Monday, 5 February 2018

Always Waiting......

This blog post is a little late, not great form I know, but one of the common traits of chronic illness I’m sure you are familiar with.

I had initially written about the Christmas period being a minefield for Crohn’s patients but on reflection and a little research I found there are hundreds of blogs regarding this topic. What I want to focus on in this blog and the theme for the following monthly blogs is the mind set of a person with Crohn’s, the daily management and challenges of the disease and the vital relationship management with our respective GI’s teams.

We all like to feel that we are in control of our lives to a certain degree, what I have found to be the one of the biggest challenges with this disease is the complete surrendering of control and the sometimes-passive nature of our involvement of care plans. I like to be involved; I like to be in the driving seat. I have run various businesses since the age of 25; so being in control of certain outcomes is second nature to me. One of the many things I am aware of is the anxiety of waiting: waiting for an appointment to see my GI, waiting for my IBD nurse to call me back, waiting for the results of the torrent of tests required, bloods, MRI, colonoscopies and the realisation that the follow up to these test will take more time. I’m also very mindful that my fantastic GI team don’t have the recourses to be on hand 24/7 so that pain I had felt last night or that extra trip to the loo can’t result in me calling my IBD nurse for reassurances she can’t give me.

Since beginning the IBDoc trial, I have found that my anxiety levels have dramatically decreased; I haven’t felt the need to call the IBD line or prompt my GI secretary to try to move my next appointment up. Of course the reason being is in no small part due to the IBDoc - It has reduced the “waiting time” down to hours instead of days/ weeks, which means I’m not constantly second guessing or monitoring how I feel, which I find mentally exhausting. The reassurances the results provides for me is priceless. For the first time I can actually have a small understanding and control of what’s going on in my bowel with out visits to the MRI scanner!! So, despite ‘cheating’ over the Christmas period with little nibbles of things that are not on my diet I am delighted to report my inflammation levels have not been raised significantly at all. The previous anxiety from past Christmas’ of believing that the calprotectin must be ‘through the roof’ due to the cheating/eating and the guilty cycle us patients get ourselves into has been immense. Not only has this kit provided me with peace of mind that the occasional mince pie won’t render me with short bowel syndrome or whatever my worst imaginings would have been, it also means I can provide the data based on the results and discuss the on-going care plan at my up-coming GI appointment.

Just to finish off this post, I’m going on holiday to the Highlands of Scotland, (I suggest all Crohn’s patients try this part of the world at least once, it provides a deep sense of calm and perspective, for me anyway). Normally I would be getting progressively more anxious around this time as travelling and eating away from my own kitchen spikes my anxiety, however, I am planning to use the I IBDoc before travelling to get an understanding of my Calprotectin levels, and hopefully have an enjoyable trip.

Join me next time to see how the holiday went, along with my latest GI appoint summary.

1 comment:

  1. Wow, I have just found your blog while looking up faecal calprotectin, having recently had the result of my first such test. This was described as 'markedly raised at 1991ug/g' and got me an MRI scan last week, I am awaiting the result of that.
    Your article is a life changer for me, at last I have some understanding of why I struggle so much when I try to eat what I should, ie enough protein.
    I was diagnosed as Coeliac in 1983, have followed a rigid gluten free diet ever since and never been really well, despite abandoning wheat, milk, nuts, dried fruit, most veg etc etc since.
    In 2000 I had a laparotomy and small bowel resection, due to severe narrowing, which they thought was going to be cancer but wasn't, and that got me a diagnosis of Crohn's. for which I have never had any treatment. I have had annual contact with the gastroenterology dept since, sometimes by phone, the last, an actual face to face one got me the calprotectin test.
    I have asked to see a dietitian each time. I'm mostly on chicken or salmon and rice or potatoes with peas, soya milk in gf rice krispies, rice pudding, which the dietitians say is OK but don't seem able to suggest anything else I can eat. I am now on Calogen as a protein supplement to try to gain weight. I feel great when on just rice krispies, but have no energy.
    I am now 70 years old, 5'6", down to nearly 7 stone and getting desperate. I'm hoping that the MRI will produce an offer of something to improve my situation.
    I will work my way through the rest of your blog over the next day or so and see how you are doing. Thank you very much indeed and good luck. Jenny