Food

Here are some of the foods I want to eat as soon as I feel better:

cheese
chicken stir fry
Chick-fil-A grilled chicken sandwich with bacon
chocolate cake
grilled cheese
cheese sandwich
chicken tacos
mashed potatoes
scrambled eggs
bacon
quiche
french toast
roast chicken with new potatoes
macaroni and cheese
lasagna

quick update

Juni is calling so I need to be quick:

I've been on a liquid diet for almost three weeks because of Crohn's. Flare? Abscess? I think flare.

So, the doc has me on Cipro for "at least a month." It's safe for breastfeeding as I feed Evie.

I've been on it for a couple of days and no change yet, but I'm hopeful.

I'm so so so sick of this liquid diet. I can't even express to you.

Pregnant

Quick update for my own sanity:

I'm five months pregnant with our second child--another daughter--and am experiencing active Crohn's since I got pregnant. I guess I was kind of hoping that the pregnancy wouldn't set it off again, but oh well. We'll survive.

Right now I'm feeling anxious because of the enchiladas I made tonight and the fact that the onion and green pepper weren't soft-cooked. They were crunchier than I usually do, and there was a fair amount in my serving. Lately it feels like everything bothers my gut. EVERYTHING. And my GI--whom I LOVE LOVE LOVE, for the record--said that there really isn't anything else he can do for me and if I start having serious issues again, he's going to refer me to the doctors and surgeons at U of C. Sigh. So I'm trying to lay low.

Memories of last pregnancy and the tremendous back pain I experienced for months, which we found out was redirected pain from the growing abscess in my abdomen are coming back. I'm scared something will happen again that will take me away from Baby B, like it did with Junebug. Those memories have such a hold and pull me into such fear. I want to keep giving them to the Lord.

I'm discovering that there are things I need to do to keep my body in working shape during this pregnancy. Chasing a toddler all day instead of sitting in front of a desk makes for different energy needs, and I want to take care of myself. For the record, here are those things I've learned so far:

1. Prenatal Yoga. I use a DVD I bought for the first pregnancy that is soothing and makes my body feel so strong and relaxed and well-stretched. It also seems to help digest my food in the evenings. I make sure to do it AFTER Junebug is in bed.

2. Drinking Fluids. I need to drink more fluids. I can tell I'm not getting enough just from all the Braxton-Hicks contractions I'm having already. I drink Crystal Lite lemonade to help get water but I want to be able to do regular water. I can only drink it ICE cold, usually with ice in it.

3. Napping. I need to nap when Junebug naps. I need that sleep more than I need the time to pay bills, etc.

4. Prayer Time/Bible Study. I need to do this.

5. Introvert/Alone Time. Ditto

Who knew?

Who knew that mere days after I wrote that last post, sweet Juni was born?

Who knew that five weeks after her birth, I'd be in the hospital for two weeks because of the mysterious back pain that I'd been experiencing since pregnancy?

Who knew that I'd have two fluke seizures while in the hospital, causing me to have to surrender my driver's license? Who knew I'd be without driving privileges until late August?

Who knew I'd be on steroids for eleven months and in the hospital again in August?

Who knew that I'd have a surgeon consult in September?

Who knew that I'd be off steroids Thanksgiving and have now been off them for two months?

Who knew that yesterday and today would be the first pain I've had since August?

God knew.

And He knows how He'll take care of me for whatever is to come. He knows my fears, my anxious nature, my depression, my despair over this disease. He has a plan.

But the pain today makes me frustrated. It's my period, and it's common for me to have a flare during my period. But other than that, I can't think of a reason to be having pain: I'm eating small meals (the TRUE secret to my success these past months), I'm dealing with stress, etc.

I think it has more to do with the fact that Crohn's does what it will, when it will, for no reason that we yet know. I can do everything right that I know to do, and it will still act the way it wants to. The Lord is the only one with true control over it. I would like to remember this verse during this time:

Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory. I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

Romans 8:17-18

Waiting

I am waiting.

I am waiting for this baby to arrive. We've reached 36 weeks, 2 days, and are within safe limits for the baby. 37 weeks is full term, so if we make it to Sunday, we're totally golden.

And while I'd love to make it to both of my baby showers this weekend (Sat and Sun), and to the concert Kurt and I have tickets to Fri night, and to the movie date we have with friends on Sat, I would NOT mind having this baby RIGHT NOW.

Yes, that's right.

I would like to pop her out right now. I'd like the contractions to start right as I'm typing these words. I'd then like my water to break (so that labor is DEFINITELY on the way) and go to the hospital. I'd like to experience mind-blowing pain followed by a bundle of joy in my arms, breastfeeding at my breast.

TODAY.

Any time now.

It's just that, and I know this is selfish, I'm so sick and tired of the constant backache. The way my intestines keep tensing up painfully with Crohn's contractions. The boredom during the days. The need to eat a lot but feeling so big and full and in intestinal pain. The need to sleep and rest a lot and therefore miss out a lot on life.

I do realize that when the baby is born I will have new pain to contend with. I will have a new little person dependant on my body for survival. Probable stress from the birth affecting my Crohn's, at least for a time. Sleeplessness, sleeplessness, sleeplessness.

But right now, none of that matters at all.

Weary of Chronic Pain

I am weary of chronic pain (I know, you didn't expect that from the title).

I don't write a lot when I'm doing well, and I was doing well for about a week and a half, and then this Sunday, I started having pain. And I've had pain starting every afternoon this week and continuing into the night. Yesterday was the best day, with pain only starting after/during dinner.

Today, I woke up with pain.

I just feel so discouraged and self-pitying. I feel so weary of managing pain, of thinking through what to eat and what not to eat, etc.

I went into the OB on Monday because I was feeling lightheaded (and had been since Friday) and my hands and feet tingled when the lightheadedness descended. She checked my blood pressure and hemoglobin, and I'm pretty anemic. I'm 9.0 and the normal range is 11.5-15.0. (I don't know the measurements.) Four weeks ago, I was 11.0. The doc said I'm malnourished: the baby is doing REALLY well and growing perfectly, very active, and using most of the nutrition I eat, leaving me with the leftovers and the leftovers aren't enough. So, the doc wants me to eat a lot more. She wants me to add one or two Boost drinks to my daily intake of food.

That would be fine if I wasn't experiencing Crohn's pain and really wanted my intestines to have a break from processing food. If I wanted to avoid food that I have to work to digest for a whole day, I'd have to have four to five Boosts in that one day. Expensive and boring. And not enough nutrition (6 Boosts would have 2,000 cal., for instance).

So, I'm trying to eat good meals and not to worry about my Crohn's. After all, it does what it wants sometimes, without provocation from me. I'm trying to be stress-free (but not trying that hard, come to think of it). I'm trying to pray and share this burden with Jesus and with Kurt and with other people who love me, so that my feeling alone doesn't increase the problem. Most of all, I'm trying to eat enough for this little one inside of me to grow and for me to be healthy enough to continue to sustain her.

But I am weary of the pain. I desperately want to call my GI doc and ask for Entocort, a steroid. I want to not care about the complications that brings into the pregnancy, the unknown side effects on our little Junebug, the known effects it will have on our birth/labor.

But I can't. I guess this is part of the self-sacrifice of mothering.

Please pray that I would know how much to bear down and deal with the pain on my own, and when to call the GI doc.

Recovering and Fears

I am recovering from a most lovely long wedding weekend for my little sister's wedding. It was so wonderful, but I didn't do a good job of energy stewardship. Nor did I control my emotional stress very well, so needless to say, my Crohn's has been acting up since Sunday.

However, today I've not had any problems with the Crohn's yet--no gas, no bloating, no pain. So that's great! I'll take it! I've been sleeping a lot and watching what I eat. I guess the effort is paying off.

I'm interested in seeing how my somewhat brittle intestines are going to adjust to having very little space in my abdomen as this baby grows inside of me. I honestly don't understand why the doctors aren't concerned. I mean, there are parts of my intestines that are hardened and not smooth or flexible because of scar tissue buildup. How are they going to find places to go and not just crack open or something horrible like that?

I am being light about this but it really is a fear. My worst infected spot of Crohn's and scar tissue at at the juncture of my small and large intestines, and I can feel how that spot is at my right ribs, instead of my lower right abdomen. I feel the most pain and aching there when I'm having Crohn's issues like this week. I'm only 7 months along, with three months to go (7, 8, 9), and I wonder how it's going to go. Thank God the baby grows gradually and not all at once.

Maybe this is one reason why pregnant women with Crohn's deliver prematurely more often than healthy women--because their bodies say there's no more room in the inn and something's got to go.

I don't know.

And don't get me started on fears of how my Crohn's will be affected by the childbirth. That's a whole other post.

Thanks for listening.

Gas

Another rough week Crohn's-wise. Well, not actual Crohn's pain, but EXTREME gas in the bowels due to pregnancy AND having Crohn's. By the end of the day, I'm surprised that I don't just float up to the ceiling, my belly is so taut with gas.

Just pass it, you say. AS IF I DON'T WHENEVER I CAN.

(insert apologies to coworkers here)

Ahem.

The problem is that when I say "gas," sometimes I mean farting but usually I mean the gas in the bowels that just rumbles around and makes me very uncomfortable. It's not really being bloated. I don't know what else to call it.

Anyway, sometimes, at the end of the day, I lay on my couch (which lays me at an angle, to the right, so it's not blocking a blood vessel to the baby) and watch the two halves of my belly roll around: below my belly button, the baby is kicking and wiggling and I can often see my belly move with her motions. Above my belly button, the gas in my intestines rolls around and I can see it rise and fall like the swells on the ocean.

Deep Thoughts

I mentioned to my husband that I've been avoiding updating this blog because I find myself in a period of life where I don't want to admit that I have Crohn's. I don't want to think about it. I want to wish it away.

But I can't.

So I need to write, he says. I haltingly agree.

Right now my Crohn's is not doing incredibly well. I have pain the afternoons and evenings and I'm not eating anything adventurous. I'm not very stressed out, though I am busy. I am getting a good amount of sleep. I'm taking all my drugs.

And yet my Crohn's isn't great.

This is one of the lessons of living with Crohn's, a chronic disease that the doctors still don't know a lot about (is it genetic? Is it autoimmune? what's really going on with the inflammation? No one knows): you can do all you can to control the disease and control the symptoms, but sometimes, Crohn's will do what it wants. For no reason discernible to humankind.

So, I try to relax. I try not to mull it over too much. I try not to think over and over my food choices, my stress levels, my sleep patterns. I do the best I can and then I sit it out. I assess my pain levels, I wait for the baby to kick, and I wait for the pain to pass and a new day to begin. The mornings are always great, with the food fully passed through my small intestines.

The baby is doing amazingly well, I think, for someone with Crohn's. He/she is the right size, he/she is very active, he/she has all his/her body parts, he/she has a great amount of amniotic fluid to play in. Praise God! May it continue.

Gas Gas Gas

Yup. I'm having lots of gas.

LOTS of gas.

I had my 30th birthday on Wednesday and must have celebrated too vigorously, because I spent yesterday and now today in pain. LOTS of gas. Uncomfortable gas in the abdomen that doesn't leave. And the intestines are squished in with the almost-17-week-old baby (almost 19 weeks pregnant), so there's not a lot of room for the gas to go. And the antibiotics that I was on recently probably didn't help my intestines, either. Looks like I'm back to Boost tonight for dinner.

Sigh.

Hopefully my body will calm down soon and I can get back on track.

Nothing new

My mom or mom-in-law (I can't remember--remember how pregnancy affects your memory?) asked me this weekend about updating my blog. I said that I hadn't updated it yet because I didn't have much to say on the Crohn's front.

I'm doing well! I find that I need to be careful about gassy foods, because they'll create EXTRA gas for me, with my pregnancy hormones slowing down my intestines. But I am not eating especially strictly or anything.

I haven't had Crohn's pain in awhile. I am sleeping well, though not enough, and hope to manage the stress of the vacations and move that we just had so that I won't flare. I am on antibiotics for an infection right now and am going strong with the probiotics, so hopefully nothing exciting will happen.

So, there you go. Beautifully boring! Maybe I'll post a photo of my pregnant self soon.

Ode to Crankiness

I read this in a book recently. The book is Great with Child by Debra Rienstra:

Dr. Joan Borysenko proposes that this greater sympathy and perceptiveness [during a woman's premenstrual and mentrual times] have an actual biological basis. Women are in fact more empathetic during the prementrual and menstrual phases of their cycle, she argues,

"Things that may be bothering us, but that we are unwilling to confront, tend to come to light as if they are being flushed from the unconscious to the conscious so that we can attend to them."

Attending to these signals and dealing with them honestly, then, is the key to turning premenstrual crabbiness into a healthy kind of psychic "housecleaning." She continues:

"This emotional housecleaning is wrongly viewed as bitchiness or complaining, but when seen rightly and heeded, it may be a valuable stress releaser and guide to what we need to change or pay attention to so that our lives will run more smoothly. This is the benefit to feeling down. Additionally, since intuitive capacity, empathy and interdependent perception are also right-brain functions [which are enhanced in the premenstrual/menstrual part of the cycle], it follows that the premenstrual and menstrual phases of our cycle are indeed times of enhanced wisdom."

Pregnant with Crohn's

By now, you all should know about our newest surprise: I'm pregnant! I'm 10.5 weeks along and going well. I'm cranky, exhausted, and nauseous in the evenings, which I can generally control pretty well if I keep eating at least a little something every two hours.

I get home from work and sleep for an hour before my hubby gets home from work. He usually does the dishes from breakfast (!) and starts dinner, letting me rest a little longer. He's a great husband!

I'm ready for bed at 9pm, tho we usually go to sleep closer to 10 or 10:30pm. It makes for short evenings when I'm exhausted, crabby and nauseous, which is why I haven't been in good communication with many of you. ;)

My Crohn's has been up and down since getting pregnant. The first six weeks or so I struggled with diarrhea almost daily. I couldn't get stable bowels for the life of me. And you're supposed to drink a lot of water while pregnant, to build up the amniotic fluid, but drinking water gave me more diarrhea. So, I upped my probiotics to twice a day instead of once, and waited, and that seems to be working! I haven't had any diarrhea in a few weeks.

I have extra bloating and gas, mostly because of the pregnancy, I read. The pregnancy hormones slow down your digestive track so you can get more nutrients from your food (giving most women constipation), but this also creates more gas in the intestines, which is annoying to most but painful for me, because I ALREADY have more gas than I need down there.

I'm gaining weight very well and the baby is growing well, according to the two ultrasounds I've already had. The first was routine and the second was at the consultation with a high risk OB. The baby measured with a due date of 12/4/08 and the due date is 12/7/08. You want the measurement to be within five days either way of the due date, and since our babe measured on the chubby end (our assessment, not necessarily the doc's), we feel pretty good that the baby is getting what he/she needs. And I'm gaining weight elsewhere than just my tummy, so it looks like the babe isn't sucking nutrients from me, necessarily. Yippee!

The Crohn's makes me technically "high risk," but the only things they'll do differently are to have a Level 2 ultrasound for my 20 weeks ultrasound (instead of a routine ultrasound), and then have extra ultrasounds at 26 weeks, 30 weeks, 34 weeks, 38. They want to monitor the baby's growth, to make sure I continue to pass along nutrients, as that's the biggest problem for a mom with Crohn's.

So, I anxiously await the second trimester (only 1.5 weeks!) so that I can start actually looking pregnant and feeling less nauseous, cranky and tired.

Thank you for your love!

Cranky

I am incurably cranky. Coworkers that used to occasionally annoy me now make me want to quit my job, go home and sleep.

Somehow, however, crankiness does not warrant a sick day.

And at this rate, I'll need more than a sick day--I'll need a sick month.

Sigh.

Long time no update, eh?

Well, as many of you know, but not all of you, there have been new developments in my life that directly affect my health. Because I haven't gotten in touch with all of you, I won't spill any beans.

However, my Crohn's has been sucky lately and I wanted to blog a little about it here. This is extremely, how to say... extremely graphic information about my bowel habits, and I wouldn't be hurt at all if you skipped this post entirely.

Simply put: I have had diarrhea every morning for the past week or a little more. Just in the morning, generally, and often if I poo during the rest of the day, it's a normal poo. I think that I've been having this diarrhea because I've been on antibiotics for the last 7 days, so it's not really a surprise, but I ended the antibiotic on Saturday and started again with the diarrhea this morning.

It's frustrating. I think that I had it this morning because I had a mini-flare yesterday afternoon, and I often "clear out" the morning or day after a big episode. However, I don't know exactly why I had the flare yesterday. Is it because my body is coming off the antibiotics and it jolted my intestines? Is it because I took an iron supplement Saturday night with dinner and it messed me up (this is my favorite explanation)? Is it because ... I don't know! All I know is that I was contemplating the hospital yesterday afternoon and then had a full dinner, eating standing up with 26 college students, having a great time, and didn't have a twinge of Crohn's. Very odd.

So, today I'm going to drink lots of fluids (thanks, Karen!) and try and be calm. I am going to take a nap tonight before dinner and a worship time with a friend of ours struggling with cancer. Hopefully my body will even out by tomorrow and I'll be back on track. In the meantime, rest, probiotics, and water shall be my friends.

I'm sick of Crohn's

I'm sick of it. I'm sick of having Crohn's. It's official.

I'm sick of having Boost for lunch when I'm worried about my health.
I'm sick of the painful cramping.
I'm sick of constantly evaluating my bowel movements, my pain levels, my diet, my stress level, my future, my gas, my EVERYTHING EVERYTHING EVERYTHING.
I'm sick of having LOUD "tummy growling."
I'm sick of needing to fart all the time, especially when I'm in places where I can't.
I'm sick of too many doctor/GI appointments.
I'm sick of having so much to say about having Crohn's that I actually have a blog.

Good grief.

I'm sick of my tummy hurting a lot of the time and hearing my doctor say that I'm in remission.
I'm sick of diarrhea and constipation.
I'm sick of missing most of my favorite foods.
I'm sick of asking people exactly what ingredients they put in the food that they're now offering to me.
I'm sick of needing to have a job (or my husband needing to have a job) that offers health insurance.
I'm sick of not qualifying for life insurance.
I'm sick of missing events because I'm home, sick with pain, or at the hospital.
I'm sick of hospitals and ERs.
I'm sick of needing to drink enough water, but not too much, but just the right amount.
I'm sick of pain in the night.
I'm sick of knowing that someday, I'll have to have surgery, but I can't have it preventatively and it probably won't be great.
I'm sick of the real possibilities of having an ostomy or ileostomy for some time in my life.
I'm sick of know that my kids could have Crohn's.
I'm sick of not being able to really exercise, to sweat, to have that release.
I'm sick of pity.

I'm sick of Crohn's.

Snacks

Although I am feeling much better than I was with that bad cold, my Crohn's is still not this gentle, sleeping baby. It's the baby that is learning how to sleep.

One way I'm dealing with this is by not snacking. That's right. No snacks. Only three meals a day and water in between.

I have waffled between thinking that it would be good for my Crohn's to have five or so small meals a day, so that I don't overwhelm my digestive system with a huge meal three times a day, and believing that it would be good to have only three meals a day so that my digestive system can catch a break.

I'm currently using the second option. Because I've been eating A LOT lately, in small meals and snacks all day long, and my life is stressful and doesn't include a lot of sleep, I thought it would be good to have three, moderately-sized meals a day.

And it's working! I feel good. My bowels are regular (TMI, I know), I don't have cramping, I have only a little gas (internal), etc. It's good.

Surviving a cold

So, I've had a bad cold (cough, low-grade fever, runny nose, stuffed up nose, headaches, etc.) since last Tuesday. I was out of work from Tuesday 10am through Friday, returning just today!

And I went to the ER on Friday afternoon because of intense Crohn's pain in my abdomen. Well, I'm not positive that it was Crohn's, but it was my abdomen and was related to cramping sensations and nausea. It was horrible. But when I walked in the door of the hospital(after my husband left work early to come help me), my pain left me. If I pressed on my abdomen it was sore, but otherwise, no pain.

They said it was good that I had come in and indeed, my GI doc is the one who okayed me going in in the first place. But I sure felt like the little girl who cried wolf.

I almost felt like it had been a dream, that horrible pain in the morning and afternoon. It was nearly as bad as a bowel obstruction pain, only it didn't ebb and flow like one. And I had reached a point where I was not only looking forward to the ER for its pain killers, but also for the NG tube that would help me feel better! You know I'm really in pain if I'm welcoming the NG tube.

So, they did urine tests and blood tests and they came back normal, except that I was dehydrated from not drinking or eating anything after breakfast for fear of worsening the pain. My blood and urine tests said my nutrient levels and white blood cell counts were normal, which isn't usually the case in normal time!

I left at 6:30pm, three hours after entering the ER, and I was in no pain, having received only an IV of fluids, no drugs and a diagnosis of "abdominal pain, NOS" and "upper respiratory infection" (AKA cold), which I already knew!

I'm feeling fine. I didn't eat anything Friday night and took it really easy Saturday and Sunday with eating. Today I have some gas but nothing terrible, especially if I had walked some after lunch.

Praise God for his sustaining presence.

And if you think of it, please pray for my friend, John, who is struggling with cancer. Late last week they found an alarming growth on his spine that was causing him enormous pain and that needed to be removed. So, they started immediate radiation therapy. Please pray for him and his family. My pain is so small compared to his.

Check in

Just checking in...

My Crohn's has been doing surprisingly well, considering how much stuff has been going on in my life.

I went to my mom's Jan. 18-21, had something every night that week, then left Thursday afternoon (24th) for a camp and got back Sunday night (28th).

Saturday and Sunday, I wasn't feeling well Crohn's-wise, and that pain continued through Tuesday evening. Wednesday (yesterday) I woke up and felt fine all day, and ate normally all day as well, without having to have Boost.

So, I wonder if the bad Crohn's was due to (a) not having a routine and feeling stressed out for several weeks, (b) not eating normally for several weeks, (b) doing a lot of physical activity while at camp, or (d) just the Crohn's acting up of it's own accord.

Anyway, I'm feeling fine now, praise the Lord!

Surviving December and January

Well, I'm back from vacation and a long work conference, and I'm doing pretty well, thanks be to God. I thought I would make a list of all the things I'm doing to take special care of myself during this unique time of (during and after) both positive and negative stress:

(1) I'm keeping an eye on my bowels (nothing is TMI on this blog anymore, right? Can I hear an amen?), and then adjusting my water intake or applesauce/safe bulking fiber accordingly. Using foods as medicine is something I am doing more of in general. For instance, I read somewhere that apple juice is a bit of a diuretic and applesauce does the opposite. I try to use foods for what they'll help me with and supply me with.

(2) I'm taking my probiotic everyday, and not forgetting to.

(3) I'm trying to drink a good amount of water but submitting the amount to what's mentioned in (1).

(4) I'm trying to move around some after I eat (leisurely walking, doing errands around the office, standing to do dishes), instead of sitting on my butt, so that food can get a good start digesting.

(5) I'm avoiding foods that are in my "caution" category: foods that sometimes give me trouble and sometimes don't. During this time of stress and post-stress, it's important that I don't take risks.

(6) I'm eating small portions of everything and being conscious to chew thoroughly (thank you, Pierre, for reminding me of this).

(7) I or my husband massage my stomach lightly before sleep, and occasionally when I'm having cramps after eating. It seems to loosen things up, and my physical therapist swears that it could help break up scar tissue. I don't know if I want that (it's my impression that some of my intestines are ONLY scar tissue at this point), but I wouldn't mind the scar tissue that is developing to be shaken up a bit, like when you floss your teeth and the bacteria don't have a chance to settle into your gums.

(8) I am watching how I sit, stand and lay down, being conscious of my posture and how it affects my abdomen and breathing. This is good for stress management as well as pain.

(9) I am trying to sleep as much as possible.

I think that's it. Thank you for your prayers!