~OYC Trailblazers~ Brandi’s Journey into Motherhood with a Redone J-Pouch

By Brandi Fliegel

I was 22 years old when I went to the emergency room for the first time. I had extreme stomach pain and couldn’t stop going to the bathroom. They told me I had a stomach virus and sent me home with some Imodium. Then the bleeding started.

I went to a different hospital and after further testing, they diagnosed me with ulcerative colitis. I didn’t really understand the disease at the time. I just knew I had to take medications to combat inflammation in the gut everyday.

Then the flare-ups began and I would end up back in the hospital. I would go on steroids and then taper off steroids. I would feel okay for a little while and then the cycle would begin again. Soon the 5-ASA medications stopped working altogether and we tried different combinations of antibiotics and then finally immunosuppressants. 

OPTING FOR SURGERY

I was 30 years old when I finally gave in to starting immunosuppressants.  This was eight years after my initial diagnosis. I had been hesitant for a long time because of the potential side effects. By the time I began the injections, it was too late. My large intestine was too ulcerated. The doctor said if we didn’t remove my colon right away, it would perforate and cause sepsis.

In a series of three surgeries, I had my large intestine removed, an ostomy created and a j-shaped pouch fashioned from my small intestine. Finally, my ostomy was reversed and my j-pouch was connected to a small portion of my rectum for me to defecate normally.

But I still never felt good. I had the dreaded butt burn and I still went to the bathroom, a lot. I developed pouchitis and then cuffitis on the little piece of rectum that was left. I was still taking antibiotics and/or steroids and I was taking painkillers daily to deal with the pain. It was no way to live.

Eventually, I went to see a j-pouch specialist and he said the pouch had mechanical problems and recommended I go through the three surgeries again to have my pouch revised. But I was getting married soon and that was not how I wanted my marriage to begin. So I said no thanks and continued to live with the pain and all the medications.

And then I developed a fistula. The doctors said this no longer looked like ulcerative colitis and was presenting like Crohn’s disease. Either I was misdiagnosed or the disease had changed. To this day, it is classified as indeterminate colitis.

So two years after I got married, at the age of 35, I had the first of three more surgeries, including getting my second ostomy, so they could revise the pouch. After the second of these surgeries, I became extremely depressed for several months. It was hard enough to have three surgeries and to have to go through that process again to recreate a j-pouch felt like a nightmare. To combat depression, I began to take antidepressants and started going to support groups, which is where I met Tina.

In my last surgery, the j-pouch was reconnected and the mucosal lining of my remaining rectum was stripped with the hope that my immune system would stop attacking it. I currently take a newer biologic to help me stay in remission. I still go to the bathroom pretty often and that causes a lot of skin irritation, but the pain is a lot less and my overall quality of life has improved.

JOURNEYING INTO MOTHERHOOD

In between my first and second set of surgeries, my husband and I tried to get pregnant. It didn’t work and then I got sick again. A few months after my last surgery, we decided to see a fertility doctor. I was excited, nervous and fearful all at once. What if I couldn’t get pregnant? What if I could and I was really sick my whole pregnancy? What if I were to pass my disease on to my child? What if I have a baby and then I’m too sick to take care of him? All of these thoughts and fears swirled in my mind but I pushed forward with the support of my family.

To help with conception, we underwent in-vitro fertilization (IVF). We did two rounds of retrieval and were lucky enough to get pregnant with the first embryo that was transferred. I did acupuncture leading up to my second round of retrieval and up to when I got pregnant. I felt that acupuncture helped with my pregnancy. During the first round of retrieval, the doctor was only able to retrieve three eggs; after acupuncture and an increase in the dose of medications, the doctor retrieved ten eggs and voila, the transfer worked!

Although my pregnancy was treated as high-risk, I did not have any complications. My iron was low so I received several infusions. My biggest problem was the pain that comes with going to the bathroom so much and not being able to take any medication stronger than Imodium to slow things down during my pregnancy. I continued my biological medication infusions up until 8 weeks before my scheduled C-section. My gastroenterologist and high-risk obstetrician said it was safe and that it was more important that the mom stay healthy for the baby to be healthy.

MOTHERHOOD & BEYOND

Every day I look at my son, and I can’t believe he’s here! I feel truly blessed to be his mom. I think back on the journey and it feels like it was now forever ago.

I look back and remember when I was told I would be infertile after having my colectomy and j-pouch surgeries. I thought that meant I could never have kids, which can be devastating for many women of childbearing age. When I met my current gastroenterologist, he told me I had the same chance of getting pregnant through IVF as someone who didn’t have my disease and hadn’t undergone all of these surgeries.

To that end, I’d like to share with you all: Don’t let anyone tell you what you can’t do. Seek a second or third opinion. The body is an amazing vessel. I had so many doubts that my body, that has felt so broken and incapable at times, could nourish and deliver such a healthy and beautiful baby boy. But it did. It wasn’t easy, physically or emotionally, but it was so worth it! Wesley is now 3 months old and I couldn’t be a happier mama!

So, own your Crohn’s, own your j-pouch, and if you want to consider pregnancy and conception, get a team of doctors on board to help guide you through the process. **For more information on family planning with IBD, please refer to the IBD Parenthood Project, an American Gastroenterological Association (AGA) initiative: http://www.ibdparenthoodproject.gastro.org/**

HERE’S TO WISHING BRANDI, LEN & BABY WESLEY A HEALTHY & BEAUTIFUL LIFE TOGETHER. HAPPY FIRST MOTHER’S DAY, BRANDI!!!

~~LOVE, LIGHT & PEACE ALWAYS~~

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