I am finding it particularly odd that people ask me how I am feeling every day. I mean, I know that they care and why they are doing it, but, I also feel as though they weren’t listening when I explained the diagnosis, which, came just 2 weeks ago. UC and I are on our honeymoon right now, thanks to Prednisone and Asacol, but I have a feeling that at any moment, he’s going to get drunk and leave me at the bar without the credit card. My name is Yvette. I’m 46. I have three sons: 18,15 and 9. I’m a teacher, a coach, a marathoner; many people have called me Superwoman. I fundraise, wait tables, volunteer, if you needed a shoulder to cry on recently, it was probably mine. I didn’t say No and I didn’t ever slow down. That is, until almost 7 weeks ago when my body seemed to get hijacked. Chronic diarrhea followed for 5 weeks, mixed with a hospitalization, numerous doctor visits, a colonoscopy and, finally, the diagnosis. Relief to know, yet, there has been a period of Denial as well. I’m trying to keep my sense of humor…
Some more about Her:
You just don’t imagine that the Homecoming Queen will end up with IBD right? Really? How cute or sexy is that? When people compliment you on how hard you work, how much you help others, how cute your butt is, well, your intestines aren’t really something that ever pops into your head, at least they didn’t register on my radar. I mean, I am extremely active. I like Bikram Yoga. I’ve run 5 marathons since turning 40 and I’ve run NY twice. I’ve raised over $10,000 for APLA, Autism Speaks and UNICEF and
I say these things because people are important to me, helping others is important to me, kindness is important to me.
Then one day, I got sick. Really sick. And I realized that while the same things remain important to me, I now have to be important to me too. I reached out, told everyone about what I have been going through and, it amazed and inspired me, so many people reached back, embracing the awkward discussion about my colon and the symptoms, sharing stories, advice, offering to give my kids rides and to clean my house. I have been an English teacher for 24 years, both full time and part time and the main reason why I love it is because I am able to help others reach their potential, respectively. I have a hand in what happens in their academic life; I can give them, share with them my love of reading, writing and learning. Being diagnosed with UC has been a bit of a role reversal for me in that respect; now I am the student and I am being enveloped by doctors, friends, family, colleagues, fellow UC diagnosees who are teaching me how to still be Yvette while managing this, as my doctor put it “unfortunate illness.” I guess what makes me worth getting to know is my love for life. UC may tweak how I manage my daily life, but it will not stop me and I hope that my one story, added to all of the others will help someone else understand themselves just a bit better.
Symptoms of the U Know What…:
Before starting the Prednisone (weaning off now, 25 mg a day) and Asacol (3x daily), I had chronic diarrhea (10-20 movements) a day for a little over 5 weeks. I also had severe cramping and chronic pain on both the lower right and left hand sides of my abdomen. I had to be hospitalized for dehydration and pain. I had mucus and blood in my stools and I lost about 12 pounds in those 5 weeks. Right now, today, my bowel movements are “consistent” 2x per day, no diarrhea and, while there is still cramping, the abdominal pain has subsided. I do have Gallstones, Kidney stones and apendicolith, which the doctor says I have to be mindful of as they almost took out my appendix when I was in the hospital.
I guess I already started responding to this earlier, yes, I’m a teacher, no, I didn’t read the questions all the way through first. BOOM. I hope my students didn’t read that. Anyway, I have a cute butt, so I’m not all that concerned about the doctor checking me out. Also, I’ve had three kids, all boys, weighing in on an average of 8 pounds 10 ounces so, I have no qualms about doctor visits, scopes, scans. Whatever they need to do, I strip and it gets done. I’m easy that way…
I have adjusted my routine as I was NOT nor have I ever been a morning person. But, my symptoms had been the most severe in the morning so now I get up about 90 minutes earlier than before, I drink water, hot tea and I eat something so that I can take my meds. I go for a 30-60 minute hard walk to get my system moving and usually by the time I get back, I have to use the little Girl’s room. However my stomach is feeling after I eat dictates how long I walk that morning. I also take and carry with me my very own “diaper” bag for Yvette. I thought I was done with those. I carry the following: wet wipes, Bordeaux’s Butt Paste, hand towel, extra shorts, underwear and a roll of TP. I also carry lotion, snacks, water and a plastic bag. I keep this all in this cool little backpack that I found (looks like a purse) and it comes everywhere with me. I don’t feel awkward and, frankly, it gives me some security. If I have an accident, it’s not the end of the world, and I’m prepared…
My family is awesome: my sons and my husband. The rest of my family is concerned, but I think we have moved into a new territory of awkward when it comes to discussing my colon and how it’s just not as cute as it used to be.
I’m not going to lie, I get scared sometimes. But finding answers has lessened that fear and has made me want to reach out further and hopefully find more people who I can help and who can help me. What a gift that is!
Medications, Treatment Ideas, Secret Potions:
I listed the meds earlier, but I did see a nutritionist and I have been doing a lot of research on nutrition. The Paleo diet or something closest to that is what I am doing right now. I try to make every ounce of food count. I’m far from perfect though. I still have a cup of coffee in the morning (decaf most days) and I will have sorbet, frozen yogurt or ice cream with my kids. Although I will pay for this sometimes. I’m doing yoga again and I’ve had a session with a Reiki Healer who really showed me that relaxation is so crucial to maintaining good health. I’m sleeping better, reading more and trying to listen to my body. I don’t take any other supplements besides Calcium (1200 mg a day) and I am incorporating Probiotics, Ginger, Tumeric and Cinnamon into my cooking. I drink Coconut milk, no alcohol or caffeine (well, a little) and I have been good about limiting processed foods, including refined sugar (this has been difficult). I am juicing more, making smoothies and I rediscovered my love for eggs. I LOVE eggs! As a positive result, my family is eating better, but, then again, now they want me to cook EVERY meal. “But MOM…”
My biggest concern, having been so recently diagnosed is that as the doctor is weaning me off of the Prednisone, that I am going to have a major flare up and I am just now poised to return to my job, where I stand in front of a classroom of college students… you see where I am going with this. Staying calm helps and eating right helps, but there are moments when I imagine myself running down the hall and not quite making it. Funny though, whenever I play that scenario out in my head, it isn’t as mortifying as I think, maybe because I’m 46 and not 22 or maybe because, once, before all this, maybe two years ago, right before the start of a class, I had used the restroom and didn’t even realize that the toilet seat cover was hanging out of the back of my pants as I walked into the classroom. A student caught me as I walked in and grabbed it but not before they all saw it, laughed hysterically, endlessly, as my face turned crimson. I had to take it. They loved it. Humiliation… check! So, for now, I will try to maintain my sense of humor. I will keep moving forward, much like running those marathons and I will remind myself that however bad it gets, for now, I’ve been given one more day and that’s pretty damn good. I hope my story helps someone else. Thanks for letting me share!
written by Yvette
submitted in the colitis venting area