I’ve been feeling really rough since Sunday. Horrible abdominal pain etc etc. Thought it was food poisoning but it wasn’t. Finally took myself to the GP this afternoon. She sent me to the hospital. They suspect pancreatitis and/or gall bladders issues, but think it’s more likely pancreatitis. Oodles of vials of bloods were taken and I was allowed home to go back tomorrow for a scan and obviously the results of the blood tests.
And of course me being me starts searching for links between that and PsA of which it seems it’s likely. Feeling completely fed up presently and I truly don’t like these pain levels either.
One question though, my view is that Benepali (Enbrel) hasn’t being doing its stuff since August, So it effectively worked for only around 3 weeks. The sulfasalazine certainly abruptly stopped working in March. So do you think the fact that it feels pretty apparent to me that my inflammation levels haven’t been appropriately reducing for all this time would have any to do with now possibly having pancreatitis?
It sure could be, if autoimmune pancreatitis is what it is, I haven’t had the experience, but someone I know, who has Ps (with possible ‘mild’ PsA), has. Hers self-resolved, but they didn’t investigate it properly (assumed she was lying about how much she drank and it was caused by alcohol), but I imagine if it’s autoimmune then it should be treated with medication. I really feel for you, it can be very painful and make you feel at deaths door (she likened it to the time she had appendicitis and they sent her home telling her it was constipation, and it leaked and became gangrenous ).
Look after yourself
Well, I do like wine too, which obviously isn’t great and probably as many middle aged people do, drink too much of it.
But I’ve just come across a paper presented to the American College of Gastroenterology in July 2017 which linked anti-TNFa therapy to acute pancreatitis, humira to be precise, which was being taken for ulcerative colitis. Interesting stuff really if I wasn’t feeling so crap presently.
Now I have to stop drinking anything for the next 4 hours till the scan. I’m a fluid drinker especially in the morning so no water and the occasional coffee for the next 4 hours isn’t going to be fun. Wish me luck. I am though feeling a little better this morning, probably because I’m now being ‘seen’ and should get sorted.
I do wish you luck Poo! I have read that about Humira too, though I gather it’s very rare (but of course I had to learn the hard way that doesn’t exclude it ).
I hope whatever turns up, it is easily resolvable. Big hugs
Hang in there poo. I’d opt for gallbladder though a gallbladder issue can lead to pancreatitis. The fact you are taking time to work and be on the net is also some enidence. Pancreatitis ( unless it’s the chronic kind) is usually so painful, all one wants to to do or can do iscurl into a ball and scream for Mommy.
I’m familiar with the paper you mentioned. It was horribly done (IMO) another incident of association doesn’t equal causation. The incidence of pancreatitis with UC is very high to begin with.
Thanks @Jen75 and @tntlamb.
What an interesting experience I’ve had! You’ve got to love our NHS, really you do. Scan was ‘normal’. No idea what the blood tests said but obviously not of any concern. And obviously the pain I’m suffering from is not acute pancreatitis as I’m not curling into a ball and screaming for my Mum. And obviously my gallbladder is ok too since that was scanned too. But I’m still obviously suffering something and whilst it’s eased a little today, I’m not really happy to be wandering around with this level of gut/stomach pain along with everything else PsA is doing to me presently. Appetite has disappeared, I’m struggling to eat anything much since Sunday. I’ve eaten couple of pieces of toast per day and that’s it. I am drinking lots of water but I don’t fancy anything like a coffee or a fruit juice or anything similar. Yesterday I had a temperature and my blood pressure was too high. Today I’ve no temperature and my blood pressure is down but not enough. My normal blood pressure is the low side of normal.
So I asked the registrar who was dealing with me, so then what’s causing this? This man has a pretty poor grasp of English as it’s not his first language and he’s not yet fluent. He’s also got a large beer belly and did that beer belly waddle. Keep that vision in your head now.
So he said ‘you need to lose weight’ and that’s not wrong I do. So I said but what’s causing this pain? His reply was ‘perhaps it was a muscle strain from being overweight’? I don’t have a beer belly, neither do I waddle like he does. So I told him that comment was simply medically unprofessional and walked out the door. What actually bothered me the most was that this room was filled with patients some of whom were incredibly overweight, far more than me or him and they heard that! So I’ve made a complaint.
And I’m no further forward but at least feeling not as crap as yesterday and obviously given my complete lack of appetite presently, have probably lost a couple of pounds anyway! I’ve left a message for my GP to call me. But given the strain they’re under that will take more than a few days.
For some reason your experience reminds me of a hospital visit a few years back … a nurse sat with each of us in turn in the waiting room, taking a few details. She started with a little old lady, a veritable caricature of a little old lady, tiny, wizened and very old indeed, her replies were like a distant whisper. The first questions were pretty standard, but then the nurse got to: “and what sports do you play?” Not ‘exercise’, sports. The other patients started to titter … the old lady looked extra confused. The nurse bellowed: “Sport!! What do you do in the way of SPORTS?” The other patients disintegrated, some were doubled over, laughing helplessly. It was funny as hell but I couldn’t laugh.
Please note, I am not comparing you to that lady. Nor accusing you of not doing enough SPORTS. It’s just that sometimes these medical practitioners seem to leave their heads at home.
Has anyone mentioned diverticulitis as a possibility? Just that the symptoms sound familiar, as I’ve had it twice, not as excruciating as pancreatitis, can be kind of controlled by pain killers, nothing shows in a scan and ultimately needing big doses of antibiotics to get rid of it. Fibre helps (I take fybogel daily), but you need those antibiotics first.
Just a suggestion…
Initially it presented just too high up for diverticulitis and more on the wrong side hence them thinking pancreatitis and gallbladder issues. My thoughts are now that it is. I’ve suffered it once before and my poor Mum suffered it awfully and persistently. And the spinal MRI I had done last year gave an incidental report that my bowel was developing nicely into me having these issues. I so love my genes.
Hoping the GP calls me today as I’m still not right although doing better. But at least I’m losing weight…
My only connection - I was on Humira for over five years and then developed antibodies. During this time I was on Sulfasalazine (and still am - 1500 twice a day). I was recently given an EUS procedure because of pain I’ve had in my upper right quad since 2008 and they found pancreatitis (honeycombing, inflammation). From what they can tell, it has been there for a while. I don’t know if this helps you.
Thankfully Caradavin, mine didn’t turn out to be pancreatitis but more likely diverticulitis. Still waiting for further investigations for that but it’s more than likely that. Did your settle down?