Jim Miller, a member of iHaveUC, has just released an incredible e-book that goes through the A to Z of UC. His book provides a huge amount of detail about living with and managing the disease and covers his personal story from diagnosis to medications, alternative treatments and eventual j pouch surgery.
This unique guide has been written by a UC patient specifically for other UC patients and is available exclusively at iHaveUC!
A bit of about me
I live near London in the UK with my wife and two crazy kids. I’m 38 and a pretty normal guy. When I’m not writing I work as a management consultant for a big corporate. Sounds nice and normal eh? Even a bit boring? Well the last few years have been far from dull for me – thanks to a rampant case of UC.
I spent the past 5 years fighting this tough disease and rode the UC rollercoaster on the extra-fast setting. My disease was so relentless that I packed in a lot of experience in those 5 years. I went to some dark places I can tell you. There were some real dips on that rollercoaster track and at one point I almost crashed completely. But eventually I came out on top, healthier and happier.
Of course, I wasn’t left exactly intact. I ended the journey with a nice colon shaped hole in my life. But at the same time I lost my large intestine I also said goodbye to UC. For good.
Me and UC
I was diagnosed in 2010, after experiencing the usual symptoms. Plenty of bleeding and a jaw dropping amount of toilet action. I became a champion pooper, I really did.
Anyway, I was pretty spun out by this diagnosis. I’d never heard of UC and my first GI scared me witless when he told me I had a life-long auto-immune condition (we all think these horrible diseases happen to someone else). I was scared and confused, especially as my symptoms were so severe.
There was no genetic history of IBD in my family and although I can’t be sure, I believe my disease was triggered by severe food poisoning and heavy use of antibiotics. Of course, I can’t prove this but these events really messed up my natural gut bacteria.
I started the usual medications, but nothing worked. I entered into a constant flare and never saw remission over the course of 5 years. Steroids dampened down the worst symptoms, but I ended up dependent on these. After a couple of years the steroids had turned me into a slightly fat, angry toilet troll, with early signs of osteoporosis. I wasn’t a happy boy.
My experience with the standard UC medicines left me disappointed. So I turned my attention to alternative options. As you probably know us UC’ers do like to try non-medical treatments, basically because the drugs are not always as effective as we’d like them to be.
Over the years I had some success with changing my diet and taking natural supplements as well as probiotic options (I’m a big fan of boosting natural bacteria!). I also tried fecal transplants (the Human poop probiotic), which was an ‘interesting’ experience!
Even though some of these alternatives helped soothe my symptoms, I still continued to suffer. Unfortunately my brand of UC was super aggressive.
Suffering 24/7 from pain, blood loss and fatigue takes its toll on your body, but it can also have a major psychological impact. Over time I became pretty depressed about my situation and deeply unhappy there seemed to be no end to my flaring.
Fortunately, with the support of my family I started to realise that the one thing I could control was my mental state, even when my body was totally ruined. So I invested a lot of time in developing a more positive way of thinking. Some people call this process ‘mindfulness’ but whatever it is, getting to grips with my mental state was a real triumph that helped get me through the toughest time of my life.
In fact, this new positive attitude helped me make the most difficult decision I’ve ever been faced with – surgery. Back in 2014, although I didn’t realise it, UC was playing its end game with me and was quietly shutting my colon down. On the very day I was admitted for surgery my colon perforated and my surgeon saved my life. If I hadn’t taken this decision at that exact moment then things could have been very different for me.
So here I am, one year later. Instead of a colon I have a fully functioning j pouch. I’m happy, healthy, a little wiser, and a little lighter for the experience. Above all, my story is testament to the fact that even when things are really bad, UC is not the end of the world.
Why I wrote the guide
The reason I wrote The Insider’s Guide to UC is simple. When I typed ‘I have UC’ into Google 5 years ago I wanted to find a guide book to the disease. Specifically I wanted to read something written by people with first-hand experience of UC, rather than dry information produced by the medical establishment. I couldn’t find anything. So being slightly crazy, I decided to write it!
Over the course of 5 years I had collected a lot of research on UC, tried a lot of treatments and had recorded my personal journey from diagnosis to eventual j pouch surgery. Putting this into a guide to help others seemed to be a no-brainer.
What’s in the guide?
The guide begins with a detailed account of my battle with UC. My story is just one amongst many, but we all have a ‘UC origin tale’ to tell. I’m a firm believer in UC’ers sharing their stories.
The guide itself is a UC manual and covers just about every aspect of the disease in an easy-to-read format. There is no jargon here. It’s written in plain English by a normal UC’er for normal UC’ers (as well as the many people who love, live with and look after UC’ers!)
This is what you can expect:
- The UC 101 (everything you need to know about the disease)
- The colon: what is it and why you need it
- What exactly is UC?: theories and causes
- Types of UC: from mild to severe
- The cycle of remission and relapse
- Who gets UC?
- Outlook & rare complications
- Jim’s A to Z of UC symptoms: the lowdown on just about every single possible UC symptom
- How doctors diagnose UC
- What to except from a colonoscopy
- Medical treatment: an overview of the main drugs
- Anti-inflammatory drugs: including aminosalicylates and steroids
- Immune system suppressors: including Imuran, Methotrexate, Cyclosporine and Tacrolimus
- Biologic immunosuppressants: including Adalimumab, Remicade and Vedolizumab
- Alternative treatment options: the many non-medical options followed by UC’ers
- UC diet: including the Specific Carbohydrate Diet™
- Supplements: vitamins, minerals, and natural anti-inflammatories
- Probiotics: what you need to know about off-the-shelf brands and natural sources
- The Human Probiotic: otherwise known as fecal implants
- Helminthic therapy: the weird world of gut parasites
- Living with UC: 9 strategies to help you survive and thrive, including emotional management and day-to-day tips and tricks
- Surgery: a last resort or life regained?
- Making a decision
- What is involved?
- The step-by-step process to a fully functioning j-pouch
As you can see I’ve packed a lot of into the guide. About 55,000 words and 140 pages of great UC information!
If you decide to get a copy of the guide I hope you enjoy it and find it useful. I’ve poured my heart and soul in to it to make sure it is comprehensive as possible. You can download it in PDF format and feel free to forward it to friends or family with UC.
I’d love to hear your feedback. You can review the book or get in touch with Adam of iHaveUC and he’ll pass on your comments.
Anyway, thanks for reading my post and I wish you all the best of luck and the best of health on your personal UC rollercoaster ride!