As I sit here on the night before my yearly pouchoscopy (starving, BTW), it’s hard to not think about how far I’ve come since my last one. Events like health check ups always make me reflect and I find myself thinking a lot about when I was really sick and really actually starving.
Is it normal to think a lot about a time of serious, personal conflict? Or do I obsess? Sometimes I wonder if my friends or family think I talk about when I was sick a lot. For those of you that do, I have reason for it.
It’s almost like my B.C. and A.C. (before colitis and after colitis, ha perfect and yes I know that it’s really A.D. ok — but it’s A.C. on this blog). But seriously, when I remember things in the past or go to tell a story, the first thought that always comes to my mind is, was that before I was sick or after? Was that during my surgery process? Did I have an ostomy at the time?
It helps me to be clear.
I’m still fresh out of the time when I was sick, this is my first healthy year in 3 years so I guess it’s normal to still think often about hospital stays or surgeries. I talk with people who went through the surgery series and we find that we do the same. It’s almost like we are more familiar with being sick than we are with being healthy and living the life that I’m living now is strange.
I like to think that that’s because I’m grateful, because I certainly am. I’ll be walking to work thinking, “Wow, just a little over a year ago I was working at X company and was leaving my desk to throw up or deal with pain and here I am today and working 8+ hours feels like I’m conquering the world.”
My perspective has changed and the way I do every little thing has been affected by my journey with ulcerative colitis. The way I sleep, talk, think and plan my meals and more are all centered around my jpouch. Which is why I’m now starting to understand the argument that surgery is not a cure. Because I am healthy as can be, yet I am sitting here starving because tomorrow I have a pouchoscopy that I will have to have every year of my life because of the higher chance of dysplasia in the pouch. I’m still dealing with the aftermath of my UC physically and mentally and I most likely always will.
For those of you who don’t know what dysplaysia is (it’s ok, I wouldn’t either if I didn’t have a jpouch) dysplasia is the enlargement of an organ or tissue by the proliferation of cells of an abnormal type, as a developmental disorder or an early stage in the development of cancer.
Scary, kind of. But not really. I feel SO good right now and I joke so much about how much I currently love to eat. Everything. In sight.
Seriously, I enjoy food now so much more than I ever did. I went so long with being afraid of consequences of eating something or literally not being able to eat at all. I had melt downs in front of many nurses and doctors about not being able to eat.
One hospital stay I was SO sick, it was after a night I was bleeding so bad (full clots) that I seriously thought I was going to die. (Not that funny but it gets lighter,). I had to go down and get a pic line after I was admitted and I was so assured that since I was going to be in the hospital with medication and help from nurses that I would be able to eat.
As soon as my bed was rolled back in my room with my fresh pic, I immediately asked for crackers.
“I’m sorry, but you’re NPO until your doctor says otherwise. You’re on bowel rest,” says the innocent nurse.
“ARE YOU SERIOUS I’M STARVING I CANNOT GO ANOTHER SECOND WITHOUT EATING THIS IS INSANE OH MY GOD WHY IS SHE DOING THIS TO ME WHYYYYYYYY F*!*#$!”
“I can get you ice chips…”
“I DON’T WANT ICE CHIPS I WANT REAL FOOD NO I WILL HAVE NOTHING I’LL JUST SIT HERE AND STARVE GOODBYE.”
I then curled in a ball, in my overdramatic pretzel position (my dad knows this position well, because every time I’m laying in it he immediately starts saying, “What’s wrong? Why are you laying like a pretzel”)?
Sometimes I just like to lay like a pretzel, ok? It’s comforting to me.
Back to my original point of always thinking about and referencing my time of illness or months with an ostomy. It occurred to me while watching Real Housewives of Orange County Reunion..haha..that during many of those dramatic times, like when my nurse offered me ice chips, I would black out or let feelings get the best of me, even if they were over the top.
There were many moments during my journey that I can remember a lapse of being able to control my emotions and only being able to describe those times of extreme stress as, “blacking out.”
Not blacking out because I had too much alcohol. Unfortunately, I haven’t been able to and won’t be able to do that for quite a long, long time. I’m talking about the black out that your brain causes on it’s own. An article on Medical Daily describes this happening as, “a momentary shutdown of the brain’s storaging process.” It is, according to Dr. Carl W. Bazil of Columbia University’s Department of Neurology, a type of transient amnesia.
When my GI doctor told me that my medical therapies had failed me and surgery was an imminent and urgent option, I remember seeing black and feeling like I was going to fall to the floor.
When I met my surgeon for the first time and he told me that I had 2 options. 1. ostomy 2. die. Then telling me that I would be having my colon removed in 3 days, then I definitely blacked out. Screaming, crying and yelling profanities that I later was so humiliated by.
I think about those times a lot. But again, am I thinking about them too much?
A study found that people with serious health conditions such as cancer, a stroke or heart attack can suffer from PTSD.
While I do NOT think by any means I have PTSD, I do think that I’m still dealing with the trauma that my disease and surgeries caused. Which, PTSD can affect all walks of life who were affected by a traumatic situation. Psychology Today defines PTSD as an anxiety disorder that may develop after exposure to a terrifying event or ordeal in which severe physical harm occurred or was threatened.
Most importantly, I think I often reflect on my times of illness and struggle because it was such a big part of my life. As I move further into my life of health, I’m sure the time that I think about being sick will lessen. The comparisons I make will have less to do with when I was sick. The subjects of my stories won’t always be that of annoying home health care nurses.
Another thought is that ulcerative colitis, having an ostomy and a jpouch are a large part of WHO I am and what have shaped the person I am NOW. My perspectives and decisions are all based off of my new life. And my life is new, because I was a different person B.C.
I know one thing for sure, I like who I am way more A.C. I’m a better person. I’m more thoughtful, giving and grateful. I care so much about advocacy and helping those who are still suffering with Crohn’s Disease and colitis. I’m so glad that through my own suffering I was able to find people who motivated me enough to want to start my blog and my magazine, which have saved my life, without a doubt.
Quick update on my health and life, because I know many of you ask and wonder: I’m doing the best I’ve ever done with my jpouch. It really does take a year. I’m eating mostly whatever I want, getting up a few times at night, but that’s normal. I still have my days of stress and discomfort, but those are fixed after some sleep and maybe a hydrocortisone suppository.
I changed jobs without a flinch. A lot of stress came with that, but I made it through and am still feeling great. I now work for a company I love and for a boss I have so much respect for. I can’t wait to see where the future takes me and am ready for a clean, healthy scope. Yay!
Side note: I also can’t wait to eat tomorrow.