I Want to Be Called Mommy: A Visit to my GI

When I was first diagnosed, I remember being told that I had ten years to have children, because I would have to have my colon removed within that time, and my ovaries or tubes might become scarred from inflammation or surgery. I freaked out. I was nineteen when I was diagnosed, and that meant I had to give birth to my three dream children by the time I'd be twenty-nine. Factor in settling down, getting a decent job, and being emotionally stable enough to raise my own children, I had, oh, maybe a couple years to have babies.

I don't remember who told me this or how I heard it. I only remember being very high (dilaudid does that to you) and suddenly crashing at the news. That ruined the most fun I'd had all year.

Lately, I've been doing well. I've gotten my periods back after two years of inconsistent light cycles, or no cycles at all for six to nine month stretches at a time (and no, I've never been pregnant; this is common when your body is messed up). I can run four miles, barely, but  I can do it as long as my arthritis is under control. I can tolerate lettuce as long as I don't have it more than twice or so a week, and my neighbors no longer complain to the landlord when I have bean burritos for supper. My c-diff was effectively killed after two rounds of medications, and my doctor stood by amazed that medications work so well with my body. I feel like the Supergirl of IBD. All I need now is a cape with an image of a colon on the back.

Since I'm doing so well, I wondered if the sordid infertility information was still true, and if it ever was in the first place. During my last visit to my GI, I brought a list of questions. I knew an OB would be able to answer a lot of general questions about fertility, but in my experience  unless I speak with a gastoenterologist, no doctor really seems to know what inflammatory bowel disease is and how whatever topic I'm discussing fit with IBD. I generally know more about GI issues than any doctor I've met, except the gastroenterologists I've seen.

I love my GI. He's an older guy, super sharp, actually listens to me, looks up answers to questions he doesn't know, isn't your typical doctor-with-a-god-complex, and has given me the gentlest colonoscopies I've ever had. (If you don't have regular colonoscopies, you won't understand this!)

I brought up my concerns about needing to have children in nine years. He looked startled, and told me that was not at all true. He told me that in eight years after diagnosis, my risk for colon cancer increases, and I will need a colonoscopy every year as a preventative measure. Not even a problem, since I tend to flare twice a year and get flex sigs (kinda like a mini-colonoscopy) and colonoscopys at least 2-3 times a year. He also added that because IBD patients have so many colonoscopies, colon cancer is hardly even an issue- since we IBDers are so heavily monitored for cancerous polyps, cancer gets nipped in the bud. On the same note, I am so uncomfortable with the cancer risks that my Humira poses, he reassured me that my chances of getting t-cell lymphoma from Humira is about one in ten thousand, and of the sixty doctors in his practice, not a single one has had a case of cancer complications from Humira. (That just increased my odds!) I immediately felt better hearing this- if my risks for cancer from Humira is so low, I would be less likely to assume it will be harmful for my future children.

I am on both Humira and azathioprine for remission maintenance  and both drugs have warning labels recommending to not take the medication if your are pregnant. My GI seemed to have some strong opinions about this one, and mentioned  he's had problems with OB/GYNs in the past. OBs hate letting their patients use Humira or azathioprine while pregnant, as they believe it will pose a risk to the mother or baby. However, my doctor was very clear that going off the medications actually does more harm than good, as shown in recent studies. When I looked this up, I saw that going off these medications as a pregnant IBD patient could cause miscarriage. When the mother goes off these medications, she may flare, and in flaring, lose her baby. Miscarriage, IBD-related or not, is not just fatal for the child, but can also kill the mother.

"Humira and azothioprine are like one plus one equals three," my doctor said. I need both medications to function well. If I was taking only one or the other, my quality of life would not be good, and would make getting pregnant difficult. But with these two specific medications to suppress the immune system, my IBD can be very well managed. I want my pregnancies to be as low risk and uneventful as I can, and as long as my medications won't harm my baby, I'm OK with taking them. My ultimate goal would be to be medication-free, but since I would need surgery if I went that route, and surgery makes fertility a little more difficult, I guess I'll just have to play the hand I've been dealt.

Discussing genetics,  I asked how likely I'd be to pass on my disease. His answer  Thirty percent. However, in Dr. Sunanda Kane's book "IBD Self-Management", she states that the rate is five percent for children with only one parent with IBD, and the number jumps to thirty percent if both parents have IBD. In my family, we have a strong history of GI disorders. Multiple relatives have IBS, one has Celiac's, one nearly died of toxic megacolon, a couple have acid reflux, one has severe stomach ulcers, and my grandmother died of stomach cancer when she was in her fifties.  Given the genetics in my own family, I'm surprised no one else has been diagnosed with inflammatory bowel disease. This may be the reason I was given the thirty percent answer  but I really wish I had been awake enough to think of that. (Damn you, 7:30 AM doctor appointments ) Oh well, there is always next time.

I then asked if I would be more likely to pass on ulcerative colitis than Crohn's. Stumped, he declared that was a good question; it probably wouldn't matter, but I'd be slightly more likely to pass on ulcerative colitis. Seeing as how ulcerative colitis is the lesser of two diseases, I was pleased as punch. I'd hate to watch my child suffer and know exactly what they are going through. I would rather not know, and just remain empathetic and caring for my baby. If my child would end up with inflammatory bowel disease, symptoms
could start at any point in his or her life- including infancy. This breaks my heart. It is one thing to see the brave young men and women proudly showing their ostomy bags. It is an entirely other thing to see a small child, no more than ten years old, lift their shirt and say "I have an ostomy". The ostomy itself does not bother me. It's the knowing the pain, confusion, and humiliation that such a small, innocent person had to endure to get there. If my infant was sick, I think I'd hurt more, because they will never know a life free of pain, hospital visits, and stigma.

Even though I am not trying to become pregnant, nor will be for several years, I am already a fiercely devoted mother. I need to make sure my children are well taken care of. I need to make sure that I'm financially stable, that my health is under control, and that I am well aware of any and all added risks IBD would create for my pregnancies. When my child is born, I will be the mother who panics over every upset tummy because my first thought will be "please God, spare my child from my disease".

This is my final installment in my "I Want to be Called Mommy" series. I feels tons better about the possibility of having children, and I no longer feel as rushed. I know I will always have questions- I'm an inquisitive soul- but for now, I think I know enough.