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 it here.

Also, if you are in Leeds, UK there will be an event 6 November 2024. Please see below:

#ChronicallyMe: Social media tales of chronic illness

 

An ESRC Festival of Social Science event led by Dr Lucy Prodgers, Leeds Institute of Health Sciences, and featuring dancer-choreographer Shivani Jatar.

 

Wednesday 6th November, 7-9pm, St George’s Conference Centre, Leeds

Booking essential

 

Join us for #ChronicallyMe, a deep dive into the power of sharing illness stories on social media. This public engagement event will blend interactive activities, talks and short poetry-dance performances to explore how online platforms can be a vital source of support for those living with long-term health conditions.

 

The event itself is free, but tickets must be booked in advance and are limited. Go to https://www.tickettailor.com/events/universityofleeds42/1390234. 

 

If you have any queries about this event, please contact Lucy Prodgers: l.prodgers@leeds.ac.uk.

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"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.  

Are Clinical Trials Necessary?? *Repost*

The simple answer?  Yes.

First of all, what ARE "clinical trials" anyway? Again, simply put, is where people volunteer for tests to help researchers investigate new treatments for a wide variety of diseases or medical conditions.
They could be looking for how people respond to a new drug or maybe the side effects.
It also could be they are comparing existing drugs to new factors in a patient's life. Clinical trials cover a wide variety of situations from new drugs or vaccines, or maybe surgical or even behavioral changes.

The World Health Organization (WHO) defines a clinical trial as:

‘any research study that prospectively assigns human participants or groups of humans to one or more health-related interventions to evaluate the effects on health outcomes’ 

Think of where we would be without clinical trials. Without the volunteers. Animals, labs and computer simulations can only go so far. Nothing compares to testing with the human body itself. Imagine diseases or conditions like, heart disease, cancer, Alzheimer's, Parkinson's, Crohn's/colitis and now Covid-19 WITHOUT those clinical trials. More people are alive today, or living better lives, not only because of those scientists and researchers working hard behind the scenes to bring new treatments forward, but also those volunteering for clinical trials.

Let's take me for example. I was on Remicade (800 mg) every 6 weeks. Recommended dosage is 5 mg/kg, meaning 5 milligrams of Remicade for every kilogram of the patient's weight. So I was at about 10 mg/kg because I had an ongoing problem with fistulating perianal disease. My body eventually developed antibodies to the medication and was taken off it after 8 years.  I was put on Humira for two years until a forced Government non-medical switch to the Humira biosimilar.

I remember back in early 2000/2001, my gastroenterologist telling me about Remicade and asking if I wanted to be part of possible clinical trials. After discussing it in length about it, I declined. My Crohn's at the time was 'manageable' and to be honest, I was scared, even though my doctor said that from what she'd heard and read, the drug looked promising. I was worried about possible side effects, but that was more than 20 years ago.

In hindsight, I wish I had taken her advice and done it. I eventually made the decision to get the Remicade infusions many years later. I was on Remicade for 8 years and it was a "godsend", for me. I regret my decision so many years ago. I could have been part of the initial study and had the benefits from it earlier.

Researchers and scientists are constantly trying to improve life for crohn's/colitis sufferers. Whether that be by improving on current treatments or coming up with new ones. Clinical trials are happening all the time. Your doctor would know of any current trials going on or coming up but also search your country's Crohn's and colitis foundations. Many will have links on their websites to pre-screening. You might get declined, but it just means you don't meet their criteria, don't let this discourage you. I've been declined numerous times for various reasons.

The more patients who are willing to participate in clinical trials, the better the research

Skin Conditions

I have had another article published on inflammatoryboweldisease.net about skin conditions with Crohn's. 

Come read it here:

Skin Conditions

Visit inflammatoryboweldisease.net for more articles regarding IBD

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My Surgical Journey

I have had another article published on inflammatoryboweldisease.net about my surgical journey with Crohn's. 

Come read it here:

My Surgical Journey

Visit inflammatoryboweldisease.net for more articles regarding IBD

Crohn's Flare-Friendly Foods

I have had another article published on inflammatoryboweldisease.net about Crohn's flare-friendly foods. 

Come read it here:

Flare Friendly Foods

Visit inflammatoryboweldisease.net for more articles regarding IBD

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First Gastroenterology Appointment??

I have had another article published on inflammatoryboweldisease.net about what to expect at your first gastroenterology appointment. 

Come read it here:

What to expect at your first gastroenterology appointment

Visit inflammatoryboweldisease.net for more articles regarding IBD

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Prednisone Dependence?

I have had another article published on inflammatoryboweldisease.net about prednisone use. 

Come read it here:

Dependent on Prednisone

Visit inflammatoryboweldisease.net for more articles regarding IBD.

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Ask Me Anything

As part of Crohn's and Colitis Awareness Week. Tonight from 630-730 pm EST on Inflammatoryboweldisease.net I will be taking part in an "Ask Me Anything" session regarding Crohn's disease.  Have a question? Come by and take part. Hopefully, I can answer your question.