I’m Simon and I’m here to tell you a little bit more about my IBD story so far. I say so far because it’s an ongoing story with new chapters every day. Some chapters are shorter and less eventful than others and this entry is to tell you about my experiences so far of having Crohn’s disease.
It’s probably worth mentioning at this stage that my mum is a fellow IBD-er and has ulcerative colitis. I’ll be referencing some of our conversations later as I went through my diagnosis.
I work in learning and development and I’m fortunate in some ways that I am actually in a field-based role which means my “office” is based at home. On the unfortunate side, a field-based role includes a lot of travel to and from different sites and Head Office which has caused some difficulties over the last few years.
It’s time to go back to the beginning, the very first chapter of my Crohn’s journey, in April/May 2013.
Looking back now it’s so easy for me to join the dots and notice I was gradually becoming ill but I hadn’t recognised at the time that what was happening to my body was all because of one thing.
The first thing I noticed was terrible fatigue, my partner at the time (and I at some points) just thought I was really lazy, and I do love sleep, but I was falling asleep on the sofa most nights by 7.30-8pm and sleeping right through and still feeling tired at 7-8am the next morning. The next thing I started to notice, but put it down to not being very active, was aching joints and muscles. I remember it being like growing pains as a teenager, they just stuck around for longer and hardly anything would make the aches in my knees, ankles - even my shoulders and elbows - disappear. I started to do some gentle walking thinking I needed to move more but this often made me feel worse the next day.
The day I knew something wasn’t right I will always remember. For a few days before I had been constipated and hadn’t moved anything from my bowels for 2-3 days, which wasn’t normal for me and was getting intense abdominal pain and had lost all of my appetite. I eventually managed to visit the toilet and was horrified to find (what seemed to me) an enormous amount of blood in the toilet, on the tissue and on my skin. In hindsight it probably wasn’t an enormous amount of blood but at that time, feeling terrified by what had happened, I felt like it was a lot.
Being the sensible person I’m not - I did nothing, I didn’t book a doctor’s appointment, didn’t search for any potential reasons on the internet, I did nothing and hoped it would never happen again - a one off and I’d never have to tell anyone about it.
Of course, this didn’t happen. Instead of having a similar experience I actually started visiting the toilet multiple times a day and when I say multiple we’re talking 8-9 times before lunch and it all being really loose movements. Along with the toilet visits the abdominal pains I had been experiencing the first time round (the visit with all the blood) were still around and getting worse.
If my memory serves me well we’re now around late June to early July 2013 and I’ve self-diagnosed myself with IBS and have bought some over the counter remedies that aren’t having any impact at all. I finally plucked up the courage, one Friday afternoon to speak to my mum about it. Mum and I pretty much always chat together Friday tea time on the phone. She’s figured out it’s a time of the week I pretty much always pick up the phone and it has grown into a lovely thing - we always now chat on a Friday afternoon. So on this day, I’m driving to the supermarket and mention to her that things aren’t quite right, explaining some of my symptoms to her and the silence from her said it all - she was worried! Mum has suffered with ulcerative colitis since her early 40s so isn’t far off the 15 year mark and she recognised the signs too easily. I am TOLD to book a doctor’s appointment and see my GP as quick as I can - which I do. You all know that tone your parents use when you actually still don’t have a choice no matter how old you are. And, thank goodness she did tell me to.
I got booked in with my GP, explained the symptoms and he examined my abdomen and whilst doing this I yelped out in pain as he pushed his fingers down to the right of my belly button (my right). I had no idea pushing here would cause so much pain and I think he was caught off guard too. He booked me in for blood tests and told me to come back in two weeks. The blood tests came back showing signs of anaemia and high inflammation so the GP knew it was time to refer me to the gastroenterology team.
We’re now heading into August and I get a letter through to see the gastro team in October….10 weeks away. By now I am not only visiting the toilet multiple times in the morning I am also getting up in the night to go 3-4 times and feeling the most tired I think a human could ever feel. My partner at this time was a nurse and having someone know the ins and outs of the hospital system was actually useful and I was pointed in the direction of PALS the Patient Advice and Liaison Service and I explained what was happening and that I couldn’t wait until October. They fortunately agreed with me and managed to bring my appointment forward to the end of August.
Before this though I was having a big family holiday in the south of France, 13 of us in total over two villas with a pool. I was there for a week and for the first few days I wasn’t too troubled by my symptoms. They had subsided slightly until my stress levels hit an all time high (there’s no need to go into detail about what happened but there was a bit of an argument and I got very upset and stressed about a situation) - my symptoms hit a new level within hours. I was up every hour going to the toilet the night before we were due to fly home and I was not only exhausted but also concerned about dealing with the plane journey home.
It’s at this stage I’d started to recognise that I had been eating lots of high fat, stodgy food (remember it’s France - the land of beautiful cheese and bread) and drinking wine, lager and sweet, sweet mojitos also and the stressful situation had obviously played a part so I made a vow to sort out my diet when I got back and start eating healthier.
First though came the appointment with the gastro team! I remember it being a Friday, sat in the outpatients department at my local hospital and feeling terrified. I was sat on my own, emailing a work colleague as we were meeting after my appointment and I was letting her know that I would be delayed (she didn’t know why at this stage just that I had an appointment elsewhere).
Why was I terrified? The enormity of actually being referred to a specialist team had finally dawned on me that something wasn’t right and I already had guessed the only way of diagnosis was a colonoscopy.
First symptoms started
Bought some over-the-counter remedies that aren't working
Referred to gastroenterology team
First appointment with gastro consultant
Colonoscopy and gastroscopy - suspected Crohn's disease
Crohn's disease confirmed
MRI scan on small intestine
Surgery - ileocaecal resection
Colonoscopy confirmed Crohn's disease active again
Admitted to hospital twice in early 2015
Started on Humira
I was called in to see a doctor, whose name I cannot remember now, and went through a similar conversation to the one I had with my GP, but she was more focussed on my bowel movements, what I was passing, the frequency, my eating habits, energy levels and if there was any family history of IBD - which of course there is. I’m sure she was trying to keep as much of a poker face as possible but her face was saying it all - all the signs are pointing towards some sort of IBD and then the inevitable happened and she said the only way to be able to diagnose anything was with a colonoscopy - exactly what I was expecting. What I wasn’t expecting was that I was also to have an upper gastrointestinal (gastroscopy) endoscopy, a camera down my throat into my stomach. The anxiety I had purely for just the colonoscopy doubled knowing it was now two procedures and she was rushing it through and wanted me to have it as soon as possible so I would be put on the emergency list. I had to go there and then and pick up my Moviprep and wait for my appointment.
You might be wondering why was I so uneasy about the colonoscopy never having had one before. It was all because I had watched my mum go through taking the prep multiple times when I was a teenager. Watching her cook her last meal of boiled chicken and eating clear soup, making up this gloopy looking drink, the litres of it that she had to drink and hearing the multiple times the toilet flushed as she was locked away for 12 hours in her bathroom. That part alone made me scared of having to flush out my insides so I vowed not to search for any information on the actual procedure itself…which of course I didn’t stick too.
For the next few weeks whilst I was waiting for my colonoscopy (I’ve found out by now it’s going to October) I’m researching the colonoscopy and the gastroscopy. I actually read more on the gastroscopy as I couldn’t imagine at all what that would be like having a camera down your throat. Most of the articles and blogs/postings I read though said that once you had been sedated or had the throat spray it was an ok experience so I started to feel a little bit more settled and most people were saying the prep was the worst part. It’s nasty, you have to drink it all and you are going to go to the toilet A LOT! It’s going to sting and you’re going to be gobsmacked at what comes out (I have this terrible habit now of looking at what’s in the toilet bowl as a daily check to see how I am doing) and you need to be prepared to be tired, hungry and sore. I didn’t find the procedure much fun. But, however nasty it can be these tests are really important in diagnosing our disease and the impact it is having on our digestive systems, so you have to have it.
The results - the doctor who performed the procedure came to see me in the recovery room after I had dressed and was sat drinking a cup of tea and some custard creams (the best custard creams ever may I add) and he told me he was pretty sure it was Crohn’s disease and that I was so badly ulcerated he couldn't get the camera through to my small bowel and that I had a blockage at my terminal ileum. He handed me a prescription for Prednisolone, steroids to you and me, and told me I had to go get some as soon as possible and start taking 40mg a day. I would need to wait to hear officially about the diagnosis from the samples he took but he was pretty sure he was right. With my prescription, a handy leaflet and a heavy heart I went home, ate and slept, all in that order.
My parents were away in New York at the time and they rang the next day to find out how I had got on. When I had spoken to mum before they went we’d had a conversation about me most likely inheriting IBD from her, as it does happen and that would probably mean I had UC, which according to her research is more manageable than Crohn’s as it only affects the large bowel. I knew when I was going to break the news they thought it was Crohn’s she was going to take it badly. They were both sat in Central Park when they rang and I tried to delay the conversation by asking how their time away was, what the weather was like etc until I couldn’t divert the conversation anymore. Mum was upset and after lots of consolation, reminders to take my medication, rest, watch what I was eating and to look after myself they hung up and I went back to my daily routine.
The daily routine right now still includes going to the toilet multiple times a day, blood in my stools every now and again, the need to go to the toilet within 20 minutes of eating anything and the ongoing tiredness. But, over the next few weeks as I took the steroids I started to see some respite, especially from the pain. Before I had my colonoscopy the pain got so bad sometimes that it would knock me off my feet. Literally a sharp stabbing pain that would make me double over and stop me from doing whatever I was doing. But it had eased thankfully.
I had finally had a letter from the gastro team in November confirming that I had Crohn’s disease and before they would bring me into the clinic for my first official appointment they wanted me to go for a MRI on my small bowel to see the other side the colonoscopy couldn’t. It was booked in for December 30, 2013.
So there it was the official diagnosis, I definitely had Crohn’s disease. It was obvious it was going to be this and I remember thinking at the time 'this is going to change your life forever'. You think lines like that are only said in the movies or fictional books, but I actually thought that...and I was right. What I’ve been through has changed the person that I am today. But it has changed me for the better. More on that another time, but this year (2015) I decided I would not let this disease control all of my life and I would do whatever it takes to lead the life I wanted. You only get one shot at this and I wasn’t going to let Crohn’s disease impact that and I’m still not now.
Sadly, I know I am not the only one who has had to wait many months, in some cases years, to be diagnosed with IBD, so I think myself fortunate I only had to wait 5 months from my first GP appointment.
So what happened next? I had the MRI and went to get the results and all I’ll say is within 48 hours I was on the operating table having an ileocaecal resection (that’s my terminal ileum being removed to me and you) which bought me about four months of remission. Yep, that’s right, you read it right, about four months - when it should have bought me years. You can read more about my ileocaecal resection surgery experience in this article.
Since my operation in February 2014 I’ve had one further colonoscopy - in September (of the same year) which confirmed that my disease was active again already and was causing me to ulcerate and potentially have blockages. I was placed on Azathioprine, to get it under control. Unfortunately it wasn’t doing the trick as I was admitted twice to hospital in the first few months of 2015 and have had two really bad flares that have put me back on the steroids twice since then also. These flares were the worst I have ever had. This is no word of a lie when I say I was visiting the toilet every 20 minutes and passing large amounts of movements, blood, puss, blood clots and undigested food. Over 2 days I lost 4lbs in weight and it’s this last flare that I raised it with my consultant and he said the Azathioprine obviously wasn’t having the effect it should be so that’s why he has started me now on Humira.
That all sounds really doom and gloom, but let me tell you that throughout this time I’ve managed to stay in work and take on other, more high pressured roles that have included more travel - even to international locations. I’ve holidayed in Florida, Maldives, Italy, Turkey and the Big Apple! I’ve made myself lead a healthier lifestyle. I’ve spent the time getting to know my body, what triggers my flares, what I can and cannot tolerate from food and drink, how my emotions play a part in living with IBD. I fell out of love with myself and then fell back in love with myself and made some massive changes to my life - but all of them for the better. I even completed in the Crohn’s & Colitis Charity Walk in York in 2014 and raised over £600 (even though it wasn't a race, my friend assures me we won!).
I mentioned earlier on that I was admitted twice in the early months of 2015 and it was on the second admission when I told myself things had to change - but they had to change on my terms, under my decisions, on my grounds. And I make that decision consciously, multiple times a day. I made it today in the supermarket when I picked up the creamy, buttery luxury ready-made mashed potato to go with my rump steak for tea. In that moment I made a choice - eat this and spend the rest of the night and some of the next day being ill (cream is a major trigger food for me) or don’t eat it! And, it’s actually not just 36 hours of being ill, the knock-on effects can last days, sometimes weeks if it starts you on a downward spiral. I have to make the decision sometimes not to go to the gym or a fitness class when I know I probably should, but I know that my body is tired, not just tired, it’s exhausted from the week I’ve had. Yes, the exercise will help me in the moment and help me feel good but it would tire my body more than I realise - so I don’t go as much as I should or want to. But I do go when I can and my body is well enough and that makes the difference.
This is what my life is going to be like now. Unless they find a cure, or the Humira gives me a type of remission I’ve never experienced where I can drink lots of lager and wine, eat chocolates, digestive biscuits, cheese and biscuits, creamy foods. Where I can be really active and not be fatigued or suffer from aching joints. I’m hopeful that I might get this one day (I’m only one dose of Humira in as I'm writing this so it’s still early days). But, I’m not going to wait around seeing if it will happen one day. I need to do whatever it takes now to lead the life that I want… and right now I am. The booze and food is worth sacrificing in my eyes for the other great things I get to do with my life.
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