March 2012

Prelude: I thought the best way to ‘track’ Crohns and related / subsequent issues, besides my medication diary, is to write a monthly post about how *this* month has been. Yes, I juggle alot of balls in the air. So, let’s begin..

I ended February with discovering I was in desperate need of counselling for my Crohns and related problems, be them medical, anxieties or just emotional and mental health. I actually ended up crying on the decorating floor at work, not understanding what was happening to me. I had to admit (with the help of many of my IBD twitter family) that I needed help. I saw a doctor at my local practice, who suggested filling in some terribly scary forms to begin the process of seeing a therapist at the practice. I waited two weeks to hear back from them, and after realising the location was impossible for me to get to, waited another 10 days for more local appointment – that is happening Monday April 2nd. For 9 long weeks. I’m scared, but I know it will help, maybe in ways I can’t see yet.

I attended my first ‘out of hospital, out of the woods’ GI clinic appointment at Good Hope on the 6th. Was put on iron tablets and given more reassurance that I was heading in the right direction for remission in a couple months, providing Humira keeps up with me. Laughable now. Taking Ferrous Sulphate tablets three times a day. Joys of joys.

Humira injections happened on the 1st, 15th and 29th of March. All three have had some panic attached to them. I get that pen onto my freshly alcohol wiped thigh and I chicken out a little. I worry and I wonder about things. What flashes before my eyes on the last two occasions has been my lack of immune system to fight against this cold that is dragging on. I know my medication will kick my Crohnie butt but it destroys my strength to get rid of an infection. It is a knife point. It sucks and I just can’t get used to it. I’ve also found that it is not lasting as long as it used to. The last couple days are tough to get through, and I find myself running really low on energy, almost on fumes. It frustrates me; should this be happening? Is this normal? Should it be changed?

Hormones! Ah, yes! They have been all over the shop this month. I am usually able to keep my emotions in check; at work, at home and with friends. Of late, this is has changed drastically. I find little things setting me off and I get frustrated over nothing. I curse the ground alot more these days. With this surge of hormones, I’ve found my hunger and weight going up and down – falling between 61-63 kg this month. Some days I’ve cursed my appitite, because my clothes don’t fit. This gets me down more than I’d care to openly admit.

Insomnia has been getting better and then worse. I find that Days 10-13 of my Humira cycle are the worst. When I desperately need my sleep, I find myself wide awake for hours on end. I’d be getting 4 hrs a night during this period. It usually resolved itself by the night of injecting. But stress keeps me awake too. That’s been awful this month too.

I’ve taken two sick days at work. Both Saturdays. Both times sent home from work. Not called in since since early February. It sucks to miss work, but its been because of my guts and throwing up. It usually lasts just that day – I’m fine that Friday and I’ve had Sunday shift – but it doesn’t make me feel any better about it. I don’t like my Crohns interfering with my work. Luckily, I’ve not been ill whilst out with friends. Phew!

What worries me this month is my Humira. It feels like it is failing. I’ve had quite a few side effects of the Anti TNF treatment. But I don’t know if it is is enough to warrant any further exploration. I’ve not had this many in quick succession before. I panicked a little this morning when they hit me at full force. I really don’t want to be rushed into hospital again. It was horrible enough the last time, but this would be worst – miss work, miss family, miss friends, miss holiday and all my plans. It would really screw everything up. But it needs to be ‘fixed’ before it gets to that. So, its first thing on my list to do on Monday morning – call my IBD nurse and discuss my options to my problems. It will be at least a blood test, I know that much for sure.

Counselling also worries me. It scares me abit more than I’d like to admit too. I’m worried I will find out things I don’t want to know, and won’t be able to unknown them. Yes, denial, that is where I am right now, not healthy, I know that too. I will go, and I will talk, I just will be very nervous.

So, April! IBD Awareness Month! HAWMC too! Holiday from work (much needed)! 24th birthday! New ink! Lots to look forward to! And I’m sure more challenges too..

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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Photos of myself can only say so much.. so this is me, explaining, well, myself. At the beginning of all this, I was just a slightly chubby girl, happy with work, family and friends. Everything was good until I got food poisoning from a dodgy meal out with a friend last August. Everything changed after that. If I really think about it; and now that I know more about Crohns, my symptoms were apparent months before. Mouth ulcers. Mild diarrhea. Abdominal cramps. Joint pain. But nothing conclusive, nor extreme enough to make seek medical attention. So when I presented with […]

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It’s all in the details..

So, a little more personal information about me: I graduated from university almost 2 years ago now and haven’t found, what I call a ‘proper job’ yet. I am employed – I work as a shop assistant in a cafe and bakery in town – but finding that ‘degree relevant’ job that would blossom into a full blown career still eludes me. Now, not that I am ungrateful for all the help and support I’ve received from my employer and co-workers whilst going through my diagnosis and treatments of Crohn’s, I have always been looking for a graduate opportunity to grab […]

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And on the Eve of all Eves

.. I am sat in festive pjs, under my delightful duvet. Things are good. Actually, things are really good. Things are working and doing their jobs. And for the first time in months and months, I feel settled and myself once more. It is the most surreal feeling; of being so ill and then gradually getting well again. It feels like moments ago, but its been 3 months since my diagnosis and much has happened in those 90 days. Two more hospital spells, two more drug therapies and much of my body and hair lost. My last stay in hospital […]

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Crohn’s disease is an Inflammatory Bowel Disease (IBD) and can be confused with Colitis. In my large bowel, there are cysts of inflammation which cause my bowel lining to become irritated by certain foods. Because it has been untreated for the whole month I’ve been sick, my inflammation is very high. I take a number of drugs to help ‘put out the fire’. Steroids to remove the pain, Pentasa to keep the inflammation to a minimum and calcium tablets to help keep my bones strong (in reaction to the steroids I have to take). Each morning I take 40mg of […]

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August 2011

For me, a petite brunette from the Midlands, 2011 hasn’t exactly been the year of greatness it began with. Many things have gone ‘wrong’, we lost some family members, met new ones, spend more time than sense in hospital wards, and it seemed by the summer, it was far from over. It was my turn to face the facts of my life. I came down with food poisoning in the middle of August, shortly after my brother’s 21st birthday. I spend a week off work, hardly eating and drinking. My parents flew away on holiday so only me and brother […]

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