Crohn’s Disease.

Crohn’s Disease.

I was home from uni on summer holidays in December 1994 when the results came back. The reason I was always so tired, had constant stomach cramps and diarhoea was given a name. Crohn’s Disease. I was 19.

There were many drugs, temporary treatments of the symptoms, no cure. I took mesalamine an anti inflammatory drug. I took Prednisolone a steroid based drug. I took azathioprine an immuno-suppresant drug. I rattled.

I couldn’t go out in the sun because one of the drugs made me light sensitive. I had to take osteoporosis drugs because the steroids leeched the calcium from my bones. My brain fizzed constantly for the 50mg+ per day of steroids, I had trouble focusing on one task from beginning to end. I got told I would never have children because of the combination of drugs I needed to take to keep my bowels from exploding. I took anti-depressants because I just couldn’t cope. I rattled some more.

I’d get infections because I was immuno-suppressed. I’d have to stop taking my Crohns drugs to give my body a chance to fight the other infections. My body would fight off the infection then the Crohn’s having seen a chance would spiral out of control. I lived on vegemite toast and tea. They were ’safe’ foods, they didn’t cause me to explode or curl up in a fetal position for hours of stomach cramping pain.

I had surgery for Crohns disease related problems. I checked myself at every shower for fissures and abscesses. I didn’t want to have a stoma. I just wanted to be normal.

My life was mostly normal, I met a wonderful man, we got married, we were happy together. There was is a waiting period of 3 years before you can commence adoption procedures, we had to prove that we were a stable family for a baby. So we got married in December 2000 and we got on with our lives. Fastfoward to 2002, we were sharing a house with SIL L and her two pre-teens. Perhaps we don’t really want children after all we decided, having a little first hand experience had put us off. We fostered a Customs Puppy, we invested in fancy home entertainment systems.

Then one day I enrolled in a drug trial for a combination of HIV treatments which it was thought may treat Crohn’s disease. I was told I had to do a pregnancy test, a legal requirement, never mind that I wasn’t able to conceive. They didn’t want the slightest chance of a in utero baby being effected by those drugs. Blood was taken and sent off to the lab. I was sent home with a diary to record my Crohn’s symptoms to see if I qualified as severe enough to participate in the drug trial.

My diary…. I threw up every morning till about 1pm. Odd. My Crohn’s had never shown itself that way before. But I dutifully recorded it in my diary. Odd smells or motions also made me run to the toilet, not with diarrhea but vomiting. The I received a phone call from the drug trail people. Come in asap, we have some abnormal results. I got my period that night.

Hubby took the day off work, I was scared, so was he, although I didn’t know that at the time. Leukemia? Cancer? What was so serious and worrying. While we waited for the doctor to arrive I threw up again and again and again. Sucks to be me, vomiting, diarrhea and my period all at once.

Doctor arrives and is gravely concerned.

You. Are. Pregnant.

I’m sitting there alone, my husband outside the door waiting because he wasn’t allowed in.

But I have my period? How can this be?

We are rushed off to ultrasound. There is a peanut shape fluttering on the screen, that is my baby’s heart beating, she is 6 weeks old. I cried. I hadn’t wanted a baby. It was a miracle but I had my feet set on another life, one that didn’t involve children.

There was still the bleeding. We waited to see what would happen, as the days passed I grew to love that baby growing inside me, I didn’t want her to give up and she didn’t. We had many scares, the bleeding continued for the entire first trimester.

I was still sick, I was still taking many drugs. We had been assured they were safe, they were not causing the bleeding, our baby was okay.

I continued to work. My last day at work 30th of April, 36 weeks pregnant and ready for it to all be over. I was looking forward to a month at home. We had nothing ready apart from a very basic hospital bag incase of emergencies. My baby shower was that weekend, I was getting much of what I needed then. I remember that farewell lunch, I ordered cajun fish, it was delicious.

May 1st, I wake, the bed is wet. Oh crap I pee’d my pants. Or is it something else? I’m not sure. Our day continues as planned. We take our customs puppy back to Melbourne Airport to the Customs training facility there, he is going for a week of intensive training. We stop at McDonalds for breakfast. The liquid continues to slowly leak. Perhaps I should call the Ob&Gyn? I call. He is stern. Come to the hospital ASAP.

We are at the hospital. It appears the baby is arriving a month early. C-section is scheduled for that afternoon. Bad me for eating breakfast or I would have been in surgery then and there. We are dismissed to go shopping for baby essentials. Be sure not to eat. Be sure to return to have your baby.

We go, we shop. A lady in Target asks when the baby is due. This evening I say with a grin of delight. I go home and post at my fav. message board that the baby is on its way.

Then there is a blur of activity. And cramps, dear god the cramps. The epidural was a nightmare of missed hits because I could not control my body spasms during the cramps.

Annie is born, beautiful, amazing, wonderful. I see her for a minute or less. She is taken away. My husband, now a father, leaves to care for his daughter. I lie in my hospital bed, the pain is excruciating, I am sobbing, the morphine pump is not working. 4 nurses, no pain relief. 24 hours pass. Finally I can see my daughter again. No breastfeeding, I am told. The drugs, the immuno suppressants. You can not breast feed. I don’t mind, my baby is beautiful and amazing. I love watching her and her daddy together.

3 months later. My daughter practically lives at her Omi’s home or with one or the other of her Aunts. I am in and out of hospital. My temperature hovers at around 40C most days. There is blood in my urine and my feces. I am sick. Finally surgery, they cut out a section of my bowel in a procedure called a small bowel resection. I had a perforation. I was leaking feces to places it should never be leaked.

Months of recovery follow. I’ve had two major surgeries within the space of 3 months. Family are amazing. My friend S who had never dealt with children before let alone an infant became babysitter and chief photographer.

Then the recovery process was complete. My iron levels built up to normal and stayed there. I stopped taking the drugs and nothing happened, I didn’t need them. I got pregnant again! I had another beautiful, amazing, wonderful baby girl.

I’m waiting, waiting for the beast that lives in my belly to rear its ugly head again. Every time my stomach cramps, everytime the diarrhea explodes, everytime I see the bright red blood that is from my bowel not my period, I hold my breath, I wait, I pray for a few more years of not rattling. Years of feeling strong and full of energy, being able to focus on my children, focus on anything at all that I wish to focus on. Being able to go out in the sun and not get covered in white spots 15 minutes later. I want to live life, I want to enjoy life, I don’t want to let one aspect of me control my life.

And I look at Heidi and I wonder, is this how she will feel one day about her diagnosis?