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.

The Pay Off

As I write this month’s blog, I’m in pain! To give you an idea, I have hot, aching pains running down my arms to my fingertips. I have the same pain from my hips to my knees, on the inside of my legs and ending finally at my toes. All my joints feel static, like they’ve not moved in years. Even my eyeballs feel like a heavy load. The fatigue running in tandem with the pain is overwhelming, the nausea and bloating is uncomfortable to say the least, and finally, the brain fog makes it extremely hard to focus on anything at all.

Based on the above symptoms, one could conclude I am having a massive flare up, and a trip to the local A+E department will be imminent. 

However, there are mitigating circumstances to these woeful symptoms. I’ll get back to that shortly, first, a little background. Over the last eight years, I have followed the LOFFLEX diet, (Google it) which means I have had more or less the exact same food daily for eight years! Imagine that for a second…. the same food for breakfast, lunch and dinner every day for the last eight years!! The positives of this diet are marvelous! No abdominal pain, no urgency to find a toilet, in fact, my toilet routine isn’t that complex. Once a day! And finally the diet has kept me from any further surgeries. So lots to be grateful for, right?  Well I guess so; one only needs to read a Crohns blog to understand how grateful I should be.

The negatives of the diet are simple, I think constantly about the foods I cannot eat. I wake up thinking about the foods I cannot eat and go to bed thinking about the foods I cannot eat. The level of discipline required for staying on diet, I simply do not have. This takes me back to the mitigating circumstances, over the course of last weekend, I gave in to my food urges, which included a full English breakfast, I ate out for lunch and decided on curry for dinner. I know, shocking isn’t it? The day after, the symptoms I describe above began to take shape. At this point I’m starting to feel the guilt. What was I thinking? How stupid of me to think I could get away with eating “normal” foods without suffering the usual symptoms.

Based on the symptoms I decided to check my Calprotectin levels using IBDoc. I was sure I would see a massive spike in my results and feel even more guilty and anxious about my indulgent weekend. However, the result was an unexpected 75u/ug. This suggests a few things; notably, the monthly Vedolizumab infusions are keeping the inflammation down to a minimum, which is fantastic news. The down side is I have developed multiple food intolerances which result in these awful symptoms.

To conclude, I am very fortunate to have the ability to check my Calprotectin levels using IBDoc. I can imagine a time in the near future where this tech is available in every Crohns sufferer’s home. I’m also fortunate to have a diet that keeps me in this form of remission, but also having the ability to go off diet occasionally. The pay-off being the above symptoms. It’s a daily struggle. I do have to remind myself that I do indeed have this nasty disease. I’m in the process of working with a dietitian to see if I can liberate my limited diet, being able to show the dietitian the data from my IBDoc will be a valuable resource. I will keep you updated on my progress.

The next hurdle…getting through Easter!!

The pessimistic optimist

I’m not by nature an optimist; Optimism was never the go to position for my family. Growing up as a Manchester City football supporter in the 80’s sealed my fate as the glass half empty sort of chap. As well as my boundless pessimism, I also have the misfortune of being dyslexic, with a particular problem with the letters B and D. The Irony is not lost on the fact that I have a condition that fits neatly under the banner of “IBD”

What’s a dyslexic pessimist got to do with a blog about Crohn’s Disease and using IBDoc? Well, I’m just pointing out that we’re all human, full of faults. But tech doesn’t care if I’m dyslexic, or if I’m having a bad day (yet) or if I’m anxious about the state of my Crohn’s. It’s prime function is to offer me a result, a line in the sand. What the result translates to me is, consistency, legitimacy and most importantly peace of mind.

So in reference to blog three, IBDoc is easy to use and reliable and on this month’s particular occasion I opened the now familiar cartridge and followed the instructions as usual, after applying the sample to the test cassette I was then ready to hit the twelve minute timer within the app, but  – oh no – I couldn’t? I haven’t? I didn’t?

I’d somehow managed to log myself out of the App. Luckily, I had my login details to hand, but that’s the point I nearly messed up and it’s a cautionary note for future users to have that stuff to hand just in case, as we are the ones likely to make the error not the tech.

So, having reflected on my experience of this tech, I think both the hardware and software application are truly outstanding, which is reflected in its ease of use and consistency, particularly in context of Crohn’s disease, which always seems to be in a state of flux.

So what were these latest, nearly lost to human error results?

The results were, less dramatically, within the same range as the last three tests, which for reference is between 70ug/g and 115ug/g. Having the tech to test my Calprotectin levels over the course of Christmas and a recent holiday, with all the eating out and occasional afternoon tea. I can conclude the monthly Vedolizumab infusions are having quite a profound effect on keeping my Crohn’s in check. My consultant giving me his consent to trial IBDoc back in October 2017, and at my last appoint in late February 2018, my GI was very interested to learn of the results from four months of using IBDoc and appears happy to see my Calprotectin levels below 200ug/g.

We are living in an age where tech can offer the end user so many possibilities, no matter how flawed the end user happens to be. So I am beginning to see IBDoc is genuinely offering me an almost real time monitoring of my disease. And that’s a bold statement for a pessimist.

Please feel free to ask any questions or leave feedback.