Here we go again

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Hi all

Long time crohns suffer, was lucky as had pretty much 20 years of remission )with the odd mini flare every now  & then). This last year has been horrific. Multiple flares, azathiaprine didn’t work as damaged my liver so steroids steroids & more steroids. 4 inpatient stays, then developed Cushing’s & diabetes, got put on humira & my endiocrinologist reduce my steroids (which I’ve been on 7 mths now) as steroids were causing me real problems. Well now down to 5mg, and everything has flared up again 😞 Doesn’t look like the Humira has worked as month 5 now & been really poorly with the crohns & ESR/CRP Have raised (which is ironic as they usually stay normal even if on a major flare) and add to that liver messing up again! Now I don’t know where to go from here. I’m a single Mum of two (2&11) & it’s almost xmas and really don’t wanna be stuck in bed all over xmas 😢 I HATE this disease.. 30 years of it now & it doesn’t get any better 😞

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7 Replies

  • Posted

    How long have you been on Humira for?

    How bad is the Diabetes?

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    • Posted

      I’ve been on Humira for 5 months & the diabetes isn’t too bad (type 2). They put me on metformin but that made my crohns worse so couldn’t deal with that. Awaiting to see what they say at endio app next wk. The Cushing’s is pretty bad, was hospitalised in September cos of that - caused my bp & heart rate to shoot up so now on heart medication also (which I swear is what’s causing me these constant headaches).  I’m just wondering if the Humira is doing exactly what the azathiaprine did by not helping the crohns yet damaging my liver. I have to see specialist in London to see how badly my liver has been damaged now cos of all the meds (not looking forward to that trip)! I’m just so over feeling so sick now. It’s effecting my eldest daughter- she’s alread going through her “tween”

      Years & having a Mum that looks like the honey monster is too much for her & now she doesn’t like being seen in public with me )and I don’t blame her as I very rarely go out anyway- but more physical reasons). It just seems to be rolling from one bad Illness into another 😞

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    • Posted

      Humira shouldn't damage your liver.

      AZA hopefully wont have done any permanent damage. The liver is one of the bodies best organs for its ability to heal.

      Its a shame Humira isn't controlling the CD. There are other biologics, which work in a different way, such as Vedolizumab.

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    • Posted

      Fingers crossed... I’ve been on cocodamol 20 years so that's not helped.  My previous gastro said that Humira can harm liver & makes me have routine labs to chk. My lft’s have been raised last two tests but not as bad as when on aza so 🤞🏻They go down again.. My joints are killing as well but I think I read somewhere Humira can cause that along with mouth sores (which also have). I know there’s lots of biologics out there I’m just inpatient & wanna get better for my kids (and Christmas lol) 

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  • Posted

    I just wanted to say that it is usually quite normal for things to flare as you reduce the steroids to come off them completely. I always find the last 5mgs a nightmare and just stop them, knowing that things will be tough for about a month. But it usually settles down again once your body has adjusted to coping without them. 

    If you’re desperate to get some kind of rest from the Crohn’s activity you could maybe enquire about doing a prescribed liquid diet.. it’ll give your bowel a rest and maybe help more than the steroids.  There are no side effects other than a bit of general madness from not being able to eat normal food for a while.......but it’s a good way to reset your body. 

    I’ve  had Crohn’s for 30 years too and am always astounded at how low if can get you..........I really hope it gives you a break soon. Don’t forget, those steroids really mess with your headspace, so don’t give yourself too much of a hard time.........I’m sure things will ease up soon. 

    Hannah

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    • Posted

      Thank you. They tried me on modulen but no way could I drink that 😤 I’m willing to have an ng tube as had that for years as a kid and can do it myself but apparently have to be hospitalised nowadays for health & safety reasons (which I think is nonsense but hey ho). I’m on fortisips on the days where I just can’t manage food but it’s not just tummy issues, my knees are giving up the ghost, my skins covered in bruises & sores, I’m exhausted all the time again and my mouth is really ulcerated so it’s a multitude of symptoms. Very difficult with a 2 year old & 11 year old (who suffers with mental health issues) on my own. I don’t have time to be sick lol.... xxx 

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    • Posted

      Oh bless you.    I'm so sorry.....you are having such a miserable time. I can't imagine how tough it must be with young children too. 

      My brother in law has feed line that he hooks up himself three times a week, but he was hospitalised first, then had to go in for three nights a week until eventually they arranged it to be done from home. I've only ever used the MODULEN IBD and found it quite palatable, but I know it's not for everyone. 

      Have you got any support to help you through? Sounds like maybe you need some respite care to help you get through this bit............I know Christmas is looming but on a scale of things, your health is far more important. 

      I really hope your symptoms ease soon. 

      Take care. 

      Hannah 

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