Hi there everyone,joined this forum two years ago but nvr came back on until now.Just wondering really how everyone copes with living with this horrible disease??Was workin when i joined this but have had to leave my job after less than two years because after been in for a few hours into my shift i felt as though someone was hanging from the my bowel and was so tired.The exhaustion has got even worse plus really sore joints anyone else the same??On humira for over 3 years,dont seem to be working as good as it did at the start though,plus they are talking about taking me off it because they dont know a great deal about the side effects.Last meds they have to offer then it is surgey which scares the life out of me,mostly because they cant reverse it.Spend most of my days doing nothing,well except going back to bed for a while till it is time to get my kids from school.Want my life back so badly.x

Tracy, I'm a bit like you in that I am also on humira, which as far as I can tell is pretty much the end of the line as far as drugs are concerned, however, I've also had two lots of surgery in the last two years, I have perianal disease and have had an abcess which took a year and three ops to put right.  right now, I've had to come home from work yet again, and my pay is being docked each time, quite frankly I've had enough of it, right now I am also so sick of this life, also feeling rubbish, hurting, tired, no social life, and at this rate no job, no money aaaarrrrgggghhhh. I don't even feel better for a rate at the moment.

Aww Julie that is a lot u have went through recently,so unfair!!I had to quit my job bcos like yourself i was either phoning in or having 2 go home,luckily though i applied for DLA for my 3rd time and got awarded so leaving work was an easy descision but now im sat at home while the kids are at school bored out of my mind but yet dont have the energy to do anything,it really is a nitemare.Wish they would find a cure and soon.x

Meant 2 ask u Julie,wot about joint pain do u suffer from that aswell?x

Yeh I know where your coming from!! I hate this dam disease!! Sore all the time, at the toilet all the time, feel crap all the time, sore joints all the time, tired all the time the list goes on......!! Aaaarrrggghh!!!

Rant over

Neil

I'm not so sure it's joint pain, but my hands and knees get stiff, I'm just beginning to get an idea that when it happens then I've noticed I go down hill

Yeah Neil sometimes i feel all i ever do is rant on and on and i bore myself but it's really hard not 2 moan.Feel i also bore everyone else so when people ask how i am i say im fine then they cant understand when i say no to doing things or going places.Another thing i forgot to mention cos there is that many things lol,mouth ulcers!!!!!!!!!!!!!OUCH!!!!.Joint pain only been over the last two years,had mri scan,regular blood test for arthritis but nothing showing up,they say the humira could be masking it however bcos that is wot they use for arthritis patients,so only way to tell is to take me off my drug.

What can I say that hasn't already been said??!! Symptoms are just too many to mention!
Tracey, I was diagnosed with Ankylosing Spondylitis just after I was diagnosed with Crohns, it could well be that the Humira is masking the arthritis, I think Humira is also licensed for Rheumatoid Arthritis. Ive been diagnosed now for 15 yrs, and ive worked on and off since then, im now 34.  The longest i was off was 5yrs.  Got Incapacity Benefit very easily but DLA was a nightmare , got refused for not being disabled enough!! Could barely walk, was living in the toilet and was so exhausted that my day revolved around bed and bathroom!! How much more disabled do you need to be! Am now waiting to hear if I can get Remicade but was told at my last gastro appointment that the budget doesn't look good.  Its just so frustrating would be lovely to live a normal life just for a day. x

What's normal, I've decided there is no such word as normal!  Fi1977 may be right you could get arthritis because your on the Humira, it has a multitude of side effects and more so I believe if you have been on it for a while.  Unfortunately as we use these med's year on year, our bodies become use to it and then become immune to the benefits that it is suppose to be giving us.  I was told after the Humira was unsuccessful that they would try the infliximab (infusions).  Still waiting to hear about those as funding has been cut again and I'm stuck on the Aza which is not much cop....... I also have Ankylosing Spondylitis, Iritis (not confirmed), Secondary Arthritis, Fibromyalgia and Depression with a bit of OCD thrown in for good measure......

I always wanted to be different and now I truly am....... lol

Suppose there aint much i can do,even if it is masking athritis they say im already on the drug they would give me anyway,gr8 answer eh?So basically jus need 2 learn 2 live with it like everything else.I was on inflixamab for a good few years and was really good but again like everything else it started 2 lose effect.Just know something aint right with my joints and when they say nothing has shown up it makes u think they think ur talking rubbish or something.x

Hi Tracey if they are not taking you seriously about the joint pain see if you can be blood tested for HLAB27 this is one of the things that show up in your bloods for the Ankylosing Spondylitis (this condition is linked to Crohn's as it is also an auto immune disease).  The only trouble is that with this condition, is it does take along time to be seen, that is why it takes so long to get diagnosed, it is only when the fusion starts to occur can it show up in x-rays and scans.  That is why it is important to do the HLAB27 test which will confirm it.......  They do use alot of the same drugs but don't be disheartened there are other alternatives out there......  Our GI don't always consult with our Rheumy's so there is still an avenue to venture.  Also check out Lupus, don't want to scare you but that is quite common on the TNF treatments.....

I'm on Aza and suffer with firbromalgia, I think this has made it flare up you might want to have a look at these things......  I believe one of the side effects to Aza is mialga.

sending well wishes
Katherine x

Dont really know much about lupus,went on the website there and reading the symptoms 3 jump out right away that i have so worth mentioning 2 them.Got hospital 2mro for my injection so maybe say to my nurse.Just seen ur recent post Katherine there is me moaning when clearly u are having a really awful time,makes u realise there is always worse off than yourself.Hope things start looking up for you.xx

I thought i was the only one fed up with life, but looks like we're all on the same boat! All there is to life right now is, bed, baths, food, painkillers, toilet, back to bed, more pain, toilet again, some crying, bed and the cycle repeats!

I also bore myself with my moaning and feel like no-one understands, so i'll lie and say im doing fine, but you would think your friends would click on that they haven't seen you in months but yet your 'fine'.

And what is the deal with the constant tiredness? I feel as if all i do is sleep, and everyone just thinks your lazy.

I truly believe that unless you too are suffering from this horrible illness then you will never fully understand what a nightmare it is no matter how much they say they do.

But hey, at least some of you seem to have kids to stay positive for, i on the other hand have been told i can't have any just another wonderful blow to living in this pointless existence.

Yeah Mandax defo all seem to be on the same boat.As for the whole fatigue nonsense,they really need 2 come up with something 2 help with that,when ur so exhausted everything seems even worse.Nobody has really commented on weither they suffer from mouth ulcers,anyone????and wot do u use???Defo have my kids 2 keep my spirits up for,but stugggle sometimes 2 keep that smile on.I know people moan about not havin time 2 do housework,shopping having a social life etc because they are so busy at work but i long 2 have tht craziness back in my life,beats sitting about with no energy 2 even make a bed.x

Hi Tracey thanks for the response, I was told with Crohn's you can get mouth ulcers as Crohn's can effect you from your mouth to your rectum.  The other thing is it could be acid reflux that is common to with Crohn's (I get mouth ulcers and am on Omeprazole 40mg) The other thing it could be is a side effect of the med's.  Have a read up on it.... and I hope your feeling better.....

Katherine x