30 Years of Living with IBD & Still Goin'

I’m new to this site and this is my first intro to sharing my life of IBD with strangers.

When did IBD symptoms begin?

My 1st issue was in 1990 when I was 6 months pregnant with my youngest son. He was my 2nd child and this pregnancy was nothing like my 1st.

I had a great first pregnancy and loved every minute of being with child - easy 9 months, easy labor (3 1/2 hours total), no postpartum, gained only 12 pounds - left the hospital in regular clothes - no morning sickness.

How can pregnancy impact IBD?

So 6 yrs later when my husband and I found out we were pregnant again - I couldn’t wait for the whole experience again. Wow, what a complete reversal. Within weeks I was miserable. Cramping, diarrhea one day, constipated the next, nauseous, no appetite - I looked like death warmed over.

My doctor told me don’t worry each pregnancy is different. But the issues only increased, diarrhea became daily, no appetite, bloody stools, horrible cramps.

The doctor performed multiple ultrasounds, labs, and on and on. He still stuck to “it’s just a rough pregnancy this time" - but I knew something was off.

At 5 months I started losing weight, was anemic, and checkups every 2 weeks. The doctor was still not concerned. My husband finally stepped in and insisted I be seen by a gastroenterologist.

I was immediately set up for a proctology exam - then a flex scope.

I was told - and this is no exaggeration - “It’s a form of ulcerative colitis directly related to the pregnancy and after the birth of my child it would dissipate. I should be just fine." True story.

How has IBD treatment impacted my life?

I was put on Sulfa drugs and ended up staying on them for over 2 years.

I finally went into a remission of sorts - for over 8 years only periodic issues. Then at 40 years old - all hell broke loose.

I’m now 62-years-old. I was finally diagnosed with ulcerative colitis in 2011.

I had been prescribed 11 different oral medications within less than 2 years - nothing worked. I had lost over 45 lbs. Lost my full-time job. Lost my apartment (divorced in 2000 - my husband tried to understand it but thought my illness was my own fault and that I caused it - hence the divorce).

Lost my creditworthiness, my self-esteem, my sense of being a woman, you name it - and at the time health insurance was not mandatory and I lost it due to losing my job. I couldn’t afford the premiums and of course, the pre-existing illness made it very easy for the insurance companies to say no.

I was pretty much writing the rest of my life off. Then, after passing out on the toilet, my then-boyfriend actually carried me to the car and to the ER - I had no primary physician, no gastro doc, no plan, and no idea how to pay for anything.

Creating a high-quality doctor-patient relationship matters

By chance the gastro doctor on call that weekend was a female gastro doctor new to the hospital. Born and raised in Poland, educated in the US. "Low man" on the totem pole (so to speak).

She turned into my guardian angel and I credit her as to why I’m still, after over 30 years with misdiagnosis, insensitive doctors, ignorant medical care, cruel bosses, a failed marriage, well-meaning but clueless friends and relationships, still walking this earth; here to watch my sons turn into incredible men, amazing fathers, and wonderful husbands.

They’ve given me 8 grandkids that I live for, cherish, and am honored to be their grandma and to be an important part of their lives. The gastro doctor I speak of I will not name - she knows and my family and friends know how she took me on as a patient and was determined to find the answers.

She herself intervened with the insurance company on my behalf (unbeknownst to me at the time). She contacted the foundation at the hospital to reach out to me to cover the balance of the medical bills that insurance didn’t cover.

She’d call me personally to check on me and she never gave up on me. She helped me to realize that I was NOT at fault for this disease and that what I had was real.

She once told me that I always came to mind when she would question her own decisions to go into the field she did( especially as a female). And then saying how taking on patients such as myself and making a difference in our lives was the reminder as to why she chose the difficult and often misunderstood field of gastroenterology.

Because of her refusal to give up on a patient and her diligence with insurance companies and her refusal to “just let the office deal with insurance" - it took 8 more months but I was finally accepted by an insurance company and plan that I could afford and was put on the biologic Remicade.

How can biologics treat IBD?

I was unsure of it all. I had never heard of it but entered into the infusion center with determination and the belief it would work and that I could finally live a quality life.

And it did, for 7 years, then my body began to build antibodies to the Remicade and eventually rejected it. But because of that guardian angel of a doctor, I pushed on to the next form of treatment.

I dealt with my body kicking that one out, and the next, and the following 3 more. But I never gave up and I never will - I’m on my last available biologic. Then if this doesn’t work I’ll be entering into a research/study program at Mayo Clinic.

But that’s okay with me. I’ve seen the medical field of gastroenterology go from basically a shrug to patients such as myself to the front of the line advocating for the millions of IBD patients around the world - acknowledging the tremendous impact on those affected and educating the rest of the population to help patients have the determination keep going and learn to accept ourselves and for our families and friends to accept us as well.