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Archive for the ‘Coping/Support’ Category

She’s Running So Your Intestines Don’t

Posted by Eric on December 29, 2008

jpouch.netJanuary 25th is just around the corner and with it comes the Team Challenge half marathon to benefit the CCFA (Crohn’s and Colitis Foundation of America). Stephanie has already shared her story and asked for your help. Here is another runner, Julie N.:

Why am I running to support the Crohn’s and Colitis Foundation of America? Crohn’s disease and colitis are painful diseases of the digestive tract that affect 1.4 million American adults and 150,000 children. Among that 1.4 million Americans is my husband and members of our family.

Andy likes my idea for a slogan: “I’m running, so his intestine doesn’t.” That seemed a little much for the headline for the webpage though.

If you haven’t already donated to this worthwhile cause, please consider doing so now. If you have, thanks, and here’s a way to get the word out to others.

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On the John: Crapping Robot Toilet Paper Holder

Posted by Eric on December 20, 2008

I promise that all of my posts won’t be about the toilet, the bathroom, or a combination thereof. With that in mind, I’ve created a “segment” here at Jpouch Life called “on the john.” Hey, we do spend a lot of time in the bathroom, so why not make the most of it?

This awesome toilet paper holder is written up at boingboing as managing “to signal your literacy, robophilia, and deep commitment to bowel evacuation, all in one simple package.”

[Link]

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The Daily Stool Count, Joe’s Goals

Posted by Eric on December 12, 2008

Joes Goals

Joes Goals

A fellow J-poucher, Dennis, who we introduced to you back in October of this year, has just successfully completed the J pouch operation! Congrats to Dennis from everyone here at UC Story.
Dennis mentions something in a recent post on his vlog:

And I’m starting a new feature for the next couple months: the Daily Stool Count. People seem really interested in how frequent and urgent j-pouches are, so keep watching as I keep that tally every day.

This reminded me how obsessed with numbers I am, so I dug through my files and was reminded of a great website, Joe’s Goals. Joe’s is designed to help you keep track of things like exercise and food intake. There’s a spot for inputting your own notes, and an easy way to keep count of your goals. I’ve used it off and on for a year or so, and while it’s not something I’ve used consistently, it might be an easy way to track your progress fresh out of surgery.

As far as my count is concerned, the first night in the hospital after takedown was zero, the next was 15 trips to the bathroom, and the rest are up on the graph posted above. You can see they leveled off rather quickly, and I’m still averaging 6-8. (I have a very strong liking for red wine, and having a few glasses seems to affect consistency but not numbers.) Hope this helps!

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Coping

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.

Posted in Coping/Support, Ileostomy, UC | 4 Comments »