I would like to share a personal story with you. Right before I had my proctocolectomy/jpouch surgery, I lived life scouting out every bathroom wherever I went. It became my way of life. My ritual was that I would arrive to a location-a mall, a restaurant, the grocery store- and the first thing I would do is tell my mom, “I will be right back, I have to find the bathroom.” I knew which exits to take on the highway on the way to the hospital for doctor visits that had the best and cleanest bathrooms because God forbid on top of having this illness, you have to deal with the horrific public bathroom phobia like I have! I can’t stand the bathrooms with no toilet seat covers and when I have to place toilet paper over the toilet seats. The last thing you want to do when you have extreme urgency is line toilet paper perfectly on a toilet seat so you can sit down on it without the worry of germs, but for me it was a must! I don’t like when bathroom stalls have broken locks on the doors or when I have to stand in line waiting for the person to get out of a stall. Often times, if someone was with me, I would ask them to turn the faucet on full blast or flush the toilet in the stall next to me 3-4 times so I had a few moments where I didn’t have to worry someone would hear my bowel noises. The greatest hope is wishing no one was in the bathroom when I got there so I could be free to be me on that toilet! It was the nature of the illness, I couldn’t go anywhere if I wasn’t confident that I had an escape or a backup plan.
One time on the way back from Milwaukee when I was having a major flare, I had to get to a restroom QUICK- but it wasn’t fast enough, and it was disastrous for me and my mom. I was completely incontinent… As we sat in the car cleaning everything, I knew then and there I could not live like this. Who at my age as a teenager has this happen to them?? I had no other clothes with me to change into, so my mom took off her jacket and fashioned a skirt out of it to cover me. I wasn’t prepared for such an accident, and I learned never to leave home without an extra change of clothes. I remember that day, through my tears we laughed and cried over all of this, but I ended up crying silent tears the rest of the way home hoping somehow I could get saved from this humiliation. This wasn’t the first time nor the last time that I had an incontinence accident. When someone is suffering from Crohn’s, Colitis, or IBD it can happen and can’t be helped. To this day, it’s still my ritual to find a bathroom in every public place. Old habits die hard.
“How long a minute is depends on what side of the bathroom door you’re on” -Unknown
Here’s an inspiring article from the Illinois chapter of the Crohn’s and Colitis Foundation. Carly Fishbein, a 10-year-old, wants to help find a cure for her mother’s Crohn’s disease. So she and her friend make bracelets and sell them to others, donating the money to the CCFA.
A new story is posted on C3Life.com about the benefits of having a positive attitude when it comes to living with an ostomy. David G., a 60+ year old man has lived with a colostomy since 1997. Because of his positive attitude, his close relationships with friends, loved ones, and coworkers were not damaged in any way because of his ostomy. He had a very supportive environment and chooses not to let an ostomy control his life.
For those who are contemplating surgery, read David’s story and see that life doesn’t have to get worse just because you have an ostomy.
As I’ve mentioned in passing, I will be volunteering for a week at Camp Oasis this summer in Willow River, MN, sponsored by the Crohn’s and Colitis Foundation of America. The camp director is a lovely lady who’s daughter suffered with colitis at a very young age and had surgery when she was 12. The women’s health website, Your Total Health did a story recently about what the young girl, Bridget Alldritt, went through. Check out her story here.
This site has two other related posts by other women who’ve suffered with ulcerative colitis. I’m always on the lookout for avenues to share more women’s stories since this is a perspective I can’t cover in my videos. For your curiosity check out Adi Bodenstein’s story, age 22, and Jana White’s story, age 35.
Sometimes your GI doctor doesn’t seem like s/he has your health in their best interest. While your doctor isn’t the one primarily in charge of your health (you are), sometimes it is necessary to change doctors to one better suited to working with you.
I changed doctors midway through my struggle with ulcerative colitis and it was one of the best decisions I made.
Keep fighting,
~Dennis
Question: Have you ever changed doctors? How is your current doctor working out for you? Comment on this post!
Since I no longer have an ileostomy and instead use a j-pouch, I have no need for all of my ostomy supplies. It’s time to let go of them and move on to a new portion of my life. Just as before, rituals are important to remind ourselves of where we’ve been and where we’re going.
Keep fighting,
~Dennis
Question: Have you gotten rid of your ileostomy supplies yet, those of your who now have a j-pouch? Reply to the post!
The fourth time I lost control of myself back in my ulcerative colitis days. This story is the Near Miss. It could’ve been a lot worse, but thanks to some quick thinking, I managed to control the crisis. The longer you have colitis, the better you get at managing these sorts of things.
Hey everybody, sorry for the lack of a post yesterday. It was quite the long day doing bloodwork, an MRI, and meeting with the liver doctor about my PSC. Every test and appointment was delayed and pretty soon the day was over and I still hadn’t eaten much of anything yet (not supposed to eat anything before an MRI). For those who’ve never had an MRI, let me tell you, it’s quite the experience.
In the end, the liver tests were quite positive. The damage to my bile ducts is almost minimal at this point and it’s possible that I don’t have PSC, which is good news. Or, if I have it, it’s in the super super early stages, which means that as we monitor it over the years we can hopefully catch it when/if it starts to get worse.
Yesterday’s Stool Count: 8 during the day, 3 during the night.
The Day Before’s Stool Count: 8 during the day, 4 during the night.
It might sound rough in terms of stool counts but again it’s not bad. For the first couple weeks I’m supposed to just go when I feel like it. If I try holding it back I could break the connection in my intestines, which would be bad. So it’s best to play it safe for now and work on decreasing the frequency after Christmas.
Today’s video brings us back to the days of my colitis and the second time I completely lost control of myself. I mention in this video that this second time was perhaps the worst in terms of impact, but in reality, every time you lose control of your bowels it’s the worst time because you start to realize more and more how bad of a situation you are really in.
For those looking for a bit of humor, I came across this great article by humorist Dave Barry about the first time he got a colonoscopy. All I have to say, jokingly, is what a baby! As you colitis and Crohn’s sufferers know, colonoscopies are hardly a big deal compared to other stuff we’ve put up with!
Keep fighting,
-Dennis
Question: Have you ever lost control of your bowels in public and had NOBODY there to help you?
