World IBD Day

As this ordinary Monday comes to a close to many, I sit here going into the final few GMT hours of World IBD 2014 with some unrest.

Should I show them? No one has seen these before, I’ve not allowed myself to bear these photos to other humans, not even other IBDers.. what am I scared of? What am I afraid of, apprehensive about? Why not be brave and share you, Louise?

Yes, I even full first named myself, that’s how much of an indecision this is.

But, I want to show people what IBD can do to you, of what it did to me. Of what no one but my parents saw outside of the hospital. Of how different it made me, how it changed me. How much my illness showed on my surface.

I was diagnosed with Crohn’s Disease in September of 2012. I had spent the past 6 ish months prior to this with mild symptoms, none of which would ever point directly and strongly towards IBD. At most, I thought I was just stressed out and I was having a hard time eating and keeping food in me. But in reality, I had suffered from some sort of digestive problem for majority of my late teenager years, and definitely throughout my four years at university. But in August 2012 I got really sick and I never really came out of it, until they scoped me and found my very ulcerated and scarred colon.

Things did not improve on diagnosis. I continued to tank pretty rapidly, no matter how much I improved one day, I always took two steps back. It was a uphill battle, and I would spent the autumn in and out of the Gastro ward. My medications didn’t help, I could hardly keep food in my system long enough to help my thinning frame out, and I still could not stop visiting the bathroom. I was a hermit in my own house. I was desperately alone. I was depressed and angry and generally unhappy. On my final hospital visit, I had dropped down to a shocking 7 stone and could hardly stand. I was finally sick enough to get the really strong drugs; biological treatment.

This is what I was on the first evening after my first double dose of Humira; mid November 2012:

IMG_1730     IMG_1730crop

I was just over 7 stone here, wearing size 8 clothes. I had a flat but still bloated belly, tiny boobs (compared to what I had always had), I could feel every joint in my body sticking out; my hips, knees, thighs and shoulders were particularly jarring.  My legs were so thin and pale, I had lots alot of my thick hair and cut it all off (which I regretted but now love) and looked under fed and unwell. But despite that, I had just started Humira and was finally not feeling sick or at all out of control of my bodily functions. I could feel some of the power coming back to me, not to my disease. 

IMG_1728I was so small and thin. I can hardly believe that this was me.

I sometimes wish I was looked like this again. Not felt like this, because nothing was as horrible as those 6 months. I might have clear skin, be thin and have a flat tummy, but I was sick. I know I am still sick, but in a different way. If anything my disease is covered up (through many many layers of fat and confidence, I hope!) But still, I hate all this weight gain and how difficult it is to shift it, let alone how much I battle with my self confidence nowadays.

So, as you can see, IBD affects me even now, even now that I am not sick like I was above, even now that I have good medications, remission and a great GI, even now that I have a new job and lots going for me, IBD still affects me EVERY DAY.

That is what is neglected. That is what is missing, for me at least, I feel lost when everything is going well, health wise, everything else become more acute – my confidence, my relationship, my friendships, my job, my struggled, my fatigued. Because no matter what happens, if people do not see you or hear you in pain, they assume that everything is okay. IBD is not just physical battle, it is a emotional battle too.

 

Day Nineteen – Vintage

Post a vintage photo of yourself, with a captain about the photo and where you were in terms of your health condition.   This is a photo I took the afternoon of my first Humira injection. It was the first time in almost 4 months that I felt okay. Not good, or great, just okay. It was a big step for me, I was so thin and unsure of how I looked, I couldn’t even look at the camera. I was shocked as how much weight I had lost and how different I felt without any hair. I felt weak. At […]

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Unhappy isn’t even half of it.. I’m full of anger, too.

Yesterday, my Humira injection was due. Yesterday, I visited my GP to discuss my ongoing symptoms. Yesterday, I was told I was had gained so much weight that I was unable to take contraceptive pills. Yesterday, I cried and inwardly cursed the drug that had brought me back from the brink. Yesterday was tough. I finished work in the middle of the afternoon, carried myself up the road to the doctors. I sat with my new GP – a lovely Welsh lady – who wanted to know why I was back, not even a week after my last appointment. Basically, […]

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The needle stick

For those who are new to this blog or need some reminding, I currently take Humira as my only method in my Crohn’s treatment plan. I’ve been on it since December 2011 and for the most part, it’s worked well. However, for whatever reason or a mixture of reasons, lately, its been causing more problems than it solves. That aside, I know more Remicade Crohn’s patients than I do, Humira ones. In fact, in that spectrum, alot of the people I’ve come into contact with Crohns, take tablet treatment also, or instead. Despite being a “treatment for moderate to servre […]

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Another.. second Thursday?!

It feels like forever since my last injection of Humira, but it was only two weeks ago. Alot has happened in two weeks… So, I almost forgot the date and day and that it was indeed time for some more lovely Anti TNF medication. If you’ve been following me through the Humira experience, you’ll know that the last couple of cycles have been abit rough to say the least. I’ve been panicking about my injections, worrying about not lasting on them, pushing myself too far too fast. Today, for the first time, in many many months, I feel good about […]

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Expectations

I know that is it unrealistic to have expectations when it comes to my Crohns, but I can’t help it sometimes. When things were bad, I just wanted to be better. I wanted my new medication to work and I wanted to get back to my normal life. And in a way, I am back, and I am as normal as I’ll ever be again. But starting Humira back in December was a scary affair. I was very aware that I could not spend the rest of my days on steroids –  and I really didn’t want to have to […]

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Humira #101

Now, I am not a completely stupid girl, I know that the medication I am on helps me; helps relieve the crohns symptoms, and let’s me go out in to the world and kick ass every day. I know from personal experience that everything else has failed – in one way or another – and this is my option at the moment. And what is a couple hundred £££ worth of injection if not brilliant for giving me back my life? So what, I have to actually stick a needle in my thigh bi- weekly? So what, if it takes two […]

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Day 13

So, today is the final day of the current Humira cycle. Yes, it ist just gone midnight on a Wednesday, but I for some reason am wide awake. This cycle has felt completely different. I’ve had so many days of feeling so damn good, it is slightly scary. I’m used to my body starting to flag on Day 9 and start seriously running on fumes by Day 12. This time around? Nothing like that. I don’t know if it’s because I’ve been very open and honest about the fact that I have very bad days and very good days – […]

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6 Months..

Today is the 7th of March. A miserable day of rain and wind coupled with some unseasonal blazing sunshine. I am happy. Today I have reached a milestone. I have been living with Crohns Disease for 6 months. And, boy has it been a confusing, frustrating, wonderful time. I know that I will have this disease for the rest of my life, and I’ve sort of made my peace with that, for the most part. I know that at some point, things will get worse; so much worse and I will need surgery, but in these very present, very real […]

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It’s *that* time again!

Tomorrow is my Humira injection. All of this week has been building towards this date. Yet again. The further I get ‘into’ this ‘disease’, the more time I spend on this medication, the better I become at listening to my body; the more I know how much things follow a pattern. Today was particularly hard. It is Day 13 of the cycle, possibly the worst day of all my ‘bad days’ on adalimumab. I can usually go without any pain for 9 days on my injections. As soon as we hit the fatal ‘second Saturday’ I feel the energy begin to fade […]

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Twelve Days

So, twelve days ago – January 19th to be precise – I gave myself my second home injection of Humira. The first one since finding out I was in a sort of ‘remission’. I air quote this because the term and understanding of ‘remission’ is subjective and very unclear. It’s variety makes it difficult to form consensus, but I digress. Every day since then I have woken without any pain, without a fever, without much tiredness and without the fear of a set back. Today, no such luck. Belly pain. Frequent visits to the bathroom. Unable to find anything appealing […]

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Today has been a rough day. Nothing major has happened, just lots of small things that have accumulated into something.. bigger. Had trouble taking my medication today – only my iron tablet – couldn’t swallow it and almost choked. Am home alone now until I go back to work and it was scary. My glasses are irritating my nose still, so back to my old pair. Found lots of hair in my brush today, and as pathetic as it sounds this part of my day made feel the worse, had a little weep. The physical parts of my disease have […]

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