To get more information about this surgerical option, check out these two previous videos:

Video Glossary: What is a Kock pouch and BCIR?

Patient talks about BCIR

In this video, a woman who recently had surgery shows the tools she uses to empty her BCIR. She does not, however, show the emptying process. If you watch the two videos linked in this post, and then her video, you should be able to imagine how this pouch is emptied.

If you have questions about the BCIR, don’t ask us: visit Vanessa’s YouTube channel and contact her there.

Keep fighting,
~Dennis

Question:: Do you have a BCIR or K-pouch? Tell us how you empty the pouch and manage it.

Last week I talked about what it means to be a PhD student in the social sciences, and what this stage of schooling looks like. I’ve mentioned before that I am studying health communication, but I find that this term is incredibly vague. Today I will talk about what health communication research is, and what it means to me.

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Keep fighting,
~Dennis

Setting the course

When I moved to Texas, following my permanent ileostomy surgery back in September, I ended back in the hospital within four days of my arrival. I was so sick at the time and did not even have the chance to find new doctors yet. I was overwhelmed with the Texas system along with having to relay all my advanced and extensive medical history to doctors I just met. Having to arrange for medical records from Wisconsin to be faxed here, and make dozens of phone calls with my surgeon in Wisconsin, only to find out there are doctors here unwilling to treat you because you were not in their insurance network. This all made for a very stressful and anxiety ridden 10 day hospital stay. Looking back, it was a strange blessing in disguise because I was forced to expedite everything in such a hurry that in a very short time upon arriving, everything was transferred here.

During the stay at the hospital, I was under the care of a GI doctor by the name of Dr. Rassa Shahidzadeh whom I immediately liked and trusted. During the 10 days, I spent long hours going over my health history and all the background of my illness with him, and and felt very comfortable with how he handled my treatment. When I was discharged from the hospital, I was told to follow-up with Dr. S, but unfortunately he was out of my insurance network and I was told to find another GI. I cannot describe the bitter disappointment. It was so frustrating to find a new doctor, go through all the background on my disease with him only to find that I could not see him post-hospital stay. It was a big letdown to say the least. So the search began to find a new doctor in my network.

When one door closes, another opens

It took some digging but I did find a doctor by the name of Dr. Balachandar. I set up an appointment to meet. Our meeting was very successful and I walked out of her office almost high with excitement and relief. She was wonderful to me; an excellent fit. And suddenly all the worry, all the anxiety and all the frustration led to this one moment and all I felt was an incredible weight lifted off my shoulders. Her demeanor and willingness to want to learn about my condition and history was inviting and open. Her gentle nature was very fitting with my personality, and she is good at explaining things. I ask a lot of questions, and I am grateful that she not only answers them all, but she gives thorough explanations and more than what I even asked for. She didn’t hurry me through the appointment like I have experienced in the past. Since I had to leave such great doctors behind in Wisconsin, it was a big relief to finally call Dr. Balachandar mine.

A lot has happened since I moved to Texas–some good and some not so good. But for the most part my health has improved considerably, and I am grateful that my better days are numbering more and more. Recently I had a small setback and ended up in the ER for a brief stay. My illness flared, and not only did it affect my tummy, it went into my joints. I had a follow-up with Dr. B this past Monday, and when I left her office it occurred to me while walking out to my car, that I had such a peaceful feeling. I always get so worked up about everything and somehow, someway this doctor calmed my fears. I was actually relaxed. Her interesting mix of modern medicine and Ayurveda healing practices are a welcome change to what I was used to before.

This is how it was it was meant to be

It is very difficult to leave trusted physicians who have walked along your path through so many trials of a chronic illness. It is harder yet to find another doctor willing to take on where those doctors left off, someone open to face the challenge of a complicated patient. I am grateful to have found such a doctor. It’s strange how things happen and when you step back you realize that maybe THIS ALL IS EXACTLY the way it was supposed to be, that every step on my path led me to this place, at this time of my life. These are the people I was supposed to meet. These are the people I am supposed to be with. I had to let go of some, but I gained others. It is kind of profound to think about how life leads you to people and places that are meant to come your way and you don’t even know it yet. It’s as if that invisible red thread has already sewn together the people you are meant to meet on this hidden life line, those who pass through your life temporarily and those who stay.

“An invisible red thread connects those who are destined to meet, regardless of time, place, or circumstance. The thread may stretch or tangle, but will never break.” ~An ancient Chinese belief

~Nadia

Question: Have you established a good relationship with your doctor? Have you had to change doctors?

Iris had no issues this time around, so that was great. She filmed the pouchoscopy as it was happening: for those of you who are more interested in the biological part of medicine, you’ll enjoy the middle of this video. Be forewarned: there is some graphic material! She didn’t have to do any prep before the pouchoscopy, so her pouch has some stool in it.

If this video ever gets flagged on YouTube for graphic content, create a YouTube account verifying you are over 18 and sign-in to watch the video.

Keep fighting,
~Dennis

These belts are pricy, but they also seem to offer some protection to your stoma if you play really rough. There are, of course, a variety of belts and wraps out there that are much cheaper, for those of you who don’t need a shield around your ostomy and can protect it fine on your own.

Keep fighting,
~Dennis

My second semester of my doctorate program recently began, but instead of talking vaguely about how school is going, and I want to get specific. What exactly is involved with getting a PhD, especially in something as nebulous as communication? When I tell my friends or coworkers or family or people I meet that I’m working on a PhD, I usually get three responses: slight awe for earning an advanced degree, followed closely by thinly veiled revulsion that I actually chose to go to more school, and then confusion: what does a person do to get a PhD.

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Keep fighting,
~Dennis

The Equalizer seems like a pretty handy product for getting a tight seal on your ostomy flange. However, at $34 it is significantly overpriced: it’s just a short length of clear plastic tubing, after all. You could go to any hardware store and buy a small length of plastic pipe that does the same thing: just look in the plumbing section (check out this short length of plastic pipe at Lowes for $0.61!). Just measure the width of your appliance (the ring, so you know how much space you have around your stoma), stroll through the plumbing section, and basically get a useful appliance tool for pennies.

Keep fighting,
~Dennis

“Give your stress wings and let it fly away.” ~Terri Guillemets

~Nadia

If you have any questions for Sara, please visit her YouTube channel. She is not an official contributor to this blog so if you leave questions for her here they won’t be answered.

Keep fighting,
~Dennis

To get a sense of how this year compared with previous years, check out these previous update videos:

One year J-pouch update

Scars after one year

Two year J-pouch update

Scars after two years

Keep fighting,
~Dennis