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Ok so what gives?????..............

R

Rob

Ok so I'm in the middle of one my worst ever flare ups - and nothing it seems has been able to fix/slow things up except for hydrocortisone iv treatment I had in hospital

so I was put forwrd too go on a new drug trial - vedolizumab MLN0002

I went for a heap of tests etc and passed/failed (which ever way they look at it) all the requirements needed for the drug trial ....... Except one

Apparently my imflamation markers are extremly low (WTF!!!!!!?????)
according too them I couldn't be in an active flare up

which is funny seein I'm livin in my bathroom just about and on my last two flexible sigmoidoscopys they saw I was badly inflambed and ulcerated

So now I mite not get into the trial :(
my only chance it seems is too allow them to perform a full colonoscopy

problem is I'm worried that, seeing as they say my imflamatin markers are low that after goin thru al the fun of a colonoscopy that they will say nope nothin wrong
and my gps an spec said if this trial doesn't work then I'm gonna hav too go for an op an end up with a stoma bag

soooo not happy ATM
 
Nyx

Nyx

Moderator
I'm sorry to hear this Rob! I know how you wanted to get into the trial. I guess the only advice I have for you is to go for the colonoscopy and hope for the best (or worst, whichever way you want to look at it). But, if you don't get into the trial, the surgery and having a stoma really aren't that bad. I know it's scary, and it is life alterting, but it can be for the best!

Of course, let us know what's going on with you....and if you have any questions/concerns about the surgery you can contact me and I'll try and help you as best as I can.

Good luck....I'll be thinking of you..
 
Nic

Nic

Sorry to hear you're having a rough time Rob :( I agree with Nyx, go for the colonscopy. Or could you show them the results from you last one? I see you tried Remicade and it didn't work, but what about Humira, have you been able to try that one yet? I'm not sure what's available in Australia, but if they have that maybe you could try that first? I just started it and crazily enough I kinda already feel better, although it's only been 4 days (started last thursday) and I think it'd be pretty nuts for it to have started working already! It's gotta be in my head!!

I hope you get some relief soon!! I'll be thinking of ya and praying for ya!!
 
R

Rob

Thanks guys

I'd never heard of humira until I found this site
my gp never mentioned it

I think the stress of this has gotten to me ATM
I'm meant too be sleeping but havnt
I'm in middle of one of my worst nights for a while
bad cramps etc ...... And the blood is back again first time for a while since hospital
I'm also now actually vomiting while I'm having a bm - this is new for me

I'm doing a phone diary ATM for the trial as a leed up incase I get in, so have too keep track how many bm I hav a day etc
I call at 10:30pm everyday - it's now 3:50am sooooo about 5hrs
and the tally is sitting at 16 already for this 24 hr period - still got 19 hrs to go :(

I so need stop worrying bout it as I think im making myself worse
 
imisspopcorn

imisspopcorn

Punctuation Impaired
When do you go back to your regular GI Rob? I think you may need to call them and let them know you aren't feeling great...I'm sorry buddy. I was really hoping you would be feeling great.
 
R

Rob

Well thts just it
cos I'm meant be going on this trial I'm no longer seein my specialist
the trial ppl meant be taking care of my needs etc

I dunno anymore

maybe I'm stupidly somehow willing myself to get worse so I'll pass the colonoscopy or something - sounds crazy I know
prob jus my sleep deprived brain bein silly

it sux cos jus two days ago I felt great well maybe not great but compared to how I had been feeling - and now I would almost say that I was awesome jus cos how much better I felt, then bang I like this again
 
imisspopcorn

imisspopcorn

Punctuation Impaired
Rob, I think that is the nature of the Crohn's beast until you are in remission...Good days speckled with some horrible bad days. At least that was how I felt....It really makes you savor those good days..This is a cruel disease. It is such a tease!
 
R

Rob

Yep I hate it
it's virtually made me a recluse
I have no social life anymore, havnt worked in months an things jus don't seem too be gettin any better

tho saying all this i do feel bad
as my cd is prob jus more annouying compared too that of many others on here, thankfully I havnt got any fistualas (sp) or apssesses (sp) etc or bad strictures
So i guess I shouldn't really be complining
 
imisspopcorn

imisspopcorn

Punctuation Impaired
I hear you!...I am so thankful I don't have fistulas or abscesses either...No matter what happens in life, there is something to be thankful for!
 
R

Rob

Tru tru

well I've given up tryin too sleep it's 5 am an sun be up soon an everyone start work in a min so no sleep for me

mite try a hot bath instead
 
Nic

Nic

Aww Rob I hope you get feeling better! I know you said you aren't seeing your GI right now, but maybe you could still call them and see what advice they have for you and ask them if Humira is available in Australia. There are a couple meds on here that my docs have never brought up to me either and I know they are available here in the US cause the people on them are here! LOL Dunno why they skp over stuff! But hey you could get lucky and they say Yeah we have Humira! Then you wouldn't have to stress so much about the trial.

Good luck Rob, get feeling better soon!!
 
Astra

Astra

Moderator
hiya Rob

God sorry mate, really thought you were getting better, poor you
I'm a bit worried about you vomiting tho?
I started vomiting, and went to A&E, had never vomited before with the Crohns, so was shocked when they told me my bowel was going to rupture.
Can't you see your doc today sometime, just feel something's not quite right here, when you were doing so well
let us know
besta luck bud
 
Mountaingem

Mountaingem

I'm really sorry you're going through so much Rob. I also can be in the middle of a huge flare and have low inflammation markers-happened to me a few weeks ago-so frustrating! I 've had alot of trouble with doctors because of this, but once I started having symptoms outside of the bowel, they could actually see the inflammation.
My GI has me keep a daily diary of symptoms as well as daily measuring my tempurature.My joints in my hands swell really bad and turn bright red, then I get stiffness, the doc took one look at my hands and said, "Well, you inflammation markers are normal, but one look at your hands and I don't need a test to tell me you're flaring."
Do you have any symptoms outside the bowel-ie in your joints, eyes/mouth really dry?
 
R

Rob

I wake up with blood shot eyes and a mouth full of blood
after a shower etc It seems too clear up

I get sore bad cramps in my calves that's about it

I'm headin in for another blood test in few mins with trial nurse so I'll take too her
I jus got some more somac as I was out - hopefully this will help my vomitting
jus need slow my bm down 24 already today gonna be finishing the day at about 40 - should look interesting on my phone diary
 
C

Crohn's 35

Inactive Account
Hey Rob, you are not having a good go of it ... I was going to say try Remciade but I see it didnt work, me either was allergic, Humira helped but not for long... You are still on Prednisone? I am on 40 and almost no pain just a slight bloat feeling and makes both of my sides sore but like you. I hope you get this sorted out and you really need someone there with you. Anyone to help you? Keep us posted. Big hugs!
 
R

Rob

Thanks Pen

I'm at the hospital now
I found my report that had a photo from my test an the nurse said that it is good enuff for me too enter the trial there were enuff ulcers an was very inflamed in the pics
so yay for me i should get my first infussion either fri sat sun or Monday
 
imisspopcorn

imisspopcorn

Punctuation Impaired
Good news Rob....I'm exhausted from just keeping up with all your trials and tribulations, I can't imagine what it is like for you....I hope this trial is what you need to have some normalcy again....My prayers are with you.
 
R

Rob

Thanks guys
yea I think having the carrot waved in front then jus as I go for it they remove it has been hard an stressing which doesn't help this disease

I'm just hoping that this time what they say is actually going too happen
then I can get on with my life an stop stressing everyone out Inc you guys

you've all been great listening too my rants an so caring
I don't know how I would of coped these last few weeks without all your support, words aren't enuff too express how much it's helped too hav an understanding ear

thank you all
 
S

Sue-2009

Rob...So sorry to hear that you are struggling....Peace and hugs...Rant, away...We are here for you......I am struggling now too...It just suc*&S!! I've said it before...why can't they figure this darn disease out!!!!! I hope the new meds help you...I just said a quick prayer for you..Sue
 
Astra

Astra

Moderator
hiya Rob

Sorry i'm late with this, just read the good news! So made up for you, really hope they don't let you down next week, fingers crossed for ya!
Hope you can chillax a bit now til then
besta luck bud
 
R

Rob

Thanks for the support an well wishing

hopefully all goes well an smoothly next few days

not jus for me but all the rest of u too
we all need a break
 
C

Crohn's 35

Inactive Account
I am not sure about the rest of you but between Nov to March are always my worst flares. Could be winter time, dunno.. then I spend have my spring trying to get better and summer is here and just getting into the groove. I really need to paint my house, it is 10 years old now and my living room open concept needs to be done but I really dont feel like it. Maybe next year ;).

Feel better Rob, it will come, it always does you just have to look after yourself. You need a break big time!
 
R

Rob

Thanks Pen

not sure on that one as Nov- march is summer here in Australia
I hav found the heat too be worse tho I actually prefer the colder weather, much mire comfortable - aslong as it doesn't rain lol
 
R

Rob

It's funny as my wheat bag hot shower an hot baths do wonders in a flare up
yet I feel crap on hot days- an we get alot of them here an extremely hot too

I'm locked inside with my aircond jus too try an keep comf
yet years ago b4 cd I'd be out having a ball in this weather

it sux
 
R

Rob

Well I'm on a low residue/low fibre diet

set out by the hospital dietition, it's helped a bit but it's no long term sollution

hopefully once I start my infussions things will improve
 
C

Crohn's 35

Inactive Account
Diet does help some but it is not the answer for every flare. I am avoiding refined sugar (Stevia and getting used to it) and dairy. So far not too bad but 40mg of pred work on me fine.
 
R

Rob

Hi sue

a wheat bag is a cloth bag full of wheat
u put it into a microwave (with a glass of water) and heat it up - careful not too over do it or will be too hot

it's then like a water bottle except no worries of water leaks lol plus it last longer and molds into shape better
 
Astra

Astra

Moderator
excellent them
you can get them filled with lavender too, to help you sleep, the aroma is gorgeous
 
R

Rob

Cool what do you mix the lavender with?
Wheat and lavender?
Mite make one up for me mum - she's got arthritis an hs trouble gettin too sleep so mite help
 
C

Crohn's 35

Inactive Account
Nyx said:
Never dis the heating pad!! I love, love, love mine! lol
Click to expand...
Right girl!!! Heating pads are great... I have a wheat bag but lasts like 20 min and I don't like the smell of Lavender...yeah I know I am different. :lol:
 
Nyx

Nyx

Moderator
I don't like the smell of lavender either...I used to work in a retirement home and all the ladies wore lavender. So now I associate that smell with retirement/nursing homes...
 
R

Rob

Woo hoo!!!

Just confirmed my first infussion is on Tuesday
Monday no can do as it's a public holiday here
an can't do today because aparently I've been having too many bm a day WTF??!!
So I gotta settle a bit b4 hand so booked for tues unless I keep having excessive amounts of bm a day

I thought that was why I was going on this drug??
Gotta be under 20 a day for a few days
anyhoo no biggy I'll jus go super bland on my diet an see how I go that should slow things up
 
gibby

gibby

aw thats fab news Rob, will be interested tohear how you get on, hope you settle down a bit before then....

good luck! xx and big hugs xx
 
imisspopcorn

imisspopcorn

Punctuation Impaired
Good news Rob...So if you popped a few Imodiums, would that be cheating???...Fingers crossed for a slow down in the BM'S!
 
R

Rob

Thanks guys

I thought about the imodium too but would that show up on the blood tests an stool tests etc?
Don't wanna be kicked off for cheating etc
I'm just eatin stuff like dry white toast an biscuits etc ATM
small amounts if plain steamed chick etc

yea I'd hate too hav too need too poop during the infussion lol
tho I'm guessin I prob will lmao
I'll do my best too keep all informed on my progress etc as that's another reason for doing this trial, too see if it can help others in the future
 
Astra

Astra

Moderator
YAHOO Rob
this is fab news, at last a bit of reprieve for you
got everything crossed for ya!
big hug your way xxx
 
Pirate

Pirate

Rob, I really hope it helps you. You deserve to be able to get out and have some fun.
Great news, buddy.
 
S

sharon j.

Hi Rob,
Regarding your vomiting. That started happening to me before my last surgery. I figured out it was the result of being in so much pain. The pressure in my gut was the worst. I'm so sorry you're having such a hard time. We've all been there. Congrats on getting in on the trial. If you do end up with the bag, however, it's not the worst thing in the world. I ran from that surgery for almost 30 years but it caught up with me in January. I'm adjusting now and the people on this site are quite helpful. Be kind to yourself and lean on anyone who lets you. It helps and it's important to let others care for you right now. God Bless, Sharon J.
 
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