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03-08-2017, 12:42 PM   #1
Sophabulous
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Dear lord help me....

Says it all.....

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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
03-08-2017, 02:00 PM   #2
Cat-a-Tonic
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Oh no! I haven't done that one myself, but I'm sure it's not pleasant. When do you have to start drinking it? I hope it's not too horrendous.

This tip might help - when doing prep a couple of years ago, I told myself that I was just doing a "cleanse" like a celebrity would do. So I sort of treated prep day as a spa day. I turned my bathroom into a spa as much as I could - I got scented candles, fancy bubble bath, and face mud masques. I had my ipod on a dock in the bathroom, playing a soothing and relaxing playlist. In between (or during) bathroom trips, I gave myself a pedicure and a facial and took a bath. It wasn't too bad. Prep day is never fun no matter what, but that made it more tolerable I think. So pamper yourself a bit, that might be a good distraction from how horrible the moviprep is. Good luck!
03-08-2017, 02:07 PM   #3
Sophabulous
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I've just about finished the first dose, so far not too bad! I was advised to add a bit of elderflower cordial which has taken the edge off the nasty taste. I really struggled to drink it last year!

Not too bad this time as I hadn't eaten for 8 hours before starting it. Last time I had a PM appointment so I could eat until about 6pm the night before I think, do 1 dose after that and another dose at 6am on the day of the appointment. At least I don't have to get up early this way around lol!
03-08-2017, 02:09 PM   #4
Sophabulous
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I've just realised my arm looks so odd in that picture?! Like a scrawny zombie limb or something? It's not actually like that, must be the angle I was holding the box at
03-08-2017, 03:27 PM   #5
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Dreaded prep day.....I have this on Sunday.....again. So not looking forward to it!
03-08-2017, 03:48 PM   #6
cmack
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I'm sorry to hear that you are having such a bad day. I hope things get better. I never liked doing prep very much either.
03-08-2017, 03:49 PM   #7
cmack
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I wish you the best with your prep day as well. I remember those days. Yuck!
03-08-2017, 03:52 PM   #8
ronroush7
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I wish you the best with your prep day as well. I remember those days. Yuck!
Me too
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03-08-2017, 03:56 PM   #9
cmack
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Group hug.
03-08-2017, 05:52 PM   #10
Sophabulous
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Defo a group hug moment! I *think* Moviprep has done its worst. Not risking sleep just yet though lol.

Good luck to you on Sunday dejavucandace!!
03-08-2017, 06:12 PM   #11
emmaaaargh
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Oh no! I got sent Moviprep in January and immediately balked at the massive volume and asked for Picolax instead. Have you finished it or do you have another dose to go? Congratulations either way!! The hard part's nearly done
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03-08-2017, 06:30 PM   #12
Sophabulous
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Oh no! I got sent Moviprep in January and immediately balked at the massive volume and asked for Picolax instead. Have you finished it or do you have another dose to go? Congratulations either way!! The hard part's nearly done


I've finished drinking it now, just waiting for the last of the *ahem*...effects to wear off!

I had picolax when I had a small bowel MRI last year and I had to call the hospital the next morning in a panic as it didn't do anything! I only had one sachet though, I'm sure if they'd prescribed 2 it would have had some effect.

Moviprep is very unpleasant but it does do the trick to be fair. Although the taste is absolutely foul, at least I don't have any nausea today. It really tested my vomit control last time
03-08-2017, 06:38 PM   #13
cmack
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I wish you the best. I know how gross prep is. You are a trooper compared to me.
03-08-2017, 07:00 PM   #14
emmaaaargh
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Wow, congratulations again on finishing! I know I'd never be able to. Yeah, with Picolax it only ever seems to take effect after the second sachet - always a bit concerning if you have an afternoon appointment and have to have a morning dose! Last time I was worried that I wouldn't be able to stop by the time I had to leave for the hospital!

Good luck with the scope, too! Hope all goes well
03-08-2017, 07:01 PM   #15
Magnolia24
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That dreaded day. Sending you strength!

Also I'm so in love with Cat's suggestion and am definitely doing that next time.
03-08-2017, 07:06 PM   #16
Sophabulous
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Thank you all, I'm quietly confident things are much better than last time (about time too!)

Just hoping that tomorrow doesn't throw up any nasty surprises. I'm not sure I'm being told the result tomorrow or if it will be at my next appointment actually?

I decided to go full masochist and book myself in for another rather unpleasant procedure on Monday too, just to totally spoil the whole week lol!
03-08-2017, 07:09 PM   #17
Sophabulous
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That dreaded day. Sending you strength!



Also I'm so in love with Cat's suggestion and am definitely doing that next time.


Yep, that sounds pretty darn relaxing! This time next year I shouldn't be sharing a bathroom with 2 others so it's definitely something I'm going for....no boys allowed lol!
03-08-2017, 08:55 PM   #18
Lisa
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I had my annual scope last week, remicade this coming Monday and an upper scope Thursday after that..... Guess we are suckers for punishment!
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
03-08-2017, 09:16 PM   #19
ronroush7
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Humira tonight and a barium swallow tomorrow.

03-08-2017, 09:21 PM   #20
cmack
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God speed Ron!
03-08-2017, 09:24 PM   #21
ronroush7
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Thanks

03-09-2017, 09:19 AM   #22
Sophabulous
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I'm all done. My Crohn's is now moderately active rather than severe so we're going the right way. That's taken 2 pred tapers from 40mg, 12 weeks liquid diet and 100mg azathioprine daily in 12 months. I was hoping I would only have mild inflammation now as all that treatment in 12 months seems like a lot! I guess it just takes a long time to settle down when it's gone unchecked for so long :-/

Damn though it was painful this time. Glad it's over and I hope I won't need another for some time now!
03-09-2017, 09:41 AM   #23
my little penguin
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And they are still leaving you on Aza ?
Even though it's still not under control ???
Can't they bump you to a biologic so more damage isn't done ?
Aza reaches its peak after 3-5 months
So what you see is basically as good as it gets after 12 months .
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03-09-2017, 09:57 AM   #24
Sophabulous
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And they are still leaving you on Aza ?

Even though it's still not under control ???

Can't they bump you to a biologic so more damage isn't done ?

Aza reaches its peak after 3-5 months

So what you see is basically as good as it gets after 12 months .


I've actually only been on the aza for 6 months, sorry that wasn't clear. It took forever for the TPMT test to come back for it so in the meantime they tried me on Pentasa but that had terrible side effects for me so I stopped taking it.

Between April & September last year I wasn't taking any maintenance meds as a result, and we were waiting for TPMT bloods to come back so they could give the go ahead for Aza!

I do feel much better than I did, but I know I could still get better than I am. I've spoken to a nurse/HCA when I was discharged today, I'll get an appointment through for an appointment with the IBD nurse or consultant in the next few weeks so we'll discuss options then.

I'll be sure to come back and let you know what the outcome is!
03-09-2017, 10:03 AM   #25
Sophabulous
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Well I say no maintenance drugs, I did one pred taper as soon as I was diagnosed which finished in June 2016. Then I flared so did the liquid diet for a few weeks instead. I was actually still doing the liquid diet when I started the aza but from what I've been told that reduces inflammation anyway by resting the bowel so hopefully it was some help before the aza started kicking in.

I've then done another pred taper in December and all through January and early Feb as I flared again in December after 3 months on aza, so that wasn't all that long ago.

It will be interesting to hear what they say. Would they still prescribe a biologic even though it has improved from what it was like to begin with?
03-09-2017, 11:22 AM   #26
Tony H
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Best of luck with the scope , now that the prep is done , the worst is over .
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03-09-2017, 12:23 PM   #27
my little penguin
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They aren't looking for improvements
You should have complete mucosal healing
No signs of inflammation
Especially being on steriods twice
And een once (equivalent to steriods )

Leaving inflammation leads to scar tissue , strictures, fistulas and obstruction

Think of a cut on your arm
The body inflames and then form as hard "scab"

Your intestines are soft and flexible like a garden hose
But the body thinks they are "sick"
And causes inflammation trying to "fix it"
The repeated inflammation causes scaring which is
Hard like pvc pipe and it thickens so a hard time to move stool through
This builds up pressure
So sometimes the body creates thin "new tunnel intestines " fistulas to by pass the thick hard areas
Other times it lets it get more narrow
Which leads to obstruction or rupture

Which is why GI try to eliminate all inflammation and get mucosal healing
Since you have been on Aza for 6 months and pred
I would try to see if they will let you try other options to let your gut heal

75% of Crohns patients otherwise end up with surgery within 5 years
And after the first surgery the odds go up
03-09-2017, 12:30 PM   #28
Sophabulous
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Ok, that's not at all scary

I'm still quite new to it all really but I'm glad to hear that my gut instinct was right about the inflammation not reducing enough given the treatments I've had.

If they do go down the route of a biologic can I continue with the azathioprine as well? It's just it does help with my skin flare ups. What if they want me to carry on with aza alone? I don't deal very well with conflict and tend to be a doormat, particularly with doctors! I would feel like I was questioning their knowledge & experience
03-09-2017, 12:39 PM   #29
my little penguin
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Some continue Aza at a lower dose with biologics
But most GI in the US add mtx low dose with biologic
Since Aza has a high risk of lymphoma to begin with (biologics don't )
And T cell lymphoma is a higher risk when Aza plus biologics are combined
T cell lymphoma is fatal

Mtx plus biologics does not have that risk

Some skin issues oddly enough are related to Crohns
-
Tend to get better when the intestine get better if that makes sense
Less inflammatory cells floating in the blood

Getting biologics in the U.K.
Is very hard from what I understand
Since it all about funding in your "district "
And not about what best for the patient

In the US it depends on your insurance- some are easier to approve it then others

It is hard to stand up to docs for yourself
I am mom so much easier to push for what's right for my kiddo

But ask the hard questions
If the drugs currently did not stop the inflammation
How does the doc plan to stop the cycle ?
What would be different
Repeated steriods does not stop the cycle
Why are they willing to wait until xyz happens
(Damage that requires surgery or ...
Before switching. Etc.,,

Lots of questions
03-09-2017, 12:43 PM   #30
ronroush7
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Ok, that's not at all scary

I'm still quite new to it all really but I'm glad to hear that my gut instinct was right about the inflammation not reducing enough given the treatments I've had.

If they do go down the route of a biologic can I continue with the azathioprine as well? It's just it does help with my skin flare ups. What if they want me to carry on with aza alone? I don't deal very well with conflict and tend to be a doormat, particularly with doctors! I would feel like I was questioning their knowledge & experience
Yes, you can continue with aza with a biologic. I am currently on Humira and azathioprine.

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