Reset and rethink

I have been waiting patiently since the beginning of this year to write this blog, although on refection I’ve been waiting ten agonizing years to write this.

August 28^th 2009 was the last time I felt even remotely healthy. The day after and up until January this year I have suffered daily from debilitating brain fog and crippling fatigue, both extra-intestinal manifestations of inflammatory bowel disease. These two symptoms had been so severe in their relentlessness that I had to give up the work I loved as clients ceased to call - knowing I couldn’t commit to completing projects. I lost touch with dear friends as I reluctantly stopped returning their calls; the effect being my social life came to a slow and lumbering halt. If I’m honest I ceased to enjoy socializing many years ago as the brain fog made social interactions painfully awkward, which in turn led me to become socially anxious, so of course I found myself withdrawing.

My symptoms had stayed unrelenting up until the beginning of this year when I was referred to a consultant neurologist after a period of extreme dizziness and fatigue that left me bed ridden. I bore little hope of progress from the costly, private consultation as most of the research regarding brain and the gut were positioned around dysfunctional digestion (IBD, SIBO, gut fermentation). However, the consultant immediately asked me a series of intriguing questions:

Do I sometime crave carbs?

Do I have ‘undeserved’ hang overs from small amounts of alcohol? Am I constantly thirsty?…………..

The consultant’s conclusion was I have symptoms of migraine without the head aches. He has observed before with IBD. Who knew?

The consultant’s protocol was simple for me to implement, I was to:

Consume 3 litres of water daily

Avoid all caffeine

Avoided all chocolate

Reduce carbs and sugars.

Take 75mg pregablin daily

So with some reluctance I began the protocol and at first I didn’t notice any significant improvements. But slow and steady wins the race. It seems to be working. Not because I feel all of a sudden well, its like watching your children grow up, other people observe it more starkly as they have periods without seeing them. But my wife will say – ‘are you sure we can’t go, not even for an hour? Are you sure you’re too poorly cos you actually seem ok this week?’ and give me a ‘gentle’ nudge in the right direction by challenging my fixed mindset. So when I observe my activity, actually I am in work more, I am writing music again, I am actually going (and enjoying) nights out, I even made it to a wedding. So something must be right. But its hard to re-set and change your mindset after ten years from ‘I can’t’ to ‘well maybe I could’… and I’m not promising plain sailing. Its not perfect and I have to force myself out of the comfort zone, recalibrate, re-think the possible and be totally grateful that I have the support, education and where-with-all to be able to find solutions to my ill-health… but that’s another subject matter.

For now I’ll concentrate on a growth mindset as opposed to fixing myself in the land of the sick and see where we might go.

It’s My Life

You know that feeling when you realise the iconic heroes from your youth have died or were much older than you ever thought they were…?

This is how I felt when I heard the news that Mark Hollis, lead singer of Talk Talk, (of hits including ‘it’s my life’) met a premature death in February this year.

I was transported back to the cafeteria of a London recording studio; a hopeful ‘Manchester’ wannabe on a tour bus of ill-fated attempts at fame. My teenage band and me had secured a recording contract with a prestigious major record label and thought we’d made it when we were sharing the same canteen as Talk Talk.

Alas, fame and fortune wasn’t to strike, but Crohns disease was.

I’ve battled - you’ve read the blog.

I’ve been angry - haven’t we all?

And now I’m ‘managed’ it’s a pain -sometimes quite literally.

I was young and free and jumping on tour buses and travelling the world and eating pretty much what I wanted, when I wanted. However, a hemi colectomy and a small bowel resection later travelling now is altogether a different matter:

As an example, early in 2014 I was completely med free and following the lofflex diet to manage my CD. As a family we decided to go to Portugal for a well-earned rest. This was the first time out of the country for me using diet alone to manage my CD, so I was incredibly diligent when it came to the food I would eat. At that stage of the diet, I could only eat chicken, rice and carrots, so the thought of travelling filled me with anxiety.

I decided rather than eat the airport and airline food I would take a flask of my own food. In order to do that I knew I had to get a doctors letter. So with doctor’s letter in hand myself and my family went off to the airport looking forward to our holiday together. On arrival at the airport it was the usual summer get away chaos, customs officers were moving thousands of people at a time through the gates; when it came to my turn I obviously took the flask out of the bag then an officer came over asked me to open the flask I gave him the doctors letter. The letter was discussed with  his supervisor , and as this conversation between customs officers continued I could see my wife and kids being ushered through to the gate as our plane was due to take off. By this point my anxiety was peaking. The officers eventually gave me back my flask of now lukewarm chicken rice and I boarded the plane… not a great start to our holiday.

On arrival at the apartment I immediately checked out the kitchen facilities, which were really no better than a camping stove with minimal pots and pans for me to cook my chicken and rice on. Needless to say it wasn’t a particularly relaxing holiday for myself as I was constantly thinking of the food I needed to prepare as well as the return leg of the holiday. I did learn from that first holiday, but what you gonna do? Limit your horizons? Yep done that. Or take mini breaks now and then and go ‘wild’ with a croissant or a slice of cheese. So I’m currently doing the latter. This year I have had a couple of days in a camping pod, a city break and a self-catering haven in the Yorkshire Dales all with the family. I am of course extremely lucky as I can check my inflammation using IBDoc whilst I am away to see how bad the damage is and then spend the next few weeks getting it back on track.

Some people choose really restrictive diets for weight or on principle for example as vegans, and I’m certain they come across as many hurdles as I do. But I guess it’s because it’s their choice. Maybe that’s why I find a restrictive diet so hard - I didn’t choose it. I didn’t choose it but it is indeed my life. So if I can manage the risk, at least I can live it.

Down the rabbit hole anyone?

In this months blog I wanted to focus on the many Crohns forums and discussion groups, and how we can fall in to the rabbit hole of information, misinformation, and personal opinions.

With chronic illness comes the need for answers, with the advent of connectivity we can sometimes find ourselves overwhelmed with the sheer amount of information out there. In the past (pre internet) one had to be content with the 20 minute appointment with our consultants, or maybe a trip to the library. However, we now find ourselves with multiple sources of information at hand, that being the online forums and groups discussions. Over the years I have been a member of at least twenty Crohns forums and discussion groups and at times found myself spending hours at a time sliding further into the rabbit hole.

The positives and negatives of online forums is that anyone can post anything, no matter how accurate, insightful or reasonable it may be. Moreover, simply posting a comment gives it a form of credibility, with even the most compiling comment fading into obscurity as additional comments accrue on the topic.

You will also find that some questions are asked over and over -- perhaps only a month or two apart -- each time, no doubt, by someone new to the forum. Annoyed readers scold that you should review prior topics before adding your own post. I wouldn't think to do so and I don't fault others for failing to search history. People want an answer to their own question rather than someone else's.     

I find myself concerned with posts I read from members on certain forums who post with the authority of a GI but have the credentials of a shop assistant. As an example I followed a discussion regarding diet and IBD, the thread began with a newly diagnosed member asking if diet had any impact on their IBD. Then came the reply from the admin of the group who stated, Diet has absolutely no bearing on the status of IBD, he even attached a study to back up his claims. If you’re a regular follower of this blog, you will know my entire and most successful approach to dealing with CD is diet! So I was interested to read the paper

The paper was flawed in many ways; firstly it was out of date with current thinking regarding diet and IBD. The study was a small cohort of subjects who tried the SCD diet for only three months and of course the outcomes were unsuccessful. As we now know diet plays a massive role in IBD;as a veteran of CD my concerns with this thread like many threads are they are simply not accurate, but posted with confidence and a paper to back it up immediately gives it credibility.

Another example I came across recently was a thread discussing Calprotectin levels, a subject close to my heart!! The thread discussion was basically that one couldn’t rely on the results of a faecal Calprotectin test because it’s not accurate enough? This is of course totally wrong and the implications of the discussion could discourage CD patients from asking for the test and not feeling confident that the results are accurate. I don’t want to get evangelistic about IBDoc, as you know I find it a remarkable product. But these kinds of threads can be unsettling to an already vulnerable person.

When used correctly forums can help with the isolation of chronic illness you can connect with other suffers and share ones own experience, also they can offer valuable recourses and research papers. So my advice is to research any claim of treatment, or cure with hard evidence. Look for peer-reviewed papers on the subject, and get a general over view of the forums posts and attitudes. Hopefully this way you will avoid “ going down the rabbit hole”

www.calprotectin.co.uk

 

https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing

A month in the life of a Crohns patient.

As I’ve had quite a busy month with managing my Crohn’s disease in terms of tests and consultations I thought this blog could focus on a month in the life of 

March 2^nd  

MRI of the small bowel

This appointment had been cancelled and rescheduled twice, I find it incredibly frustrating when you get an appointment letter through and then the following week that appointment has been cancelled and rescheduled, unfortunately it’s all part and parcel of dealing with this disease and working within the system.

I don’t have any issues having an MRI as I’ve had many over the years, I’m not claustrophobic or needle phobic for that matter, which considering the amount of times I have blood drawn or had cannulas fitted this is something I’m grateful for.

If you have never had an MRI there is generally nothing to concern yourself with, you will be asked not to eat at least eight hours before the procedure, it’s a painless procedure, apart from the cannula that’s fitted. The most uncomfortable part of the MRI is the 2 Litres of liquid called Mannitol which you have to consume before the procedure; it’s a sugar-based solution that has a mild laxative effect. It’s not a particularly bad taste; it’s just not particularly nice, as it taste like cheap squash. After you have finished the 2 litres of liquid, you’re then asked to get dressed into one of the medical gowns they provide - you know the gowns I’m talking about right? They have no backs to them, which for me 27 years later still feels very strange.

After you have had your Mannitol solution you will be asked to lie on the MRI table for approximately 20 minutes. They then take a series of pictures, with you holding your breath for each set. During the scan you will be required to have an injection in your arm of Buscopan (bowel relaxant) and MRI dye.

Once the MRI is complete you are generally free to leave. I have an appointment at the end of the month with my GI consultant so hopefully he will have the results of the MRI. On the day of the MRI I used the IBDoc with a result of 38ug/g, so it will be interesting to see if the results of the MRI correlate with the IBDoc result.

March 4^th

Appointment with NHS dietician.

My last appointment with an NHS dietician was over 20 years ago and frankly they were still in the dark ages when it came to understanding the relationship between food and Crohn’s disease. So I was pleasantly surprised when the dietician began to discuss the different diet options; we discussed my on going challenges with introducing new foods, the dietician explained in her experience this is quite a common theme with patients who are on limited restricted diets. We discussed the LOFFLEX diet as well as the low FODMAPS diet. The dietician suggested that I re-introduce food one at a time and build this up each day in order to avoid overwhelming my bowel and that considering I had avoided food for so many years having a structure to reintroducing should also increase my confidence when trying new foods. She advised each food be reintroduced over three days starting with small portions and doubling the portion size each day; if I had an increase in symptoms I would then stop that particular food let my bowels rest for a couple of days and then start on a new food again. I have a follow up appointment with the dietician in eight weeks time to discuss my progress.

March 6^th

Hydrogen breath test

Back to the hospital again, this time it was for a hydrogen breath test. A hydrogen breath test provides information about the digestion of certain sugars or carbohydrates and to confirm the presence of small intestinal bacterial overgrowth (SIBO). The last time I had a hydrogen breath test was over seven years ago and I tested positive almost instantly.

This time the technology has changed yet again, I’m not hooked up to a machine, and I’m simply breathing into a small handheld device. Basically you have to breathe into this device every 15 minute over the course of an hour, if there is a presence of hydrogen in the small-bowel it is instantly detected. You get the results straight away and luckily this time it appears I don’t have SIBO.

If you find yourself bloated on a daily basis or have discomfort in the stomach I’d recommend asking your GI for the hydrogen breath test, follow the link below for full description.

http://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=83997&type=full&servicetype=Inline

March 8^th

Pre Vedolizumab bloods.

Every four weeks I have an infusion of Vedolizumab. Before I can have the infusion I have to go to the hospital to have bloods drawn to check that I have no infections, I also have my weight and blood pressure checked.

March 11^th

Vedolizumab infusion.

Back to the hospital yet again, this time it’s for my monthly Vedolizumab infusion.  I know all the nurses by name on the ward as I’ve been having these in infusions for the last two years and it’s always a great opportunity to speak with other patients that are having their monthly infusions. Once the nurse fits the cannula they then attach the back to Vedolizumab via a drip. It only takes half an hour for my infusions to be finished and I don’t generally wait around in the ward afterward. I do feel quite fatigued after the Vedolizumab infusion, which can carry on into the next day, so I have to factor this in when planning work, social activities.

March 28^th

GI appointment.

I still find myself getting quite anxious when it comes to my GI appointments I’m not quite sure why as the relationship I have with my GI is good.

First up, we discussed the results of the MRI, it appears that the 15 cm of stricturing I have had over the last ten years is now clear and I have little to no inflammation, this correlates with the IBDoc results. This is fantastic news, not only is my CD under control, I have no stricturing or inflammation present which validates the data from IBDoc over the last eighteen months.

Next we discussed the results of the hydrogen breath test which came back negative, again another great result and no further action is required.

Finally, we discussed the levels of Vedolizumab in my body, apparently this test is brand-new. It’s function is to indicate whether the levels of Vedolizumab are sufficient in the patient, it appears I have good levels of Vedolizumab, which again ties in with the MRI and IBDoc results.

In summary this month has been quite busy in terms of activity, juggling work and home life can be a challenge when faced with so many appointments. However, I am lucky that the results of the tests are positive as I continue to battle CD.

Hope you enjoyed the blog; feel free to ask any questions or leave comments.

Follow me on Twitter @ibdocMe

www.calprotectin.co.uk

 

https://www.alphalabs.co.uk/diagnostic-products/faecal-testing/faecal-calprotectin-assay-range/calprotectin-home-testing