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Not sick again!!

Hi all,

Well as you know I have been taken off all crohns drugs trying to work out whether they were making me sick or I was having a flare, seeing as my inflammation markers don't work makes it hard to tell when Im flaring etc. Anyway had been doing really well the last 4 weeks but now this weekend have gone back down hill.. I keep telling myself that its not the start of another flare but who am I really kidding. I have really sore joints, my whole body feels like I have been hit by a bus, have bad right abdo pain, nausea with a bit of vomiting but nothing bad yet, lose of appetite all food is just not doing anything for me and struggling to even get anything down cause it just makes me want to gag, really bad burping and i have urgency to go to the toilet but then nothing happens or just have heaps of gas. Im just over not getting better I seem to take 3 steps forward to only take another 3 steps back again... why does this disease have to be soooo frustrating when it comes to treatment and working out what is best and going to help... naive I thought maybe no drugs would be my answer and I think I was possibly a little in denial that I had crohns wishful thinking hey.. maybe the docs have it wrong!!
Im sitting here contemplating whether I should send my GI an email regarding my present condition as it has only been 2 and a bit days of feeling off but I know the longer I leave it the worse I possible could get and Im going away next weekend to Melbourne for 4 days so want to be good for that. Im sorry Im rambling on but thats just how confused and over all the shit that comes with this disease.. how emotionally draining it is and how sometimes all you want to do is scream out and hate the world... sorry just having a bad day I suppose, hopefully it will pass and I will start to feel better tomorrow.
Thanks for listening its great to have a place to come and vent.
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I hope you start to feel better soon! And that they can figure out what's best for you treatment-wise :)
I'm sorry Tan!!! This was how I was feeling back in December and I hate that feeling! I would wait until Monday morning and if you aren't feeling any better, I'd call your doc and see what they need to do to get you back on something. I know, not what you want to hear :O( I hope you feel better soon!!! Have a good trip next week!
Thanks peaches its what I have been thinking just hang out a bit longer and its not like he can do anything today being sunday and all so will see how I wake up tomorrow then get onto him. Just sooo frustrating being sick all the time and not being able to enjoy life.. its Jamies 30th bday today and all Im doing is either sleeping or on here to you guys.. not that he mines cause he is a bit hungover from celebration last night so he is just laying on the couch but still. I even had an early night last night as I didn't want to push myself and get worse was hoping that magically I would wake up great!
I just sometimes wonder if they really have the right diagnoses and if I do actually have crohns... I know thats just denial speaking as they found ulcers and narrowing in my ileum and I reacted great to steriods but just with everything that has been going on since coming off the steriods I don't seem to be getting better.. have short periods of it but not full remission. I realise some people can take ages to get it all under control but when will my time be.

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Awe Tan, you have really had ups and downs, and as most of us know Pred is a temporary fix and hides the symptoms. I know what it means to think you got in the bag and under control, and then it comes back, and with a vengence.

I miss a CCFC meeting, a 1.5 facial (a christmas pressie from the hubby) and the Gi appt for my full explanation of all my test. Gotta make the appt to hear the rest ugh! I can never make plans because my Crohns is so very unpredictable, I wish I could find something to keep me pain free just a month straight...guess that is too much to has huh? So I hear you and sending healing hugs over to your side of the planet... did you get them yet?
Ha..ha.. thanks Jetta just got them now and they are wonderful!! Thankyou..

I know what you mean I had organised and paid for this holiday like 7 months ago it was just before I actually got sick.. I try not to plan anything now as Im too afraid I will get sick as Im so unpredictable with it all. Its totally crap that we can't even organise to get a facial done for fear of having to cancel. I had a month pain free but that was from being on MOBIC which is a NSAID which my GI original said I could take as long as it was after food and had felt great but then when I was sick last time he said it might be better to go off it and see how you go.. well my pain has come back ten fold.. not happy at all. Nothing else seem to even take the edge off the pain so Im going to talk with him again next time I see him. Hopefully its just a passing thing again.. I generally get these small attacks every couple of weeks and they last a few days so fingers cross thats all it is again.. I know they are crohns related and every time I start to feel sick get freaked out and worry but I just need to tell myself that in a day or two you will start to feel better but just bad while trying to get to being better... plus I worry that it wont be just a day or two like my first major flare.
Im sorry Jetta that you too are having a hard time its just not fair is it.
Thanks for your support this forum really makes a difference in my life and I actually do feel slightly better after coming on here well mentally anyway! :)
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Hi Erazer... No I don't think my GI will put me back on imuran cause my levels spiked but he is considering whether to give 6mp another go its the sister of Imuran so similar just think your body processes it diferently. He said he would only try a low dose and see how I go cause I seemed to not do well once they upped my dosage but had been doing ok on the lower dosage. What dose of Imuran are you on again?? Im glad you are having success with Imuran.
Yeah i wouldn't go up unless you start to have issues if that amount is holding the disease at bay then that is awesome, plus the less drugs you need to put into your system the better I say.
I was on 100mg when I started to have issues.. on 6mp I got up to 50mg before i started to get sick gain (but apparently 50mg on 6mp is the same as 100mg of imuran) so my doc has suggested maybe going back to 25mg.. so will see how I feel tomorrow whether I call my doc or not. Just be great to feel alive for more then a few weeks at a time :)

By the way erazer I love you photo looking hot hot hot!! Ha..ha.. ;)
Sorry too hear ya Doin bad Tan
and I hope you an ya gp can work something out too get you on ya feet again soon

goin on holidays during a flare is not fun

I drove too canberra for a holiday- I'd paid for months in advance - early Jan this year (mid 40's) with my recent flare up
it was the longest most horrid trip I've ever done

so hope your in better shape fast hun
Thanks guys for all your support it really does help to lift ones spirits!!!

Yes Lishyloo Im am starting to get really worn down by it all but gotta try and stay positive otherwise will fall in a heap.

Im starting to feel a bit better today so have held off sending my GI an email just yet. I seem to have these attacks every few weeks and they last a few days but I freak everytime that its not going to be just a few days. I will speak with my GI in 2 weeks when I see him for an appointment about everything that been going on and see what he has to say. I have also got an appointment with my normal GP this arvo as my sinuses just wont settle down so that could also be causes issues with my stomach with all the post nasal dripping!! Lovely :)

Erazer - maybe you should talk with your GI about the whole feeling like your on whizz seems a bit strange?? But then again you might like to feel like that 24/7 ;)

Rob - thanks mate yeah it would be horrible to go away when so sick its the one thing I really dread!! So fingers cross I pull thru this seek ok.