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Round and round we go!!!

Hey Guys,

Just an update really....

When I got out of hospital last month I was in a right state so I did snot and tears on my GP and my GI and came away on 30 mg steroids and with appts for an inflammation scan and ANOTHER colonoscopy. :(

Started the roids, and then a week or so later had the tests. I felt like a guilty interloper when I went in for them becuase the steroids had really done their thing, and aside from being TOTALLY manic, I was feeling really good! :ylol2:

The downside though was that the roids were too good. I basically stopped pooping completely, and then every three days a monster would try and emerge from my butt. Seriously I have never seen anything so big, every three days a whole new eye-watering birth experience. I am not exagerating, I swear one of the poops was bigger than my youngest son when he was born, and in the process I have popped out a prolapse I had after my pregnancies....classy or what - now I have what resembles a testicle as well as an unreliable bottom.

(NO offence to testicle owners on the forum, it's just that I don't think it goes well with the rest of my female body). :eek2:

The taper to 25mg made me feel more human, almost normal, although I have scared my husband with the housework. I have never been houseproud in my life, and now my underwear drawer is co-ordinated by size, colour, style.... even the socks which used to reside in a huge bucket for the family to fight over a rare matching pair are now neatly organised and apportioned to correct owners.... it's really not me, you could eat your dinner off my bathroom floor.... I even took my neighbour's rubbish out the other day... (he is not old, sick or needy, just a pig...normally it could sit there forever and not give me a moment of concern).

My mum has a huge house - five bathrooms - I cleaned them all. They didn't need it, she is very houseproud, I just had the urge to re-organise the guest towels... I am slowly going mad!

Down to 20mg and my bum was downright unreliable. We went for a walk on the beach on New Years Day. I thought I was going to let out a sneaky fart (who would know - it was a blustery windy day)... I was all complacent because of the roids.

But it wasn't a normal healthy person gusto fart... it was a classic Crohn's splatter fart.... fortunately I hadn't got so complacent that I had stopped carrying my emergency supplies in my handbag... I have an ingenious little purse which is like a tardis. Unfortunately I hadn't banked on some prat deciding that New Years Day (when EVERYONE thinks it's cool to go for a walk on the beach), was a suitable day to leave the public toilets locked. I did finally find some, but had to do the Crohn's waddle of shame for about two miles to get to them. :poo:

What is worse is that my lovely well-meaning step father immediately complained to the town council (of a very small town), that his daughter with Crohn's disease had been unable to avail herself of the public facilities after a public accident...thanks Dad...I was hoping only a few hundred people had guessed why I was walking like someone who had pooped their pants....

So, then down to 15mg and I was confined to bed, lurching to the ensuite at mum's house (with fabulously arranged towels).

Anyway, I do ramble sometimes.... I spoke to my GP this morning and he signed me off work for another month, and promised to chase up my commode - my life is SO CLASSY these days.... I don't have an ensuite.... I have a commode....and then he says, "oh I got your results for the colonoscopy and biopsies....ALL CLEAR".

"What???? So why am I so sick?" I say. "Well probably because you were on 30mg of steroids when they did the tests"... doh!

So, I was REALLY worried. Was due to see the GI this afternoon, and basically worked myself into a state (possibly assisted by steroid mania), that he would say, well clearly your results were fine, there is nothing wrong with you, so stop your meds and get lost....

So I wrote everything down, including the classy testicle situation, and psyched myself up. It was basically all of the above and a list of demands. :voodoo:

I want 25mg of Pred(!) Even if it makes me bonkers.... and I want to go back on Mercaptopurine (even though it made me bald). I was going to be ASSERTIVE. I really was.... actually I probably wasn't so I took my mum. Yes I'm 36 and I take my mum to hold my hand at hospital appointments.

So I march in, emboldened by the presence of the matriarch (she can be rather scary - she's a super clever Clinical Psychologist who scares the pants off my husband). I'm ready for a fight... well to whimper and hopefully she will rise up behind me and kick butt....

So says the GI.... your biopsies came back normal.... here we go I'm thinking, I am about to get the brush off.... BUT he says, these tests can be very unreliable, and you were on steroids, and your disease seems to be very predictable depending on how high your steroid dose is.... I'd like you to go back up to 25mg for the next six weeks, and start back on the Mercaptopurine again...

Oh, OK.... Thanks.... ummm cool. See you in six weeks then...

So now I just need to turn my psyched up energy to some dust that I think might be lurking in the loft, and my husband's pant drawer looks slightly asymetrical so that could be attended to....

Oh and I put my name down to run for the National Association of Crohns and Colitis in the London 10,000 in May 2010.... I figured that if the NACC are involved there should be a plethora of port-a-loo's on route surely! Gotta have a goal and I have decided I will surely be back on an even keel by then - my Crohn's 1 year anniversary!

Happy New Year Everyone - Here's to lots of us either attaining, or remaining in remission for 2010!

Lishyloo x
Lishyloo said:
Oh and I put my name down to run for the National Association of Crohns and Colitis in the London 10,000 in May 2010.... I figured that if the NACC are involved there should be a plethora of port-a-loo's on route surely! Gotta have a goal and I have decided I will surely be back on an even keel by then - my Crohn's 1 year anniversary!
First, that is great!! I did one for the CCFA in December and afterward I said I would never run a marathon again. Now I am contemplating doing another one, even a short 10k this weekend. Though running for the CCFA and with so many others with Crohn's and Colitis it was a really emotional experience. Around mile 10 I thought I was going to totally break down emotionally, but it was so rewarding. (There were a ton of bathrooms along the race route!)

I have been back up on 40mg a day of the pred for two weeks now. Boy do I feel fantastic, even though like you I am totally restless, my legs can't calm down so I can sleep, and the BM's are massive!

Worried to see what is going to happen once I begin to tapper. Glad to see you are getting the treatment you want.

Again, I will be cheering for you in the run! It is a great experience.
oh Lishy, I don't know whether to laugh or cry...leaning towards laughter, you have a real gift with the way you word things!

In practical terms...if you're struggling for outlets for that pred energy, my house is a bomb site and I'm only a few hours from you (Cheshire). Even with the snow, if you really try you could be here by lunch time tomorrow, and my house could be spotless by teatime, assuming you put your back into it obviously.

Seriously - if you can do that run, then go for it, I'd sponsor you willingly. I'm hoping 2010 sees me in remission - into my nth flare (thought it was just TOTM stuff, seems not) - hopefully it'll happen for all of us sooner rather than later xx


Punctuation Impaired
Lishy, if I ever make it across the pond, you are the first person I want to meet!
I hope you start to feel better. I wish that 6mp didn't make your hair fall out...The doctor's not ready to try biologics on you???...And, I wish I had a mom like you have....Sometimes we all need an advocate! It can be so hard fighting the good fight.