Back to properly introduce myself ;-)

[Amy (worrywart)]

Hey peeps ;-)
I'm not sure where to even start but I'll start by apologizing for not being on in sooooo long ;-(
I'm my little girls full time carer and I've been kept very busy making sure her and her siblings are getting all the care and love they need xx
Anyhow back to my story and how at 16 I found myself after being misdiagnosed as anorexic to finally hearing I'd crohns disease ;-(
Fast forward 12 years , 2 pregnancies resulting in my beautiful twin girls and my little prince , a little few minor flare ups until now when , I'm going through a rough crohns ride ;-(
It all started last year with crohns in the terminal ileum and 2 dreaded fistulas , setons EUA ,s , the works !!!
So I head to the hospital last week to see are things looking up and now I'm more scared than ever !!! Silly really considering I'm a long term crohnie but the clue is in the name I'm a worry wart !!!
The GI informed me that my liver test is raised and my esr is 71 and now I'm in for another EUA on Tuesday and in the next few weeks an MRI ,a colonoscopy and a liver ultrasound, I also had to have screening bloods done !!!
Sorry for the long post and I know some of you are and have gone through so much more ,,,,, I can't help but worry ,,,
Loves and huge hugs to u all
Amy xoxo

 

[David]

Hi Amy! Thanks for taking the time to introduce yourself

I'm sorry to hear you're having problems right now And it's understandable to worry. If at any point you figure out how not to, please let me know as I could use some help in that regard as well.

What medications do they have you on right now?

I'm glad they're reevaluating your disease. Please keep us updated as to what they find.

All my best to you

 

[Gwen pippy]

Hi Amy
I'm so sorry to hear you are going through a bad patch, you definitely have a lot on your plate right now and it is understandable to be worried. I am glad to read that your GI is ordering the test and that you will hopefully be back on the mend real soon.
I can fully relate to having a flare and trying to look after children, I was dx age 11 and only had my first child at 32 and then another at 34 and then bam a major flare following the birth (my worst nightmare) but after some test and my meds being adjusted I managed to get back some of the control and now when I feel like a flare maybe on its way I try to tell myself that I got through it before I can do it again if I have to.
I'm sending you big hugs and I'm here if you need to chat.
Gwen xxx

 

[Amy (worrywart)]

Hey David
Thanks sooo much for the welcome and reply ",)
At the mo I'm just on pentasa 2 tabs twice daily plus b12 injections and probiotics !!!
I've been on pred and entocort to get things under control in the past ..
I think my next step is 6mp as I had a reaction to imuran a few years back ;-(
I'm just sooooo worried about the esr it hasn't creeped this high before so I'm really hoping they get the bottom of what's going on ,,,
Don't worry If I stumble across a magic cure for the stress, worry, and anxiety that comes hand in hand with this disease I'll be sure to share it with me fellow sufferers hehe
Big best wishes from Ireland to u ;-)

 

[David]

If that's all you're on and you have fistulas, yeah, moving to something stronger is a good idea. 6-MP can be a wonderful drug and I hope it does the trick for you In the meantime, you may want to look into enteral nutrition to help calm things down.

 

[Amy (worrywart)]

Just seen your message Gwen when I'd posted my last reply ;-(
I too can relate to you it's soooo hard sometimes when your having a flare to not let it interfere with your mammy duties ;-)
My little girl has epilepsy and a shunt for inter cranial pressure and she's my little warrior , honestly couldn't be prouder of all she's been through and continues to go through so I look to her for a kick up the bum to keep going hehe ",)
I just can't wait to get this under control now and get some normality back instead of having the constant worry of tests and results , followed by the dreaded side effects of new meds on my mind ;-(
I think I actually worry myself sick sometimes it's awful ;-(
Anyway enough about me, I really hope it's not another flare for you hun and that it settles down , but keep the chin up and you'll get through ;-)
Ps dido I'm here if you ever need a chat
((((((((( big hugs back at u ))))))))

 

[Amy (worrywart)]

I think your right David I may have to climb the ladder and give 6mp a bash ",)
I did the worst thing ever and hit dr google which of course left me in a world of panic and not willing to even try it !!!
I know now that I'll have to put my trust in the team and get this under control ",)
I'll be scared silly but sure I need to put my logic , brave head on and solider on hehe
Hope your keeping well ,,
Thanks again, it's so much appreciated , it's nice to know there's people that understand what your going through , I think my hubby as wonderful as he is will be looking for ear muffs soon If I keep nagging him ",)

 

[David]

I've been reading up on 6-MP and its close cousin Azathioprine a lot lately. Yes, there are potential side effects to them but all in all, they're excellent drugs. And if the doctor is smart about dose optimization and monitoring you, then the likelihood of side effects is diminished while increasing the likelihood of therapeutic benefits.

Ask your doctor these questions:

1. Are you going to test my TPMT enzyme levels or genetics before we start?
2. Are you going to monitor 6-TGN and 6-MMP.
3. What other blood levels are you going to monitor and how often?

 

[Amy (worrywart)]

Awh Gwen it's a good job we're not prudish they'll be fed up looking at my backside by the time I'm sorted ",)
It's second nature now just jump up there till I have a look and then the dreaded questionaire about your toilet habits I've no shame now lol
I can't complain about our health system I've been blessed with good docs although there was a bit of a wait for this EUA but I drove the secretary that mad that I got sorted in the end ",) as for the hubby mine is the same "try not to worry Hun " or " will u get of google now " I think because he knows I'll drive him mad for his opinion lol ",)
I had screening tests done for viruses and hep tests on thurs David they said they were screening bloods but I'll defo take not of what you've said and put it to them on Tuesday before my lovely EUA ;-(