Famous Crohnies – Olympic Edition
I’ve been toying with the idea of making a list of famous people with Crohn’s and Colitis for awhile now. There’s no better time than now to do it with the Olympics starting this weekend.
First on my list is Olympic kayaker Carrie Johnson. Carrie was diagnosed with Crohn’s Disease before the 2004 Olympics.
“It started with symptoms of fatigue and it kind of escalated to increasingly worse GI (gastrointestinal) symptoms,” Johnson said.
Carrie participates in the flatwater sprint- a two-minute race. Obviously while you are in the middle of water in a tiny kayak, having a Crohn’s episode is your worst nightmare.
Bathroom Talk
Sorry for the delay in posting! We were away this weekend seeing our niece and the blog kind of got away from me. However, while we were away I got thinking…
I don’t know if we are just strange or what but poop and Dan’s bathroom habits are a routine part of conversation, no matter the time of day or what we are doing.
At my in-laws this weekend, we were all eating and Dan disappeared. Different people asked me on different occasions where he was and each time, it got us on the topic of Dan pooping. Now, for most people this might be gross, but for people with Crohn’s and Colitis, this is totally normal. They spend more time than normal in the bathroom than other people, so it makes sense that those with it talk about it more than others.
We also talk a lot while he is in the bathroom. I ask him how he’s doing and show him funny things on the computer. Or if he has his phone, I text him while he’s in there to make sure everything is okay.
Does anyone else find that, ever since they received their Crohn’s or Colitis diagnosis, they talk a lot about their bathroom habits or poop without shame? Do you think it’s weird to do or part of life?
Turning lemons into lemonade
I grew up turning everything into a joke.
For example, when my mom was diagnosed with cancer in 2006 and lost her hair, we bought her a Du-rag and tried to get her to wear a Bob Ross Afro wig.
It’s no surprise then that Dan and I try to take on Crohn’s with a light heart and lots of jokes. It’s definitely hard at times to find the humor in our situation when there is so much bad (hospitals, medication, medical bills, etc.) but we do our best.
The three times Dan has been hospitalized, I have taken photos to chronicle the experiences. While it might seem a bit strange, it helps us to keep our moods up. We also make a lot of puns related to poop and the other things that go hand in hand with Crohn’s Disease and Ulcerative Colitis.
For the last three years, we’ve participated in CCFA’s Take Steps Be Heard walk and because of our jokes, it’s only appropriate that our team name is Shits & Giggles. This past year Dan was the honored hero at our walk AND we were the first place fundraiser on the day of the walk!
If I could give one piece of advice to all those either suffering from or taking care of someone with Crohn’s and Colitis, keep your spirits up and try to laugh. It’ll help make the bad times be a little brighter.
What do you do to make Crohn’s not hurt so much?
Worrywart
I might be crazy but every time Dan says he has a stomach ache (which is pretty frequently), I am reminded of the dreadful night last year when he woke me at 2A.M. to go to the emergency room. That night we found out he had a blockage. Now, every time he has pain in the same area, I worry it’s another one.
I know the fear is irrational since he had surgery last year to remove the narrowing that caused the blockage (will go into that in a later post) and he has a wide open passage. But it still scares me.
Anyone else out there worry like that?
Things to do during bathroom breaks
If you take care of someone with Crohn’s or Colitis, you know that going out to eat is always an adventure. Between finding something to eat for those on restrictive diets (low fiber, low residue, dairy free, gluten free, the diet restrictions are endless…) and timing the all important bathroom trips, going out to eat takes some planning. Since Dan’s surgery in 2011, we haven’t had to deal with the restrictive diet issue much (thank G-d because that was a huge pain in the butt, but I’ll elaborate more on that at a later date) but bathroom trips are part of our regular trips out to eat.
Affordable Care Act and Crohn’s
For the past week, the Supreme Court case testing the constitutionality of the Affordable Care Act (a.k.a. Health Care Reform or Obamacare) has filled the news cycle, leaving people wondering if the entire law would end up being repealed.
Today, the decision came out and the SCOTUS is upholding the law, with the exception of the Medicaid expansion provision. This is great news for Crohnies because if the law was struck down entirely, options for health insurance would revert back to the limited ones available previously.
With this huge news, its important to discuss, specifically, what the law does for Crohn’s patients and their families.
Routine Eating
When you live with someone with Crohn’s, there are things far and few between that are more important than having a routine. I’m not talking about a full daily routine for when you wake up, go to the bathroom, etc. but instead a routine schedule of when you eat.
I personally don’t need to eat at a specific time or specific number of times a day (yes I do know that isn’t the healthiest if I am not eating three times a day but I’m not the one with a stomach disease :-)). However, Dan needs to stay with a strict routine, especially during the school year. When he is working, he can’t eat after 6:30 p.m. because it might make him have to leave his class unattended the next morning to use the bathroom. He also can’t eat in the morning for fear of having the same thing happen.
Learning to live with vomit (somewhat)
Living with someone with Crohn’s Disease for the past three years and dating for almost six has caused me to grow up pretty quickly. I mean, for those who know me, I’ve always been a 50 year old in a 25 year old’s body to some degree. I am an extremely anxious person with some pretty bizarre minor phobias (flying, drinking, boats, etc.) that all stem from one major phobia-VOMIT.
I have never thrown up (or at least that’s what my parents have claimed all my life- I have some vivid childhood memories that contradict that belief). And, as many people know, those with anxiety don’t like not to know what something will be like. So I guess, in a bigger sense, my phobia is a fear of the unknown that has manifested itself in a fear of vomiting. For the longest time, I couldn’t even say the word vomit. I had a therapist in high school who tried doing exposure therapy for me and as one of my first “assignments,” I had to sing the song BINGO but replace BINGO with VOMIT. Talk about bizarre (and surprisingly helpful).
Talking about shit
I have tried blogging more than once in my life and it usually ends up the same way- I get really into it for the first few days and then get bored and give up. But I really want to give this a go and make it work this time around.
For the past almost six years, I have been a caretaker for someone with Crohn’s Disease. In 2007, a couple of weeks after we started dating and after my mom started chemotherapy for non-Hodgkin’s Lymphoma, Dan (my now husband) was diagnosed with Crohn’s Disease. Crohn’s, for those who don’t know, is an inflammatory bowel disease. Basically, it means that your gastrointestinal tract is inflamed and you have horrible cramping, diarrhea, weight loss, and all sorts of other fun things.
At age 20 (when we first met), most people would run from having a life with someone with such a serious, debilitating disease. Your early 20’s is stereotypically about being fun and care-free. But, as my friends would say, I am not most people as I have my own issues that are on par with Crohn’s for Dan to deal with. I have been with Dan through four colonoscopies (I can tell by the number of stuffed animals he has from me, one for each one), three hospitalizations, and one surgery, not to count hundreds of doctors visits and thousands of dollars in medical bills.
Caring for Crohn's & UC 