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“What a long, strange trip it’s been”

I’ve been a Crohnie for almost 30 years. I began showing symptoms at age 19, shortly after the birth of my first son, in 1990, and I suffered silently for four years. I was originally diagnosed with UC in 1994. By that time I’d delivered my second son, lost over 50 pounds and became quite anemic. My symptoms became a hindrance to my daily life and any medication I was prescribed proved to be ineffective in treating my symptoms. Three years later, and during the entirety of my third pregnancy, I was in a full blown flare: excruciating pain, bloody and mucus laden diarrhea, vomiting, uncontrollable bowel movements, fatigue and depression.

My GI, at the time, put me on sulfasalazoline, rowasa enemas and good ol’ prednisone. I’d been on prednisone before and, oddly enough, I didn’t respond to it as favorably as I had in the past. I ended up having to increase my dosage to 60mg from 40mg, and my symptoms didn’t really improve until after the birth of my son in 1997. A year and a half later I was flaring again.

This flare brought with it the usual symptoms, including joint pain and fevers. My (new) GI prescribed 6-Mercaptopirine, Sulfasalazoline and prednisone (again), this time 80mg. I took up distance running to deal with the medically induced aggression.

In November 1998, I had a colonoscopy, in which three precancerous polyps were removed from my large intestine. My GI referred me to UCSF Medical Center, and in February 1999, I had a total colectomy performed. Unbeknownst to me, it was to be the first of nine Crohn’s related surgeries I’d have, thus far.

Also unkown to me, at that time, was the tiny life I cradled safely in my womb. My perfectly healthy, beautiful baby girl was born, by C-section, eight months later in Salinas, California. My surgery forced my disease into remission, and my story should have ended here. Sadly, this was not the case.

Seven quiet, and productive years had gone by when, out of no where, I doubled over in pain and felt an uncontrollable urge to poop. Blood and mucus was all I passed. I could feel my gut spasming throughout the days, as I continued to run to the restroom, 10, 12, 20 times daily. This felt a lot like UC, but I knew it couldn’t be since I no longer had a colon. Then, in late 2005, I ended up pregnant again and my symptoms eased dramatically. After the birth of my second daughter (another C-section), in the summer of 2006, my symptoms returned with a vengeance.

Six months postpartum, I ended up in the ER with a hemoglobin of barely 6. The physicians on duty that night ordered several tests, including a CT scan. They located a bleed in my pouch and diagnosed me with pouchitis. Antibiotics and prednisone were prescribed, along with four units of blood. A week long stay in the hospital and I was released, only to return six weeks later with the same symptoms. Again, I was given antibiotics, prednisone and more blood. I had to move closer to family, who lived in a smaller community. My new doctor was a no-nonsense former Army medic who practiced at a rural hospital. I flared yet again and, after researching my symptoms and consulting specialists in the field, she suspected IBD. She referred me back to UCSF Medical Center, where I met my current GI and surgeons. A few appointments later, my new specialist diagnosed me with Crohn’s Disease. She also said that I’d likely been misdiagnosed with UC, when it was Crohn’s Disease I’d had all along. In 2010 my doctor put me on disability, and my GI did all she could, save surgery.

For two miserable years I tried medication after medication, only to become sicker and weaker. Iron infusions and blood transfusions became my normal, not to mention my growing tolerance to opioids. Immunosuppressants, anti-inflammatories, steroids, biologics and probiotics did nothing to improve my condition. I had a loop ileostomy performed in 2012, with the hope of giving my gut a.chance to heal enough for a take down surgery. Five months later, and after yet another close call at the ER, I made the decision to make the temporary ileostomy a permanent one.

I’ve had a few surgeries since then, and I’ve managed to hold on to most of my small bowel. I only had one flare since then, but it was controlled with a combination of Budesonide, 6MP, Aprizo, prednisone and Humira. My stoma, “Gertie,” has had to be relocated three times so far, but she seems happy where she’s at. Being an ostomate has brought with it some new and unique challenges, but everyday is a chance to grow and learn.

By the way, that beautiful baby girl, born almost 18 years ago this October, graduated with honors from a high school in Texas. She plans on studying medicine. My ambitious little 11 year old has her sights set in becoming a research scientist to study, and develope a cure for, Crohn’s Disease.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • thedancingcrohnie moderator
    6 months ago

    What a story, what a journey.

    It really touched me at the very end when you said your 11 year old has sights to find a cure for Crohn’s. Life is hard, but it does have an amazing way of being beautiful; and knowing that your daughter wants to find a cure and perhaps will one day, is beautiful.

    Wishing you the best in health. I hope you are doing well these days.

    Always dancing,
    Elizabeth (team member)

  • Meagan Heidelberg moderator
    2 years ago

    Hi RegiLou!
    Thank you SO much for sharing your journey with us and our community! And WOW what a journey it has been for you. So many years, mis-diagnosed with UC, then IBS, and finally diagnosed with Crohns Disease! So good to hear that you’ve only had one flare since finally figuring out what was going on and the correct treatment for it. We’re glad that “Gertie” is happy where she is, and hope she’s there to stay 🙂
    So glad to hear that your daughter plans to study medicine and develop a cure for CD!!

    We appreciate you being a part of our community!
    Meagan, InflammatoryBowelDisease.net Team Member

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