Karen’s Story

Life Can Still be Amazing With a Stoma

Looking back over the last 17 years of my life, with all its ups and downs, one thing for sure is that my ostomy is what has kept me alive.

I was diagnosed with Crohn’s Disease when I was 13 years old. My mother and I had gotten a stomach virus and were both bedridden for weeks. My mother progressively got better but I continuously got worse. For 6 weeks I saw doctors trying to get answers and get me well again but for a lovely older general practitioner suggesting I may have Crohn’s and referred me to a gastroenterologist. I had no idea what was going on, I just wanted to feel better.

After my gastroscopy, I woke up to a pack of Tim Tams and a raspberry soda from my mother, it was exactly what I needed after fasting all evening the night before and all day that day. A few days later I was in my specialist’s room listening to him say I had Crohn’s Disease. I watched my mother in shock, asking if kids were on the cards one day and what my life would be like from here on. My specialist told me I would have a stoma one day; that my rectum was in bad shape. I let it go through one ear and out the other. All I could think was give me the medication to stop the pain and make it go away.

I was placed on many medications, missed a lot of school and was always found lying on the couch watching television. I was on high doses of steroids so I had “moon face” and had put on a lot of weight. At 15 years old I was fed up and asked for surgery to have an ileostomy. I had one year and one month with a mucus fistula so medication could be injected through the rectum to try fight the disease.

Having an ostomy in high school for that year was the hardest experience of my life. I didn’t feel comfortable for a long time. I was always worried it would leak or make noise whilst in class. A friend of mine told some “popular” girls of my stoma, as she wanted to be in their group and when they found out taunted they me and threatened to hurt me. It never happened, thank goodness, but definitely made me more determined to be comfortable with myself. Looking back they just didn’t understand and acted immature, which you would expect from 15 year olds, but at that stage in my life it was hard.

After my resection, I was well for a while but my Crohn’s slowly made its way back. I left school in year 11 and did my VCE through home study. When I was well I worked at Toys ‘R’ Us… a job that really made me smile, being surrounded by toys all day was a hoot.

Between 16 and 20 years old I got two bowel obstructions, incisional hernia and a batholin cyst. Little issues that were due to Crohn’s. In my early 20s I would go clubbing and drink a lot. Thinking if I did these things will numb the pain I was feeling physically and emotionally. My Crohn’s was taking over my life with the pain it was causing. My specialist would say that I wasn’t living, only existing.

In August 2008, my son Phoenix was born. When I was pregnant I had a lot of issues with my Crohn’s and a rectal stricture that was dilated every month. The pressure of my growing baby also caused my rectal-vaginal fistula to expand and cause pain.

Phoenix was a very good baby who had his own issues being born with a floppy larynx. During his feeds I’d have to run to the toilet, he got so used to it that he just watched me run and never cried from stopping his feed or making him wait. When he was 6 months old I knew that it was time for my inevitable ileostomy. I was not going to let my son see me sick anymore. My son got my head out of the clouds to realize an ostomy was a good thing and not to feel negative about having one.

When Phoenix was 2 and a half, I met my fiancé Kris. I was so scared to tell him about my stoma for the fear he wouldn’t like me. I blurted it all out over a web chat, to which he said he didn’t care because he liked me for me. I was so relieved to hear he was alright with it, and he is always telling me he loves me for me and that my stoma is a part of me.

In November 2011, I had my second son, Chester. I had a whole new experience with my pregnancy, as had my stoma; unlike my pregnancy with Phoenix. Everything went smoothly until 30 weeks when Chester was putting pressure on my rectal-vaginal fistula and a rectal sinus that made its way through after I had my permanent ileostomy. My stoma got slightly larger during pregnancy and was a little hard to change my bag as my belly grew but I got used to it. Clothing was just larger underwear and maternity clothing. I had a c-section at 38 weeks and all went well. After my surgery my stoma swelled to a tremendous size. It completely scared me as I didn’t know this would happen and was consistently in contact with Helen and Lilian from YOU for help and support whilst I went through my pregnancy with a stoma and post-pregnancy stoma. The swelling went down after a few days and it was a normal part of post-pregnancy stoma. Weeks after the birth, my stoma went back to its pre-pregnancy size quite well.

Through all my years of having Crohn’s Disease, being a teenager to an adult and now a mum, I can say that my stoma was the best decision I ever made for my children and for me. I am now in remission and I live a healthy life with my family. Now my aim is to help others with Crohn’s Disease and a stoma, as life can still be amazing with a stoma and good support around you makes everything even better.

The above was presented at the Panel Discussion as part of Y.O.U. Inc's "Let YOU Be Heard" Day (October 2012)

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