UC to J-Pouch Story


Posted by jenellepower on September 25, 2008

Time to put some of that psychology book-learnin’ to work! Coping is an area where I’ve done some research (primarily in regards to coping with cancer) and is certainly something I’ve thought about lots over the last few months. I’ve gotten lots of comments regarding my lack of complaining and generally upbeat attitude through the whole thing, so I thought I’d write about some types of coping that have helped me (both “real” and anecdotal).

Downward comparison – this involves comparing yourself to someone who is “worse off” than you. A few of you can probably use my experience with UC for that! I tell myself that there is always someone in a more difficult situation. There are people with terminal cancers, people who are blind, people who are quadriplegics, people who are born into poverty in developing countries. I could have gotten this sick at a younger age, I could have died in surgery, I could have had no support from family and friends (more on support later). As much as surgery sucks, at least a surgery exists to solve the problem (and even to reverse the ileostomy!). I’ve wondered many times about who was the first person who agreed to let a doctor attempt to poke their intestine out through their abdomen. It’s a bizarre concept but I wish I could thank the many people who agreed to the surgery initially so that it is available now.

Gratitude – this is certainly related to the downward comparison but it is a little broader. Several studies on the psychology of happiness have pointed to gratitude as an important factor. Try to remind yourself at least once a day about the things you are thankful for. For example, I constantly remind myself that I’m thankful for Andre (my partner), my family, my education/career.

Laugh or cry – this is something I refer to a lot and it’s the general approach I take to a lot of things. After a car accident, for example, I would remind myself that whether I laughed or cried, my car was still damaged. I think some people are taken aback when we (myself, Andre, close family/friends) joke about my situation, but being upset about it is not going to make it any better. For example, my sister threw a party once I was feeling reasonably well again to basically celebrate my recovery (which I think was a wonderful idea…in our society we far too often wait until someone has died to get everyone together). I would jokingly tell people it was the theme of the party was “Yay, Jenelle didn’t die!” or, alternatively, Mexican (food I fantasized about when I couldn’t eat). My bestfriend jokes continuously about how I’m 27-going-on-80 (I had a walker, I nap all the time). The laughter is much better for me than the crying.

It’s OK to be upset – I did resent the occasional time when I was upset and someone told me to not be upset. I have every right to be upset occasionally and it can be healthy to vent frustration or emotion. Seeing a loved one going through a really scary health problem is difficult on everyone but it is not your responsibility to keep a brave face for everyone. Wallowing isn’t healthy but allow yourself to be upset with the situation every now and again.

Post-traumatic growth – many people have likely heard about Post-Traumatic Stress Disorder but I’ll be few have heard of post-traumatic growth (basically it’s opposite). This area of research (pioneered by Richard G. Tedeschi and Lawrence Calhoun) examines the positive changes that an individual experiences as he or she struggles with a traumatic event. Far fewer individuals will develop psychiatric disorders following trauma than will experience positive changes. The positive changes reported include a new perspective on life, a greater sense of personal strength and improved relationships. Focussing on what you have gained from the experience (in addition to what you have lost – almost all individuals who report positive change also report negative change) can improve your outlook and help you cope. I have found my relationship with my partner to be even closer than before. I got to spend lots of time with my family. I was forced to think about my priorities in life and to think about what was really important to me. Little challenges that would have previously seemed insurmountable now seem trivial.

Short-term versus long-term perspective – I remind myself constantly that while the effects on my life in the short-term are quite large, in the long-term the effect will likely be minimal. Career-wise, not working for so long was not ideal, but in a few years that won’t make too much difference. And maybe having the surgery now will result in years of being healthy and not having to deal with continuous UC flare-ups. When I’m 80 years old and looking back on my life, this whole ordeal will just be a little blip on the radar.

I’ll leave it there for now. There are a few other related things I’ll blog about later as this topic is very personally interesting to me.


4 Responses to “Coping”

  1. Megan said

    This is such an awesome post, especially for someone like me who really struggled to cope with Mark being sick and the way our life was during those 7 years. Two things you discussed really resonated with me:

    1. It is okay to be upset. True that…it is okay to be upset. I learned finally that I could be sad, but instead of just sitting and being sad, I had to acknowledge that emotion. Then acknowledge when it passed. I learned to welcome the emotions and not repress or reject them and by doing this in time the emotions became less and easier to handle when they emerged.

    2. Post-traumatic growth – all I can say is that this blog is an example of post-traumatic growth. We started this blog about 6 months after his surgeries. And in this blog we’ve reached out, learned to give back, found our internal streght to talk about taboo subjects. I know it sounds cliche but Mark being sick was really goo dfor me in the lon-run, I am a lot stronger, calmer and kinder now.

    Thanks again for sharing your knowledge on this,

  2. PaperGirl said

    Dear Jenelle:

    I’m right here with you, girl. There is no alternative but to stay positive. I’m looking down the barrel of surgery and I’m scared but refusing to wallow.

    This is life on life’s terms — and I have always loved my life.

    Hope you’re feeling good today.


  3. wolwap said

    wow. This post was great. Everything I have been thinking about over the last few weeks about a surgery I am having in 2 weeks. At the very moment I am upset and freaking out, but you know what, “It’s ok.” I am allowed and this post made me feel so much better about my Crohn’s situation and my inevitable colon resectioning.

  4. Jenelle said

    I’m so glad you found it helpful! There are definitely a lot of ups and downs, but somehow you’ll get through it. Best of luck with the surgery!

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