This is a hard post to share as it is dark, down and raw! I wrote it 4 years ago when my health took the big turn for the worse! what I call the beginning of the..... unfinished end!
I feel its important to share the good the bad and the dam right ugly, so here goes!
I have tried not to edit it as each time I do I tone it down and that's not how I felt back then. thanks for reading. x
'...Saturday 12th July diary
You know what! I have been through so much over the last few months/years I decided it's time to write it down!
So after 2 weeks of being REALLY ill! Pain beyond belief and anxiety crippling! I am in constant pain but everyone wants a smile and positive news so I'll pass it off but it hurts, like hell!
Every breath, every mouthful, and every poo! Pain beyond contractions, with no release, no let up and no reward!
So I take the hospitalization and the disgrace of being incontinent and the 22+ Meds a day plus suppositories, because there no other way!
I leave my home and kids for a week because if I don't I actually fear I may die... The pain is so much... I smile and laugh and flirt with life and always hurt. I won't say a word as I moan all the time about 'my Crohns' like mad. OK, maybe they really don't need to know... There is no good from it! It's not a lucky diet! Sometimes I actually wish I had cancer so I could get treatment or just die then I'd be a silent victim, not silent and in pain, I'd be in chemo and everyone wouldn't share their germs, or vicious snide remarks or panic my hairs falling out., I know already! don't scream about it, I'm trying not to totally freak out!
So I pop the pills, spend every precious second with my boys, try not to lose it from the meds that strip my ability to be reasonable... Appreciate it's them I live for and them I owe to be 'normal' whilst trying to maintain my self-respect. The one who always organises and does everything to ensure all goes just so...
My mum is amazing but has found Crohns for the first time in the 11 yrs I've had it, everyone is stepping up, prob because I'm single now and have no partner to do so, but it's refreshing to see the respect people have for me when they realise and they actually know...
People are worried but few have actually taken the 2 mins required to learns about the drugs. So they can keep me safe, no one thinks they need to, it's not cancer,... I can't die... Can I!
I can't cut it out or blast it with chemo either so I have it for life... An OAP with a shit problem! Woohoo... Hope I have my colon out then as the incontinence would be disgraceful and not me!!.
Anyway, I live to tell... Lucky apparently so I start the next chapter ..... Adult, single with kids with the shits! What chance do I have if a normal life, sex life or even the chance to date without it causing so much excitement I shit myself!
I live with the guilt my sons actually ask me how many times a day I poo as they know that's how I can gauge my life right now. With the promise it's not cancer, cause that's worse right, ow no I am also at huge risk of that now as well, and the boys know that just to add to their worries! They are 7 and 10 and amazing but need their mum to get out and live.
Good night
Saturday 12th July 11.29pm
Monday 14th July 2014
So I've been 'post' Infliximab now for 4 days and the initial results were AMAZING.... went Friday. 10-15 BM (bowel movements) a day to 1-2 if lucky... Really was starting to see the improvement, my legs hurt, every step is like a cramp and tight calf... My torso is so sore I waddle almost like I've pooed myself... But thankfully I haven't! Lol...
I am also sleepy more... But in day 4, after emailing my consultant in excitement about the miraculous improvement, I've jinxed it... Been in pain all day! I went to infant sports day first... Was ok but by the time I left, I could hardly walk for pain... Seem to have trapped wind around my ulcers and the cramps were crippling! Went home and sat on the loo with little relief so I lay in my bed... Well woke up with a text from my wonderful friend, Kay, asking if I was meeting her in 20 mins for the juniors sports day... Oppssss. Anyway Made it there and was fantastic!
I have had cramps all day... Like I need to blow off for a year! And no BM so I had soup for dinner to try to rest my colon but still had munchies... Damn steroids so had a single choc finger and crisps... Hoping I don't regret it tomorrow! And just 2 glasses of red!
Off to see my school tomorrow. Missing them very much! But hoping my tummy resettles and it's just teething issues of my bowel getting re-established!
Here's hoping tomorrow is better!
Just sorted my breakfast of 22 pills and a sachet, good night!
17th July 2014
So today I meet my stepmom for the first time! No pressure... The INFLIXIMAB has fully kicked in and so have the Steriods... I look like a puffy blowfish with mood swings like no other... I'm also on a blind date at lunch! My first and I'm shitting myself but happy as not literally ;) bad joke I know, but my humor is back and I'm starting to feel alive again for the first time In I don't know how long! The pain is easing and it's so good to be able to laugh and move and make plans again! Long may it last... Especially as I'm off on holiday shortly and my birthdays coming up and boy do I need a good night out! The boys are being fantastic! They are looking after me although they seem so relieved I'm home I feel more guilty than I already did! Now I'm home everyone expects me to be firing on all but I'm not... On the plus, my Steriods are reducing! Down to 25mg, 5 mg more and the craziness may ease! Almost there! I hope...
The pills are reducing just 21 for breakie! YIPEE go me!
18th July 2014
Meeting day with my boss! Not sure how I feel discussing my 'stuff' with an almost stranger but hayho... Before that, I have the heartbreaking task of Miss Kings memorial... Really hoping today puts the boys at ease that she was really ill and that not everyone I'll dies, they are so sensitive and she was so wonderful! Sad day. Tummy doing summersaults but behaving! Something not feeling quite right though but can't put my finger on it! I ache! Probably just the STEROID withdrawal ... Like an addict but I'm coming off faster than most do but I need to get my sanity back and stop feeling so sensitive and snappy and crap! They work I know but the side effects suck!
Busy day tomorrow... Won't sleep thanks Mr prednisolone your making me look crap as ever!
19th July 2014
Hardly slept a bloody wink. Couldn't stop thinking of who would have my boys should the worse happen and this crap sends me under! Damn Memorial Day! Anyway, busy day ahead and tummy doing good, off to lunch on a date so hope my nerves behave and then out for a good old girlie booze. Ok, so I'm nervous as hell but for all the wrong reasons! Will I be ok! Will the stress and pressure of being out be too much... Will my gut kill off my fun or will the drugs wipe me out... Argh just to be normal!.... I'll be ok... I'll be near the loo ;) just in case... God, I'm sad! It's really hot today as well and I still don't feel quite right, putting that down to the infusion, I so hope it's working still a part of me not convinced it will last.. Never does :(
24th July 2014
Hospital day check up! So much has changed. Gone from 25-2-3 loo trips a day... From being in a STEROID coma mood swing state to feeling human for the first time in forever... But still, have a feeling I don't feel as great as I did in my first infliximab infusion years ago... Still I see what Parnell thinks.
Seen Parnell and he's delighted with the response, he is a bit worried it may not last as I grew resistant to meds before but after he explained how my insides were shredded with ulcers a few weeks ago... My complete colon was caked in Ulcers apparently... Too far for the flexible sigmoid to see and beyond the worse, he's ever seen in me... It's an improvement. Scared the pants out of me though, didn't expect that, I always assume I exaggerate and blow up in my mind how bad it is from the pain but to hear a consultant say how shocked he was that I was still mobile and out and about, knocks you sideways. We discussed the infusions and he's going to agree to carry them in and monitor me closely in clinic every 8 weeks. Scared me to death as he said if it fails he's not sure if surgery wouldn't be better for me. Never said that before to me... Omg better bloody work!
Even my Jaw hurts... No idea what it is but can't bite or open it far?.
25th July 2014
Off camping today never thought I'd make it to be honest! Fantastic weather and so glad I'm going with Donna and Dave, they know me well enough I don't have to hide and they understand I may not cope so well this time... Got a really bad pain in my jaw both sides today and my arm... Slightly shitting myself?.. what the hell'.
Back to now! What actually followed was drug induced Lupus! I had developed dangerously high antibodies to Infliximab and further exposure could be lethal!'
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