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Posted 5/26/2015 3:52 PM (GMT -5)
Hi,

I have just signed up to this website and would really appreciate any help or advice you can give.

I was diagnosed with colitis 25 years ago at the age of 10, after various different treatments I was lucky enough to have a long period of remission...17 years, I then gave up smoking and within 3 months had a flare up. The specialist has put me on the highest dose of asacol and azathioprine. I am however getting really bad joint pains especially in my hips, knees and wrists along with a constant feeling of exhaustion. I mentioned this to my specialist yesterday who has requested I have a colonoscopy as I've not had one done in quite a while.

What I really want to know is does anyone else have the achy tired feelibg with this medication? Im not having any typical symptoms of a flare up which is making me think it's the medication...or something else.

Any help/advice/opinion woild be great as this is all new to me
Posted 5/26/2015 4:01 PM (GMT -5)
Welcome, bonobo.

You might be interested in searching this forum for info on using nicotine patches to resolve flares - seems to work for former smokers, not so much anyone else.

You should know that joint pain affects about 25% of people with IBD. Most GIs say that joint pain correlates with active disease, so it is a good idea to get a scope.

I had joint pain that was much, much worse than my bowel symptoms. I went to a rheumatologist (highly recommended for anyone with joint pain & UC) who tested me for everything and then concluded that I had enteritis arthritis, which essentially means joint pain due to IBD. The good news is that this is not damaging to joints like rheumatoid arthritis.

The treatment devised by my rheumy and GI was to put me on steroids for a few months to get it all under control, and then switch my meds to include sulfazine. Sulfazine is an old arthritis med that happens to work really well for joint pain due to IBD.

I've been taking it for a few years now and my joint pain has not been a problem.

So, in essence, I would suspect your IBD over the meds as the source of your joint pain. I recommend seeing a rheumatologist. And I recommend sulfazine.

Again, welcome!
Posted 5/26/2015 4:44 PM (GMT -5)
The exhaustion may be the aza. I took 6mp for a while (similar to aza.) and terrible fatigue was a symptom. I quit it because it wasn't doing anything for my symptoms and it made me feel bad.

The joint pain could be your UC inflammation appearing in other places. I've found that anti-inflammatory supplements have helped my aches/pains, turmeric capsules with bio-perrine has been a help but it took a couple tries to find a good manufacturer of that. Many supplements made symptoms worse.
Posted 5/26/2015 4:49 PM (GMT -5)
in regards to your flare, are you bleeding a lot? I ask because that can cause iron deficiency and that will make you feel very exhausted. I'm very prone to it and it's horrible
Posted 5/27/2015 2:21 AM (GMT -5)
Hi,

Thank you all for your comments. I have considered going back to smoking or using patches, this is just my own personal opinion if I do that I will never ever give up as the thought of having to go through this again is too much so I need to get this under control without nicotine.

I am getting little to no blood at all, there is an urgency and slight abdominal pain but the joint pain and exhaustion definitely out weighs the flare up. The specialist took quite a lot of bloods on Monday and I should hopefully have the colonoscopy within 2 weeks (the use of the word 'hopefully' is for the results and knowing what this is as opposed to the procedure itself!!)

I will have a look for turmeric capsules, I am still managing to go to work but it is getting more and more difficult every day
Posted 5/27/2015 3:50 AM (GMT -5)
Sounds to me like you have low level inflamation that's continuing.  The scope might help clarify if your UC is active, but you might find it is not.  I've been in clinical remission for a while and also have bad joint pain.  Mine does look to be damaging my joints as well, and for some people with UC you can get other forms of arthritis other than enteric arthritis (the fun never stops with UC).  As far as I can tell, GIs and rheumatologists differ a lot in their opinions as to whether achy joints is a sign of poorly controlled UC or not.

I would recommend trying tumeric and other natural anti-inflamatories.  They works for some.  I think they help me, although they aren't a cure.

My next option is Humira, which is depressing given I have mild colitis that's in remission.

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