotics?' I LOVE THIS WOMAN!!! I said I had but didn't know which one to take. She said, here's one they give to babies when they're born, so it should be gentle enough and she asked a gastroenterologist on staff about it). It's called Florastor.
--Gradually increase my fiber intake one more serving a day, increasing to 25g/day if I can. She explained that fiber is good not only to prevent both diarrhea and constipation, but also to build muscle tone in the intestinal walls. I thought it was just for constipation and diarrhea. She also gave me a chart that lists soluble and insoluble fiber amounts in foods.

There's more, I'm sure, but I'll stop. I feel like I was doing well with nutrition, mainly based to my mom's teaching me about getting food groups while I was little and ate weird. Thanks, Mom! But now I feel like I'll be completely healthy, and maybe even get better! I still have to watch what I eat, but I feel like I have so much more control over it now. I feel so encouraged, so empowered, so freed of many worries about food!

Praise the Lord for His taking care of me!

It's a new day

Today I started lessening my dose of Entocort, the steroid that I've been on for about a year and a half. I went from 3 capsules (9mg) to 2 (6mg). And last night was terrible with the anticipation, the despair, the feeling that I will have a flare the first day I try to lessen my steroids. My husband was so patient, helping me to see the bigger picture: for instance, I probably won't have a flare the very first day I lessen the steroids. And that this is only a good thing: it is better and safer to be off the steroids, and if I have to have surgery, there is a good chance that it will improve with my Crohn's, if not push me into remission for awhile.

I visualize my body releasing its addiction to the steroids. I imagine hands opening, relaxing and releasing their grip on the steroids. I pray that God is doing this with my body, helping it to let go of what it needed for a time. I pray that God will even let me go into remission, or be healed completely. I want to see this as a new day, a new start.

And for further peace of mind, I want to prepare for surgery, should it happen. I want to make a plan for my husband's meals, for instance, that can be started should I go into the hospital unexpectedly or expectedly. Things like that. I'd like to know that we have a plan for life's details should I have to go back to the hospital. Even if we don't use the plan, it's worth it for my current state of mind.

I feel pretty good, especially compared to yesterday's dread and despair. Praise the Lord! I'm going to eat smart, exercise, relax, breath slowly, pray, pray, pray, and release my emotions when they come, not hold them in.

Please pray for this transition. There are many indications that it could be very smooth. I need to remember that, because my state of mind can affect how well the transition goes (although Crohn's will still do whatever it wants). I release this all to Jesus.

Thursday

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.

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.

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!

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.

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!

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.

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.

Naltrexone

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.

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.

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!"

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.

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.

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...

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.

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.

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.

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.

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.

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.

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.