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So sick of this disease

RANT ALERT. Sorry, not sorry.

Been to the toilet 4 times already and it's only 10.30 am. So self concious that someone will say something about it at work and I'll have to make up something. Wish the medicine would start working properly but I think this is going to be a longer road than I originally realised. My liver function test was high and they might have to take me off azathioprine if it stays high, but they don't want to keep me on prednisolone for too long. I was due to see the specialist this week but still haven't received an appointment. I have so many questions about my medicine and my MRI results and I know I can call my IBD nurse but I wanna talk to my doctor face to face so I can get my thoughts together properly, whenever I phone them I end up forgetting stuff. I hate feeling like crap all the time.
 
Welcome. I am sorry you are having such a rough time. I have an appointment with my specialist and people are encouraging me to write my questions down. I hope they can get you on the right mixture of medicines soon.
 
RANT ALERT. Sorry, not sorry.

Been to the toilet 4 times already and it's only 10.30 am. So self concious that someone will say something about it at work and I'll have to make up something.
I'm Mr. TMI so I tell my co-workers everything that's going on so they're not surprised to see me going to the bathroom several times a day. Of course every time I go I have to grab a gauze bandage which is kind of embarrassing.

You could just tell your co-workers you're having a medical issue without giving details if you're not comfortable with it.

Dan
 
Thanks ronroush7. I was only diagnosed in February this year so I am still coming to terms with my diagnosis mentally and the fact that it is a long term illness. I always try to write things down for the appointments but I find I go away with more questions than answers. Also I guess because I am so newly diagnosed and every patient is totally different they can't always give me answers which is frustrating but not their fault.

Danmc fortunately my boss and main supervisor are aware of my condition so I am not worried about getting into trouble as such, but where I work there are other departments on the same floor, people I say hello to and make tea for but don't work directly with or talk about personal stuff.
 
You are welcome. I have had the illness for a while but I feel like there is still a lot of questions I have. I am glad your boss is understanding.
 
I'm sorry you're going through this. If your mornings are regularly like this, what I did was get up a few hours earlier every day, and got it over with before going to work. Or skip breakfast, whatever works for you. My stomach always seemed to settle down before noon. Azathioprine (and other meds) can take a while to take effect. Hang in there.
 
Thanks tuff. Normally I go before work and then that's it until lunchtime but these past couple of weeks I have been worse as I was decreasing my prednisolone every week waiting for the azathioprine to kick in. Every time i get below 20mg everything gets worse again. I am working on sorting my diet out in the hopes that will help but at the moment I'm so tired and eating way too much convenient food which probably doesn't help.
 
Thanks tuff. Normally I go before work and then that's it until lunchtime but these past couple of weeks I have been worse as I was decreasing my prednisolone every week waiting for the azathioprine to kick in. Every time i get below 20mg everything gets worse again. I am working on sorting my diet out in the hopes that will help but at the moment I'm so tired and eating way too much convenient food which probably doesn't help.
You might have to ask your doctor about bumping up your prednisolone back to what it was for the time being.
 
For 20 years I was able to get by at work by only eating small size meals. I cut out all my bread, pasta and fried foods and started consuming yogurt every morning before any solids. I also never snack at night and drink only an ensure after 6pm. Made a hell of a difference in getting by.

But most people with crohn's over time, will find little way's to tweak their lifestyle to get by. The worst for me was in the first 5 years because I refused to believe I needed to change anything about my life. I would go out with the guys, have a drink or two and go to a burger joint only to to be in so much stupid pain a few hours later. After many years of pain and stupidity, I started listening and making life changes.

But all the life changes we make will only go so far. Crohn's has a nasty way to sneaking up on you and biting you in the ass when your least expecting it.

Would have loved to have had this forum around when I got crohn's but unfortunately I only had a commodore 64.

Wonder how many will be googling commodore 64.

Take care, and I really wish you all the best.
 
For 20 years I was able to get by at work by only eating small size meals. I cut out all my bread, pasta and fried foods and started consuming yogurt every morning before any solids. I also never snack at night and drink only an ensure after 6pm. Made a hell of a difference in getting by.

But most people with crohn's over time, will find little way's to tweak their lifestyle to get by. The worst for me was in the first 5 years because I refused to believe I needed to change anything about my life. I would go out with the guys, have a drink or two and go to a burger joint only to to be in so much stupid pain a few hours later. After many years of pain and stupidity, I started listening and making life changes.

But all the life changes we make will only go so far. Crohn's has a nasty way to sneaking up on you and biting you in the ass when your least expecting it.

Would have loved to have had this forum around when I got crohn's but unfortunately I only had a commodore 64.

Wonder how many will be googling commodore 64.

Take care, and I really wish you all the best.
My nutritionist said on some days you can do all the right things and still have problems.
 
Yep you sure can. Why I said: " But all the life changes we make will only go so far. Crohn's has a nasty way to sneaking up on you and biting you in the ass when your least expecting it."
 
Ronroush7 thanks. I have increased my prednisolone back to 20mg for now and am trying to reduce 2 weekly instead, thing is my doctor really doesn't want me to stay on it long term but if it is the only thing working I don't see that I have much choice. Especially if they take me off the azathioprine. I don't rally want to jump straight to injections.

Crappy, thanks. My doctor doesn't seem to care much about diet so I'm glad I'm not the only one who thinks it makes a big difference. I already know certain foods make it worse but as you say crohns has a way of getting you even if you are doing all the right things.
 
Ronroush7 thanks. I have increased my prednisolone back to 20mg for now and am trying to reduce 2 weekly instead, thing is my doctor really doesn't want me to stay on it long term but if it is the only thing working I don't see that I have much choice. Especially if they take me off the azathioprine. I don't rally want to jump straight to injections.

Crappy, thanks. My doctor doesn't seem to care much about diet so I'm glad I'm not the only one who thinks it makes a big difference. I already know certain foods make it worse but as you say crohns has a way of getting you even if you are doing all the right things.
Have you consulted with your doctor about the prednisolone? Ask him about it?
 
I spoke to my ibd nurse who said i could go up with my dosage. I phone him every time things get worse before I change any of my medicine. He seems to agree with me that we should try the steroids for longer rather than going to humira. I was under the impression that prednisolone would be okay for 3-5 years but my consultant doctor at the hospital was already talking about humira if the azathioprine doesn't work.
 
I was just diagnosed a month ago, and diet changes have made a HUGE difference. I won't take drugs until they're the last resort.

For me, lactose was a big deal. Big improvements science I ditched that. Low residue helped, but I wasn't getting enough calories. Started FODMAP yesterday. We'll see how that works out
 
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