Jes’s Story: Pregnant with an Ostomy

Jes’ Story: Pregnant with an Ostomy
June 21, 2012- It’s a boy! My husband’s eyes welling up with tears and I can’t help but bawl my eyes out as the ultrasound technician grins widely at us. I, we, can’t believe it and can’t believe this is happening. Rewind…

September 2007 – You have Crohn’s Disease! My husband’s eyes welling up with tears and I can’t help but bawl my eyes out as my 2^nd opinion GI doctor discusses the severity of my disease. So many questions, so many thoughts, so many emotions…But finally, an answer more like an explanation as to what has happened to my frail body. Rewind…

November 2006 – It’s a girl! My husband’s eyes welling with up tears and I can’t help but bawl my eyes out as the OB doctor delivers my sweet baby girl. I, we, can’t believe it, BUT….it’s way too early she’s only 32 weeks…

Three life changing events cause the three same reactions; however, with different emotions behind them. Yes, I delivered my daughter 8 weeks early, but she only had a 12 day NICU stay. She was a fighter and struggled to keep her lungs going and today she’s a happy almost 6 year old!

My story begins at age 26 and I am pregnant with my first child. Everything is going great. All of sudden, at 9 weeks pregnant, I started have major abdominal pains, diarrhea, bloody stools and MAJOR hemorrhoids. I consulted with my OB and we chalked it up to be pregnancy-related symptoms. I altered my diet as much as I could, stayed away from “trigger foods” and even tried various prenatal supplements. I manage to get through the rest of my pregnancy, although quite miserable. Two weeks after giving birth to my daughter, I noticed rapid weight loss and constant diarrhea. By 4 weeks post-partum, I dropped 32 pounds and was below my pre-pregnancy weight. By 6 weeks post-partum, I landed in the hospital and was fighting for my life. I had C-diff. It that had taken over my body and “potential for Crohn’s diagnosis” based on an emergency colonoscopy. It took another 8 months to be diagnosed. Finally, someone labeled me: Indeterminate Crohn’s Colitis. I hate labels, but I was thankful for this one. It gave me some closure. Over the next 3 years, I had many hospitalizations, colonoscopies, endoscopies, flare-ups, allergic reactions to medications, and other illness including mononucleosis, pneumonia, CMV and C-diff. All which almost killed me because I was too stubborn to go the hospital. Just another flare or “I’ll get through this.”

Finally, in August of 2010, after utilizing 5 expert GI doctors/IBD specialists in Massachusetts, my husband and I made the hard decision, to pack up our family and move to North Carolina to find “the best of the best.” My new GI IBD specialist made a few more medication attempts to try and get my disease under control, but to no avail. I was left with two options: One was Tysabri,which at the time, did not have the blood test available to see if I carried the gene that causes a brain virus with use of this specific drug. Second, have surgery..ileostomy.

No brainer for me at this point, surgery. Heck, why would Tysabri work for me? Thirteen different medications and combinations didn’t work, why would this one? Surgery? What you want to remove my large intestine? I spent hours on end one night, researching “ileostomy.” What is it? Types of ostomies? Can I have children? Will I stay in remission? I learned to Never Ever google stoma images! YIKES!

Yep, I made my decision after meeting my surgeon, doing research, pondering my new life…all in one night. My family, on the other hand, thought I should go get a second opinion. My husband’s eyes well up with tears and I can’t help but bawl my eyes out. There’s this emotional response, again. Yes, this is what I want to do, this is what I need to do. I don’t know if it’s the right decision, but I don’t have many options and heck, I don’t want a brain virus that could kill me! Within one month of meeting with the GI surgeon, I was scheduled for an ileostomy. However, I was still left with many questions. He could not determine, based on my scopes, if I needed a permanent or temporary. He had to make that decision once he “opened” me up. I also attended my first ostomy support group meeting 2 weeks prior to my surgery….Fast Forward.

April 18, 2011- My husband’s eyes well up with tears and I can’t help but bawl my eyes out. There it is again. My husband and I share one last hug, one last kiss, and then I head off into surgery, scared and alone. My surgery lasted 8 hours and my hospitalization lasted 22 days. So not what I, we, expected. The minute I woke up groggy and knew instantly…I whisper to my mom “It’s permanent, isn’t it?” Her eyes fill with tears and she nods. Fast Forward…

February 14, 2012 – 10 months post-op. Valentine’s Day. 10 months remission, no medications and no Crohn’s symptoms. My husband’s eyes well up with tears and I can’t help but bawl my eyes out. We make the final decision that we want to have another child. Boy, it did not come without much debate. Will my Crohn’s flare? Will it move into my small intestines? What about my stoma (aka Uma)? Is this the right decision? Should we take the risk? My husband’s exact words: “I don’t know. I can’t have you that sick again” My rationale: “My Crohn’s can flare at any time. The doctor’s always say healthy mom = healthy baby. Pregnancy doesn’t necessarily cause a flare. I am the healthiest I’ve been in 5 years.” My husband: “Do you want to throw that all away? We still need more information.” Now, this isn’t the first time, we’ve had the same discussion. So, after consulting my GI surgeon and GI IBD specialist again, we got the green light! I was jumping for joy, my husband a nervous wreck! All the what-ifs, the unknowns, the risk? Are we making the right decision? Fast forward…

March 24, 2012 – Yep, I’m pregnant! We took a second test 2 days later to be sure…Yep, definitely pregnant! Oh dear, oh my…what have we done? I am nervous as heck. All the what-ifs, the unknowns, the risks all come racing into my mind! Deep breaths, my husband calms me. We are going to get through this. Fast forward…

August 8, 2012 – I am 23.2 weeks pregnant! No complications and no Crohn’s symptoms, just weight gain. Things are progressing as they should. Baby boy is even a week ahead of size schedule. What a different experience than my first pregnancy when I had no idea I had IBD! I was miserable 6 years ago and wished away my pregnancy. Today, I smile, live life and still manage to go to the gym 3-4 times per week. I am still taking Step Class, Zumba and Total-Body Conditioning. I listen to my body and haven’t let my ostomy stop me. I do have an OB that is familiar with ostomies and we have discussed at length the potential complications that could arise as my abdomen grows larger.

One benefit, baby boy has much more room to grow..I am only 5’1,” weighed roughly 112 pounds when I got pregnant and I’m short waisted! And yes, I will have to have a vaginal delivery. That was one of my first questions, C-section, right? No! My OB would like to minimize scar tissue since I may someday need surgery again…another unknown! Some of the risks I’ve been forewarned about are: 1) baby-growth (obviously not an issue) 2) blockage (This can happen in any pregnancy! I am very diligent (NOW) about staying away from the no-no foods and I chew VERY well!) 3) Stoma could get pinched in the last month (Well, I’m not quite there yet, but is resolved by inserting a small drainage tube to keep it open) 4) Stoma widening or prolapsing (to date, mine has only widened 1/8 to ¼ inch and has not prolapsed at all).

There it is ladies. Yes, if you have an ostomy, you can have children. Should you be nervous and fearful? Will you question the decision if you decide to try? Will your family be very worried and want to push it off as a final decision ‘just a little longer’? Will you even question it when you finally see the ‘pregnant’ line show up on the pregnancy test? Of course you will, just like I did. And that is okay. IBD has affected all of our lives, none of us knowing why us. But, like a bully, all of us must stand up against this disease to live and enjoy our lives. And from all the research and conversations I have had, pregnancy with an ostomy can be as beautiful and special as any non-ostomy pregnancy…especially when your baby kicks your stoma…ouchie…definitely a new one for me.

I look forward to my husband’s eyes welling up with tears and my bawling when our miracle is born and we get to have a nice ‘win’ against IBD.