Coping | Information | Ostomy
Being a mom is a powerful thing, and ever since I was a little girl, my dream was to have children. A career was never as important to me as being a mom. I have always said I would like three children. I dreamed about what these children would look like, their personalities, and the bond I would share with them. It was the only thing I wanted, but several road blocks stood in my way.
I am a woman with Crohn’s Disease. In December 2013 my OBGYN found that I had hydrosalpinx in my fallopian tubes. I had no idea what this was – GI is my world, not GYN. I have been taught that knowledge is power, so I quickly did an internet search to find out what ‘hydrosalpinx’ meant. As I read through the search results, my heart sank. The short paragraph told me the fallopian tubes were filled with fluid, and the paragraph ended by giving me heartbreaking news: blocked tubes cause infertility. I was devastated and I didn’t know what I would have to face to conceive a child. My health was a huge struggle that I fought to overcome… would my fertility be another fight?
I was diagnosed with Crohn’s Disease at 14 years old. My whole life became doctor’s appointments, diagnostic testing, medications, and managing the effects of this disease. Right before my 25th birthday, I tried a clinical trial in desperation that something would help me. Unfortunately, my disease became significantly worse. I could no longer stay stable, had four hospitalizations within three months, and was fighting for my life. At the time I obviously did not recognize the severity of my condition and even though it was the sickest I had ever been, I wasn’t ready to consider other options.
My mom who was the only one to get through to me and accept that ostomy surgery was an option for me. She woke me up one morning and told me all the research she had conducted on living with an ileostomy.I began to research with her, saw all the products, read blogs of people talking about how much an ostomy improved their life, and was impressed at the all of the cute lifestyle products that were available. I got excited! I called my GI’s office and asked to make me an appointment with the colorectal surgeon I had met in the hospital. I couldn’t wait to speak with my surgeon- because I couldn’t wait to have my life back!
In November I celebrated the loss of my heavily diseased colon, and the gift of my healthy pink stoma named Mona. I felt instantly better and I embraced life as an ostomate. For the first time, I could live my life freely and not live according to the disease. I learned quickly that Coloplast products wouldn’t show under my clothes and gave me the most comfortable fit. I was happier and healthier than I had ever been.
I had one more surgery to remove my rectum where there was still disease. At 26 years old I started thinking about wanting to start a family with my partner. We weren’t serious enough to start trying, but it was something we both wanted sooner rather than later. I started hearing and reading about the struggles women with IBD and ostomies or j-pouches were having getting pregnant. These struggles were mostly due to damaged fertility from so many abdominal surgeries. When I found out that I had hydrosalpinx (fluid in the fallopian tubes)and what that meant, I was worried that after my long battle for health, I would now face a long road of fertility issues.
At my February Girls With Guts support group meeting I finally shared with my friends that I had been told I had hydrosalpinx, and likely would have issues with fertility. This was the first time I said it out loud. I finally felt like I could face this diagnosis. Speaking openly about my struggles gave me the courage to accept that I would likely have a hard time getting pregnant. But then something happened… that same day.
My period was also a day late and on the way home from work, on a whim, I pulled into the drugstore and picked up a pregnancy test. It was a long shot, but it didn’t hurt to take one. The words “surprise” and “disbelief” don’t even come close to describing the feelings I felt when the test came back positive.
It wasn’t until our first doctors appointment in March when we saw this little nugget on a monitor – with a heartbeat! – that I believed my dreams of becoming a mother were finally coming true. I feel humbled, blessed, and beyond fortunate to be carrying this sweet baby. At one time, this was a distant dream, and one I was unsure could actually come true.
Finding the right OBGYN for my pregnancy was important to me. I have been fortunate to have doctors that are knowledgeable with both Crohn’s and ostomies. At 20 weeks pregnant, I began having monthly ultrasounds to monitor growth of the baby to make sure he is unaffected by me having an ostomy and absorbing what he needs. Every month I see my beautiful healthy son, growing and striving in my less-than-perfect body. It is incredible to me that my body, at one time, was a Crohn’s battlefield. Then, I lost my horribly diseased colon and ended up with an ostomy that gave me life and, in turn, I was able to give and nurture the life of another in my body.
The first eight months of my pregnancy were untouched by any health issues. After so many years of living with Crohn’s Disease, it’s hard to ever feel like the disease isn’t lurking in the background waiting to strike. However, I have tried to breathe a sigh of relief and enjoy a relatively easy and normal pregnancy. I dodged any morning sickness, and because I have an ostomy I have never had the discomfort of constipation that plagues most some pregnant women. Isn’t that a nice little bonus?
At 34 weeks pregnant I am now in the throes of my 3rd trimester and gearing up to meet our son. I have found that my Coloplast ostomy products have worked wonderfully with my expanding belly- and some of the challenges that come with being a pregnant woman with an ostomy. Some pregnant ostomates can easily get a bowel obstruction or blockage due to the intestines moving to the front of the abdomen around the uterus- and this happened to me. One day I began having terrible, gripping pain that came in waves. Had I not been familiar with intestinal pain, I would have thought I was having contractions. My stoma got swollen and my output was significantly reduced. I took my usual Coloplast SenSura ostomy appliance off, and my stoma was so swollen there was no way I could even cut another one of my normal wafers large enough to fit. I switched to the Assura system a flange large enough to fit around my stoma. I feel comfortable and secure knowing that the different product options available through Coloplast made it so much more simple to find the right fit for my stoma and its changing size.. I spent a few days in the hospital due to the blockage but never had to worry about my ostomy appliance. The short-term change to the Coloplast Assura gave me a wafer that could fit around my stoma and a see through bag allowed my doctors to monitor my output without changing my appliance Now I am back using my trusted SenSura appliance! Recently, I packed my hospital bag and packed the new Sensura Mio appliance from Coloplast for after giving birth. One of the great features of the Mio is the wafer is ultra-flexible- a necessity for the post-birth abdomen. I am so grateful to have ostomy supplies from a company like Coloplast that offers such a wide variety of products that fit all of the needs I may have as an ostomy patient.
As for my pregnancy. I feel very lucky that I was able to get pregnant. I know that there are many women who live with this disease and experience fertility issues. For the next 5 weeks I hope to enjoy the remainder of my pregnancy without any more bowel issues. After spending more than 12 years with Crohn’s Disease, I no longer take health for granted. I relish in feeling all of the sweet little kicks and movements. I am thankful every day for the life growing and thriving inside of me. I am grateful for my own health, allowing me to get pregnant and to stay in good health throughout this pregnancy. The resiliency of the human body is incredible.
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