In April of 2006, I had my very first flare of Ulcerative Colitis, a form of IBD. I didn’t know it at the time, but that’s what it was. We were on a plane to Paris, and I got violently ill, and stayed violently ill for a few days. Luckily our trip wasn’t a total wash, but when I came home, I was sick for six weeks before we could figure out what was wrong. Fifteen pounds, a multitude of blood tests and one colonoscopy later, the verdict was in and it was ulcerative colitis. I’ve tried almost every different medication for UC out there (a comprehensive list below). Remicade offered me hope for awhile, and eventually started to fail and that’s when we went to the Mayo Clinic in Rochester, Minnesota, to get some help. This is the story of our journey there and back.
Here’s a list of medications I’ve taken/tried in my attempt to control UC:
PREDNISONE (THE DEVIL!!!)
Timeline of events:
First flare: April 2006
Dx: June 2006
Under control until January 2007
Pregnant from March to October 2007
Flare off-and-on: late 2007-October 2009
Remicade: March-September 2009
First trip to Mayo Clinic to discuss treatment: October 2007
Surgery #1 (removal of colon, jpouch creation, and temporary ostomy): December 2009
Surgery #2 (“takedown”, aka, getting rid of the temporary ostomy): March 2010
In short, how do I feel now? Marvelous. As in, I wish I had done it sooner. Making the decision to have surgery was the hardest, most gut-wrenching decision I have ever made. No pun intended, I guess. But it was terrible to have to make that kind of choice. But now, I have my life back. The life I had before UC had me. As a friend who had the same surgery told me, “You will not regret this. You will wish you had done it sooner.”
And he was right.
I hope you can be encouraged by my story if you are struggling with Ulcerative Colitis. It’s a nasty disease and there were days when I didn’t know how I was possibly going to make it. Please feel free to email me if you have any questions.
Frequently Asked Questions
How was it having “the bag”?
It was challenging. Honestly, I would have done the surgery three years ago if only it hadn’t been for that stupid bag. I practically begged to do this in a one-step surgery, but the doctors really recommend doing it in a 2 or 3 step surgery. The risks are just that much lower for complications. It was definitely the hardest thing I’ve ever done. It affects every part of you – physically, emotionally, sexually, fashion-ally. Wait, that’s not a word.
What did you wear while you had the ostomy?
I had my first surgery in December, so it was pretty cold. Takedown was in March. I lived in leggings, long tunics, lots of layers, dresses over tights, that sort of thing. The key was comfort and disguising the bag. I think I felt like it was much more visible than it really was. The only problem I really had was that any time I wore jeans or pants, my stoma and bag sat right on my waistline of my jeans. Annoying.
How do you get comfortable with making the decision for surgery?
It’s a personal decision. For me, in retrospect, I was glad that I was the one that made the final decision rather than it being made for me. It was extremely emotional, even afterwards. I cried for weeks before and after, but it really did eventually get better. Once I started seeing the benefits – reaping the rewards, so to speak – I realized that I really was going to make it. Realizing every day that yes, I can do hard things.
What medications do you take now after takedown?
I take Immodium to control the number of times I’m in the bathroom each day. Not too shabby considering that at the worst, I was taking a variety of 21 pills EACH DAY. Folks, I’m not THAT OLD.
Speaking of bathroom breaks, give it to me straight. I hear that you might be “going” anywhere from 4-8 times per day. Seriously?
Yeah, well, here’s the thing. It’s just not like having UC. With UC, there is so much urgency, fatigue, sickness, etc. It’s just not like that anymore. So even if I’m in the bathroom more than the “normal” person, it’s not like being sick. My only complaint is the number of times I’m up in the middle of the night. It’s like being pregnant. Kinda annoying. But I control it by taking Immodium, and watching what I eat and when I eat it. Timing is everything. And can I be frank? I’d probably be in the bathroom that much every day anyways because I drink a lot of liquids all day. So, it all evens out. I was really worried about this pre-surgery, but it is a non-issue.
How was the second surgery in comparison to the first?
A cakewalk. Seriously. You realize just how serious the first surgery truly was after you have the second because takedown is just so much easier and less invasive than the first.
Was it hard to travel to & from Mayo Clinic?
After the first surgery, I definitely needed wheelchair assistance to get on the plane and through the airport(s). I simply was too weak and sore. Allow plenty of time after you get out of the hospital if you should need to stay a few days extra in Rochester for moral support or help from the ostomy nurses. I definitely did.
Did you have any complications once you returned home? What did you do?
Mayo is awesome about providing excellent care even from long distance. If you need help, the ostomy nurses are AMAZING, as is any of the surgeons or their staff. I did meet with a local ostomy nurse. I have to say, it wasn’t the best experience. Other than just an informal visit with the ostomy nurse to make contact in case I did need help, my complications were minimal. I did have a problem with my suture coming apart a little, so I met with a doctor at the local wound care clinic. No big deal.
If you have any other questions, feel free to email me! I’m always happy to offer up my experiences.