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.

 

2013 in review

This blog turned one year old on the final day of 2013. Those sort of moments tend to allow one to reflected on the past twelve months. When I consider how long and short ago January 2013 was, so much has happened! Here are my highlights. The big achievement for me was not getting admitted into hospital. When I was taken off my Humira injections and left with medication options that didn’t work for me, I seriously wondered over the summer how long I could last without admission. It had been a rough spring for me, I had to cut […]

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Rough / Cough

This has been a rough one for me, more so than before. I can’t quite remember feeling this awful before, without the bowels going crazy and my body flaring. This, in all sense and purpose, is a cold. But given my immunosuppressed body, it has hit extremely hard; with each day providing me with a new and strong symptom, so much that I finished work on Friday afternoon – after a five hour shift that mostly consisted of me sneezing, coughing and generally loosing all sense of body strength and temperature control – and could not see any light at […]

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Half way through or half way there?

So, this week I’m half way through my four weeks of this second infusion. This also means, I’m more than half way to my next infusion too. In fact, its 9 days away and honestly. I’m excited. The difference between now and before Inflixmab is huge. And add to this how different I feel between first and second infusion, and now, awaiting the third, it’s quite amazing how this is really helping. Now, as you already know, I am not biological naive, meaning I have received biological treatment for my Crohn’s in the past. That was between December 2011- and […]

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Infliximab #2

Two weeks came around fast. I could hardly believe it was my bloods check up last Friday, let alone how quickly the weekend came and gone, then it was Tuesday. Time for an all day stint at the hospital, sitting around waiting for time to pass. This time, everything was delayed. I was on a later appointment schedule, so that I could make my already scheduled GI clinic appointment that afternoon, and from the start, it was running late. There was already three other patients on the pumps, so I had to wait for the first to finish, which was […]

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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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Pred, Pred and MORE Pred.

As I’m sure everyone else who takes steroids or has taken them, the gradual drops in the weekly, bi weekly or monthly doses is met with jubilation. I found myself getting rather exciting to moving from 10mgs to 5mg next week and finally stopping them on my birthday, two weeks away. Sadly, my GI is not sharing my jubilation. I have to continue Prednisolone for at least another 6 weeks. This “interim” “medication free” lifestyle is sucking. Above is my new daily regime. Moving from 10mg to 9mg means FOUR more tablets every morning. Delightful! More hamster cheeks, more chubby legs and more […]

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The smallest room in the house

You can’t hide from the fact that as IBD sufferers we spend a considerable amount of time in the bathroom. We are taught to monitor and examine our bodily functions in an attempt to grasp a hold on how our condition is going. Bowel movements (BMs) are a good indication of what is going on inside; from the frequency of visits to the types of visits we are having an on regular occurrence. Increased BMs can mean many things: inflammation, infection, bad diet, flare up triggers; where as a decrease in BMs can mean strictures and blockages. For myself, I’ve […]

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Oh my sore arse. Thanks Pred.

I’m now deep into the second week of Prednisolone. It is a monster. Pred is an IBD basic. Corticosteroids are used to treat any and all inflammation of the digestive tract. They are usually oral tablets, as shown above, and are used a long term course of treatment in early stages of IBD diagnosis and in the start of and / or mist of a flare up. They override the natural system of cortical hormones your body creates in your adrenal gland. The treatment course is set out my GI and / or IBD nurse and patient. Typically, they last […]

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Humira Review

Tuesday was my medication review with my GI at Good Hope. I’ve been asking about my review for a good 3 months to date, and finally, I’ve been given an answer. After all the hoop jumping, all the tests and bloods and scans, finally, FINALLY, I’m off the Humira. I had a speech all planned and all the evidence I’ve accumulated in the last couple weeks, only for my doctor to suggest, after having looked and explained my blood results and historiography of my colonoscopy, we stop my medication. I hadn’t expected this. A little grin appeared on my face […]

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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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“Remission” of Crohns Disease – Myth?

When they tell you that you have an incurable condition, the furthest thing from your mind is the term “remission”. I associated remission with any condition that was treatable by means of a cure. However, you can find a path to remission with Crohn’s Disease. Anti TNF medications – Remicade and Humira – have the sole purpose of “achieving and maintaining remission”. If they claim that as their purpose in the medical field, why is remission such a hard thing to achieve? It mostly comes down to the fact that every case of Crohn’s disease is different. Not every patient’s […]

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Dietary Changes

The New Year has meant a lot of changes for me. It means I’ve come out of my first full year as a crohnie. And the year ahead means lots of hopefully good changes for me and my health. Last month I had my colonoscopy for my up coming Humira review. Despite everything came out clear and clean, the poylps they found suggested I could do much better with my diet in controlling my symptoms. I was given – suprisingly and confusingly – dietary changes for IBS symptoms. I investigated: the IBS symtptoms that are common are also symtpomatic of […]

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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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2012, a recap

We’re here, the final day of 2012, and I am sat realising that this past year has flown by yet again. That feeling doesn’t surprise me, but the lack of fear I have about the year coming up does. I started 2012 extremely unprepared. I had just finished a couple of weeks stint in the hospital, had just started Humira – yes, its been a whole 12 months of needles in my thigh and monthly blood tests – and was extremly cautious but keen to start 2012 without any further admissions. I kept my promise, I’ve had no mishaps that […]

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NYE – New YOU Entirely

In true Louise fashion, the dawn of the new year had brought up all the emotions regarding my review in three weeks with my gastroenterologist. I spent last winter in and out of the hospital because without fail, my guts decide it wouldn’t be too horrible for me to go without some sort of hospital visit; be it a day in for a procedure or a check up, bloods or a short stay. This year, I’ve remained healthy, and for the most part that is due to my care into maintaining my remission. It is the combination of taking care […]

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Result!

…and moving forward, slowly. I last wrote on the afternoon of my bowel prep, on Thursday. I got through the first hour of Moviprep without too much of a problem, it didn’t taste as bad as I thought it might do – my experiences of Klean Prep for my MRI didn’t really set me yup well for this – but after a hour, I was done with my first litre. I got some juice and got settled down for the runs to the bathroom. After about a half hour, I finally went – some 90 minutes after starting prep, but […]

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How far do I go, with hanging on? Until I’m on the floor, unconscious, perfed bowel and all? Or do I advocate the hell out of my GI clinic appointment this afternoon? This is the old age question I’ve been asking myself for the last couple months. Do I stop taking the Humira? I’m in the process of doing what is necessary to examine what is really going on inside. If it is nothing, I’d like to try a med free life for a while. But I doubt that will be the outcome. The symptoms I’m experiencing aren’t exactly cause for […]

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Exploring Bernie ;)

For many Cronhies, having a colonoscopy is the big prodesure. It is used to diagnosis, explore and treat Crohn’s Disease. Friday is my first colonoscopy. How? You might ask. How did you get this far without a colonoscopy? Well, my Crohn’s was discovered by a Flexi Sigmodoscopy. I underwent two of them whilst being in a massive flare up and when my medications were failing. I remember the pain of someone exploring my colon with mostly shudder and dismay. I’ve avoided a full exploration of my large bowel for just under a year. As Humira started to work and I became healthier and […]

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Le sigh.

Sadly, I’ve been going through a rough time this past week or so. I’ve been experiencing terrible abdominal pain and some awful bathroom visits. All the while, going to work, doing my Brownies leadership and persurviering with my snowboarding. You’ll be glad, I managed it all whilst being unwell. But here I am sat, attempting to complete NHBPM – albeit a week behind – and I’m finding it hard to concertrate. I spent last night yelling and screaming and crying at my boyfriend as we faught. Why? Because I am in constant low levelling pain and uncomfortable as fuck. No […]

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