Sunday, 19 January 2014

My Crohn's Story - A Labour of Love

What started as a simple blog has grown into my Crohn's Story.

Consultants would often ask me "when were you first diagnosed with Crohn's?" or "what exactly did they do during that first operation?"

I did some research into my diverse medical records and decided to compile a medical history. It has become a labour of love, some might say obsession, but I have finally covered the period from 1978, when I found out the name of what was afflicting me, to the relatively quiet time as we enter 2015.

If you are reading this as someone who is newly diagnosed with Crohn's/IBD I hope it shows that it is possible to have a normal life but you need to be prepared for some "surprises" along the way. For those who may be about to undergo surgery, for the first time, I hope it demystifies the process a little and prepares you for what lays ahead.

The links below will take you to the individual chapters. I am still in the process of honing each of these pages down to make them tell the story more succinctly. Some were written as they happened, in the true spirit of a blog, and I have marked these by adding the word DIARY after the titles.

Introduction - "I Never Intended to Start This"

Chapter 1 - "35 Years Ago - When It All Started (1978)"

Chapter 2 - "1979 to 2009 - The Quiet Before the Storm"

Chapter 3 - "2010 - You NEED an Operation"

Chapter 4 - "October 2010 - Ileostomy and Recovery" (DIARY)

Chapter 5 - "October to December 2010 - Learning To Live with a Stoma" (DIARY)

Chapter 6 - "January to May 2011 - Returning to Work with a Stoma" (DIARY)

Chapter 7 - "June 2011 - Reversal and Recovery" (DIARY)

Chapter 8 - "June 2012 - Bollocks! Back in Hospital Again" (DAIRY)

Chapter 9 - "Summer 2012 - Coming to terms with PVT" (DIARY)

Chapter 10 - "Autumn 2012 - From Variceal Banding towards a Liver Biopsy" (DIARY)

Chapter 11 - "Winter 2012 - Liver Biopsy and Bad Steroids" (DIARY)

Chapter 12 - "The Start of 2013 - Biopsy Results

Chapter 13 - "2013 - February to June - Trying to get Fit

Chapter 14 - "Summer/Autumn 2013 - Bone Marrow Biopsy I

Chapter 15 - "Crohn's, Azathioprine and Low Platelet Count"

Appendix 1 - "The A to Z of my Crohn's Journey"

Appendix 2 - "Medical Records - Trying to make Sense of 30 Years+"

Appendix 3 - "Top Tips for Hospital Survival"

Appendix 4 - "Managing Consultants and Appointments"