Men, Social Media and Inflammatory Bowel Disease: A Study

Back in 2019 I received an email from a PhD student (Lucy Prodgers) from the University of Leeds in the United Kingdom inviting me to take part in a study called "Men, Social Media and Inflammatory Bowel Disease". Normally I don't participate in things like this because some of these are just scams, etc. but in this case the PhD student is also a Crohn's patient and, to be honest, I was intrigued by the concept.

The study, with me and two other men, was in two parts, the analysis of my publicly available social media and blog posts specifically related to IBD followed by an interview with her to learn more about my experiences with IBD, blogging and social media use.

I did not have to do anything for the first part, just needed to give her permission to go through, and use, my social media and blog posts pertaining to IBD. The second part, the interview, was not as stressful as I was anticipating. This was almost 3 years after my initial contact with Lucy but the interview was not stressful and in fact was like I was speaking to a friend. Very fluid and comfortable. So much so, I contacted her supervisor complimenting Lucy. I found her "take" on my postings, including pictures, very intriguing and fascinating as I had never realized how others perceived my posts. I actually never thought about it before and was interesting to me.

Now, 5 years after the initial contact, her study, “How Do Men Who Post Publicly on Social Media Author Themselves and Their Experiences of Crohn’s Disease? A Dialogical Analysis of Three Cases”, is available online.

You can read the study here.

.

"Well, That's Not Very Ladylike" A Memoir

 I recently finished a very heartfelt book (written by my good friend Jennifer Lock) about the struggles, the tears and triumphs with living with a chronic illness along with mental illness. It is very well written with a good sense of humor. 

I have known Jenni for many years and we have talked and supported each other through these years, even though we have never met, but even I never realized the struggle and pain she was having. One chapter had me almost in tears. This will give you and understanding what someone with a chronic illness goes through. Crohn's disease is so much more than a bowel disease and everyone who reads this book will get that understanding.

You will read about Crohn's disease, fibromyalgia, mental illness and suicidal tendencies and the struggle to deal with coming out of it all.

This book can be found online on Amazon, Barnes and Noble, ImagineWePublishers, etc.

A must read for anyone with a chronic illness.

Ostomy Awareness Day

It was 4 years ago this month that I had my second ostomy surgery. I had a temporary loop ileostomy in September to divert stool from my rectum so my perianal disease could heal. I was suppose to have this temporary one for a few months but I was losing too much liquid and my kidneys couldn't keep up. I was in "acute kidney failure" according to the ER doctor. I had a GFR of 4 and creatinine of over 1300 (a normal GFR is 60 and over and a normal creatinine 0.07-1.3 mg/dL) and was admitted to hospital in the hope to get my kidneys back to a point where we could finish the permanent ostomy/proctectomy surgery. Sooner than what my colorectal surgeon wanted but the perianal disease was healing nicely. It took two weeks in hospital for my kidneys to recover (thank goodness) to a point where my colorectal surgeon was comfortable enough to do the surgery.

It took 6 hours but that was because my surgeon painstakingly, millimeter by millimeter, separated my intestines from my abdominal wall that were attached from the dozens of previous abdominal surgeries. Too much scar tissue. I was in hospital for a month and 9 days for the temporary ostomy.

On this Ostomy Awareness Day and personally my 4 year "stomaversary", I can honestly say that I do not regret in any way getting the ostomy even though I had been avoiding it for almost a decade. I had been living in pain for 32 years (1988-2020) prior to the surgery and to be honest it is a strange feeling NOT feeling or expecting pain. There is also no more rushing to the toilet anymore. I have a new normal that took getting used to but totally doable and I have more freedom with the ostomy.

I would be remiss not thanking everyone who has been there for me over the many many years and their love and support, especially my wife and kids, but also the many nurses and health care providers who have a thankless job in my opinion and are not paid nearly enough.

Finally, my colorectal surgeon who has done an amazing job with the surgeries I have had with her. Not only is she an awesome surgeon, she is very personable and listens to my concerns without judgement which I am sure many of us have experienced the opposite. I cannot thank everyone enough.

My only regret..... I did not do the surgery sooner.