Humira diary part 2 - Simon Booth

By Simon Booth | June 17, 2016

In November 2015 Simon Booth started keeping a diary for IBDrelief as he started taking the biologic drug Humira to treat his Crohn's disease. This is part 2 of his diary.

If you haven't read part 1 you can read it here.

MONDAY, 4 JANUARY 2016 - 19:48

Back into routine

Today was the first day back at work for me after Christmas and back into a Monday routine! A body combat class this morning followed by work and then a yoga class in the evening.

I tend to be on the road Tues to Thurs with little or no activity so tell myself (usually on a Tuesday when I groan getting out of bed like an 80-year-old) double classes on a Monday is a good thing!

As I was thinking of my Monday routine, that also includes certain conference calls with certain members of my team, it made me think to my body and having a regular pattern. In particular my bowel. I used to have a very healthy, once a day in the morning routine compared to now which can range from not at all to numerous times a day at any given time, day or night.

As an example how I can go from one extreme to the other - yesterday I had to rush to the bathroom twice early in the morning within 30 minutes of each other and passed liquid, black, foul smelling stools...and it's now 36 hours later and I've not been since. Even after the pain I had last night after a very safe pasta bolognese tea, I thought I was in for a rough ride today - but literally nothing!

In our world I never know if that's a good thing or not... Have I become regular from my Humira and this is a good routine...? Or, am I slowly, blocking, building up somewhere waiting for the pain to start waiting to be caught out as I drive 200+ miles tomorrow? I'll keep you posted.

SATURDAY, 9 JANUARY 2016 - 05:38

The Tastiest and Most Regrettable Mini Loaf Ever

Morning all, yes it is Saturday and that's right it's 5.30am and I've been awake for half-an-hour already! Why am I in the wide awake club tonight?! Because I ate brown bread! Something so wholesome, tasty, full of goodness has made my stomach kick off with the washing machine feeling and it's so strong it's woken me from my slumber!

I was out with a close friend last night for dinner and we shared this mini loaf of bread (when we say mini it was a good size still) and at the time it didn't even register with me it was brown is now though!

As I'm laid here it made me think of my week and symptoms and general wellbeing and what better time to capture all of that at what is now 5.44am. I've given up the idea of sleep. But I'm pondering whether or not to make a brew!

It's 5.56, I'm on the sofa, with pondered brew, a blanket and my Wheaty on my stomach hoping some heat therapy will settle the...upsetness? I'm questioning as I really don't know what to call it, it's not pain, it's just upset, not happy, annoyed at me for eating the wholesome brown bread!

What's the week been like then?! Saturday and Sunday mornings were both dominated by the toilet amongst decorating my office. I had a few of the “run like the wind” to the toilet moments within 5 minutes of eating breakfast and vacated the black, smelly, oily, loose mess again like I had been last week. Only in the mornings though - in the afternoons and evenings I didn't go again.

Monday was my first day back at work after the Christmas break and I didn't go all day...not at all. Which I never know if it's a good thing or not! Tuesday I was starting to feel the real effect of this though by the evening after approx 8-9 meals now backed up somewhere. I had started back on fruit also which slows me down/bulks me up at times.

As I arrived at my Tuesday night hotel I finally needed to go and it was explosive! That's enough said about that.

Wednesday was a busy day for me in the office so I was there from 7.30ish and knew my bowels weren't happy. I was happy though that they were moving this early as I could go use the men's toilets and not be concerned about others being in there, it smelling and being very audio descriptive. We only have two cubicles for the gents in my whole office (we're in the minority so only need the one set of toilets apparently) and I hate doing the awkward hanging around waiting for a cubicle to become available whilst clenching my bum cheeks.

Thursday I was generally fine, a little bit washing machine like but no movements at all!

My emotions have been a bit heart monitor-like this week (think of a heart monitor and the peaks and troughs it traces on the screen- up and down, back to the middle. Up and down, back to the middle). I've been anxious about a certain situation and needed to do some soul searching about the right thing to do. I was also involved in an HR issue at work which was incredibly complex and a little hostile at times which had my emotions less heart monitor like and more white knuckle rollercoaster! Emotions, especially stress and anxiety, play a massive part in how my Crohn's affects my body.

It wasn't until Friday that things became normal, a visit in the morning that was solid, easy to pass, not smelly and meant I was only in there a maximum of 3 minutes rather than the normal 5-10.

This was a week on since my injection! Maybe the Humira needed a full week to get into my body and make an impact?! And then I went and ate brown bread! Well done Simon! On reflection I have also had a few cases of the stabbing pain this week. When I say a few I mean a few every day. The stabbing feeling is just that (ok I've never been stabbed before, or consciously awake when being opened up by my surgeon which is kind of being stabbed isn't it?!). It's this unexpected sharp stabbing feeling at the front, side or back of my gut that makes me jolt wherever I am and sometimes actually yelp out in pain. Before my surgery I always had it on the right hand side and they were at their worst after big meals. I seem to have them at different places now and can be at any time after any kind of food.

I'm not 100% sure what they mean and should research it. My gut tells me (how have I never used this pun before!!) it's matter being pushed through a small space that has been backed up and the pressure has built to the point it forces it through. If this is true, small spaces are not a good thing.

Moving away from my inside pipes I've really struggled with fatigue this week! I mean everyone is tired this first week back after holidays (which is ironic as we've all been off work). Getting back into the routine of the alarm waking you up at an ungodly hour (7am!), having to be out the door at a certain time etc. makes the first week back a week of adjusting to the routine again. I've been exhausted though. Wednesday night, after dinner with a colleague, I was laid in bed by 8:45pm falling asleep whilst reading my Oprah Winfrey book (great Christmas present from the Ops Director!). Mornings have also been a real struggle with little motivation to get up when I should and plenty of temptation to snooze!

Who knows what I'll be like today seeing as I've only had 5.5 hours sleep and have a pretty jam-packed day!

I know that I need to be careful over the weekend and into the first few days of next week. When you look at the pattern, I tend to start feeling symptomatic again a few days before the next injection which means from Tuesday onwards anything could happen. I need to do all I can to not feed it!

How are you? I often forget to ask after those of you who are reading this, if there is anyone?! Even though I don't ask I think of the IBD community a lot and remind myself how fortunate I am in some ways as I read every day how others are suffering more than me. Hopefully this has given you some comfort, a sense of escapism, even if for a few moments, some solace in knowing you're not alone, hopefully a smile that warmed your soul.

Take care of yourself and what you have been given - it's what we have so we have to make the most of it! 


WEDNESDAY, 13 JANUARY 2016 - 21:26

Creating my own hole in the Ozone!

I'm sat on a train heading from London back to Maidenhead. I've been into the city to meet an old friend for dinner and a catch up tonight- we've not seen each other for we thinkӬ for almost 10 years, which is ridiculous but it's what happens sometimes.

Are you wondering if I told him about being a Chronie?! Well I did! I knew early on that I would tell him (it's the biggest change over the last 10 years) but I also wanted to explain my reasons for being really fussy around restaurants. Nic was going to find us somewhere and I had to let him know I can't do spicy, creamy, too exotic etc! I always worry about explaining this to people who don't know about our disease as I wonder if it's seen as fussy, being awkward or sometimes just boring! We chatted for over three hours which was so good and not awkward at all. When I told him about my diagnosis and treatment over the last two-and-a-bit years I was really taken aback by his reaction...he was genuinely upset for me! He knew all about Crohn's and had been researching it (he admitted to Facebook stalking me so I wonder if he already knew) so I lost all my uneasiness and it was nice to chat to someone who was a little informed already! It reminds me that IBD isn't as well known as it should be when you look at the amount of people who suffer and the new cases that are reported each year.

Nic if you ever read this thanks for a lovely evening!  

So what's with the hole in the ozone layer?! Oh my goodness I am full of wind! That much wind that it's enough to create a new hole in the ozone layer but also fuel a space shuttle through it and back! Now I can't complain too much, my stools the last few days have been fairly well behaved, regular, relatively solid. The flip side of the well behaved, regular, relatively solid is the sharp stabbing pain is there every now and again. I was laid in bed this morning and the noise from my pipes could have woken someone up and the amount of wind it's creating is unreal! I've been in back-to-back meetings all day today at the office (hence why I'm heading back to Maidenhead now ready for day three of the office tomorrow) and I've had a day of awkward bum clenches to stop myself passing wind in embarrassing situations.

All the wind makes me want to visit the toilet but with being in meetings I get worried people will wonder where I am for long periods of time. At the end of my last meeting today all my colleagues were leaving and I thought “phew I can just go sit in a cubicle now and take my time”, but someone offered to wait with my stuff whilst I went to the loo so it wasn't in the meeting room on its own. I kindly declined and told them to get on their way and they said it was no bother...what are you supposed to do?! Say, “actually I need to go the toilet and I don't know how long I'm going to be!”?

I've generally been better with my diet this week, more fruit and veg which has helped with the stools with the fibre intake but it's adding to the wind and pain problem. Maybe I need to do a few days now cutting back on the fruit and veg and sticking to my safe foods - bread, crumpets, jelly and lots of green tea!

It's also T minus two days to Humira Day so maybe that will make a difference!

I'm sat on the train clenching...I don't want to stink the carriage out!

SATURDAY, 16 JANUARY 2016 - 11:12

Today I turn 31!

Yes today is my birthday! Today is Saturday and I took yesterday off to have a longer than normal weekend.

My mum wanted to take me out shopping yesterday which was also Humira day so she came to pick me up at around 11ish and we headed off to York for a spot of retail therapy.

The injection itself was fine, the first one solo with no-one else around. Everything went fine. I remembered from the last injection at my brother's house that I had been really tense in my thigh so gave myself a few extra seconds to breathe and relax all over before I pushed the button.

I am definitely seeing the pattern of what is happening a few days before and after I am due my injection. The pipes start to be uneasy, I feel bloated, noisy and some toilet visits aren’t as solid (I was trying to think of a different word to describe this but I may as well just go with the easiest). The biggest thing I am noticing is the fatigue. My gosh I am tired. Like exhausted. That tired I actually could just curl up in a ball and cry a little bit. Not many people can empathise with this but many of you will. It gets to the point that being exhausted becomes exhausting.

Mum and I were walking around the designer outlet and I could have happily laid on the bed (we were in a bedding shop at the time) and snoozed!! With the fatigue comes the aches as well - my knees, shoulders, wrists, even my finger joints feel aches. If you’re not aware of it, because our immune systems are over-reacting all the time it doesn’t just target the intestinal tract, it causes inflammation all over the body. I also suffer with my gums - they become inflamed still when I flare or am getting low on the Humira.

A few coffees later and some food and I felt slightly better and we headed back to my folks. I spent the night here (mum doesn’t want me to wake up on my own on my birthday) and we went to the pub for tea, which was nice and relaxed.

I’m celebrating today by going out for lunch with family and then heading back to Beverley to go out for dinner and drinks with friends...let’s hope I can stay awake for it all as I am still feeling like I could sleep forever!

Happy Birthday to me, 31 years of living but my body feels like its actually been going for 60! You have to take the rough with the smooth though. I am not as ill as others and as ill as I have been in the past, so I’ll take it! 

SATURDAY, 30 JANUARY 2016 - 14:00

Last night I became a mixologist!

The morning after the night before! January is a busy month for birthdays! Not only is it mine but my cousins also have theirs in January and we always go out to celebrate all three. Sounds extreme but we enjoy each others' company, good food, good wine and we don’t actually need an excuse for any of those but always go out and celebrate.

Laura turned 21 this week so we went out to our favourite restaurant in Beverley last night called The Westwood. There were 15 of us in total and we had a big square table to ourselves upstairs and there was plenty of gorgeous food. There was also lots of drink and this is where the mixology comes in.

Now I didn’t create a new cocktail for others to drink but I did allow my stomach to experience a whole concoction of drinks. I started with gin and tonics, went onto wine at the table (I must have had a bottle to myself), then onto mojitos and there was even some vodka shots.

Now those of you who have read my other entries, you’ll know that I am not a massive drinker (really I’m not), as drink has such an effect on my Crohn’s and makes me really ill the next day...but I had been feeling really good this week and thought that maybe I should give it a go.

Talking of having a good week, I had this big realisation halfway through the week, whilst sat on the loo...I’ve been normal this week. I’d only had once a day toilet visits, mainly in the morning and solid...all week! There had been no pain, no washing machine stomach, no noisy pipes and I’d not even realised it! How crazy is that! The Humira was finally kicking in!

Cue all the family being together, a celebration to be had (Laura’s birthday not the Humira kicking in) and I let my hair down and drank to the point of being really drunk! It was a really good night, lots of laughter and catching up with one another.

I woke up this morning feeling a little woozy but nothing a quick walk couldn't sort out (I was looking after my cousin's dog as they all stayed over in Beverley) and then we all went out for breakfast together.

It's in the pub where we were having breakfast that my body let me know it wasn’t quite ready for a night of rich food and a mixture of drinks. I had to disappear for a good 10-15 minutes (thankfully they’re all used to this) and felt slightly bothered that the alcohol had its normal effect on me. Now in hindsight there is nothing saying that whether you suffer with Crohn’s or not a night of rich food and booze could do that to anyone, but I had set myself an expectation that I was in a good place and would be fine and normal.

So to help all of this I am now laid out on the sofa with a blanket, Grey’s Anatomy on in the background (I’ve started watching it from the beginning again) and I am out with friends tonight in Leeds and need to get myself ready for round two! I think a snooze is in order and I may cheat slightly and take some Imodium. I normally wouldn’t take Imodium if I’ve been having lots of pain but it’s literally just loose bowel movements I need to control so they might help!

Lesson here - it looks like the Humira is starting to have some effect on my Crohn’s but I need to take it each day at a time still and not rush into too much too soon. 

MONDAY, 8 FEBRUARY 2016 - 08:15

Sample Day!

I have my 3 month follow up with Dr S. in 2 weeks. I cannot believe I have now been on Humira for 3 months almost, it’s gone so fast!

Injecting myself is just becoming routine, I’ve thankfully set myself reminders on my phone and online calendars to remind me every other Thursday that I need to administer it the following day, or I genuinely think I might forget.

What I also forget is which thigh I injected the two weeks before so I’ve started to make a note each time on my phone of the date and either R or L reminding me which one to use when I am due.

The company who supply my Humira sent lots of useful literature and a handy diary where you can record each injection, where you injected and any symptoms you’ve been having. I’m not really a pen and paper type of person for that kind of stuff though but I know others would benefit from it.

I’m definitely feeling like I have energy again, I’m halfway through my last dose and due my next on Friday. I’ve been away working all weekend in Essex and London and managed to work, fit in two visits to the gym, dinner with my cousin Laura and breakfast with my friend Nic. I’ve not felt this sort of energy for so long, it’s so refreshing. Do you ever have that feeling in your lungs when you step outside the front door on a cold, misty, slightly icy, frost in the air morning and as you inhale your lungs feel the subtle sharpness of the chill in the air. I find it really refreshing, only for a moment before I actually feel the cold, but its the kind of feeling that reminds me I am alive. I feel that kind of refreshed every day at the moment - everything seems to be coming together and in a good way!

I’m actually looking forward to seeing Dr S. to see what he has to say. One of the tests he will measure whether Humira is having the right affect is through my calprotectin levels which is found in my stools... so that’s today’s job... get a stool sample! It’s so much easier now I am solid and definitely less gross than previous samples I’ve had to get. 

FRIDAY, 12 FEBRUARY 2016 - 12:50

I’ve Caught a Cold!

Last week I was revelling in having a renewed energy, able to go to the gym more than normal, not feel fatigued and well-behaving bowels. A sign that Humira is working.

Humira’s primary function is to specifically target a part of your immune system, the part that causes inflammation, which is the body’s natural response to infection, and stop it from doing its job. To do this the immune system becomes less effective. If you’ve ever researched or have taken any immunosuppressant medications or biologics then you’ll know there is a long list of possible side effects and precautions you have to read up on.

One of these precautions is to be careful of contact with ill people - especially those with Chicken Pox, TB or other air-borne infectious diseases. I’ve not come into contact with anyone like this (thankfully for me and for them) but the office this week has been full of sick people with colds and coughs.

In a management meeting this week everyone was coughing, sniffing and sneezing apart from me. It actually made me feel rather uneasy! The next day my tonsils felt like they’d grown to the size of kiwi fruits and also have the outside hairy texture of said kiwi irritating my throat. They're still here today and I’m a bit snotty and feel tired again now, not just a “I could have slept in for another 30 minutes” tired, it's the “my whole body aches, my head is cloudy and my eyes feel heavy and sunken in their sockets” kind of tired.

It’s Humira day today, so I know this is a mixture of my body having some symptoms again (the bowel is ok, it’s the secondary symptoms) and the likely germs I’ve picked up from the office!

I’ve had to use up some holiday days so I am having a three day weekend of seeing family and resting, hoping I can shift the germs with minimal impact on next week.

THURSDAY, 18 FEBRUARY 2016 - 18:00

IBDrelief is live!!

I’ve just had an email from Emily from IBDrelief and the website is LIVE!!

My face is on the internet! Not only my face, three articles from me on my Humira Diary (part one, this is part two), my surgery and also my diagnosis!

I hope it helps and if you’ve not read my other articles and want to know more about being diagnosed or having an ileocaecal valve removal then you can find them on the IBDrelief website!

I am in two minds of whether to share my articles and the website on my open social media feeds. I’ve promoted them on some closed groups I am part of for other IBD-ers. These articles aren’t for everyone to read, they’re for the IBD community and those who support others with IBD. I also don’t think everyone on my Facebook wants to read about my toilet habits either.

I’ve shared them with a few close personal friends and family members. My mum cried and said that I described living with this invisible illness incredibly well (mum has UC). My oldest, closest friend Fliss, who lives in Manchester rang me to say how brave I am for going through what I’ve been through and that she had no idea that it was so bad at times!

The people who matter get to read these, my close family and friends and you lovely lot. The whole idea behind me writing these articles is to help others like me. I hope it is helping!

Well Done Seb and Emily the website is amazing, I’ve thoroughly enjoyed reading other peoples stories (I am so fortunate in many ways), finding some similarities between them and reading really insightful articles about our conditions! Onwards and upwards to helping more people! 

MONDAY, 22 FEBRUARY 2016 - 16:00

Did someone mention the R word...

R word as in R e m i s s i o n...?!

I had my three month follow-up with Dr S today. I knew this was coming up as I had to send in my stool sample two weeks before for my calprotectin levels to be tested. This was going to be the real measure if the Humira was working or not.

As I was sat in the waiting room I made a point of making a note of some questions as I always seem to get into the appointments and then can never remember what my questions are and think of about 20 as I am driving home. I also made sure I reflected over the last few weeks and how things had actually been. I wrote about my appetite, when I had pains, number of toilet visits etc so that I could give Dr S a full overview of how things had been - but the picture I had painted was promising. Pain was less, toilet visits less, hardly any diarrhoea, but I was struggling with fatigue, swollen stomach, achey hips and joints and that I noticed I was picking up more cold like symptoms - runny nose, scratchy throat, swollen tonsils etc.

It definitely helped when I then got into my appointment with Dr S as his first question was how I was and I was able to give him a really clear picture, which was good.

He examined me by pressing down around my scar and lower abdomen and explained that even though he could feel some hard places this was more likely scar tissue from my surgery. Last time he had examined me four months before he had felt much harder places and said that it was swollen/ulcerated bowel so today was much better than before!

We then moved onto the calprotectin levels and this was where the news came... When I was flaring last Summer my calprotectin levels were measuring over 650 and that was too high for being on azathioprine, hence why they then wanted to put me onto Humira.

My calprotectin levels two weeks ago were... 85! 8 5 ! 85!! Now anything over 50 is a sign of inflammation but Dr S. says that it’s very unlikely I’ll even get below the 50 mark but the fact I have dropped from over 650 to 85 was an incredible sign the Humira was working! I was so impressed and pleased and had such a sense of relief! It was the best news I’d ever been given since I was diagnosed with Crohn’s disease!

I am in REMISSION!! 

FRIDAY, 18 MARCH 2016 - 22:48

A Day of New and Old Tricks!

It's Friday. The end of the working week! And what a week it's been. Very busy with work and I've been, as always at the moment, hungry constantly!

Still trying to understand if I'm eating for the distraction from the stress at work (incredibly possible) or if it's the increase in activity and running!

I managed two runs this week and a body combat class.

My run this morning was my old trick this week. I needed to be out the house by 7.45 and the gym doesn't open until 6.45. So after a 30 minute run I knew I was cutting it fine to get back home, shower, dress, eat breakfast and get out the door in 30 minutes.

As I was awake by 6, meditated until 6.15 I decided to go run outdoors! This is one thing I've not done for over 12 months. I was training for a 10k last Jan/Feb and after my second hospital admission in six weeks flaring I had to knock it on the head!

Now that I'm in remission I thought I'd give it a go. I've been running on the treadmill as it is and that's not been having too much of an impact so didn't see how road running would...I loved it! The fresh air, good music in my ears, the ability to admire the countryside around me! I ran 5k in 30 mins and could have carried on a bit more I think! So something I'm going to experiment more with!

My new trick...Well I've spoken about my new addiction/admiration for lattes. They give me comfort but also a kick of energy and focus when I need them but I'm really aware that lots of milky drinks are not good for my weight (I have stayed the same this week though which was lucky!) so when in Starbucks today I decided I would try a soy milk latte as the unsweetened versions are supposed to be healthier and lower in calories!

What was missing though was the nice taste! I won't be trying that again! And I don't think soy milk is good for me either as I've had two really loose bowel movements today, loosest I've had in a long while...

So now I need to figure out...was it the running outside or the soy milk...let the next round of experimenting begin!

I've definitely noticed an increase in my energy again this week after Sunday onwards. I was planning to run yesterday (Thursday) but felt really tired and achey when I woke up so decided not to go. That's what I have to do each day is assess my body, how is it, what can it manage and not push it beyond it's capability!

I think I'm getting the hang of it! 

FRIDAY, 25 MARCH 2016 - 05:51

The Cycle Continues!

Morning! It's 5.50am on Good Friday and I am wide awake! Yes Bank Holiday Friday and I'm up before 6am. Harsh!

My alarm goes off religiously 6am Monday to Friday anyway so I know this is my body clock. (I read an article on things to do when you turn 30 and one was to have a regular time to go to bed and wake up, so I'm embracing it). It's still rather annoying as I've been so tired the last few days.

And this is the cycle now which I think I've mentioned before. Humira is every other Friday and I'm always noticing some symptoms from the Tuesday before - I'm tired, lots of wind, increased toilet visits (although they're all solid movements!) and the odd bit of pain. So nowhere near the extreme of what I've faced before and many of you experience every day, these are totally manageable and I'm”¨able to live a normal life. I'll have my Humira today and by Monday I should be back on top ”¨form and get a good 6-8 days of “normality” I call it.

As for the tiredness I had my blood tests to measure my B12 levels at Dr S' request. The last part of your small bowel is where B12 is absorbed by the body and I've had a chunk of that removed so it's possible I'm not getting enough. I had my results through and they are satisfactory which is great news - it means one less injection every month!

I'm still trying to figure out if my constant hunger is a (welcome) distraction away from the busyness of work (not sure I've mentioned I'm doing maternity leave cover for my boss as well as doing my it's pretty full on) or it's the exercise. This week I've ran three times and done two classes, which isn't an awful lot really and I have gained 2lbs this week. I did bake loads over the weekend and made an amazing Creme Egg rocky road! So I have also carried on eating like a real trooper!

So why not stop the exercise and see if that curbs the hunger? Is probably the question you're all asking, right?

I'm really enjoying it (most of the time) and going for a run, outside or on the treadmill and going to classes are one of my things. My me moments, a bit of smile time, time that's not dedicated to the job or to chores around the house. I try and make sure every day I get at least 10 minutes of time to myself - mainly through some short meditating every morning. Weekends I then try and ramp it up and read a little, see friends, bake, go for meals out, spend time with my family. All things that I love to do. And they're all pretty much centred around food so the exercise is helping me keep on top of it...hopefully!

I tried porridge again yesterday morning...and then had a day of lower back ache and multiple visits. I knew I was in trouble within five minutes of eating it (not loads of trouble like I used to be) but my stomach was saying to me, “Really?! You know this isn't the best choice” but I wanted something filling to curb my snacking. On the almost six months of steroids last year I didn't gain any weight, in fact I lost over that time...maybe it's come back to haunt me now!

And it's now 6.20am, I've been and made a brew and brought it back to bed with me as well as my Humira pen that is warming up under the pillow next to me. I am seeing lots of posts and comments about Humira recently on social media and stories about how Humira can stop working after a period of time...I'm not even letting that be a worry right now. Life is about living in the moment and doing what you can, so whilst it's working I'm going to lead as much of the life I can and enjoy every single moment!

SUNDAY, 3 APRIL 2016 - 21:31

Uh Oh...

Easter has been and gone for another year and I can slowly start to transform back from looking like a Creme Egg to my normal self!

The Bank Holiday weekend was spent with family and friends, eating, drinking and socialising which was really nice. I made sure I kept my 'A Game' with the activity front to counteract the obscene amount of calories I was consuming (I baked Creme Egg brownies and Creme Egg rocky road which was amazing) and ran several times and made it to some gym classes too and it paid off, I still lost weight this week! I’m on a mission to get back to my Fiji weight which I am 5lbs away from, before I go to Italy at the end of May.

Now you may think - why on earth is someone with Crohn’s who is in remission trying to lose weight - when it is normally a bad thing for us. Well that’s the thing I am in remission and have an appetite again and cannot stop eating so even though you can’t really notice the 5lbs, if I don’t get a hold of myself soon I’ll be eating and eating and eating. I want to try and stay as healthy as I can with a sensible diet and regular exercise so my body is as fit as it can be, when I need it to be in the future.

Also when I was in Fiji in December last year I really noticed a difference in how flat my stomach was and I’m hoping the loss of these 5lbs will make it look that flat again...if it doesn’t its a sign that the steroids are the reason why I almost looked like I had a six pack and what I have now is the inflammation “pouch”. I kind of already know it’s this and that it’s something I’ll live with as first thing in the morning I’m “washboard” flat and as soon as I eat or drink anything - boom the pouch returns! I might call it Joey! As in baby Kangaroo - pouch - Joey...?!

Anyway enough of the Easter and chocolate and wish for a flat stomach - the real reason for my update today...I’ve had some rocky moments this week (hopefully not from the rocky road ;-))

Tuesday I had noticed that I was becoming more frequent and visited 4 times, which was a lot for me since the last few weeks, I’ve been regular Joe, once a day, nice routine.

Wednesday afternoon I started passing blood. Now this is a slight concern for me as I have hardly ever passed blood before. The first time I knew I was poorly and something wasn’t right was when I passed a large amount of blood and that kicked off the journey to my diagnosis (weirdly almost three years ago come May). I can’t recall a time that I’ve bled since if I am honest and Dr S has said in the past that because my ulcers were in my terminal ileum the blood from the ulcers would have been re-absorbed by my large intestine before passing any stools, so they wouldn’t know if I was bleeding or not.

I definitely was Wednesday and today is Sunday and I’ve had more tonight. I know as it’s on the toilet paper and the water is a brown/red mess. The stools are really loose and smelly too.

I’ve had some small pain today, nothing major and not sure what to pinpoint it on.

I read a really interesting article on IBDrelief that said food takes around 36 hours to pass through your digestive system end-to-end, which theoretically means that when I’ve been bad I need to look to the food the day before and not what I’ve had that day.

The only thing I can say that I ate yesterday that might be causing me some upset today is granola! I had maybe 2 tablespoons over some fruit and yogurt with my parents for a healthy dessert and oats are normally a big no-no for me - but I had been having granola on fruit for a few weeks now and it hadn’t done this before!

So I am a bit worried...some pain, loose stools and blood aren’t a good sign. So I’m going to be really good with my food for the next few days and see if that makes any difference before I put a call into the IBD nurses to check in with them.

I’ll also calm down with the activity (which works out nicely as I am away with work Tuesday and Wednesday in Solihull and Thursday I get to go to Dusseldorf for the day, so can’t fit it in) and make sure I’m not putting my body through any extra strain that it needs too.

It might just be a blip, no way could I only get two months of remission from Humira... could I?

THURSDAY, 7 APRIL 2016 - 07:13

Plane Wind....

Today I'm flying in and out of Düsseldorf for a meeting with some European colleagues! 7am flight (it's actually 7:14 and they still haven't closed the doors yet which is rather annoying!).

With it being such an early flight it meant I was up at 4am! Now 4am for a flight is ok...when you're going on holiday! I was sat ready for breakfast in the terminal by 5.30am thinking, “this will be a long day you need to set yourself up right” cue ordering the breakfast brunch! 2x sausages, bacon, scrambled eggs, beans, potato wedges (which I found rather weird), tomatoes and toast! It looked immense and tasted....greasy! Urgh!

Planning ahead I thought to best visit the looӬ before boarding the plane...and didn't need to go. Ok drastic measures are needed. I know just what to do, drink coffee! Coffee drank, still nothing and then it's time to board.

And Sod's law I'm now sat on the plane waiting to take off on a 90 minute flight and now I am full of wind and want to annoying!

Luckily I have plenty of water and think I'll be able to pass 90 minutes...I hope!

The blood in my stools has gone and it's Humira day tomorrow. It comes round so fast I sometimes forget until my reminders on my phone go off!

SUNDAY, 10 APRIL 2016 AT 09:02

Balance Vs Strict Routine!

A few entries ago I made a commitment to be better with my food knowing that it plays a big part in the symptoms of my Crohn's. And I've not been great at keeping it.

And I know why, it's this downward spiral that is so easy to get caught up in of feeling tired (working too much and long days), then not making wise food choices (I reach for the complex carbs because I tell myself it's the right thing to do as I'm tired) but then end up with the 4am washing machine stomach the next day, stabbing pains a few days later if I've not got out of the downward spiral and generally crappiness!

And now because of the Humira playing it's amazing part in my health (I know I've just listed symptoms but they're nothing compared to a full blown flare), I'm noticing a new trend. Im socialising more, which means I'm drinking more which means I also lose good food choices, eat crap and end up with 4am washing machine stomach!

I'm not admitting here to being an alcoholic, at all. But it's really got me thinking recently about balance. When I was still ill after my operation and two more hospital admissions, there came my 'a-ha' moment where I committed to getting myself better through my diet and cut out all sorts of things - brown bread, oats, fizzy drinks, popcorn, soft cheeses, spices, cream etc. And it helped in so many ways, I was still ill but not as bad and it was the right thing to do cutting all that out from my diet.

Now that I'm feeling healthier I'm having the internal battle on whether I should be as strict as I was back then, this time with the booze, chocolate, some spices, cheeses, oats (the things I really want to eat and drink more often) or whether I can relax a bit and take the 4am washing machine feeling as a given and accept that it's a way of life.

Why now? because I did it last night! A friend came round for tea, I cooked us Moroccan Lamb and couscous which had a variety of spices and chilli in (not a lot) and I drank a bottle of wine (maybe 1.5) to myself and we had chocolate too! Didn't get to bed until 1am, 6am I'm awake with a headache (that was obviously going to happen) and mega washing machine syndrome!

But I thoroughly enjoyed myself! What am I doing internally to myself though?! Can my body cope with this more now I'm on the Humira? Am I actually doing my body harm without realising it?!

But can I live another 50 years (here's hoping) with no balance and a strict routine? For me the key word is balance. I'm not going back to my constant unhealthy diet and sedentary lifestyle again ever and will have “moments of life” (good name for it?) where I can relax the rules but get back into the right zone soon after!

Example is today - not exercising today as I have some runs and classes booked in for the rest of the week but my diet today will be healthy and nutritious...I say as my stomach is starting to make its unhappy noises...Let's see what the day brings!

Balance vs Strict Routine thoughts are welcome!


My final entry

I feel in a strange place with my Crohn’s at the moment, which sounds strange in itself. I am well, healthy, energetic, keeping fit but something is not quite right. It’s not bad enough that I am ill in any way but every now and again I get the sharp stabbing pain and it's becoming more and more regular and general “washing machine” stomach makes its appearance with the nice bloatedness (or that could be all the carbs I am craving at the moment). Even though I have these symptoms, toilet visits are pretty normal - not as normal as they have been and when I am ready for my next injection I am always in there more, but nothing like what it can be like.

So I keep wondering what’s going on. I haven’t phoned the nurses, as I don’t feel ill but it does cross my mind whether this is the start of something and whether it’s going to build over time perhaps.

What I need to do is get a control on my eating again. I am swinging like a pendulum from ultra healthy, with too much fruit that I am too bulky, hence the pain and constant wind (that stinks!), all the way to the other end where I am eating tubs of Ben & Jerry’s and multi packets of biscuits. That amount of refined, processed sugar, carbs and dairy is not a great thing for me either.

I’m finding it hard to be motivated to keep a balanced diet though when there aren’t any major consequences. It was so easy to cut out porridge, fizzy drinks, popcorn, alcohol and spices when they made me really poorly. I do wonder though maybe having some more control will stop the stabbing, bloatedness and washing machine cycle!

I fee like I am ready for a bit of 'Life Spring Cleaning'. My maternity contract at work has finished which means I am finding a little bit more work life balance as I transition my boss back into work. With this, it means I can really spend some more time focussing on me again and getting back to my ‘zen’ that I had found between August and December last year. I’ve definitely lost a little bit of that. Not only some 'Life Spring Cleaning', I think I could do with a general sort out around the house and spring clean around here, which will help focus and sharpen my mind more in what the next six months look like. I think I am going to dedicate them to me. I’ve had six months on my career, which was amazing, busy, stressful - but amazing. Now I think I want to get my health, body and mind back on track and see what affect that has on my Crohn’s. 

And it all starts from Thursday as I am then on annual leave for 2 weeks - one week which will be spent in Miami!
Simon Booth

I'm a 30-year-old guy from East Yorkshire diagnosed with Crohn's disease in 2013. I had an ileocaecal resection in 2014.

Find this article useful?

Why not sign up to our mailing list and receive regular articles and tips about IBD to your inbox?