I like dessert.
This is a bummer, since high-fat foods usually trigger GI distress symptoms for me. So I search diligently for lower-fat versions of yummy things. I find that if I keep the percentage of the calories from fat below 30% in whatever I am eating, I feel better than when I don't. And although tempering fat grams by making sure to eat them with fiber is generally a good-health tip, it doesn't work for me, since high fiber is another one of my triggers.
Here are some of my low-fat dessert favorites:
Frozen yogurt - with or without toppings. But if I REALLY want higher-fat toppings, I make sure the yogurt is non-fat and that the yogurt portion WAY outweighs the topping. It is amazing how a little peanut butter topping can dress up a bowl of chocolate frozen yogurt. Also, read the labels on toppings to use at home. I'm often surprised by the low fat ration in some hot fudge and caramel toppings.
Chocolate-banana smoothie made with fat-free milk, Instant Breakfast, ice cubes, frozen banana and a little honey or agave nectar. Sometimes this is breakfast.
Low-fat chocolate cookies with vanilla chips - The only fat in this recipe is in the vanilla chips. Yum.
Fortune cookies--yummy and usually fat free.
Slush made in my ice-cram freezer from Torani syrup and water (1/2 ratio).
Angel food cake with berries and fat-free Cool Whip.
Jello pudding (I like chocolate and vanilla) made with fat-free milk, served warm with fat-free Cool Whip.
Tapioca pudding made with fat-free milk
Ginger snaps
Gingerbread cookies with royal icing (the crunchy kind made from egg whites and sugar)
Meringue tarts filled with fat-free pudding or fruit and fat-free Cool Whip
Meringue cookies
100-calorie snacks (pricier, but great in a hurry once in a while)
Cinnamon or orange rolls (especially the ones my sister-in-law Glenda makes) without icing, or when I add my own, fat-free icing
Rice Krispie treats
Low-fat apple crisp or peach cobbler with fat-free Cool Whip or vanilla frozen yogurt
Banana chocolate chip cookies (more fat than the chocolate ones, but still a low fat ratio)
Fat-free brownie muffins
Reduced-fat pumpkin or banana bread
Yogurt-dipped pretzels
OK, there are some days when I REALLY want a chocolate candy bar. Most of them have way more than half of their calories in fat. But there are a few exceptions.
The lowest-fat chocolate bar I've found is a York Peppermint Patty or Junior Mints.
Next in line is a Three Musketeers bar (not the mint kind).
Then, a little higher in fat than 30%, but way lower than most other candy bars, is Butterfinger. The fat content can be diluted by having it with another fat-free calorie source (like a glass of fat-free milk).
A lot of candy is completely fat free, including most hard candies, Gummi Bears, Swedish Fish, Smarties, Sweet Tarts, and many others.
Now you know how I keep from feeling deprived - and why I don't weigh less.
Life can still be yummy with a few adaptations. :-)
Sunday, May 29, 2011
Friday, May 27, 2011
Comfy, Not Frumpy
Nothing I am wearing is hurting me today!
So far, anyway. The day is young.
That may sound strange to some, though maybe not to you, if you also suffer irritable bowel disease (IBD) symptoms. It is rare for me.
Usually, the waistband hurts me, or I continually adjust my bra to try to find the magical way it should be fitting so that it doesn't hurt. Or my arches are sagging painfully in not-supportive-enough shoes. I rarely wear a watch anymore, since the watch band can intensify wrist pain.
One of my challenges with Crohn's Disease is that the fashion industry expects people to be the same size all day long. So classy comfort is usually an oxymoron. Except when it isn't.
Last night, Dave and I went to the mall just for kicks (I know! Isn't he great!?). I found the most comfortable capris ever on the clearance rack in the Christopher and Banks store! They are snug without being tight. The fabric is a nylon-rayon-spandex blend that looks a lot like a polyester-twill blend. They hug gently through the hips with a gradual curve to the waist, with a wide waistband-yoke combination that shares the tension equally though the waist and hips. So far, they move with me when I stand, walk or sit, without any of my usually ever-present adjusting. The cut is flattering. They don't look frumpy! Even my 22-year-old daughter nodded her fashion approval. If there had been more than one size-8 pair, I would have bought more.
Most slacks that don't bind me too much around the middle require constant tugging to keep them up, unless I wear a stretchy belt (A belt that doesn't stretch is out of the question). Then, the belt can hurt if it's tight enough to work. Pants that are tight enough to stay where they should be cut into my middle. But only when I sit, or when my abdomen swells a bit in the afternoon as it usually does once I've downed a few solid foods during the day. So they'd be OK if I stood all day, kept to liquids, and avoided symptom flare-ups (heh). Smoothies for breakfast usually stave off the expanding gut for a while in the morning. But eventually, a girl's gotta eat!
Several pairs of pants and skirts that I can sometimes wear hang in my closet. Most fit loosely. All have elastic or otherwise stretchy waistbands. They range from size 8 -- a good fit on a good day, as long as it stays a good day -- to size 14 -- for less-optimistic days when I need to allow for the afternoon owies. Unless I'm sticking to liquids for the day (when that works) I can usually expect my tummy to swell a couple of sizes or so by late afternoon or evening. Others slacks in my closet are from maternity stores. These are my go-to gear when I wake up with abdominal pain.
Before I found the pants I bought last night, Dave and I walked into a maternity store to see if they had a good sale on slacks or skirts that would work for me. The clerk took one look at us 50-somethings and asked who we were shopping for. "Just browsing," I answered. I'm used to getting funny looks when I try on maternity clothes. Maternity stores don't realize that they could make a fortune branching out into a comfy clothes line for non-pregnant women.
Unless pants and skirts have lots of give in the waistband, I don't even consider them. Most often, the clothes that look best are the least comfortable, of course. Those that look best spend a lot of time on their hangers. I wear them for a few hours, or on particularly low-symptom days. The rare combination of something stylish that also is pain-free is a thing of beauty!
Bras are a whole other story. If I didn't feel so exposed and sluggish without one, I'd swear them off. Instead, I have many almost-comfortable bras at home. Some of them are OK for a few hours in the morning. But in the early afternoon, once my abdomen starts swelling, I readjust repeatedly to try to quell the pain. On those days, I can't get the torture-device-masquerading-
The Saturday before Mothers Day, Dave took me to Tanger Outlets' Hanes store at Kimball Junction to let me pick out some Mothers-Day-gift clothing. I started with bras. I tried on at least two dozen over about an hour, discarding immediately any that hurt as soon as I put them on, and settling at last on three that I decided to try. So far, my favorite of the three feels good for longer each day than the other two. But it has spontaneously unhooked itself twice. Not a desirable talent in a bra. The other two -- one is too binding on my rib cage, and the other , well, the jury is still out on that one. I also found a classic black shell dress -- no waist band -- and a complementary jacket. A magically comfortable-while-
Except that it takes on a frumpy look without a bra's support beneath it.
On days when I'm not going anywhere, sometimes I wear overalls without a bra and nobody's the wiser (except those of you who now know my secret). Too bad overalls aren't considered to be high-fashion, power clothes appropriate everywhere. Mine don't look hideous. But they're certainly not sophisticated or beautiful.
So I'm always seeking comfortable clothes. Consequently, I have several pieces in my closet that seemed OK at first, then ended up disappointing me. And I'm WAY excited when I find something that works. Feeling yucky, does NOT translate into wanting to look that way. But fashionable clothing that doesn't inflict or exacerbate pain is way more rare than it should be.
And somehow, I don't think I'm the only one with this problem.
What comfortable, non-binding clothes that also look great have you found?
So far, anyway. The day is young.
That may sound strange to some, though maybe not to you, if you also suffer irritable bowel disease (IBD) symptoms. It is rare for me.
Usually, the waistband hurts me, or I continually adjust my bra to try to find the magical way it should be fitting so that it doesn't hurt. Or my arches are sagging painfully in not-supportive-enough shoes. I rarely wear a watch anymore, since the watch band can intensify wrist pain.
One of my challenges with Crohn's Disease is that the fashion industry expects people to be the same size all day long. So classy comfort is usually an oxymoron. Except when it isn't.
Last night, Dave and I went to the mall just for kicks (I know! Isn't he great!?). I found the most comfortable capris ever on the clearance rack in the Christopher and Banks store! They are snug without being tight. The fabric is a nylon-rayon-spandex blend that looks a lot like a polyester-twill blend. They hug gently through the hips with a gradual curve to the waist, with a wide waistband-yoke combination that shares the tension equally though the waist and hips. So far, they move with me when I stand, walk or sit, without any of my usually ever-present adjusting. The cut is flattering. They don't look frumpy! Even my 22-year-old daughter nodded her fashion approval. If there had been more than one size-8 pair, I would have bought more.
Most slacks that don't bind me too much around the middle require constant tugging to keep them up, unless I wear a stretchy belt (A belt that doesn't stretch is out of the question). Then, the belt can hurt if it's tight enough to work. Pants that are tight enough to stay where they should be cut into my middle. But only when I sit, or when my abdomen swells a bit in the afternoon as it usually does once I've downed a few solid foods during the day. So they'd be OK if I stood all day, kept to liquids, and avoided symptom flare-ups (heh). Smoothies for breakfast usually stave off the expanding gut for a while in the morning. But eventually, a girl's gotta eat!
Several pairs of pants and skirts that I can sometimes wear hang in my closet. Most fit loosely. All have elastic or otherwise stretchy waistbands. They range from size 8 -- a good fit on a good day, as long as it stays a good day -- to size 14 -- for less-optimistic days when I need to allow for the afternoon owies. Unless I'm sticking to liquids for the day (when that works) I can usually expect my tummy to swell a couple of sizes or so by late afternoon or evening. Others slacks in my closet are from maternity stores. These are my go-to gear when I wake up with abdominal pain.
Before I found the pants I bought last night, Dave and I walked into a maternity store to see if they had a good sale on slacks or skirts that would work for me. The clerk took one look at us 50-somethings and asked who we were shopping for. "Just browsing," I answered. I'm used to getting funny looks when I try on maternity clothes. Maternity stores don't realize that they could make a fortune branching out into a comfy clothes line for non-pregnant women.
Unless pants and skirts have lots of give in the waistband, I don't even consider them. Most often, the clothes that look best are the least comfortable, of course. Those that look best spend a lot of time on their hangers. I wear them for a few hours, or on particularly low-symptom days. The rare combination of something stylish that also is pain-free is a thing of beauty!
Bras are a whole other story. If I didn't feel so exposed and sluggish without one, I'd swear them off. Instead, I have many almost-comfortable bras at home. Some of them are OK for a few hours in the morning. But in the early afternoon, once my abdomen starts swelling, I readjust repeatedly to try to quell the pain. On those days, I can't get the torture-device-masquerading-
The Saturday before Mothers Day, Dave took me to Tanger Outlets' Hanes store at Kimball Junction to let me pick out some Mothers-Day-gift clothing. I started with bras. I tried on at least two dozen over about an hour, discarding immediately any that hurt as soon as I put them on, and settling at last on three that I decided to try. So far, my favorite of the three feels good for longer each day than the other two. But it has spontaneously unhooked itself twice. Not a desirable talent in a bra. The other two -- one is too binding on my rib cage, and the other , well, the jury is still out on that one. I also found a classic black shell dress -- no waist band -- and a complementary jacket. A magically comfortable-while-
Except that it takes on a frumpy look without a bra's support beneath it.
On days when I'm not going anywhere, sometimes I wear overalls without a bra and nobody's the wiser (except those of you who now know my secret). Too bad overalls aren't considered to be high-fashion, power clothes appropriate everywhere. Mine don't look hideous. But they're certainly not sophisticated or beautiful.
So I'm always seeking comfortable clothes. Consequently, I have several pieces in my closet that seemed OK at first, then ended up disappointing me. And I'm WAY excited when I find something that works. Feeling yucky, does NOT translate into wanting to look that way. But fashionable clothing that doesn't inflict or exacerbate pain is way more rare than it should be.
And somehow, I don't think I'm the only one with this problem.
What comfortable, non-binding clothes that also look great have you found?
Sunday, May 22, 2011
Medications I Take
Just thought that I should list my medications, in case anyone is looking to compare their treatment with others':
Cimzia
Pentasa
Azathioprine
Canasa
B-12
Ondansetron
Lortab
Flector pain patch
Alendronate
Loperamide
Simethicone
Niacin
Multiple Vitamin
Iron
Amytriptilline
Melatonin
Zolpidem
Cimzia
Pentasa
Azathioprine
Canasa
B-12
Ondansetron
Lortab
Flector pain patch
Alendronate
Loperamide
Simethicone
Niacin
Multiple Vitamin
Iron
Amytriptilline
Melatonin
Zolpidem
Too Good to Last
I was a little too smug the past two days. I really did feel good, so I squeezed a lot in, not knowing how long it would last.
Last night, Crohn's made up for lying low for a bit. It returned with a vengeance in the night.
But I am glad it waited until AFTER I finished planting my vegetables, took an outing with my Sweetie, Dave, assembled a new charcoal broiler and had a family cook-out on our spruced-up-for-Mothers-Day deck. All while the rain stayed away. It was great!
Then came last night, with more time in than out of the bathroom between 10 p.m. and 2 a.m. Pain. Diarrhea. Blood. Finally, sleep -- a couple of hours each before and after my 6:30 a.m. Sunday meeting.
Today -- simple smoothies and water to drink only for most of the day. A few more episodes in the bathroom, less bleeding than last night. Wearing a loose-fitting dress for comfort today.
Then, normal food for dinner, which hasn't given me trouble so far. Fingers crossed.
Hopefully, this fatigue, which is certainly profound, abates before I need to start work tomorrow. Going to bed early tonight.
Last night, Crohn's made up for lying low for a bit. It returned with a vengeance in the night.
But I am glad it waited until AFTER I finished planting my vegetables, took an outing with my Sweetie, Dave, assembled a new charcoal broiler and had a family cook-out on our spruced-up-for-Mothers-Day deck. All while the rain stayed away. It was great!
Then came last night, with more time in than out of the bathroom between 10 p.m. and 2 a.m. Pain. Diarrhea. Blood. Finally, sleep -- a couple of hours each before and after my 6:30 a.m. Sunday meeting.
Today -- simple smoothies and water to drink only for most of the day. A few more episodes in the bathroom, less bleeding than last night. Wearing a loose-fitting dress for comfort today.
Then, normal food for dinner, which hasn't given me trouble so far. Fingers crossed.
Hopefully, this fatigue, which is certainly profound, abates before I need to start work tomorrow. Going to bed early tonight.
Saturday, May 21, 2011
So Far So Good
OK, two days after my first dose of Cymzia, the jury is still out, of course. But so far, no terrible two days of extra-profound fatigue and feeling yucky as expected. Hooray!
In fact, I slept quite well both nights, and woke up better rested than usual.
I'm guessing that I was already so tired most days, that any additional fatigue translated into more success sleeping at night. So it's all good as far as immediate side effects go.
As far as relief -- don't know yet. Yesterday wasn't my worst day ever, thank goodness. But there were a few hours of sort of intense pain. It didn't keep me awake, though. And I didn't need a pain pill. This morning, I awoke at around 6:30, even though it's Saturday. I tried to go back to sleep, without much success, so at a little after 7, I got up and finished planting my garden. I think I'd just had enough sleep and was ready to get up.
It's not a feeling I'm used to having in the morning. But I'll take it.
The sun is shining and the day is warm. We're going to eat dinner out on the deck that Megan and Jeff fixed up for me for Mother's Day. It's beautiful!
:-)
In fact, I slept quite well both nights, and woke up better rested than usual.
I'm guessing that I was already so tired most days, that any additional fatigue translated into more success sleeping at night. So it's all good as far as immediate side effects go.
As far as relief -- don't know yet. Yesterday wasn't my worst day ever, thank goodness. But there were a few hours of sort of intense pain. It didn't keep me awake, though. And I didn't need a pain pill. This morning, I awoke at around 6:30, even though it's Saturday. I tried to go back to sleep, without much success, so at a little after 7, I got up and finished planting my garden. I think I'd just had enough sleep and was ready to get up.
It's not a feeling I'm used to having in the morning. But I'll take it.
The sun is shining and the day is warm. We're going to eat dinner out on the deck that Megan and Jeff fixed up for me for Mother's Day. It's beautiful!
:-)
Friday, May 20, 2011
Will Cimzia Work for Me?
So, I'm trying it.
Experts say it could kill me -- double my chance of developing lymphoma. And, it will definitely suppress my immune system, making me more susceptible to infection. They say that choosing it is a matter of deciding that not trying it would, in the end, be worse.
So I've decided to take the plunge.
"Some people go sky diving for fun," Pharmacist Greg patiently explains on the phone. "It is certainly a high-risk activity. I would never do it for fun. But if I were in a plane that was crashing, I would choose to jump with a parachute instead of going down with the plane."
I am a woman, wife, mom, sister, daughter, aunt, future grandmother, neighbor, church volunteer, amateur chef-at-home, nurse, writer, teacher, national conference presenter, auditor, caregiver, mediocre gardener and homemaker, home-spun quilter, traveller, baseball fan, political enthusiast, theater and music fan -- and I have Crohn's Disease.
Yuck. That last one isn't my favorite identity. But in the 12 years since I found out why my gut interferes with so much of my life, it has taken away more and more of my ability to fulfill and enjoy other roles in my life the way I wish I could.
I might as well warn you right now that if potty talk and body-function words offend you, this should stop reading now. I'm not going to mince words or clean up the messes this ridiculously messy problem creates.
A little bit about Crohn's disease -- and my version of it. The Crohn's and Colitis Foundation of America (CCFA) defines Crohn's disease as "a chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon." (http://www.ccfa.org/info/about/crohns)
For me, Crohn's disease means I usually have cramping, painful diarrhea multiple times daily. Sometimes I've been unable to get to the toilet in time. Fatigue is a constant annoyance. Periodically, I develop partial food blockages in my small intestine that hurt worse than my normal diarrhea, but continue to build up pressure and pain instead of being relieved a bit by a trip to the bathroom. Those episodes usually end in extremely hard-to-pass stool, followed by familiar explosive, watery diarrhea. Afterward, my abdominal muscles ache for a couple of days from the exertion, and I am exhausted for a while. Sometimes there's a lot of blood in the toilet when I finish.
I've given up on contact lenses because of the sore dryness in my eyes, and I suffer a lot of sleepless nights from joint pain, and from just plain sleeplessness. Slacks and skirts MUST be loose-fitting, preferably stretchable around the waist, or they bind and hurt more as the day progresses and my gastrointestinal (GI) bloating increases. Panty hose are impossible to wear. And I'm forever seeking clothes that feel comfortable, or at least don't hurt, but also look good instead of frumpy. Hard to find.
And for the past three years or so, worse lately than ever, pain under my right rib cage, feels like someone punched me -- hard. I've been searching for the ever-elusive comfortable bra that won't amplify the pain. The high-abdominal pain seems worse when I eat solid foods, so I drink a lot of smoothies, instant breakfast and pureed soups early in the day, hoping to stave off until night the need to take a Lortab. And I've spent a lot of money to find out that my heart, gall bladder, liver and pancreas are completely healthy and normal, according to test results.
Here are some medications I've already tried: Historically, steroid therapy helped my GI symptoms some, but caused me severe peripheral neuropathy and myopathy. Roughly ten years ago, I used Remicade infusions with some success, but ultimately had to stop because of the cost and resistance from my health insurance company. Over the years, I've taken Mesalamine in the forms of Asacol, Pentasa and Canasa with some relief at times. Simethicone to minimize gas and Loperamide to decrease the diarrhea are musts if I'm leaving the house. Loperamide takes the edge off in the evening if the pain has been too intense all day. Ondansetron decreases the nausea and cramping a little when I get desperate during the day. And sometimes, a little peppermint tea will sooth -- especially when I'm feeling deprived because I would really rather have a hot-fudge sundae.
Yesterday, I took my first dose of Cimzia, a new medication that I hope will help. A home-health nurse came to my home to get me started. The day before, Fedex delivered a huge, styrofoam box containing my first three doses, due two weeks apart before switching to monthly. Bubble wrapped and cold, thanks to two still-frozen ice packs, were three boxes holding two pre-filled syringes each.
Yes, each dose requires TWO subcutaneous injections. The reason?
The fatty tissue just under the skin can only tolerate 1cc of medication at once. And Cimzia is viscous. The first injection in my leg REALLY hurt and created a bumpy bleb under the skin that took a while to smooth out. And it took a long time to inject. The second one, in the more abundant fat of my abdomen, was a little less painful, but still hurt.
I waffled for several weeks about whether to start Cimzia, because of the potential long-term problems the drug could cause. Analyses of Cimzia's clinical trials generally state that lymphoma occurred about twice as frequently in Cimzia's clinical trial subjects when compared to the population at large, though it still occurred in less than 1% of participants.
But there's more to the story.
First, the clinical trial literature doesn't generally specify how long the study lasted. And if Cimzia effectively controls Crohn's disease symptoms, I could be using it for the rest of my life. Or until it causes other problems. Or until a cure or a better treatment is found. Clinical trials don't generally last more than several months or a few years. So long-term effects of the drug are less certain.
Second, I know that young men are usually over-represented in clinical drug trials, since experimenting on child-bearing-age women is a bad idea. I am none of those things -- young, male or of child-bear age. So I wondered how effects of my starting Cimzia at age 50 might differ from study results. So I asked Pharmacist Greg about this, too.
Greg reminded me that the thymus gland, chiefly responsible for immune-system development in young people, atrophies and disappears roughly around age 30. And the clinical study literature did specify that study subjects who contracted lymphoma during the study were younger than that. He said that although nobody knows for sure, susceptibility to lymphoma in response to immunosuppressant drugs like Cymzia might be greater in younger people because of the way it affects an active thymus.
Greg also reminded me of the risks of enduring inflammation that is ineffectively controlled. Over time, accumulation of scar tissue that increase risks of bowel obstruction, continued difficulties with absorbing nutrients, and potential liver damage from drugs I'm now using, have a far greater chance of taking a toll on my health, well-being, and quality and length of life than does Cimzia. He was quick to add, of course, that if I happen to develop lymphoma, the statistics won't matter to me.
I asked how long I'd need to take Cimzia to find out if it will work for me. The literature suggested around two months. So, he said, if it doesn't work, I could simply stop taking it, which would reduce my exposure to it, and hopefully, the risk.
So I decided to chance it.
The story was a little different when Brandie, my home-health nurse came. Having treated several Crohn's patient's with Cimzia, she warned me of a side effect that wasn't in any of the literature. She said that Cimzia usually causes increased fatigue and feeling ill for a couple of days after the injection. And she said that the patients she sees generally haven't experienced effective treatment results from Cimzia for several months. One patient stuck with Cimzia's monthly injections for a year before giving it up without feeling better. But she said most of her patients eventually feel a lot better. They're not cured, but they can carry on normal activities if they are careful about reducing stress, exercising, sleeping enough, and taking their Cimzia on time.
I hope to be one of the success stories. And I hope it doesn't take several months to find out if I will be. So far, yeah, I was tired last night. But instead of being a problem, I slept quite soundly -- through a loud thunder storm that woke up my 22-year-old daughter sleeping across the hall. And I slept an hour longer than planned this morning. Today, I feel maybe a little less fatigue than usual. Probably because I slept well, is my theory.
Anyway, we'll see. I'm hoping for the best. And my plan is to write about it here. Maybe it will help someone.
Experts say it could kill me -- double my chance of developing lymphoma. And, it will definitely suppress my immune system, making me more susceptible to infection. They say that choosing it is a matter of deciding that not trying it would, in the end, be worse.
So I've decided to take the plunge.
"Some people go sky diving for fun," Pharmacist Greg patiently explains on the phone. "It is certainly a high-risk activity. I would never do it for fun. But if I were in a plane that was crashing, I would choose to jump with a parachute instead of going down with the plane."
I am a woman, wife, mom, sister, daughter, aunt, future grandmother, neighbor, church volunteer, amateur chef-at-home, nurse, writer, teacher, national conference presenter, auditor, caregiver, mediocre gardener and homemaker, home-spun quilter, traveller, baseball fan, political enthusiast, theater and music fan -- and I have Crohn's Disease.
Yuck. That last one isn't my favorite identity. But in the 12 years since I found out why my gut interferes with so much of my life, it has taken away more and more of my ability to fulfill and enjoy other roles in my life the way I wish I could.
I might as well warn you right now that if potty talk and body-function words offend you, this should stop reading now. I'm not going to mince words or clean up the messes this ridiculously messy problem creates.
A little bit about Crohn's disease -- and my version of it. The Crohn's and Colitis Foundation of America (CCFA) defines Crohn's disease as "a chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon." (http://www.ccfa.org/info/about/crohns)
For me, Crohn's disease means I usually have cramping, painful diarrhea multiple times daily. Sometimes I've been unable to get to the toilet in time. Fatigue is a constant annoyance. Periodically, I develop partial food blockages in my small intestine that hurt worse than my normal diarrhea, but continue to build up pressure and pain instead of being relieved a bit by a trip to the bathroom. Those episodes usually end in extremely hard-to-pass stool, followed by familiar explosive, watery diarrhea. Afterward, my abdominal muscles ache for a couple of days from the exertion, and I am exhausted for a while. Sometimes there's a lot of blood in the toilet when I finish.
I've given up on contact lenses because of the sore dryness in my eyes, and I suffer a lot of sleepless nights from joint pain, and from just plain sleeplessness. Slacks and skirts MUST be loose-fitting, preferably stretchable around the waist, or they bind and hurt more as the day progresses and my gastrointestinal (GI) bloating increases. Panty hose are impossible to wear. And I'm forever seeking clothes that feel comfortable, or at least don't hurt, but also look good instead of frumpy. Hard to find.
And for the past three years or so, worse lately than ever, pain under my right rib cage, feels like someone punched me -- hard. I've been searching for the ever-elusive comfortable bra that won't amplify the pain. The high-abdominal pain seems worse when I eat solid foods, so I drink a lot of smoothies, instant breakfast and pureed soups early in the day, hoping to stave off until night the need to take a Lortab. And I've spent a lot of money to find out that my heart, gall bladder, liver and pancreas are completely healthy and normal, according to test results.
Here are some medications I've already tried: Historically, steroid therapy helped my GI symptoms some, but caused me severe peripheral neuropathy and myopathy. Roughly ten years ago, I used Remicade infusions with some success, but ultimately had to stop because of the cost and resistance from my health insurance company. Over the years, I've taken Mesalamine in the forms of Asacol, Pentasa and Canasa with some relief at times. Simethicone to minimize gas and Loperamide to decrease the diarrhea are musts if I'm leaving the house. Loperamide takes the edge off in the evening if the pain has been too intense all day. Ondansetron decreases the nausea and cramping a little when I get desperate during the day. And sometimes, a little peppermint tea will sooth -- especially when I'm feeling deprived because I would really rather have a hot-fudge sundae.
Yesterday, I took my first dose of Cimzia, a new medication that I hope will help. A home-health nurse came to my home to get me started. The day before, Fedex delivered a huge, styrofoam box containing my first three doses, due two weeks apart before switching to monthly. Bubble wrapped and cold, thanks to two still-frozen ice packs, were three boxes holding two pre-filled syringes each.
Yes, each dose requires TWO subcutaneous injections. The reason?
The fatty tissue just under the skin can only tolerate 1cc of medication at once. And Cimzia is viscous. The first injection in my leg REALLY hurt and created a bumpy bleb under the skin that took a while to smooth out. And it took a long time to inject. The second one, in the more abundant fat of my abdomen, was a little less painful, but still hurt.
I waffled for several weeks about whether to start Cimzia, because of the potential long-term problems the drug could cause. Analyses of Cimzia's clinical trials generally state that lymphoma occurred about twice as frequently in Cimzia's clinical trial subjects when compared to the population at large, though it still occurred in less than 1% of participants.
But there's more to the story.
First, the clinical trial literature doesn't generally specify how long the study lasted. And if Cimzia effectively controls Crohn's disease symptoms, I could be using it for the rest of my life. Or until it causes other problems. Or until a cure or a better treatment is found. Clinical trials don't generally last more than several months or a few years. So long-term effects of the drug are less certain.
Second, I know that young men are usually over-represented in clinical drug trials, since experimenting on child-bearing-age women is a bad idea. I am none of those things -- young, male or of child-bear age. So I wondered how effects of my starting Cimzia at age 50 might differ from study results. So I asked Pharmacist Greg about this, too.
Greg reminded me that the thymus gland, chiefly responsible for immune-system development in young people, atrophies and disappears roughly around age 30. And the clinical study literature did specify that study subjects who contracted lymphoma during the study were younger than that. He said that although nobody knows for sure, susceptibility to lymphoma in response to immunosuppressant drugs like Cymzia might be greater in younger people because of the way it affects an active thymus.
Greg also reminded me of the risks of enduring inflammation that is ineffectively controlled. Over time, accumulation of scar tissue that increase risks of bowel obstruction, continued difficulties with absorbing nutrients, and potential liver damage from drugs I'm now using, have a far greater chance of taking a toll on my health, well-being, and quality and length of life than does Cimzia. He was quick to add, of course, that if I happen to develop lymphoma, the statistics won't matter to me.
I asked how long I'd need to take Cimzia to find out if it will work for me. The literature suggested around two months. So, he said, if it doesn't work, I could simply stop taking it, which would reduce my exposure to it, and hopefully, the risk.
So I decided to chance it.
The story was a little different when Brandie, my home-health nurse came. Having treated several Crohn's patient's with Cimzia, she warned me of a side effect that wasn't in any of the literature. She said that Cimzia usually causes increased fatigue and feeling ill for a couple of days after the injection. And she said that the patients she sees generally haven't experienced effective treatment results from Cimzia for several months. One patient stuck with Cimzia's monthly injections for a year before giving it up without feeling better. But she said most of her patients eventually feel a lot better. They're not cured, but they can carry on normal activities if they are careful about reducing stress, exercising, sleeping enough, and taking their Cimzia on time.
I hope to be one of the success stories. And I hope it doesn't take several months to find out if I will be. So far, yeah, I was tired last night. But instead of being a problem, I slept quite soundly -- through a loud thunder storm that woke up my 22-year-old daughter sleeping across the hall. And I slept an hour longer than planned this morning. Today, I feel maybe a little less fatigue than usual. Probably because I slept well, is my theory.
Anyway, we'll see. I'm hoping for the best. And my plan is to write about it here. Maybe it will help someone.
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