Note: I won't be continuing the "I want to be Called Mommy" series until after I can see my doctor, which will be in a couple weeks. I have very specific questions that I want to make sure are answered correctly. If you have any experience with IBD and pregnancy and parenthood, please contact me. Thank you all for reading and supporting my blog!
IBD and emotional problems go hand in hand. I lost friends, my health, money, being able to be active, any bit of positive body image I had, and the freedom to eat whatever I want. I gained fear of going out in public, a panic disorder, horrible hospital experiences, the joy of having a boss who humiliates you constantly for your disease, and so many emotional (besides my physical) scars.
Specifically, I have been diagnosed with major depressive disorder, a panic disorder (this no longer applies to me- I only had it for a short while during a particularly horrific hospital stay) and social anxiety. I was diagnosed with with these mental illnesses long before I began bleeding, but having IBD didn't help much.
If you have IBD, your hair might fall out. It is embarrassing to see people who have no filter lean in close to you, and comment loudly, "WOW! You're really losing a lot of hair". Every. Time. You. See. Them. I started wearing caps and beanies to hide my thinning hair. I recently just cut my hair and styled it to make it look thicker, because while some patches of hair have grown back, my bangs, which used to need to be thinned, are now so sparse that my scalp shows clearly through my bangs. During my last flare, I'd wake up to a hairy pillow, and no matter how carefully I combed my hair, the teeth would come out matted with my locks.
Then there is the weight loss and gain. In a flare, you lose weight because your body isn't absorbing nutrients or water. Your doctors throw you on an evil round of steroids, and for most people, you suddenly gain a lot of weight. People who need steroids joke that they need three wardrobes- one for their regular weight, one for their flare weight, and one for their steroid weight. They may kid, but they also speak the truth. I am lucky I don't gain a ton of weight, but I do get extremely swollen feet and elephant ankles when I'm on steroids. It's unsightly and painful.
Speaking of steroids, my mood swings so badly when I'm on them that I can no longer take prednisone (a steroid commonly used to treat IBD flares). Within twelve hours of taking the medication, I begin to swing between extremely depressed, furious, and anxious. I begin cleaning like a maniac, unable to settle myself. I take melatonin first thing in the morning to calm my body. But within only a couple doses, I become very suicidal. My first thoughts in the morning are ways I can end my life. I cry myself to sleep, knowing that inside somewhere, underneath the drugs, I don't want to die, but all I see are images of me overdosing or tying a noose. When I'm not angsty and more suicidal than I've ever been, I feel like I'm on top of the world, like I'm Superman. I feel like I can do anything. I once dumped my partner because I was furious at him for no reason, other than the drugs getting to my head. Thankfully, he took me back. My GI no longer allows me to be on prednisone because of my severe mood swings and suicidal thoughts.
You get pimples every now and then? Ha. Wait til the deeply inflammed cysts start sprouting up all over your face and body when you take steroids. You will combat those cysts every way you know how. You will spend so much time in the mirror, trying to cover your pepperoni face, but it won't matter. Your face will be red, tender, and covered with infected lumps. People will comment, and unless you start wearing a mask, there is no way to hide your shame.
Have you ever had a bad fast food experience? You ate way too much greasy, spicy food, and suddenly, you need to use the toilet. You're cramped on the fast food throne, and it burns. Now imagine that feeling while you're at work, when you're in bed, trying to sleep, when your partner is trying to be romantic with you and kiss you. Imagine feeling like that all the time, but multiply the pain and slushy gut feeling times ten. Pretend for a second that that is your normal, that you have to go into work feeling like that every day, because you've been denied government help, and you need a way to pay your bills. Have you ever had an accident at home or in public? Imagine this is also normal. I once had a job interview for a beauty store during a flare. I was so ill and fidgety I didn't get the job. I spent the thirty minute interview jiggling my leg, holding my breath, and focusing on not crapping myself in the middle of a mall food court during an interview. Just try and imagine having to do that, and knowing that you probably won't get the job.
I bet you probably wouldn't want to go out, huh? You probably would stay at home, hiding from the world like we IBDers sometimes do. We are prisoners in our own bodies. When we try to go out, even just to go to the pharmacy or buy some groceries, we are denied bathroom access, and have to endure the humiliation of strangers commenting on the horrible smells and sounds coming from our stall.
You're going to need surgery sometime or another. Can you cope with an ostomy bag? I'll be honest, although I'm a little ashamed to admit it: I used to think having an ostomy bag was disgusting. I do think it's a normal reaction to have, but not a healthy one to keep, as this will be the bag that saves your life. How about the scars from IVs gone wrong and PICC lines? My arms are littered with scars from bad IVs and a PICC line. I'm proud of my scars, because I consider them beautiful reminder of strength, but would you? Our society values perfect skin, and the scars you will inherit from surgery and needles are not "perfect".
Imagine people constantly commenting on how pale, ill, thin, fat, pimply, bloated, etc you look. Imagine hearing it constantly, even when you've gone out of your way to look normal and healthy. It's hard for me to constantly hear people telling me they wish they were as thin as I am, when I know that if I were to flare again and lose the 20-35 pounds I lose in a typical flare, I will this time be very underweight. I hate when people tell me they want to lose ten pounds and look like me, because I would love to have their ten pounds for insurance.
Does it surprise you that people with IBD suffer anxiety and depression? My surgeon once told me that in the hundreds of people with IBD he's performed surgery on, he had yet to meet one who did not suffer depression and anxiety.
If someone you know has a chronic illness and loses or gains weight, has severe mood swings, has thinning hair, looks ill, or whatever... just keep your unkind thoughts to yourself. If you don't have anything nice to say, say nothing at all. I already know that my body is not the most beautiful thing to look at or hear about. When you see a stranger who has an imperfect body, don't be so quick to judge. You never know what that overweight, pimply-faced, panicked-looking person is going through. We appreciate your kind thoughts and words.
Monday, January 28, 2013
Monday, January 21, 2013
I Want to Be Called "Mommy": Thoughts on Having Children
Can I have children knowing I could pass my disease on to them?
Yes.
Why?
Because every child is a blessing. It doesn't matter if the child is a boy or a girl. If the child has light, dark, or caramel skin. If the child has one arm or three arms. If the child is autistic, schizophrenic, depressed, prone to anger, or is a happy child. A child is a child, and that child deserves just as much love and affection as little Henry down the street.
I've seen comments made that people with chronic illnesses should not have children, that the risk of passing on the genes for disease is selfish. I've also seen comments saying that a chronically ill person who has children is selfish in being a parent, knowing there will be days they are too weak to get out of bed.
These people sadden me. Life is a roll of the dice, a shot in the dark, a game of Russian roulette. Neither one of my parents has IBD. No one in my family has IBD. I do. As for the not being there for your children, plenty of people start out as wonderful, loving parents, but then drop out of their child's life.
It doesn't matter if a person is sick or healthy. That is not what makes a good parent. A good parent is someone who loves their child unconditionally, helps them grow, and gives them the lessons needed to have a healthy life. There will be days when I am too ill to do much more than tell my child that they need to fix their own sandwich today, and use the TV as their baby sitter. Guess what? Even if I didn't have this disease, there will have been those days anyway, when I come down with a virus and am too ill to do anything, but that does not make me a bad parent.
There is a chance that my child could be autistic, have a drug or alcohol problem, be abused, contract HIV, or lose a leg. Everyone has a story of hurt. My child's could be IBD, but it could also be anything else. In her book IBD Self-Management, Dr. Sunanda Kane sheds some light on the likelihood that my disease would be passed on: because my partner does not have IBD, there is only a 3-7% chance that my child will also have IBD. If my partner had IBD, that number would jump to 50%, but I don't plan on marrying anyone else. Who I have is a perfectly good catch, and even if he had IBD, I'd never throw him back just because the risk climbs. Our children will be blessing, no matter what they go through, what they are born with, or the choices they make.
However, there will have to be a certain amount of planning when I do decide to have children. While life is a card game of luck, I have to play my hands carefully as I am able. I would be irresponsible to try to get pregnant when my IBD is two steps ahead of me and progressing. I have to plan carefully. I believe in playing smart, even though life is a wild, unpredictable ruthless thing that no one can predict. I will do everything I can to make sure that my baby is healthy and happy, and that means starting life with as healthy a pregnancy as possible. I may not be a mother yet, but I am already fiercely devoted to making sure my children are brought into this world by a healthy and loving parents.
If my child has IBD, I will grieve for their health, but I will also give them a happy childhood, complete with snowforts, the Beatles, and octopus hotdogs. I will pray late at night that they have their disease remains in remission for years, that their disease never is as severe as mine; but I'll also pray that life is kind to them, whether they are sick or not. My child may or may not have IBD. My child may or may not have any number of illnesses or sad stories, but I will give them them more love and affection than they know what to do with, and never regret that I gave them life. My husband and I will be the parents who gave that little boy or girl what they needed to rise above whatever life deals them.
Check back next Sunday/Monday for part three.
Yes.
Why?
Because every child is a blessing. It doesn't matter if the child is a boy or a girl. If the child has light, dark, or caramel skin. If the child has one arm or three arms. If the child is autistic, schizophrenic, depressed, prone to anger, or is a happy child. A child is a child, and that child deserves just as much love and affection as little Henry down the street.
I've seen comments made that people with chronic illnesses should not have children, that the risk of passing on the genes for disease is selfish. I've also seen comments saying that a chronically ill person who has children is selfish in being a parent, knowing there will be days they are too weak to get out of bed.
These people sadden me. Life is a roll of the dice, a shot in the dark, a game of Russian roulette. Neither one of my parents has IBD. No one in my family has IBD. I do. As for the not being there for your children, plenty of people start out as wonderful, loving parents, but then drop out of their child's life.
It doesn't matter if a person is sick or healthy. That is not what makes a good parent. A good parent is someone who loves their child unconditionally, helps them grow, and gives them the lessons needed to have a healthy life. There will be days when I am too ill to do much more than tell my child that they need to fix their own sandwich today, and use the TV as their baby sitter. Guess what? Even if I didn't have this disease, there will have been those days anyway, when I come down with a virus and am too ill to do anything, but that does not make me a bad parent.
There is a chance that my child could be autistic, have a drug or alcohol problem, be abused, contract HIV, or lose a leg. Everyone has a story of hurt. My child's could be IBD, but it could also be anything else. In her book IBD Self-Management, Dr. Sunanda Kane sheds some light on the likelihood that my disease would be passed on: because my partner does not have IBD, there is only a 3-7% chance that my child will also have IBD. If my partner had IBD, that number would jump to 50%, but I don't plan on marrying anyone else. Who I have is a perfectly good catch, and even if he had IBD, I'd never throw him back just because the risk climbs. Our children will be blessing, no matter what they go through, what they are born with, or the choices they make.
However, there will have to be a certain amount of planning when I do decide to have children. While life is a card game of luck, I have to play my hands carefully as I am able. I would be irresponsible to try to get pregnant when my IBD is two steps ahead of me and progressing. I have to plan carefully. I believe in playing smart, even though life is a wild, unpredictable ruthless thing that no one can predict. I will do everything I can to make sure that my baby is healthy and happy, and that means starting life with as healthy a pregnancy as possible. I may not be a mother yet, but I am already fiercely devoted to making sure my children are brought into this world by a healthy and loving parents.
If my child has IBD, I will grieve for their health, but I will also give them a happy childhood, complete with snowforts, the Beatles, and octopus hotdogs. I will pray late at night that they have their disease remains in remission for years, that their disease never is as severe as mine; but I'll also pray that life is kind to them, whether they are sick or not. My child may or may not have IBD. My child may or may not have any number of illnesses or sad stories, but I will give them them more love and affection than they know what to do with, and never regret that I gave them life. My husband and I will be the parents who gave that little boy or girl what they needed to rise above whatever life deals them.
Check back next Sunday/Monday for part three.
Sunday, January 13, 2013
I Want to Be Called "Mommy": Intro
Being called "mommy" will be the best words that could ever fall on my ears. Motherhood is something to look forward to- tiny hands, the small patter of feet on the floor, seeing your child grow into beautiful young people... and of course, puke all over freshly washed outfits, sleepless nights, and temper tantrums. Motherhood is the dream.
I want children more than anything. Their names,what they will look like, and each imaginary child's personality has been decided. Ask me about any one of my imaginary children sometime, and I will tell you which eats ketchup with everything, which will be athletic, and which will never surprise me, because she is so eccentric. Will my real children be anything like this? I hope not; I want God to bless me with something even better than I conjure up in my daydreams.
From what I know, the risk for infertility is relatively small in IBD. I realize that I will more than likely have the three beautiful children I dream of, but I still worry. What if the lack of nourishment in my IBD doesn't allow pregnancy? What if my tubes get snipped on accident when I have my colon removed, or my ovaries scar from years of inflammation in my gut? Because of my health, there are stretches of months of not even getting a period- how difficult will that make becoming pregnant? Is freezing my eggs and asking someone to be a surrogate mother, in case of infertility, an option? What if my pregnancies are nine months of hell or I flare? How will I explain to my children that I am ill? Will they resent me for the days I am not able to get out of bed and be a mother? If I pass my disease to them, will they hate me?
These aren't exactly questions I want to be thinking about. I'd much rather daydream about my hot date, what I'm going to do with the degree I don't have, or that super cute dress I saw at H&M. So in order to educate myself, I will be spending the next several weeks blogging about different topics related to IBD and fertility, and sort out my muddled thoughts on a very sensitive issue for me. Please feel free to direct me to resources, or share your story with me- learning more about my dream role is important to me, and I want to be well-equipped with answers. I was told upon my diagnosis, which was over a year ago, that I'd want to have children within the next ten years, because there could be problems with my j-pouch or ostomy (which I don't have yet), cancer (which I hope I never have), or with the severity of the flares I get. I don't know how much this applies to me now since I've been doing so well (this could change), but that's why I have a doctor- for answering my questions.
Check back next Sunday for part two.
I want children more than anything. Their names,what they will look like, and each imaginary child's personality has been decided. Ask me about any one of my imaginary children sometime, and I will tell you which eats ketchup with everything, which will be athletic, and which will never surprise me, because she is so eccentric. Will my real children be anything like this? I hope not; I want God to bless me with something even better than I conjure up in my daydreams.
From what I know, the risk for infertility is relatively small in IBD. I realize that I will more than likely have the three beautiful children I dream of, but I still worry. What if the lack of nourishment in my IBD doesn't allow pregnancy? What if my tubes get snipped on accident when I have my colon removed, or my ovaries scar from years of inflammation in my gut? Because of my health, there are stretches of months of not even getting a period- how difficult will that make becoming pregnant? Is freezing my eggs and asking someone to be a surrogate mother, in case of infertility, an option? What if my pregnancies are nine months of hell or I flare? How will I explain to my children that I am ill? Will they resent me for the days I am not able to get out of bed and be a mother? If I pass my disease to them, will they hate me?
These aren't exactly questions I want to be thinking about. I'd much rather daydream about my hot date, what I'm going to do with the degree I don't have, or that super cute dress I saw at H&M. So in order to educate myself, I will be spending the next several weeks blogging about different topics related to IBD and fertility, and sort out my muddled thoughts on a very sensitive issue for me. Please feel free to direct me to resources, or share your story with me- learning more about my dream role is important to me, and I want to be well-equipped with answers. I was told upon my diagnosis, which was over a year ago, that I'd want to have children within the next ten years, because there could be problems with my j-pouch or ostomy (which I don't have yet), cancer (which I hope I never have), or with the severity of the flares I get. I don't know how much this applies to me now since I've been doing so well (this could change), but that's why I have a doctor- for answering my questions.
Check back next Sunday for part two.
Wednesday, January 2, 2013
Someone Get Me a Bucket
I have awesome, awesome news. I do not have a flare, my MRI results showed no inflammation and only stricturing in my transverse colon, and my blood results were normal. However, the stool tests showed that I have c diff.
Lucky, lucky me. While I'm extremely disgusted as to how I got the bug (it's spread mostly through poor hand-washing, so I ingested someone else's feces-yum) at least I know my GI clinic will take good care of me. In fact, they called me twice in one hour to give me strict instructions to wash my own hands well so I don't pass on the icky critter, strictly forbade me from using any antibiotics for six months unless I absolutely must, and I am, under no circumstances, allowed to drink alcohol while taking the medication, called metronidazol, to kill c diff. I also must take a probiotic and it was recommended I eat yogurt to help replenish my starved "good bacteria".
Wait... no alcohol!? How am I supposed to party now? Actually, lucky for me, my twenty-first birthday isn't for a couple months, and I've never really drank or partied to begin with. I called my GI and asked what would happen if I drank alcohol while taking the medication. Answer? I'd experience severe nausea, vomiting, my skin would turn red, and my heart beat would quicken. From the sounds of it, I'd get trashed really fast, because the side effects already include nausea and vomiting. That sounds fun. I was asked if no drinking would be a problem for me, and while it wouldn't be now, if this just happened to land over my birthday, I think I'd be honest and say I was going to wait until the day after my party to start the treatment. I wonder how many young adults have had to have that conversation or argument with their GI over drinking while taking c diff-killing medicine.
Not that I need to drink to feel super nauseated. Metronidazol is almost as bad as c diff itself. I am so, so nauseated. I can barely sleep, and my stomach churns whether I eat food, don't eat food, lie down, stand up... it's awful. It's that horrible queasy feeling you get when you know you're going to throw up in an hour or so, but my body just won't throw up. I would love to throw up. If I threw up, maybe the queasy feeling would go away. My mouth tastes strongly of metal. My guts haven't settled down yet, so my intestines still hurt on top of it all. I feel really, really sick. I can't wait for in a week or so, when the treatment is done and the c diff is killed. I have lost my appetite completely and have barely eaten or had anything to drink in the last 72 hours. I have to force myself to eat and drink. Everything is tinged with metal and tastes horrific.
In spite of how horrid I feel at the moment, I'm actually thrilled with the news. Once I get finish my round of treatment, I should feel leaps and bounds better. If only my IBD were this easy to treat! For now, I think I'm going to go take a shower and hit my bed. Being nauseated all the time is exhausting.
Lucky, lucky me. While I'm extremely disgusted as to how I got the bug (it's spread mostly through poor hand-washing, so I ingested someone else's feces-yum) at least I know my GI clinic will take good care of me. In fact, they called me twice in one hour to give me strict instructions to wash my own hands well so I don't pass on the icky critter, strictly forbade me from using any antibiotics for six months unless I absolutely must, and I am, under no circumstances, allowed to drink alcohol while taking the medication, called metronidazol, to kill c diff. I also must take a probiotic and it was recommended I eat yogurt to help replenish my starved "good bacteria".
Wait... no alcohol!? How am I supposed to party now? Actually, lucky for me, my twenty-first birthday isn't for a couple months, and I've never really drank or partied to begin with. I called my GI and asked what would happen if I drank alcohol while taking the medication. Answer? I'd experience severe nausea, vomiting, my skin would turn red, and my heart beat would quicken. From the sounds of it, I'd get trashed really fast, because the side effects already include nausea and vomiting. That sounds fun. I was asked if no drinking would be a problem for me, and while it wouldn't be now, if this just happened to land over my birthday, I think I'd be honest and say I was going to wait until the day after my party to start the treatment. I wonder how many young adults have had to have that conversation or argument with their GI over drinking while taking c diff-killing medicine.
Not that I need to drink to feel super nauseated. Metronidazol is almost as bad as c diff itself. I am so, so nauseated. I can barely sleep, and my stomach churns whether I eat food, don't eat food, lie down, stand up... it's awful. It's that horrible queasy feeling you get when you know you're going to throw up in an hour or so, but my body just won't throw up. I would love to throw up. If I threw up, maybe the queasy feeling would go away. My mouth tastes strongly of metal. My guts haven't settled down yet, so my intestines still hurt on top of it all. I feel really, really sick. I can't wait for in a week or so, when the treatment is done and the c diff is killed. I have lost my appetite completely and have barely eaten or had anything to drink in the last 72 hours. I have to force myself to eat and drink. Everything is tinged with metal and tastes horrific.
In spite of how horrid I feel at the moment, I'm actually thrilled with the news. Once I get finish my round of treatment, I should feel leaps and bounds better. If only my IBD were this easy to treat! For now, I think I'm going to go take a shower and hit my bed. Being nauseated all the time is exhausting.
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