Knowledge and learning

If there’s one thing you can say about people with Crohn’s disease it’s that you know your body better than the average person. You know the difference between a niggle caused by something you know doesn’t agree with you and the start of a flare up, probably because at some point you’ve been filling in food diaries or a daily symptom checker, monitoring documents the nurse has given you to fill in, you also correlate patterns of activity in the hope you can find the pattern that will lead to you feeling marginally better , Do you? Or is that just me?

As I post my monthly blog on many Crohn’s forums, increasingly I come across people who don’t know how to access the power in their own knowledge. They are blindingly eating foods that aggravate their condition, or finding themselves lost in hospital administration. I’m always intrigued to hear other suffers stories and feel duty bound to sharing the knowledge I have gained over the twenty five years of having this disease.

It’s a privilege  to be able to use the IBDoc. Affirmation of the knowledge which significantly and categorically reduces my overall anxiety levels that every niggle is a sign of increased inflamtion. IBDoc shows me it’s not!  A real time example of the IBDoc in use was my recent stomach flu, which I detailed in my last blog. Seven weeks after the bug I’m only now getting back to “normal”. Over the course of that seven weeks my toilet actives increased significantly, as did my bloating and nausea; I’d sent a stool sample to my GP to check there wasn’t anything lingering, which came back normal. So I knew I had to just wait until my gut flora got back to its usual status. I’m now ready to begin the plan I had discussed with my nutritionist over seven weeks ago! The only problem is I have a holiday booked for France with the family in late August, so to stick or twist? I will be discussing this in detail in my next blog. If I didn’t have access to IBDoc I would have been convinced the stomach bug had caused a massive flare up, the result from my last IBDoc test was 40u/ug, which means a negative result’s, zero inflammation! The result from IBDoc meant I could have a relaxing weekend safe in the knowledge I wasn’t on the brink of a trip to A&E and I wouldn’t have to call my IBD nurse and wait for her response.

If you’re reading this blog. Clearly I am preaching to the converted as your research has brought you here. However I believe there is a significant proportion of our community that are still in the dark about many treatments, tests and diets that can help this wicked disease. Below are a few nuggets of knowledge it might be worth sharing from my journey. Keep sharing knowledge. Who knows? Between us, one day we’ll find the answer.

My knowledge networks:

http://www.crohns.org.uk/professor_hunter/professor-hunter-biography

Professor John Hunter is a Consultant Physician at Addenbrooke’s Hospital, Cambridge, visiting Professor of Medicine at the University of Cranfield and a recognised authority on diseases of the gut including Crohn’s Disease, Colitis and Irritable Bowel Syndrome. He has contributed over a hundred research papers to major medical journals including The Lancet, Nature and the British Medical Journal and is the author of Irritable Bowel Solutions, Inflammatory Bowel Disease and Solve Your Food Intolerance. 

I had the privilege of this man as my consultant. I learnt lots, not least the miracle that turned out to be cholestyramine, which cut my toilet visits down from ten a day to one!

http://www.crohnsmapvaccine.com/

Prof. Hermon-Taylor, together with Dr Tim Bull and other members of the team at St George’s University of London and scientists at the Jenner Institute University of Oxford, developed a modern DNA vaccine against MAP. This took 10 years and cost around £850,000, much of it donated by the families of Crohn’s patients, without whom this new vaccine would not exist.

https://humanpara.org/

This is a fantastic resource for all things MAP related; entirely self-funded, a real committed set of individuals whose contribution to Crohn’s research and support is phenomenal.

https://www.redhillbio.com/crohns-disease

RHB-104 is a potentially ground breaking, proprietary antibiotic combination therapy in oral capsule formulation, with potent intracellular, antimycobacterial and anti-inflammatory properties.

The best laid plans

In my last blog the stage was set; I’d had a really positive consultation with a nutritionist We discussed my IBD journey and what I wanted to achieve over the course of the coming months, which for reference was to improve the fatigue I have on a daily basis, also to improve the bloating and discomfort I suffer. I excitedly took receipt of the supplements the nutritionist suggested to begin with. I’d also etched out in the calendar the week for me to begin the food reintroductions: Wild salmon, white fish and finally coconut yogurt.

However, this plan was not to be well executed, in fact, almost a month after my consultation, the ship has not left the metaphorical dock. The reason being that a fortnight ago, I began to feel the usual Crohn’s symptoms, gurgle tummy, mild nausea, nothing of note, then as the evening progressed I knew this was something very different. Within the hour I was projectile vomiting every five minutes along with torrents of diarrhea. It got so bad at one stage I actually thought I was going to pass out.

At any given point in an average day my mind is in Crohn’s overdrive however at this point my mind has gone to hyper drive setting. Was it something I ate? Am I having a flare up? How can it be a flare up? I’ve not gone off diet?  Has my stricture worsened? IS MY SMALL BOWEL ABOUT TO BURST OPEN RIGHT NOW? But then, with the speed of a freight train, my whole family began to succumb to what I now had established was a bug! Not some minor league bug, but full on norovirus …the premier league of bugs!

It was mildly comical as we each dealt with the symptoms of the bug. The comedic value soon wore off though as the night progressed. Over the course of the next couple of days my symptoms had slightly improved, although the visits to the toilet had slowed I had aches and pains all over my body, bouts of nausea and a general feeling of lethargy. I noted that the recovery time of my wife and children were dramatically different to mine; they were all back to normal within 48 hours of the virus.

Almost eight days later, I’m still suffering from the virus, I do feel slightly better day by day so it looks like my gut flora might be in a state of flux?  This is where IBDoc comes in, without IBDoc I would be in a constant conversation with myself; Am I back to normal? Has the virus severely increased the inflammation?

I guess this is a great example of how life gets in the way of Crohn’s. This disease is a challenge when the waters of life are calm and Norovirus, a holiday or a business trip as examples, does not disrupt the routine of daily life. I’m desperate to begin the nutritionist plan but I have to remain calm and patient and not base my strategy on how do I feel, but once again rely on what IBDoc is telling me. Just like all great tech that integrates seamlessly into our lives, I have come to totally rely on IBDoc and the reassurance it offers.

As soon as I get my results from IBDoc, and assuming the calprotectin level is within “normal” range, I can once again begin the nutritionist plan. I hope to discuss this in my next blog.

A New Hope

Forgive me for the Star Wars line, but I’m sure it’s an emotion every Crohns sufferer has, right? A new treatment on the horizon, a new GI with a different approach, or a well-researched supplement that could help control the disease.

My last blog, in summary detailed my up and coming appointment with a well established Nutritionist. The goal I set myself was first to find a Nutritionist that had vast experience with Crohns and related symptoms, and be able to integrate IBDoc into this new plan. As I’m sure you are aware you simply need to Google “nutritionist” in your local area and pages upon pages of nutritionist will pop up. I had diligently researched this nutritionist so I didn’t find myself with a snake oil salesman.

Before I had my appointment, I was to fill in a detailed questionnaire about my general health and symptoms, Meds I’m currently taking, diet, exercise etc. so no stone was left unturned in the pre appointment details. I must admit I was a little anxious on meeting Helen, as I am before all appointments relating to my Crohns (Should I even call it “My Crohns”? like this disease is something precious to me). Anyway, Helen put my anxieties to rest immediately as she was kind, understanding and more importantly, she was on point and shared her vast knowledge with me regarding nutrition and how it can help with symptoms. She was incredibly impressed with IBDoc and the significant part it could play in the lives of Crohns patients.

We got to work straight away with a food reintroduction plan based largely on the LOFFLEX diet, which I have been on for five years. However, for the first week, Helen recommended digestive enzymes to see if they help with the undigested food in my stools. After the successful introduction of the digestive enzymes I am then over the course of a week going to begin introducing, salmon, then white fish (haddock or cod). If this is successful I am then going to introduce coconut milk yogurt… Hmmmm.

If I could successfully introduce the recommended supplements along with the salmon, white fish and coconut milk yogurt in to my diet it would dramatically change my day-to-day life, give me a little more freedom to have the option to eat out more often; I’m also hoping I will see an improvement in the fatigue and brain fog, and more importantly gives me hope there are other foods out there that I can add.

So how does this plan relate to IBDoc? If I didn’t have IBDoc I would be relying as I have for the previous five years on symptoms alone which I have found to be inconsistent and unreliable, which in tern has the knock on effect of me giving up on testing new foods. I am so fortunate to be able to integrate IBDoc into this new plan. My nutritionist thinks IBDoc will play a significant roll in the out come of the food introductions.

I will update you on my progress in my next post.

And remember, “ always pass on what you have learnt” – yoda

' A little bit of what you like will do you no harm.'

' A little bit of what you like will do you no harm.'

So, in follow up to my last post, you’ll be impressed to know I got through Easter without eating a single egg. Well I say that.... as I didn't eat a chicken egg, but I simply couldn't help scoffing half a chocolate egg late one night when the kids were in bed, as I didn't think they'd notice (they did!). Easter is a big deal at my house and family members come from far and wide, so trying to avoid its temptations is a task in itself, the odd dash of dressing, a mouthful of dessert, a nibble at the evening buffet. Oh the guilt! ' A little bit of what you like will do you no harm,’ my dear gran used to say. Oh, how wrong she was.

So in response, BOOM!! went my Calprotectin reaching 400 u/ug this month on only a little bit of cheating but often. 400 u/ug isn’t massively high, however, the result is double the range myself and my GI team are happy with. So it’s back to the diet. It usually takes around four days of strict diet to return to my “normal” Calprotectin range.

I have been reflecting on this result and remember it wasn’t so long ago that the general consensus within the GI community was that the food we eat had no direct relationship with CD, we now know through patient conversations and global communications that’s incorrect. But it’s also very individual. Let’s take egg as an example.  Some people can eat the yolk only, some people just the white, and some scrambled but never fried, mayonnaise anyone? Just in the humble egg there is no simple one rule fits all.

I often wonder how the last eight years of my life could have unfolded if I hadn’t the resources and where with all to find a GI (Professor Hunter) that had developed a diet (LOFFLEX), to control CD in the majority of cases. Once established, a patient can then re-introduce foods to test the response. Obviously, by reading my last post one can conclude that I’m hardly fighting fit, or running marathons, however, the alternative of multiple A&E visits, rounds of prednisone, hospital wards, constant pain and urgency doesn’t bare thinking about. I find it very difficult to remain on the LOFFLEX diet, and choosing egg as the embodiment of the difficulties of diet management with CD it’s not easy to make conclusions from reintroductions. I do know that garlic bloats my stomach to the point of looking like I'm pregnant. But the IBDoc results clearly shows it isn't increasing my inflammation levels. This is hugely important knowledge in self-management.

I'm grateful that IBDoc can show me what's happening. It gives me the motivation to rein it in. IBDoc very quickly gives me easy accessible answers to show me I'm doing harm. That it’s my actions causing inflammation. There’s no second guessing involved when using IBDoc, if I eat wheat or dairy it directly affects my CD leading to inflammation in my small bowel. Having lived with IBDoc for seven months its easy to forget before I began the trial that I would be constantly in contact with my IBD team, asking the nurses to make judgements usually over the phone as to why I feel terrible? Or using a private clinic at great expense and having to wait up to ten days for a Calprotectin result on the, sample I sent.

I believe IBDoc could help to pinpoint a person’s very specific catalyst for inflammation working in conjunction with a specialist CD dietician. This month I plan to explore just that, I have been in the vicious cycle of boom and bust with my diet for far too long and now I have the ability via IBDoc to really understand how I move forward and liberate my diet. Under supervision I plan to reintroduce “safe” foods from the tried and tested LOFFLEX list.

I will hopefully update you with my progress in my next blog.