Crohns / ulcerative colitis sufferers

I've been to see the consultant today for a review and after the positive improvement from Prednisolone, well other then the annoying side effects. I was then placed back on Pentasa for maintenance and it just had no effect this time, which isn't great.

So today after a long discussion with Professor, I've had to had a blood test first but then I am being placed on Azathioprine. I am waiting for the result from the tests before starting these drugs. I'll be honest, I am really not keen on taking these but it seemed the best out the options discussed to move forward.
 
Azathioprine is working well for me. Ramping up on them was awful, felt terrible but your body gets used to it and all had been good for a while.
 
well Pentasa is a bit naff tbh... at least my consultant refereed to it as a 'useless drug'

azathioprine is quite commonly used as is mercaptopurine
 
dowie said:
well Pentasa is a bit naff tbh... at least my consultant refereed to it as a 'useless drug'

azathioprine is quite commonly used as is mercaptopurine
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The other option I had was Methotrexate and then if I need biologics could be added.

However, the last option I was given was to have key hole on the effected area which I am totally against. As I am having a hard accepting being prescribed
azathioprine. :(
 
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Maccapacca said:
Azathioprine is working well for me. Ramping up on them was awful, felt terrible but your body gets used to it and all had been good for a while.
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I'm waiting on the results of my tests which will determine my dose level but I was advised on most of the side effects and dose wise it would be double my body weight in Mg.
 
Aza works well and you also have regular blood tests to keep an eye on everything. It's worth giving it a go and seeing how you get on with it.
 
Literally just noticed this thread. :) been going to the docs on and off since February. (Haven't been to the loo "normally" since) Stomach / gut cramps on and off pretty much every day. Napping when I get home because I'm so tired. Which then ruins my nights sleep. Rapid weight loss (10kg in three months. Edit. And I eat shed loads!) got a colonoscopy booked for the 10th November. The wait is feeling like forever. Most of my cramps are just below the right ribcage. (Had my gallbladder removed already so it's not that ) ugh :( feeling pretty miserable/depressed all the time at the moment.

Seems to flair up more after a high fat meal. Alcohol doesn't seem to affect it. I had bloods and stools tested. All came back okay. I asked the doctor of the likelihood of it being something sinister, he said probably not, probably mild UC. :/
 
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RSR said:
However, the last option I was given was to have key hole on the effected area which I am totally against. As I am having a hard accepting being prescribed
azathioprine. :(
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well I don't think it will be as bad as prednisolone
 
Well laid in bed as I type this after only nine days or so at home. Being on a reducing dose of pred I had another flare up even after two doses of infleximab.
My consultant is steering me towards surgery but I'm resisting, trying to avoid having everything removed and a stoma.
Added azathiopine in the hope it will work.
Silver lining is the nurses are great!
 
Azathioprine was always great for me, only started to fail after about 9 years, so good luck!

I have my second dose of infliximab today. I'm not nervous, but I hardly slept last night.
 
Qel said:
From memory there is pretty much every side effect you could think of listed for it. Some of that is obviously the medical companies just covering themselves but most of it is sadly real, truly horrible stuff to take for any length of time.
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Thankfully I've been on it for a number of years and I only get the moon face and hunger. I've always had high anxiety so I'm on something else for that. Just make sure you take calcium to conpensate
 
Tauren said:
Literally just noticed this thread. :) been going to the docs on and off since February. (Haven't been to the loo "normally" since) Stomach / gut cramps on and off pretty much every day. Napping when I get home because I'm so tired. Which then ruins my nights sleep. Rapid weight loss (10kg in three months. Edit. And I eat shed loads!) got a colonoscopy booked for the 10th November. The wait is feeling like forever. Most of my cramps are just below the right ribcage. (Had my gallbladder removed already so it's not that ) ugh :( feeling pretty miserable/depressed all the time at the moment.

Seems to flair up more after a high fat meal. Alcohol doesn't seem to affect it. I had bloods and stools tested. All came back okay. I asked the doctor of the likelihood of it being something sinister, he said probably not, probably mild UC. :/
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Your symptoms are very similar to mine. Ask your doctor about gastric dumping syndrome.
Basically because you don't have your gallbladder to store bile, when you have a high fat meal there isn't the injection of bile your stomach needs to help break it down. As a result your digestive system basically goes in to panic mode. You'll get cramps and...if you're anything like me a high heart rate, sweating oh and immediate evacuation.

Things I've found to help massively are not drinking for a little bit before a meal, during or for about half an hour afterwards. Puts much less stress on your stomach. Honestly...it was a revelation. Also cutting down on portion size but eating more often.

Because I'm now not firing everything out the back door undigested i have so much more energy. I'm also much happier.

Also...I take no medication. It's just not needed any more.
 
At my last nights appointment 7.15pm seems late but cool that the NHS are doing appointments that late . I was told that they will start to reduce my azathioprine down if I continue at the rate I have. I'm pleased but at the same time wonder have we had any success stories from anyone here coming off the drug?

I'm please that I've made real progress and got what seems to be everything under control (fingers crossed) but concerned ill come off or reduced drugs and have issues.

Personally I hate having to take the tablets so would love to be drug free if possible in the near future.
 
Thanks for your tips, I'll give it a go ! (I get cramps, heart rate goes up and I also get the sweats/fever ish like) I've already started to cut down portion sizes as of late, mainly because eating a lot makes life hell :s The doctors thought I was just being OCD/hypochondriac at first. If I wasn't persistent to get more tests done they would have sent me on my merry way again. :/

Seriously if anyone is ever in any doubt about any digestive problems. Be persistent. Or they just shrug it off as gastroenteritis
 
I got told I had IBS a whole bunch of times, even when I finally had my gallbladder removed they didn't suspect anything else... instead put all the abdominal pain down to that. (Only reason I had that was because a junior doctor agreed to refer me, the regular GPs were useless).
 
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