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IBD, Ileostomy, And Now Infertility Will Be Part Of My Story

I always knew that this could happen. I was emotionally prepared.

Life has been busy. I married my best friend Matt last October and we bought a new house in April, but lately our emotions have been running high. This is my infertility story, and I want to share it not for pity but for the awareness. I have always been a huge advocate for ostomates and those with IBD, and now infertility will be a part of my journey…

To start I’ll have to take you back a few years ago. At age 23, I was diagnosed with ulcerative colitis. This was a hard period for me because I was sick all the time and I was struggling to find the right career path. Fast forward to age 27, when I was rushed to the emergency surgery in October, 2014 because part of my colon perforated. I woke up in the ICU with an ileostomy and spent three days there before being moved to the post-surgical floor where I would spend another month healing and gaining my strength back.

Matt and I had only been dating for six months. He spent every day and every night with me at the hospital, he was my rock. When I finally went home, we knew it would take a long time for me to fully heal and be back to my old self. We also recognized that ostomy surgery was major and could affect my body long term. Several months later I was informed that reversing my ileostomy was not an option, I could choose to have a J-pouch (internal pouch) or a permanent ileostomy. After looking at both options, I learned that either procedure could lead to infertility. I choose to have a permanent ileostomy, and it was the best decision I’ve ever made because it gave me back my life!

About eight months after healing from my 2nd surgery (August, 2016) I received the all clear from the doctor to start trying for a baby. Months before Matt and I were married we stopped using contraceptives because we thought what better time to start trying but over our honeymoon in December while visiting Iceland.

In February, I had a very weird pain on my left lower abdomen. With my history, I don't wait around anymore to see what’s going to happen. I went to see my obstetrician, as I know most of the GI pains and this was not one of them. They did an ultrasound and found free flowing fluid in my abdomen, and since this could be a possible sign of cancer, I was sent to a gynecologic oncologist. At this point my fears turned into isolation from my support system.

In April, the specialist would do another ultrasound, a cat-scan and full blood work in order to clearly understand what was going on inside my body. Thankfully I was cancer-free, and the diagnoses was that the scar tissue from my past surgeries was creating pockets and holding fluid. This fluid would normally absorb back into my body, but instead the oncologist would have to drain the fluid for me. She also suggested that if Matt and I wanted to have a baby we would need to see a fertility specialist. She noticed something unusual, but would not go into detail as infertility was not her specialty.

A few months later I walked into a place I never thought I would ever be—the fertility clinic. Matt and I sat in an office across from a doctor who told us that my surgeries shouldn't be affecting me, but if there was something wrong we had so many options. He escorted us back to have yet another ultrasound, and then it happened… the moment I will never forget. Dr. W said, "Oh, I see what Dr. H saw, it makes sense now... see this section of fluid...". He would then go into a long explanation as to how these pockets were around and in between my ovaries and uterus, this would likely mean that my fallopian tubes had some type of scar tissue connecting or surrounding them. The only way to know definitively would be to have another surgery, however none of my doctors wanted this option because this could mean more scar tissue. Dr. W felt that In vitro fertilization (IVF) was our only hope to improve the chances of giving birth.

Matt and I always knew that this could happen, we were emotionally prepared. We knew going into this that if IVF might not take due to my medical history. I never became pregnant and with the amount of scar tissue, there are too many unknowns. IVF was not the right fit for us. We had talked about adoption long before my permanent ileostomy surgery, and how this would be a great way to start our family. So here we are now, on another incredible adventure to find baby Nesbitt.

Photo credit: © Kingdom Come Photography

Photo credit: © Kingdom Come Photography

Feature image photographed by Play On Light Photography

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