Tag Archives: ulcerative colitis

Episode 20 – This Is Just the Beginning with Michael Tresca

Take a journey back to 1999, when cellphones were a rarity, dial-up internet access was still in use, and Amber had her first surgery of the 2-step j-pouch process. Amber’s husband Mike, a writer and communicator, journaled his thoughts on the day of the surgery. This journal was recently uncovered and Amber reads it to Mike and gets his reactions and further recollections of that challenging day.

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Episode 18 – You Have To Be Happy Within Yourself – With Brooke Abbott

Pregnancy and birth are different for women with IBD. There are not only challenges that come from the disease itself but the lack of awareness about IBD during pregnancy can lead to less than optimal treatment. Brooke Abbott of The Crazy Creole Mommy Chronicles describes how she coped with ulcerative colitis during her pregnancy and a birth that did not go as she’d hoped or as she’d expected. Learn how everything turned out in the end and find out what Brooke and Amber think pregnant women with IBD should do to prepare for birth and for those first few weeks with a new baby.

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When Your Body Image is Crap

Amber Prom

This is what prednisone did to me prior to my senior prom. It hurt to smile, my cheeks were so big.

Many people with inflammatory bowel disease (IBD) will admit to having a body image issue. The  research shows that people with IBD who have a healthy self-image are in the minority. And after all, how could we not have issues with our bodies? Our bodies fail us without warning, not to mention the symptoms of IBD which are often so distressing and personally upsetting to oneself and to others.

It’s funny, now as an “over 40,” I think back on the days when I was younger and I have to laugh at my skewed sense of self. The facts that support my internal monologue on body image will surely upset those who were closest to me when I was a child and a teen. We didn’t discuss things like body image in the 70s and 80s and there wasn’t anyone who told me the things I tell my daughter, that her body is strong and beautiful and that we will do our best to take care of it.

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About IBD Podcast 3 – My J-Pouch Is My BFF

When Miscarriage Happens To You

Girl On A Beach

When is your family “complete”? It’s hard to know what the answer is to that question and in some cases it’s decided for you instead of by you.

Below includes my experience of miscarriage. Please note this includes a frank discussion of pregnancy loss and medical treatment for such, as well as strong language.

I never thought I’d be writing about miscarriage. To tell the truth, I kind of don’t want to do it now. But I’ve come to realize that holding back is harmful to me, and imparts the feeling that my experiences didn’t serve any purpose. Not that everything that happens has a reason or a purpose, but I have the ability to take this part of my life and turn it into something positive.
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The Time I Ate A Big Mac (And My Doctor Paid For It)

My first gastroenterologist came to me by circumstance. I was referred to a different physician in the same practice, but when I needed to get in sooner, he was the one that had room in his schedule to do my colonoscopy. He was the one that diagnosed me with ulcerative colitis, and sweated over my case in those early days when I was struggling to hold on to my colon.

Big Mac

It might not be everyone’s favorite, and it’s certainly not health food, but I still love them.
Image © The D
http://www.freeimages.com/photographer/TheD-29809

At some point after we’d managed to turn things around and I finally stopped bleeding, I came in for a follow-up to his office. I’d been on a low-fiber diet for quite some time, because that’s how treatment went in those days. I’m sure I felt deprived at times but I remember mostly being grateful that I could eat at all. In the hospital I received nutrition through an IV and could eat no food, so even soft low-fiber foods were a step up. I’m sure I wanted a green salad, but a steady diet of turkey and mashed potatoes was the thing that was going to put the 20 pounds I needed back on my body. Continue reading

My High School Teachers and My IBD

My High School Teachers And My IBD

Amber And Her Father

Graduation day! That’s me and my dad, who passed away in 1998. Helloooo prednisone moon face on me.

After my first colonoscopy and my diagnosis of ulcerative colitis, I spent about 40 days in the hospital. I was a junior in high school, so that whole situation had to be dealt with. Thankfully I was a good student, and when it was time to deal with homework and missing class, I was able to cope with much of it.

I had great teachers in high school — for the most part. Continue reading

A Diagnosis: Yay.

My first colonoscopy took place at the hospital, so immediately after it was over, I was taken upstairs and admitted. Now, I’d never been sick in my life: being treated with antibiotics for a rash a few months earlier and chickenpox when I was 12 were the only other two times that I received medical care. This, of course, was on a completely different scale. I was taken upstairs to the pediatrics ward.

CCFA Book

The first — and only — book available to me when I was diagnosed at the age of 16. It was small, short, and didn’t contain much current information.

Here’s the thing about being in peds as a teen: you’re not a small child, so much of what goes on there doesn’t help you. The staff is used to dealing with common childhood illnesses, and while IBD is not rare, I’d venture to say they didn’t see it very often. In the small community hospital where I was treated, I actually saw very few other children. Once a classmate was admitted for appendicitis and an appendectomy. She, of course, left after a few days. Other than that, I saw mostly young adults in the pediatrics ward. Maybe our community just had healthy kids, or kids who needed specialized care went into Detroit for Henry Ford, or down to Ann Arbor for the University of Michigan.

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My First Colonoscopy And Getting A Diagnosis

Between the time when I was misdiagnosed and the time I received an actual real diagnosis, I had my first appointment with a gynecologist. At this visit it was discovered that I had a urinary tract infection. I was put on antibiotics (again, I don’t know what the exact drug was), which was probably not the best idea for my gastrointestinal tract, though the infection had to be stopped before it could cause further damage. I would go on to have many, many urinary tract infections over the years and have seen several urologists, who can find nothing physically wrong, and can only prescribe more antibiotics.

Before even seeing me in the office, the first thing the gastroenterologists wanted to do was a colonoscopy. By this time, I had constant diarrhea. It was always bloody, and at times it was nothing but blood. I remember doing nothing but going between my bedroom and the bathroom, all day and all night. Continue reading

My First Misdiagnosis

Before I was diagnosed with ulcerative colitis, I can’t remember ever having a bowel movement. That’s how unmemorable my digestive system was. I don’t remember having diarrhea. I don’t remember being concerned about how what I ate would affect my digestion. I don’t remember ever having discomfort or even throwing up.

And So It Begins…

When I was 16, however, and starting my junior year in high school, that all changed. The blood in my stool came first. It may have been going on for some time before I even noticed it (again, I don’t ever remember thinking about stool before). When I did notice it, I had no idea what it meant. It went on for a few days before one morning I told my dad what was going on. He called out of work that morning and took me to the prompt care at the local hospital. Continue reading