Book Review – “Managing IBD” by Jenna Farmer

“Managing IBD – A balanced guide to Inflammatory Bowel Disease” by Jenna Farmer. Published by Hammersmith Health Books. 161 pagesBook reviewing is a brand new experience for me; unfortunately IBD isn’t and that was one of the reasons I was keen to review this book.
When it arrived I eagerly opened the packet and immediately turned to the back cover to read the synopsis. I tend to be somewhat cynical about those words on every book cover that are written to entice the potential reader to part with their cash but, having read the book, these ones very neatly sums up the content and style. The subtitle for the book is “A balanced guide…” and I believe Jenna has achieved her aim. By the end of the book I can honestly say I had learnt a lot about a range of subjects that I have tended to ignore or gloss over in the past. It has also reinforced just how differently each of us experiences IBD.

The book starts with the Introduction and Jenna has wisely avoided quoting swathes of statistics about IBD, that’s not what this book is about. The Introduction does contain is the “hook”. Why did it take a move to China for the author to be diagnosed and what was she doing so far from home? You have to read on to satisfy your curiosity. The description of the hospital in China is enlightening, maybe shocking. I’ll say no more. It’s a sad endictment of the continued lack of IBD awareness within some of the UK medical profession that it took the move to a country thousands of miles away to be finally diagnosed with Crohn’s disease.

The main body of the book is broken down into five sections. The first section is entitled “Adjusting to Life with IBD” and starts with diagnosis and some of the symptoms you might experience. It then goes on to briefly describe the usual tests patients undergo and gives tips on how to cope with the most common of these, the colonoscopy. Never a pleasant experience, but a neccessity.
The chapters move on to run through some of the many theories of what causes IBD and left me questionning whether we are any closer to knowing what causes the disease than we were when I was first diagnosed. There is however some hope that the new drugs being developed will at least enable IBD to be controlled in a better way. Jenna briefly runs through the main drugs currently used in treatment and then discusses surgery.

The one paragraph I do take issue with is the description of an ileostomy as involving “the removal of large colon”. The term ileostomy refers to diverting the small intestine through an opening in the abdomen and forming a stoma. It may only be a temporary measure whilst the colon is left intact to recover or heal. The small and large intestines can then rejoined in a “reversal” operation. Jenna points out that losing the final part of your small bowel impairs the body’s ability to absorb B12 and other vitamins but it’s important to add that it can also lead to another condition called bile acid malabsorption (BAM), a subject that many patients, and doctors, are unaware of.

Chapter 3 explains about finding support and lists some of the organisations that can provide it. The text then moves on to a subject that is often swept under the carpet – the affect of IBD on one’s mental health. The very nature of IBD with the uncertainty of its long term implications but also the short term, practical ones of “will I make it to the bathroom without an accident?”, will affect all sufferers to a greater or lesser extent. Jenna explains her own personal experience of anxiety and follows this with descriptions of some of the therapies that are available. These include Cognitive Behaviour Therapy, endorsed by the NHS for treating anxiety and depression. As for some of the other techniques? I will admit that I have long been sceptical that many are simply fancy names to describe natural mechanisms that we innately use. This is a generalisation and I am not commenting specifically on the two other techniques that Jenna mentions – Emotional Freedom Technique and Percussive Suggestion Technique.

Section 2 “Foods and Supplements” is where Jenna’s training as a nutrional therapist comes into it’s own and where I learned the most. Over the next four chapters she explores supplements, beneficial foods, staying hydrated and the role of food in managing IBD. Whilst what you eat isn’t going to cure your IBD (despite some of the more outlandish claims that appear on Facebook) it can make you feel a lot more comfortable and give you better control over the symptoms.It’s an easy to read section which demystified many of the terms I have seen mentioned on social media or in blogs. So that’s what a Paleo diet is! I didn’t know that there are two types of fibre! The only suggestion that didn’t convince me was the idea of using sauerkraut as a probiotic, not because I doubt it’s efficacy but the thought of eating fermented cabbage….

Section 3 “Living Life to the Full with IBD” is all about QOL (Quality of Life) which for I consider is the most important measure of how well your condition is being managed. This section covers work, travel, exercise, socialising and the all to frequent hospital visits. The chapter on travel is full of tips on how to make travel more manageable. It could only have been written by someone who has experienced it themselves. I certainly wouldn’t have thought to ask some of the questions Jenna does when preparing for a trip.
The penultimate section is entitled “Other Possible Approaches” which briefly explores alternative therapies and concludes with a very useful 24 hour self care plan for when you are suffering from that inevitable flare-up. The final section pulls together the references and links from earlier chapters to enable readers to do further research.

Throughout the book the text is interspersed with accounts from other patients about their own experiences and some are bound to strike a chord with the reader. I say some because, as I wrote earlier, we all experience IBD in our unique way. If you’ve recently been diagnosed with IBD, or know someone who has, then this is an excellent, non-sensational book that gives a balanced overview of living and coping with IBD on a daily basis. It’s an optimistic book that suggests practical ways of making life with IBD more bearable.

Recommended.

 

 

Should It Stay or Should It Go?

At the end of April I recorded a visit to London to see my gastro consultant (see post “50 Shades of Grey”). We discussed the “blip” last February  when I turned yellow. The keywords being – local A&E, jaundice, gallstones. There was the added complication that my local hospital was taking care of this issue. Split responsibilities and patient records tend to slow the treatment process down.

Back in November 2016, at my annual Upper GI endoscopy, I had asked if it would be a good idea to have another Fibroscan, a specialist ultrasound scan that measures liver stiffness (cirrhosis). The last one had been in November 2012 and it would be nice to know if there had been further deterioration. It was agreed that it would be a good idea but the request form was never issued.

The need to know about worsening cirrhosis had now become more urgent. My gastro filled in the request form as I watched. A few days later the appointment came through – 4th September. That long? Four months just for a very simple 5 minute test?

Friday 7th July 2017 – East Surrey Hospital Outpatients

When the “blip” happened I had gone down to our local A&E and spent the night there being monitored. Afterwards there was a follow-up appointment with an upper GI consultant locally (see post called “Time Bomb No.2, please” – April 2017). A further ultrasound scan was ordered and he said he would be happy to see me again to discuss the results. The scan took place on 12th May, the day NHS IT systems were hit by a virus. Usually I would expect to take a copy of the report away with me but not this time. I let a month go by then asked my GP surgery if they had seen the missing report. No, but a day later they had obtained a copy and rang me to let me know. (They provide an exceptional service)

The report stated “could suggest chronic cholecystitis” (inflammation of the gallbladder). Dr. Google was divided upon this condition. Some sites declared it serious and in need of treatment straight away; others said that if the patient was asymptomatic then it could be left alone. I rang the consultant’s secretary and she organised the follow-up appointment for 7th July.

(I had been under the impression, after the first appointment, that the consultant was going to discuss the case with my “doctor” (gastro consultant at GSTT) and would make a direct referral to Kings College Hospital Liver Unit. Wrong on both counts. The “doctor” he meant was my GP and the referral would be made via the GP after the follow-up scan. Doh! I had assumed that the process was already under way.)

I asked him specifically what concerns he had that would require surgery to be carried out in a specialist liver unit. He replied that they were : liver cirrhosis, low platelets, the adhesions from previous laparatomies and a possible bleed. No arguing with that. He also said that if I had a recurrence of the jaundice or pain in a specific area then I should go to our local A&E and they would take the decision on whether to treat me or transport me to London. We left it that a letter would be sent to my GP asking him to make the necessary arrangements. I thought it might be best to discuss it with my GP rather than just let the process take its course.

In the meantime I wanted to find out if there were any other hospitals I should consider along with KCH so I posted a question on FB in the PSC and BAM support forums. A number of other units were suggested but KCH came out well and it would be easier for me to get to.  Then I was recommended a consultant who works between St.Thomas’ and KCH. This would be the best of both worlds as they would have access to all my medical notes. I now had a name and contact details for the doctor I want to be referred to.

Tuesday 19th July 2017

My GP rang  this afternoon and we agreed that he would put the referral process in motion. He was of the opinion that this could have been done hospital to hospital.

Whilst I’m feeling fit and in no pain then I’m quite happy to leave the gallbladder well alone but I want to be prepared in case it all starts to go wrong.  It should be an interesting conversation with the consultant/surgeon as to his recommended way forward, especially when we start to discuss complicating factors – the minor annoyances of PVT, PSC, Splenomagely, thrombocytopenia and BAM.  I’m sure he would be interested in the results of the Fibroscan.

(That’s quite a list of complicating factors. As I’ve mentioned before it could well be a winning hand in “chronic condition top trumps”)