It saddens me to look at my last post. Only a month ago I was feeling fabulous after surgery, and optimistic that I was going to continue feeling fabulous. I was excited to get back into activities that I had cut from my life due to my symptoms over the past year and a half. I even put gym clothes in my car to try to motivate me to go after work!
After my last post, I had about one more week of that top-of-the-world feeling before something came to kick me in the butt again (pun intended). Symptoms came suddenly, and then progressed, beginning with an increase in my trips to the bathroom, and the loss of "normal" stools. After two weeks of constant diarrhea five to ten times a day, I finally called me doctor as it was apparent that I didn't simply eat any bad sushi or drink some old milk. I told him about returning to the days of calling the bathroom my office, but was happy that at least I was not experiencing any extreme cramping pain such as before my surgery. He thought maybe I had c-diff, an infection common with people whom had recent bowel surgery. So I sent my stool to a lab where they tested for that and other infections. All came back negative. The next step was to schedule a flex sigmoidoscopy (similar to a colonoscopy, but they don't have the camera travel as far into your colon). I am having this procedure done tomorrow. I also finally found out just how much of my bowel they removed: 13 inches of my colon, which amounts to one third of the colon. I had been lead to believe it was a very small section of diseased colon, maybe 4 inches, so this information was definitely good for me to have!
In the meantime, I have been put back onto prednisone... a sad state as I had just finished tapering off the drug, a process which took a few months. I constantly feel as if someone took a large pile of broken glass and forced it up my rectum, whether I have recently been to the bathroom or not. Going to the bathroom often leads me to tears (which is particularly fun if I'm at work or class). Some stomach cramping has returned, but not nearly to the extent that it pained me before my surgery. Most of these symptoms have been keeping me awake at night, stumbling to the bathroom in the dark wee hours of what was once claimed for sleep.
I'm writing this post to vent to the vast space of the internet, as this recent back-step in my recovery has got me feeling extremely defeated and exhausted. I received a three week glimpse at what it felt like to feel healthy again, and it has been taken out from under me, and I can't help but feel angry. I apologize to those whom have had to interact with me on a daily basis; if I had a chip on my shoulder, this is most likely the underlying reason. At times I have broken down at home, often after a bad trip to the bathroom, as my mind wanders to what the future holds. Surgery was to provide a light in my life and now I can't help but wonder what effects this disease will have on things I want to accomplish.
At the same time, after I have given myself a dose of self-pity, and then a slap across the face for giving myself a dose of self-pity, I must stay optimistic. There could simply be an infection of the surgical site in my intestines, and not recurrent Crohn's inflammation and ulcers. We shall find out tomorrow.
To other crohnies out there: What are your tricks to staying positive?
Wishing everyone happy thoughts and happy bellies.
Oh, I'm so sorry! This sounds horrible. You have loving family and friends to get you through it. Good luck today! I'll be thinking about you.
ReplyDeleteWow, this post was exactly what I needed today.
ReplyDeleteI am rooting for you and completely understand what you are going through.
For the last 3 years, I have been experiencing the same draining physical, mental, and emotional effects of this condition while also starting and finishing graduate school (in medical journalism, ironically). Throughout this process, I have had multiple medical procedures (2 colonoscopies, 2 endoscopies, CT angiograms, etc.) resulting in dismissal with no diagnosis from close to 8 physicians. I feel like I am screaming, trying to tell them what is wrong, all while it seems to fall on deaf ears. I have been seeing a new gatsro for the past 4 months and we have a pill cam procedure scheduled for December. He told us that this would be the final stage in determining if this is indeed Crohn's.
I know long periods of un/missdiagnosis are associated with Crohn's and if you don't mind me asking, how long did it take your team of physicians to make a diagnosis?
Wishing you all the best!
I appreciate your blog. Thanks so much for sharing it. I am 28 and have had some GI problems for years. I went to my PCP this week who recommended that I see a gastroenterologist for what she strongly suspects is IBD. The more I read, the more I understand about what I have been going through. I feel really thankful that this doctor has listened to me rather than assuming I am nuts.
ReplyDeleteI wish you the best in your ongoing treatment.