Tag Archives: Crohn’s disease

From the mother of a Crohn’s disease patient

In honor of Mother’s Day, here is a post from a very special mother. She has been by my side, all of these years, fighting for me as I tried to navigate this life living with Crohn’s disease. Mom, you are such an amazing, beautiful, godly, strong woman and I am so proud to call you my mother. I know I would not be the woman I am without your love and support. Happy Mother’s Day!

One of the greatest fears of a parent is to have something bad happen to their child. I remember watching some telltale signs of weakness in
Stephanie, knowing she was running to the bathroom, and feeling generally lousy. Was it a stomach virus, salmonella, even a parasite? One by one, these were ruled out by medical tests, while Stephanie was getting more tired, paler, and thinner.

Our family doctor wanted her to see a GI, and he ran more tests, while telling me ‘not to jump to conclusions’ when I asked if it could possibly be Crohn’s.
He wanted to try some oral meds, and wait for them to work, while Stephanie continued to get weaker, paler, thinner.

stephanie hughes crohn's disease sick hospital lost weight child kid duke stolen colon ostomy colitis blog family parents sistersUltimately, we wound up with the pediatric GI team at Duke Hospital, and a correct diagnosis was made and treatment begun. My 75 lb. Stephanie, now only 50 lb., would spend the next 25 days in the hospital, and the following year recovering. Mother’s Day 2000, I was happy to have my baby on the mend – even though she was full-faced from all the steroids, hair in complete disarray as so much had fallen out, and now new hair was coming in underneath, but she was alive!

Several Mother’s Days since have been spent at her bedside, or walking the floor praying for strength for her. Mother’s Day 2008, we proudly watched her graduate from UNC Chapel Hill, thankful she made it through, sometimes on sheer will and determination. Mother’s Day 2012 was celebrated at her home, as we tended to Stephanie, just home from the hospital after her Ileostomy. Mother’s Day 2014 – my baby is feeling great, in Italy on a second honeymoon with our wonderful Jarrod.

I may not know what tomorrow holds, but I know Who holds tomorrow. Happy Mother’s Day to all women who are, will be or have a mother.

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IBD Awareness Week giveaway winner

And the winner is giveaway prize blog stephanie hughes stolen colon crohn's colitis ostomyChrystal Shofroth!!

What Chrystal listed as the thing she wishes others knew about IBD I think rings true with many of us: “I wish others understood the seriousness of IBD complications and didn’t just judge us.”

Chrystal, I hope you wear your IBD awareness shirt and intestine socks proudly! And hopefully you can find some healthy and yummy new recipes to try. Send me an email at stephanie@stolencolon.com and let me know which “Ask Me” shirt you would like and where I can ship it to.

Thank you all so much for your comments taking part in my first giveaway. Keep spreading awareness!

And thank you again to The Great Bowel Movement. Check back on Monday for the next prize package!

Here are some other great comments you guys left:

“That IBD isn’t just a pooing disease! I wish they would understand it affects everything about me..my physical and mental health, my family, my friends and everything I’ve ever dreamed for myself!” – Jo Jo

“That IBD is life changing, but not necessarily for the worst. That it doesn’t just affect your intestines and that nobody is going to react to this disease in the same way!!!” – Dezaray

“I have learned that the IBD community includes some of the strongest, bravest, and most sincere people I’ve ever known, and that they truly are warriors!” – Christy

One voice against IBD

Thank you all for sticking with me this month as I have been recounting my early experiences with Crohn’s disease. It has actually been a little difficult for me to go back and relive those initial months of figuring out how to live with inflammatory bowel disease. I didn’t realize how much I had hidden away and never looked at since.

At the time, I didn’t need to know everything that was going on. My parents handled talking with the doctors and go over my treatments with hospital staff, so I never dwelled on the details. I was happy to leave those days in the past.

There is still a lot left to this story, but I want to give it a little time before moving on to the rest of my experience. I didn’t realize when I first started out just how much I had to say on the subject.

I also didn’t realize all of the emotions it would bring up in me. I remember what it felt like to be standing on the brink, to be starving to death even though I was still consuming food. There are so many other ways that IBD can take its toll: perforations through the intestine, sepsis, strictures (where the intestines narrow and won’t allow anything to pass though) and obstructions, complications from surgery, cancer.

And what’s so frustrating is that IBD is not always taken seriously. These are diseases that are not only painful and embarrassing, but often debilitating, definitely life changing, and even ask mefatal. But there are many out there who just see it as a “bathroom issue,” on the same lines of a stomach bug. But those who live with it every day know it’s so much more.

I hope we all find the strength to become one voice fighting against inflammatory bowel disease.

How it all started

My life with Crohn’s disease, Part 2

Read previous posts in series.

It was the morning of the day we were going to perform our dance for the TV show special. We had to wake up really early and arrive at the Alabama Theater in Myrtle Beach to prepare for our routine. We had one rehearsal that morning and had to wait around for several hours before the actual performance. I remember sitting in a backstage area with my mom that day feeling pretty low. I can’t explain exactly what the issue was, but I felt really tired and worn out.

stephanie hughes sadler dancer star systems national competition first place winner dance surf rock 1999 stolen colon crohn's colitis ostomy ileostomy blog

This is probably the last day I actually remember feeling healthy.

In my dance routine, I had to do an aerial – which is essentially a cart-wheel without touching the ground – but I missed it in the performance, which was unusual for me. I just felt off. My mom has told me that is the day she looks back at as the start of everything. It’s when we realized that something was not right.

I started back to school just a couple of weeks after the competition. Around that time, the symptoms started to come back and I started losing weight. Now mind you, I was already a tiny kid at that time; I only weighed 75 pounds to begin with. One vivid memory I have is sitting in the back of one of my classrooms shivering uncontrollably because I didn’t have an ounce of fat on my body. Another student told the teacher that something was wrong with me, but of course I just said, “It’s OK, I’m fine,” and that was the end of it.

My parents were in a business at the time that had out-of-town conventions over the weekend and my sisters and I would often go with them since there were other friends of ours who would be there, too. The conventions were often held at the Greensboro Convention Center, which we loved because the mall was in the same parking lot as the hotel! We attended a convention out there over Labor Day weekend, which was about two weeks after school had started. I felt so sick over that trip that I didn’t get out of bed the entire time. I remember laying in the dark all by myself while everyone else was at the mall. Once we got home from that weekend, I didn’t go back to school.
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