My Crohn's Jigsaw

[highlandsrock]

I have written a book about my experiences with Crohn's and its EIMs. It's called "Crohn's Disease - Wrestling The Octopus" (after the surgeon's description of my intestines in 2010) and I'm aiming to publish it in 2020. In the meantime I have condensed the story into this jigsaw diagram. I hope it might spark some interest. I find it useful when meeting a new HCP as they can get an overvew of the patient sitting before them rather than wade through reams of notes

 

[paulk]

Very interesting. How was the med free remission from 2011 - 2018 induced?

 

[highlandsrock]

After the ileostomy/reversal they would usually prescribe a maintenance dose of Azathioprine. As I cannot take it I was on no Crohn's drugs at all
so the answer to "what induced remission" can only be surgery!

 

[Dyana]

WOW- That took some TIME
I don't know some of the terms used- sorry
What is Banding 2012-2014 and BAM 2014

 

[highlandsrock]

BAM - Bile Acid Malabsorption (also known as BSM - bile salt malabsorption or BAD - bile acid diarrhea) due to the removal of my terminal ileum

Banding - also known as Variceal Banding and, in my case, is the placing of rubber bands around veins which have grown on the surface of my esophagus

 

[DDA]

I have written a book about my experiences with Crohn's and its EIMs. It's called "Crohn's Disease - Wrestling The Octopus" (after the surgeon's description of my intestines in 2010) and I'm aiming to publish it in 2020. In the meantime I have condensed the story into this jigsaw diagram. I hope it might spark some interest. I find it useful when meeting a new HCP as they can get an overvew of the patient sitting before them rather than wade through reams of notes


View attachment 3933

what D level do you maintain? have you ever used butyrate?

 

[DDA]

I have written a book about my experiences with Crohn's and its EIMs. It's called "Crohn's Disease - Wrestling The Octopus" (after the surgeon's description of my intestines in 2010) and I'm aiming to publish it in 2020. In the meantime I have condensed the story into this jigsaw diagram. I hope it might spark some interest. I find it useful when meeting a new HCP as they can get an overvew of the patient sitting before them rather than wade through reams of notes


View attachment 3933

what vitamin D level do you maintain?

 

[paulk]

I am looking forward to your book. What audience is it directed to? Is this for readers who already have Crohn's to help them with the treatment or is it more to general audience. When I was diagnosed I read one book about Crohn's. It wasn't much about the treatment but about life in general with the disease. About the missed appointments, problems with work, parenting, the need to be always aware where the washrooms are....don't remember the title, but will look.

 

[highlandsrock]

what vitamin D level do you maintain?

I don't know TBH. Can't find my last set of blood test results. I don't know what Butyrate is

 

[highlandsrock]

I am looking forward to your book. What audience is it directed to? Is this for readers who already have Crohn's to help them with the treatment or is it more to general audience. When I was diagnosed I read one book about Crohn's. It wasn't much about the treatment but about life in general with the disease. About the missed appointments, problems with work, parenting, the need to be always aware where the washrooms are....don't remember the title, but will look.

Haven't actually written down who my target audience is. I'd say it is for other patients, either newly diagnosed or old hands, and medical professionals to see how the disease can affect one's QOL and how I have coped with the various novel experiences along the way. It explains how I got from the Crohn's appearing in 1977 up to the present. In recent years the EIMs have been a larger part of my experience so I've experienced different tests/procedures than just those expected with "just" Crohn's.

 

[DDA]

I don't know TBH. Can't find my last set of blood test results. I don't know what Butyrate is

you can follow me on Instagram, and message me its Sol_sleep, i dont want to get removed by answering your questions.

 

[highlandsrock]

I'm happy with the medications I am on and not looking to change

 

[DDA]

Prednisone? as long as you are happy, I wish you well. I will eventually be releasing my crohns e book on my website, and several podcasts, if you are interested. Keep in mind IBD is closely associated with cancer, and thats why you may want to know, and monitor an evolutionary vitamin D level.