Thursday, October 15, 2009

Hope & helplessness

I haven't enjoyed pregnancy.
I said it.

Don't get me wrong - I haven't been averse to the changes in my body and self perception.
That part has been somewhat wondorous.
Every morning I muse at the feminine curve of my growing belly. I feel strong and blessed. Feeling my little miracle hiccup and kick in response to my voice has been the most amazing experience of my quarter-century life. Daily, I am mesmerised and delighted by the development of my familiar stranger. I still can't quite fathom how 'normal' it is that I have another human being growing, living, sustained inside of me.

Before falling pregnant, my body and I were a good team. I tried my best to take care of it and in return it allowed me to live at the high-energy pace that had become part of my personality.
When I realised I was pregnant, I was elated and became even more committed to nourishing my body as best I could. Good nutrition is of course an intergral part of optimal foetal development. My baby had to have a running start. And of course, all the pregnancy guides advocate the benefits of exercise during pregnancy.

Eight weeks into pregnancy, my body, which I thought I knew so well, turned on me. Severe bloody diahorrea and excruciating abdominal cramps left me exhausted and confused. My pregnancy had brought to surface the dormant fault that lay embedded within me. I was diagnosed with an auto-immune disease that I had never before heard of, Ulcerative Colitis.
My body was attacking itself....

It's ironic that the time in my life that I'm supposed to be serene and feel joyous is now shadowed by the dread of this disease.
It's strange to have this love-hate relationship with my belly - it both nurtures my baby but lends a home to this sickness as well.

Time is measured in increments of weeks during pregnancy. After a painful colonoscopy, I was finally diagnosed at 20 weeks pregnant. It's been almost 8 weeks - 2 months - since then and I am still trying to come to terms with it. I tell those around me that I'm positive and hopeful; that I'm coping. I try to remain strong and feel good for the sake of my baby. But there are some days and nights when the pain leaves me depleted and despairing.
Angry denial - "this shouldn't be happening to me!".
Hope is replaced by helplessness.

I've always been organised and independent. Every challenge in my life has been bravely approached with a plan and a positive attitude. I have always told myself that I can achieve anything if I want it badly enough. My initial approach to this illness has been no different. I set out with a plan: a medication schedule and strict eating plan (gluten-free) tailored by a homeopath; a positive outlook; and lots of prayer.
Some days I feel as though I'm improving. But my diligent note-taking in a diary disputes my feelings. It brings me back to the cold hard facts.

I know of a friend of a friend who had the same condition which went into full remission after pregnancy. This gave me encouragement in the beginning. Recently though, I am afraid to hope too much. Afraid that denial of this disease will lead to disappointment. So, I vacillate between blind optimism (a life-long trait of mine) and mild depression (not usally a trait of mine).

I don't talk much about any of this - not even to those who are closest to me.

Most friends/relatives have never heard of UC - in fact only one friend actually knew about it and that's because she's a recently qualified doctor. Their reaction is to either downplay it's seriousness or to offer well-intentioned yet completely ignorant advice. I since decided to be selective of who I shared the knowledge of my UC.
Those closer to me like my husband and my parents are very supportive. But I tend to avoid sharing too much with them - i'ts painful to watch someone you love suffer when you know you cannot help them.

It's difficult to not let the illness and the pregnancy become inextricably linked in my mind.
Now that I'm properly showing, almost everyone I meet excitedly asks me how the pregnancy is going. I really have no idea to answer this question. After all, I have no idea what pregnacy is like without this illness.

The doctors have assured me that the illness has not affected the baby in any way - for this I thank God every day. But it's still difficult to differentiate which feelings and physical symptoms are due to the illness and which are related to pregnancy. I am at the tail end of my 2nd trimester yet I never experienced the "honeymoon period" of pregnancy that other woman wax lyrical about.

I do have good days - or more specifically, good periods within a day. It's seldom as black and white as a 'good day' or a 'bad day'. Despite the darkness, I still experience happiness and excitement and all the good emotions. I laugh, I chatter, I cook, I go out. I seem completely normal and unchanged in social situations. I have become adept at hiding my symptoms when I am outside my home. Those around me would never guess at my daily suffering.
I prefer it that way - I'm not ready for them to see me differently or even worse, to pity me.
Only those closest to me - my husband especially - are spectators to the unpredictable nature of this illness. One minute I am the picture of perfect health; the next I am on the opposite end of the spectrum.

I don't want to be defined by UC. As a result, I haven't as yet altered my self-perception to accomodate it. I realise that I'm probably still in denial. But there's a large part of me that is petrified that if I do make UC part of my self-identity, that it will then truly become a fixed part of my life. That that scary word "chronic" will become a reality.


  1. well...firstly ..congratulations on your pregnancy and secondly..I seriously ddn't enjoy being pregnant (both times) and that was before I got UC! Don't beat yourself up on that count...we're all different...some people love being pregnant and some people hate it...I couldn't wait for it to be over and I didn't have any major sicknesses during the whole time.

    Don't give up on the hope that you'll go back to normal later...who's to say you won't :D

    Yep, UC is scary especially when you have spent the last 4 out of 6hrs running back and forth to the bathroom in pain and I honestly can't imagine what it would be like also to be pregnant! There a couple of girls who blog and have went through hopefully they'll get in contact with you. It's amazing how helpful (and seriously funny) some of these blogs are. We're all in the same boat (for now)and each of us are very differnt in how are UC works, but we're all trying different things including 'alternative' medicines with vary degrees of success.

    You take care and hang in there...and for the time being..welcome to the weird world of Ulcerative Colitis

  2. Hi,
    Just found your blog via Paula (above) It's good you have decided to write about this. I have one daughter who is now three-and-a-half, I had UC before I got pregnant and I had it all the way through my pregnancy. I was on high doses of steroids (80mg) from around 20 weeks. It was hard to find anybody going through the same thing so your story will be a real help to others.
    Ali x

  3. You are being bombarded by UC bloggers. I'm sorry that you are dealing w/this. I had UC before I was pregnant. It is definetly a hard thing to grab a hold of. I had the same mind set as you when I was first diagnosed 9 yrs ago. Just know that we are here on your side. The UC bloggers have helped me so much emotionally. Please feel free to ask any questions.

  4. Thanks to you all for the positive comments - both about my blog and about dealing with this disease. This has undoubtedly been the most difficult experience of my life. But I hope that through avenues such as this I can find a way to deal with my new reality.
    Please keep the comments coming through.
    All the best to you all.

  5. Hi SA girl! I had UC when I was pregnant with my son (he's two now). A bit different experience though because I also had it before I was pregnant. I didn't have any morning sickness so I was glad to just have the UC. I know it can be incredibly difficult though. For me the worst part came after the baby was born. When my body was recovering from giving birth and I had the new demands and exhaustion that come with a new baby on top of the UC symptoms. So make sure you have plenty of help available. That being said, if having UC were the price you had to pay to have a child I can guarantee that you will consider it a blessing. Having a child changes your life...for the better. You may have more challenges than most because of your UC but you will be able to survive and you will have the most precious gift to remind you why it is worth it--your chld.