Hi Mike ive just looked at the Colonoscopy Report again and under Diagnosis this is what it reads - Crohns Disease (All of the visulised Colon). So i was wondering if that means i have the crohns in my colon? and only my colon otherwise it would have said in other places too? I will ask the specialist tomorrow though.. Thanks Dawn
Hi, sorry for the slow reply - transfusion turned out to be an overnight job, still at least I know where I'm going on Monday. It sounds from the description like you've got Crohn's in your colon - it would be interesting to hear what the consultant said. If this is the case, I'm not really sure what the implications are, I'll see if I can dig out a link to some appropriate info and post it here. At the risk of putting a negative slant on things, it is possible you may have Crohn's elsewhere as well, have you had tests other than the colonoscopy and blood tests - e.g. barium meal or gastroscopy? I hope you got on OK, Mike.
Hi Mike & Katherine.. Sorry to hear your transfusion didnt go as expected, hope your feeling ok now.. I didnt have great news yesterday, feeling very upset today, my consultant listened to all the symptoms i described, she asked to examine me, afterwards she ssaid she needed to do a sigamoid oscopy' i thought this would be me coming back to the endoscopy suite and having the procedure done at a later date, but no she said she had to do it there and then, ouch!!! Afterwards she told me that unfortunatly it has spread from my colon and was now all over the part which comes from my colon down to the anus and she thinks its highly likely its elsewhere to, she said she felt sorry for me that in 2 months it had gotten progresivly worse, and asked how i gotten through these few weeks, i told her i did tell the GI nurses that i wasnt feeling well at all but they kept saying because my inflammatory markers werent raised they didnt think i was having a flare' she said some people are symptomatic rather than raised levels, so therefore i am symptomatic' i felt like saying 'well can u bloody tell the nurses that then please' Anyway i now have to have an MRI to see where else it is, shes changed my meds i have to up the pentasa to 2g twice daily, added in Budeneside, azaiathoprine (if the bloods she took last nite come back ok) and pentasa suppositories.. She did warn me together, all them may not make me feel very well but it will stop my symptoms quickly, shes advised me to say on reduced hours at work for now and im going back in january to see her.. Feel so upset, i spent all this year waiting for the endo op so i could get my life back and now i have this and am struggling so much with it, i fear i will lose my friends as i struggle to want to go out now let alone taking all that and how its gonna make me feel, feeling very much like 'why me' and 'i hate my life' right now maybe i'll feel better tomorow, i hope so, i know there are people who are much more worse off than me so i need to turn it around and think im lucky, but today im struggling x
"It's gonna be ok" If I'm honest is what I would love to hear as I am on my own, it seems to mean more coming from someone else, it does not have the same impact when I say it to myself or I've just stopped believing it..
If you can get through the endo you can get through this! Yes it is a bit of a mind field at the moment and probably hard to take on board, all that you have been told but you will get through this.... and so what if there are others worse off you are hurting and that does not make you any less than them, this condition/disease is nothing to be sniffed at.... if you pardon the pun! It sounds like you have a very good GI and they will be able to give you the right treatment and advice to get this under control...
Feel free to private message me or just vent off on here it's good medicine.....
On a different note I see you live in Dorset my folks live in Wareham, anywhere near you?
Hi Katherine.. Thanks for your words, it helps lots to know im not the only one who feels down & alone.. I had such a terrible night last night, i took the steriods at half 10 (am) by 7pm last night i felt like i was extremly high, i felt wide eyed, shakey with aldrenalin, like i could a ran a marathon, or cleaned the whole house in half four' when it came to sleep, well' ive had about 4 hours' i was pacing the house at 2am! i feel shattered, ive got work aswell today its the bloody steriods, arghhh i had this but even worse on prednisolone, hence why im on budeseniode now, thinking it wont happen, it has!! Dread this evening at work, the locum pharmacist will think im a zombie on drugs! Still at least the pharmacy might get a good clean, or i can serve a 100 customers in one go lol! Yes Wareham is quite close to me, about half hour drive away, its a lovely place.. Small world hey Dawn xx
Yeah steroids are fun NOT.... I don't get on with them but when things get really bad I've got no choice but to take them! The side effects should settle down but I would have a chat with your boss! When I'm on steroids I become Jeckel n Hyde, roller coaster of emotions and so aggressive, suffering with Depression does not help! Did say to my GI when they first put me on them that if they worked and I got better I could always get a job in a circus as the bearded lady.....
Keep cracking the jokes it helps with the sanity....
I'm going down to see my folks in the New Year, love where they live, it is picture post card.....
LOL!! Laughter is the best policy Yes Wareham is very pretty, and the surrounding areas, i feel very lucky to live where i live... Well im still feeling quite 'high' at nite, i told my boss and he suggested i tell them but its probably a case of having to put up with it as i need them :/ Am speaking with them 2mora so will tell them.. Looks like i may be joining ya at that circus ;p lol x
We grow boobs, so while you're at the circus I'll be doing panto - still, at least it's the right time of year.
Then there was the time when I had a tantrum in the office and went home in a huff because someone had left papers all over my desk. A bit embarassing, but fortunately folks understood and saw the funny side. I've never lived that one down though.
But the worse time was when I decided to paint all the kitchen furniture in the middle of the night, it seemed like a really good idea at the time, but Mrs. H was NOT pleased.
Good luck to you both, thanks for keeping me sane over the last few weeks, the countdown has finally ended, surgery tomorrow, so will be offline for a bit.
Hi mike..That did make me chuckle!! hahaha, thanks for making me laugh Wishing you the best of luck for tommorow.. Hope you have a speedy recovery & just in time to enjoy christmas hey.. Best Wishes Dawn
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maybe i'll feel better tomorow, i hope so, i know there are people who are much more worse off than me so i need to turn it around and think im lucky, but today im struggling x
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