My Story (Part 3).

Phew, I felt part 2 was probably really boring as I couldn’t remember what happened on what day and I essentially rambled a bit … a lot a bit. I think when loads of things happen, it’s hard to get down exactly what happened so I probably missed out a lot but you get the general idea that I basically didn’t sleep and I ended up hating my doctor for laughing at me. Oh and something I forgot to mention, the nurses never got my name right, I was Chelsie, Kelis, Kelly, Chels, Keely, Kayleigh, Karen, never was I called Kelsie, even though my name was in big letters, on a white board, behind my head.

So first night home and I slept like it was going out of fashion. This is when you’re on the mend but now you got to deal with this incurable disease mentally. The very next day I took a trip into Chippenham with my mum as I was desperate to get a change of scenery, to enjoy being out of the hospital and to enjoy that I’m not pooping a million times a day and my blood has disappeared. In my bowel movements … not in my body. I’d be dead if my blood disappeared from my body. Ahem, anyway I remember getting ready to go out, I put on makeup for the first time in months (when I was sick before my hospital visit, I didn’t bother with my appearance because I was so run down and miserable I didn’t care what I looked like and this was coming from someone who is generally well groomed … sometimes). I felt like me again when I saw my bony face with makeup on, it almost hid the fact that I was so skeletal, but it was a beautiful day and I popped on my favourite short, red dress. I took one look in the mirror and fought back the tears. When I was sick I wore baggy clothes to hide how skinny I was, so I never really paid much attention to it until I was met face to face with my skeletal body in my dress. My collar bone and my ribs on my chest were sticking out, I have small boobs anyway but they were flat as a pancake now, my stick legs looked ridiculous in my black tights, I was glad the dress hid my flat ass but that was about it. I looked a disaster. My mum kept throwing compliments to me telling me I looked so much better, I was starting to look healthy already but I just couldn’t get passed how skinny I was. Looking back, I have to laugh at how I focused on my weight and not the fact I had a serious disease, maybe it was easier for me to focus on that, almost like burying your head in the sand.

Anyway, I went out into the town, beautiful sunshine, feeling semi-presentable in my makeup, but very much self-conscious about my figure. My mum went into the bank and I took a dizzy turn, who was I kidding? I was so freakin’ silly thinking I could manage an afternoon in town on my feet all day after lying in a hospital bed for 10 days literally the day before hand. I sat on a bench outside and got chatted up by a handsome fella … self esteem back up to normal levels. Thanks handsome fella. But for my first day out and about, besides feeling a little faint, I’d say it was a success.

For the next few months I slowly came off the rest of my steroids, still on my salofalk granules, focused on what I ate, listened to my body when something didn’t agree with it and kept a food and BM diary. I was constantly terrified I’d have a flare up, I almost kept waiting for it to happen. To this day I still think this way, almost a year later. I’m hoping that will change but I doubt that. It’s the pessimist inside of me.

I had 3 incidents where I thought I was basically about to die. One time I think roughly in June or July, I had the worst stomach pain I had ever experienced in my life. I popped a couple of paracetamols and within 20mins there was a weird tugging sensation in my stomach and the pain instantly went away, I then proceeded to burp non-stop for the rest of the day. Fast forward about 4 months on and I had the same terrible pain two days in a row but this time it seemed worse. I couldn’t even stand up, it took my breath away, I was sweating, no matter what position I put myself into I couldn’t lighten the pain even by a fraction, I could feel the tears streaming down my face thinking ‘this is it, this is what sends me back into hospital and they’ll cut me open, as the drugs won’t be able to control it this time.’ Come evening time the pain subsided and I slept like a log (pain can knock you out as it’s a tiring thing to go through). The next day, I looked at my food diary, I looked back to when I first had the pain, then looked at what I had the past couple of days. Who was the culprit? BROCCOLI!!! I had made broccoli soup on all those days when I had pain, there was no other food I had which was the same bar the damn broccoli. I’ve never touched the stuff again and the pain as never returned. I didn’t have diarrhoea or blood, nor did I go to the toilet a lot, it was simply the pain. Thank god for my food diary for solving that problem. The other thing I avoid is anything overly sugary as it makes my intestines sound like I have a bunch of whales singing to each other, it literally only happens with sugary stuff so that’s been cut out.

One thing I did notice, about a week or so after taking my salofalk granules is my hair started falling out, and I mean a LOT!! Just as I was feeling better about my weight, I was now having a breakdown over my hair falling out in clumps, I assumed it was the granules as it’s listed as one of the rare side effects but when I went to see my specialist for an outpatient appointment he basically said out of all his 500 patients on salofalk, I’d be the first one to say it was the drugs causing my hair to fall, he basically dismissed it which upset me a little because for most people their hair is something precious and to see it fall out to the point you have bald patches is really distressing. I took matters into my own hands and looked into what I should take. I started a B complex and biotin, after a few more months of hair loss, it stopped! My hair is back to being its normal self, if not a little healthier, so that’s another thing I conquered!

Since being out of the hospital I have had a few trips to the hospital as an outpatient and they’ve all been pretty positive. My specialist is happy at where I’m at (I actually have another review coming up on the 6th of April), I’ve had more blood taken to see how my iron levels and the like are, I’ve had a CT scan where they injected something into me that made me feel like I peed myself (I didn’t, it was just the sensation but the lovely nurses warned me of that), the specialist told me that the CT scan showed that all was well and the problem ulcer was at the healing stage and it was basically clearing up. So far so good, it doesn’t stop me from having crippling anxiety when I go to my appointments but eh, that’s just something I need to get used to. I have been back to my GP once for an ear infection and I was seen by none other Dr. B, I fucking wanted to head butt her there and then but kept my cool, she was even like ‘ah yes, how are you now? I see in your notes you had quite a time at the hospital, at least we know what it is now.’ Bish I knew what it was before you did but you were more concerned about sending me away. Ugh, let it go Kelsie, let it go.

So far I’m just listening to my body, I take my salofalk in the morning, my iron pills, Vitamin B Complex, Vitamin C + Zinc and Vitamin B6 in the afternoon and in the evening I take Acidophilus and Biotin in the evening. I try to eat as healthy as possible, I work out regularly and I try my best to be ‘up-beat’ about this disease. I hope psychologically it won’t keep on affecting me. I can’t let it rule my life. I don’t know when I’m going to have a flare up, I keep my fingers cross that I remain in good health and I hope that one day a cure will be found. That’s my story, up until this point, with IBD. I don’t know when I’ll find out what strain I have of it, the specialist said that he thought it was crohn’s looking at the flexiscope images but he then said that because I was so badly inflamed, it would have been colitis after all, but all I know is for now I’m in the 15% of IBD-ers who don’t know what they have. If I remain in good health then I don’t care what I have just now. I hope you all have good health and try to look for the light when you’re in dark times. If any of you want to talk about it then I’m all ears, not literally, that would be weird.

TTFN

Kelsie.

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