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 persistent V&D and erythema nodosum, they thought cellulitis. But 3 days after being discharged, I was back again; more pain, keeping less food down and hardly drinking: dehydration. After three days of tests (the usual Crohn’s ones; flexiscope, CT scan and ultrasounds) they concluded I had Crohn’s. Fine, it’s a manageable disease and its controllable with medication. LOTS of medication. I was first put on Pentasa and Prednisone – so already a daily intake of 12 tablets – then they added calcium into the mix – taking it up to 14. By mid-October, my consultant agreed Pentasa wasn’t controlling it as well as it could be; so Azathioprine was my next option. I should state that by this time I was 2 weeks out of hospital – after spending 10 days on the Gastro ward – and things were still same as they had been on discharge (We later found out that my bout of C-diff hadn’t left my body).
I tolerated the Aza well for a couple days, but I grew weaker and weaker; barely being able to walk up and down the stairs without getting out of breathe. 15 days after starting that treatment, I took a bad turn and ended up being brought into A&E. They did more tests. I spend the first 36hrs being completely out of it – my C-diff was really rearing its ugly head and the antibiotics and anti-nausea medication really made me high – resulting in another 2 weeks in the Gastro ward, isolated and very alone. I still refused to let anyone see me whilst I was sick. I was the worst that time in hospital – along with the flare up, my Aza wasn’t working like it should, they found more Crohn’s in my large bowl and I got Chicken Pox. Delightful. At this point I was weaned off the IV bags and IV steroids; for them to be replaced by 2 sets of antibiotics three times a day, a set of anti viral five times a day, my Pred usual dose of 40mgs, potassium three times a day and calcium twice a day. So there is no wonder to why my hair loss has continued, my weight was a big issue and control of my C-diff, Crohn’s and Pox was crucial.
I cut all my hair off a week after my discharge. I was forced to buy new clothes – my usual size 14 was replaced with size 8. I was still having trouble walking and getting up stairs – being in isolation meant when I was cannula free I was unable to walk around the ward. My strength took weeks to come back to a manageable level.
I was just 48kg on discharge, I am now a healthy 56kg after 2 months. I was set on Humira in December and my medications began to reduce. Weaned off Pred from 50mg. Finished a 6 week course of iron tablets. Now, 9 weeks later, I am only taking one daily calcium tablet and my Humira injection every 2 weeks. My blood work indicates that Adalimumab is working well. My CRP came down from 79 to 2 in just three rounds of Humira. I am myself once more.
Here I am one week before my ‘symptoms’ appeared:
And here, 3 weeks after discharge (early December):
Look at those little arms! And the tiny waist! (Now, I know, some women might be proud of those things, but I personally am not. I have never tried to be ‘skinny’ or ‘thin’ but this was scary. I was very underweight for my height. And seeing myself like that was something I avoided constantly. I cried the first night I came home; the actual physical pain I was in was mostly due to my lack of muscle and fat on my bones, but the emotional stuff soon caught up)
I have to say now, I am much happier. I’ve made peace with my body – accepted that I will never be ’heavy’ again(pre-Crohns of 10 ish stones) and that from time to time I might loose alot of weight quickly because of my bowels and malnutrition. But I will always have a little of my Crohn’s ‘baby belly’ and I’m fine with that. It changes daily but it won’t ever fade completely. Where as, I know my Pred cheeks will go away over times. I was starting to look ‘hamster’ like.
I’ve had to accept alot of things these past couple of months. It varies from day to day, but there is always something new to find out, learn, experience, explain. So its a battle. A war, if you will. But its my life and I choose to fight. It’s not worth getting down about it (although I’m sure some days I will regret that phrase, full of contempt of my ‘stupid, evil, disease ridden body’, but hopefully not for long).
Here I am, a week ago:
Much better! 😉