IBD, mental health disorders and food phobias.

This month’s blog is difficult for me to write down, I guess admitting to an eating disorder is something that I was always going to struggle with, certainly when I began to read back my blog it reminded me of the hole I’ve dug for myself, however, after spending time researching for this month’s blog and the therapy I’m receiving I am now being to understand why eating disorders are prevent in the IBD community.

 

So, what’s the link between IBD and eating disorders?

 

Research, though limited, suggests an overlap between IBD and eating disorders. The few available studies show that IBD may indeed play a role in eating disorder development and illness. This research describes the relationship between the two conditions as reciprocal—they affect and are affected by each other. The presence of IBD can complicate illness and recovery from an eating disorder and vice versa. 

 

The experience of physical discomfort when eating can also heighten anxiety or fear at mealtimes, and the unpredictable nature of IBD can spark a desire to limit intake in an effort to limit IBD symptoms. Doing so may provide an illusory sense of control around food, or a general means to cope with the stress of a debilitating gastrointestinal illness.

My own experience of disordered eating began like most people with Crohns or colitis, when having a flare up of the disease causes one to immediately restrict the food intake, as the pain of eating is too much. This of course leads to severe weight loss, which in turn can lead to other complication; I found the most challenging aspect of my weight loss (I’m 6ft `2 and weighed just 10 stone at my lowest point) were the unintended comments from friends and family,…you’ve hardly touch your dinner, if you keep going on they’ll be nothing left of you. You look really skinny, I’m so jealous! 

Obviously, these comments hurt but I have to remind myself that friends and family have no idea of the reasons behind the dramatic weight loss. Although my eating disorder may have its origins in the many flare-ups over the years, I believe mine started when I began controlling my Crohns by using diet Specifically, the LOFFLEX diet. I’m aware controlling IBD with diet is still a contentious issue for many consultants and patients alike, for me it isn’t a contentious issue at all, if I eat, chicken, white rice, carrots, prawns, rice cakes rice milk and oven chips, my Crohns is under control (confirmed via Ibdoc https://www.alphalabs.co.uk/bi-ibdoc) If I go off my diet. My Calprotectin levels shoot up dramatically and I begin to feel unwell.

So back to my diet, my saviour and my foe, no matter how hard I’ve tried over the last 10 years to introduce new foods into my diet, I’ve failed miserably, which then leads to me being self-critical, and my inner voice screaming: why can’t you just stick to the diet? Why can’t you just try the introductions of new foods, what fool would knowingly eat foods that will cause your Crohns to flare? 

I now realise I have developed a full on eating disorder, I regularly binge on foods at weekends that make me feel unwell,  and honestly I don’t even enjoy the foods I’m binging on,  I often eat secretly in the kitchen and feel like a fool when I get “caught’ in the act, which is not only hard to swallow, (pun intended) but I now understand it’s manifestation in other parts of my life, particularly when I have a shopping trolley full of my foods for the week, chicken, whole sale boxes full of rice cakes and oven chips, I often imagine some random person making derogatory comments on the contents of my shopping trolley, so I’m in and out quick,  that’s a bit mad, isn’t it?

I’m so grateful for the therapy I receive for my eating disorder; the therapy has put my internal voice and conversations into context, and helped my councillor Identify and labels my disorder as ARFID. ARFID stands for: avoidance restrictive food intake disorder and it’s a relatively new eating disorder diagnosis Previously coined “Selective Eating”, it involves limitations and/or restrictions around food, particularly around the intake of certain types of food or certain amounts.

Unlike other eating disorder diagnoses (like Anorexia, Bulimia or Binge Eating Disorder) it doesn’t typically involve distress around body image or a pursuit of thinness. Rather, it is classified by a rejection of certain foods often due to sensitivity in taste, texture, smell, appearance or temperature. Someone suffering with ARFID may struggle with socialising and eating around others, and suffer from serious nutritional deficiencies, weight loss in adults and stunted growth in children.

If you can identify with some of the themes in this blog, don’t beat yourself up! We have enough to deal with managing our IBD physically and mentally daily, remember we didn’t ask for this disease, it’s not our fault IBD makes us feel less than. There is help out there too, I’ll leave this blog with links to various organisations that can help.

https://www.beateatingdisorders.org.uk/support-services/helplines

https://eating-disorders.org.uk/

https://www.swedauk.org/

Follow me on Twitter https://twitter.com/IbdocMe 

  

Another milestone moment for me and my Crohns!

Hurrah! It’s my 10th Anniversary and according to Google:

 

‘Traditionally, the 10th year of marriage is marked with tin or aluminium. Both materials represent the durability and flexibility needed to sustain a loving union.’

 

And oh my, have we shown durability and flexibility between us. Not me and my wife of course, no I mean, it’s ten years this weekend that my lifelong partner Crohns re- entered my life, with a bucket full of Chinese wings and a blue light ride to that most exotic of places, Wythenshawe hospital A&E 

 

And that flare up exactly ten years ago changed everything!

 

No more cut and shut, chopping out the diseased part of the bowel, and then crack on with your life. By 2010 the medical profession, dealing with an ever rising occurrence of Crohns disease, had worked out it was better to manage the disease with a whole new raft of medications than hack away at the bowel.

 

And how I miss those days of elective surgery, some days, I just want to get a knife and chop the whole thing out myself and other days, it’s familiarity seems like an old friend (that you never really liked). But no, this time round it’s all been about treatments, since September the 28^th 2010, I’ve tried, 6MP, Azathioprine, Infliximab, LDN, triple antibiotic therapy and the most effective of all the treatments for me is a low residue, low fibre diet.

 

It’s still a journey. One of those like when you climb to the top of the mountain, quietly congratulating yourself, then you discover there’s another peak, and another peak and another…………

 

But you know you just got to keep going, this time around, armed with IBDoc, which again has been such a useful tool in lock down, as I haven’t seen my consultant since last February, however, I have seven months of IBDoc data, so I’m comfortable with the wait. And as things are shaping up with the pandemic, it looks like we’re in for the long haul! 

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

 

Things you only know if… Your partner has a chronic illness

I’ve been with my husband twenty eight years and he’s been ‘sick’ for twenty seven and a half of them and it’s not dissimilar to lock-down. Cancellations, can’t do what you want when you want, often having to put other people’s health before your own!

When you make your wedding vows, like when you listen to the small print in an advert you agree to ‘in sickness and in health’ but you rarely comprehend what that means. Even if you think you know what you’re signing up to.

Lee and I married on our tenth anniversary by which time he already had two major operations for Crohn’s disease. I thought I knew what I was dealing with.

It didn’t put me off. I didn’t have a second thought about the commitment I was taking on. If you’ve ever loved, you’ll know what it’s like to want to walk the ends of the earth for your partner. Ever the optimist, our quests to find a cure have seen us chasing the world’s leading doctors in Australia and America, trying all sorts of mad cap diets, experimenting with worms! At times it’s been like a scene from ‘Lorenzo’s oil’ in our house.

And the money. It costs a lot to be sick. Prescriptions, supplements, probiotics, consultant fees, hospital parking fees, healthy eating, loss of income. It’s a financial burden not to be underestimated.

What I didn’t comprehend though was the daily toil on the mind. Both our minds. Dust yourself off and start again. That’s tiring. When you have to do it weekly or even daily. Its always two steps forward, one step back.

Crohn’s disease is a hidden illness and an embarrassing illness so people stop asking you too. We don’t get asked to dinner much understandably (the diet!), we don’t get asked to those ‘families going away together’ weekends as we’ll invariably cancel. And if I’m honest he doesn’t even like to socialise anymore. In one of his blogs ‘10 things not to say to a Crohn’s patient’ number 1 on the list ‘well you look ok?’ He’d just rather not put himself in the room in the first place.

It’s probably made us stronger, we’re fairly indestructible. When you watch someone in so much pain or stand by helplessly thinking they’re going to die. It kinda focuses you on what’s important. That the kids have a loving dad, that I have a loving husband. We rarely row and when we do we resolve it quickly. It seems pointless expending the energy that we need to save for other more significant matters.

And I admire him so much for the fight, for the resistance to what seems at times like torture, for the times he leads a business meeting with a head full of fog and a stomach full of cramps.

My work as a social entrepreneur sees me working with all types of people and in the past I’ve found myself standing on a stage or doing  TV interview, evangelising about social impact and positive change and flicking glances at my phone in case I need to get back early cos its just got too much at home.

And jokingly Lee points out on a regular basis that I’d be nothing without him! To that end I concur. Not just because of the slack he picks up over the years in home care and childcare but also because ironically, so many career decisions have been made as a result of putting my family first. I didn’t necessarily choose to do a lot of the things I’ve done, they just fitted with what my family needed from me, be that hard fast cash or just flexible hours. But not least, because when it all gets overwhelming he’s there, solid in his support to pick up the pieces.

I’m definitely no saint. I feel sorry for us a lot.  I wistfully watch as friends travel and socialise, as not being able to travel, that’s what I find the hardest. I can’t even pretend I haven’t thought ‘ha!’ When everyone’s trips got cancelled this summer at short  notice – ‘now you know what I feel like!’

But I am grateful. As ridiculous as it sounds I’m grateful for all the beautiful things people do when you least expect it. A kind text, a knowing nod, an offer of support. And for the ever present rock, that is my family, my wonderful family and friends support network.

Living with illness is humbling and insightful. You realise everyone’s got their challenges to deal with and you’ll often have no idea. Unless you ask.

Follow me on Twitter  https://twitter.com/IbdocMe 

www.calprotectin.co.uk

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

One more chronic illness to add to my tally of chronic illnesses

It’s been a while since I last posted, the reason being it appears I have a brand-new chronic illness to add to my tally of chronic illnesses, shame we don’t get awards or a meeting with the Queen for our efforts. Anyway, I’m still waiting to be formally diagnosed but it looks like I have late onset asthma, which has thrown me for six and has huge implications for the medication I have to treat my Crohns.

Around the beginning of lockdown I decided to see if I could improve my fatigue as well as trying to loose some weight by introducing an exercise regime as I have put on at least two stone since beginning the Vedo. “LOOSE TWO STONE, BUT YOU HAVE CROHNS DISEASE!!” I hear you shout, Well, due to having Crohns my whole adult life; I’ve always been underweight so it’s a very unusual and uncomfortable feeling being over weight. I keep catching myself in the mirror doing a double take.

So back to my life changing exercise regime, for reference, when I say exercise regime what I actually mean is doing some actual exercise like the joggers you see in the park. Due to my increased waistline I barely managed to fit into my running shorts and T shirt, at this point I got the feeling my 15 year old son wasn’t to keen to been seen with me as he wanted to run at least 20m in front.

Everything started in the right direction; I had the couch to 5k app, water bottle in hand and a son too embarrassed to be seen with me and my portly figure.

It was within 10 minutes of running that I realised I was struggling to get my breath, I stopped a while and began running again, it was clear to me by that time that there was a problem with my breathing, I’d lost sight of my son who was running away into the distance, I found the nearest park bench and tried to regain my composure. The problem was, I couldn’t re-gain my composure, I could barely breathe.my son and eventually found me red-faced sat on the park bench.

Several doctors, scans and x rays’ lung function tests, antibiotics, results, more tests, steroids and nurses later, my consultant wants to stop the vedo and I want to stop the world and get off. All I tried to achieve was a bit of exercise, why does everything have to be so debilitating and difficult with Crohn’s?

But through all the ‘ups and downs’ of the investigations into my breathing problems, ive had one constant, one anchor of key knowledge to hold onto, an assertation that none of this is affecting the inflammation levels in my gut. Over this stressful period I used my IBDoc resulting in 2 test results of 38ug/u 86 ug/u over 6 weeks, which means my gut, is in good shape. So why stop the vedo?

I’ve got an appointment. To be discussed. Armed with more knowledge than most. I’m sure it would help if more people could monitor their own calprotectin levels too. But for now, lets see if it helps me.

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

28 Years of Lockdown

My own personal lockdown

 

My own personal lockdown didn’t begin at the start of April 2020; it started in August 1992, when I was first diagnosed with CD. I’ve been in and out of “lockdown” many times since in my 28 years with CD. So I’m well versed in what’s required to sit and wait it out.

 

The difference this time is that just about everyone worldwide is feeling  a few of the emotions and suffering we chronically ill people experience on a daily basis. I don’t want to sound glib or come across as smug, as here in the UK 28,000 people have lost their lives to COVID19 so far.

 

 We all now have a shared experience of the suffering: not being able to meet up with friends, plan a holiday, worry about health, anxious about finances or eating out to name a few.  The difference for the chronically ill is our suffering will not end when the lockdown is lifted, we will still be in the same situation as before lockdown, except this time the future is more uncertain. We have no idea what lifting the lockdown means for a person with a compromised immune system, it just adds anxiety on top of the daily anxiety we already feel.

 

To add to the anxiety, I have had to go to hospital amidst a global pandemic; to the heart of the beast if you will, for my usual monthly Vedo infusions. I have made the trip to hospital twice since lockdown and both times in all honesty it petrified me. I felt a general since of unease with the nurses and staff on the ward, and being asked to wear a face mask whist the infusions takes place makes it very real for me.

 

I do however, feel incredibly lucky for a few reasons; first, as chronically ill people living in the UK, we know just how selfless, understanding and professional our NHS staff is, from the Doctors to Nurses to ward clarkes and porters, they are in my experience incredible. So I will be clapping every Thursday evening, but the truth is I’ve been quietly clapping for them for the last 28 years.

 

I’m also incredibly lucky to be able to test my Calprotectin levels at home via IBDoc. If there are positives to come out of this awful pandemic is the doctor/patient relationship, as I’ve pointed out in my previous blogs we need to grab hold of the tech at our disposal, and use it to our advantage. Of course there is no comparison to meeting face to face with your GI but imagine the time, money and effort we can save using Skype, Zoom or Team sessions. Or implementing the use of home Calprotectin tests? As I said I’m lucky I can test Calprotectin at home. My last result using the IBDoc was 38 ug/g so zero anxieties and I’m not badgering the IBD nurse and going out of my mind with worry at every little twinge in my tummy.

 

I’m also so grateful to my wife, who without hesitation and putting her own safety at risk will wait in line at the supermarket then travel across town to pick up my prescription.  

 

I don’t know what the future will be like in a post COVID world  living with IBD. What I do hope is we can use this experience to be more understanding of the chronically ill, and our front-line workers, maybe being a little more kind to the people less well off then ourselves.

 

Stay safe.

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The good the bad and the ugly

This is my first blog post of 2020; I have good news and bad news.

The good new first. Last year was a good year, an actual good year!!! I felt generally well enough to actually enjoy living life, as a family we were lucky enough to go on several mini city breaks including a week in the Scottish highlands. The consequences of enjoying life and sampling foods on holiday meant my Calprotectin results have not been under 100ug/g for that year, so how bad were they?

Well, significantly. I carried the holiday spirit with me into day-to-day life, nibble some chocolate here, couldn’t resist some butter on my rice cakes there, and the odd Saturday night takeaway.

I know that Vedolizumab has its limitations, it doesn’t work for me in isolation - I have the “diet” too. The Calprotectin level doesn’t shoot right up anymore, by right up I mean over 450 ug/g When those higher values actually start presenting physically, ulcers, bloating, pains and tightness in my abdomen, well I just reign it in, get back on that diet, strictly adhere to it for a week or so and then safely and happily confirm I’m back on top of things. Then start ‘slipping’ off the diet again and the cheating creeps up. And so the cycle goes on. I always feel a huge sense of guilt when I have cheated on the diet, and anyway, consecutive days of cheating makes me feel physically dreadful, I believe that’s down to the food intolerances rather than the Crohns. So I’ve been in this boom and bust cycle for the last eight years.

Which leads me to the million-dollar question! What a positive Calprotectin result actually looks like in terms of inflammation, ulceration and structuring in the small bowel. Here’s the bad news. I had the opportunity to understand those IBDoc results I have been capturing for the last two years as I had the dreaded colonoscopy in December of last year. A couple days before the colonoscopy I used an IBDoc kit to measure my Calprotectin (of course why wouldn’t I) the result of that test was 360ug/g. So what does the inside of my small bowel actually look like, I hear you shout!!

Ok, so I received the follow up letter from my consultant out lining my recent colonoscopy. In the letter it states that my small bowel showed signs of mild ulceration and the biopsies and blood work taken also showed signs of inflammation. In the letter my consultant was keen for me to switch from Vedolizumab and begin a new medication called Sterala. Interestingly I wasn’t shocked by the results of the colonoscopy, as I have year’s worth of data from IBDoc that confirmed the colonoscopy results. I was of course disappointed that I would have to begin another medication with all the side effects, loading doses etc.

So armed with my research on Sterala and of course my agenda for the meeting I was ready to go, if not a little nervous, but to be honest I’m always nervous when I see my consultant. I’d based my agenda notes and questions around me transferring from Vedolizumab to Sterala, however, in the meeting with my consultant I was surprised he was reluctant to switch my medication as he could clearly see I’d gained weight - I wasn’t suffering with urgency, bowel pain and no extra intestinal manifestations. My consultant asked me how I was feeling on a day-to-day basis; I told him that I feel good; in fact I’ve probably felt the best since my flare up in 2010. Based on that and after a little head scratching he suggested we go for another four months on the Vedoluzimab with the option of switching to Sterala if my symptoms present.

I think what today has taught me is, there is no running away for this disease, no short cuts or miracle cures, I know I have the ability to control my Crohns with diet and Vedoluzimab and lucky enough to be using IBDoc to monitor my inflammation, I simply need to redouble my efforts and not be tempted by foods I know will be detrimental, which is easier said than done.

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