Well I am now in hospital on a drip getting strong antibiotics for a perforated bowel.My Dr finally got blood tests done and was very alarmed by my results .Then when the ct scan was done the radiology Dr rang and said get to the hospital emergency immediately...Very alarming for me. It appears I have an abscess caused through perforation probably due to all the pressure I had happening down there.The Renal Specialist has said that being on Prednisolone would have affected my immune system so I was not able to fight it off. Here I was thinking I had a bad case of IBS.
Another ghastly health issue to be resolved just when I thought I was doing well .life sends us some curly ones.At least I am still here and I think now on the mend.
I wonder if my pred should be increased..My Crp is over 100 That's the inflammation marker . .
I'm on 5mg I do have slight chest pain probably anxiety induced but I don't feel any flare of T A.
And I certainly don't want anything...
Hope everyone else is doing OK.
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Raewynne
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I am sorry to hear that - you have been lucky to get away with it. It is thought the problem in patients in pred is they don't present as acutely as someone who isn't on pred and doctors miss it.
The CRP is probably high because of the perforation and resultant infection and it will fall as the antibiotics take effect. No need to increase the pred unless they decide to in accordance with Sick Day Rules but the hospital doctors would decide that - I assume they are aware you are a very long term steroid patient and almost certainly have secondary adrenal insufficiency.
Thanks.Yes I am lucky.What seems surprising is that the Dr got my cortisol levels checked and he's concerned because he thinks they are too high.I wonder what is going on.I think they are concerned there may be a tumour somewhere.I hope not. Why would they go high.
Sometimes small tumours form on the adrenals or the pituitary gland and produce too much of the substance they are supposed to make and that leads to too much cortisol in the body. They are usually benign - not cancer - but just produce too much of whatever, I'm sure they will sort out what is causing them - there will be a few scans I imagine! Do keep us informed,
Fatigue can also be a symptom of high cortisol and some of the other symptoms you might have had may have been just put down to being on pred at all. It's very complex so the doctors are the best to ask.
unlike the Dr I saw in A&E thinking I had sepsis. He said you’ll have to come off prednisolone because of the infection. A drop of 15 to zero. (I had been on steroids for 6 months, so the adrenals were on holiday.) It was the month of June in 2020, so he was probably straight out of GCSE biology classes.
Gosh! I was convinced I had/have this the pain is horrible, I have never experienced the like. All investigations show nothing that explains the pain and the necessity for a bland diet, diahorrea and constipation. A capsule camera down my throat in May. Please let us know what happens. I am wondering if it is Adrenals or even GI Vasculitis for which I am on a waiting list for an MRI scan. It is very lowering
Have you been checked for SIBO? Small intestinal bacterial overgrowth? Only saying this because I have been having problems similar to yours and it can be caused by biologics. I am waiting for a test - struggling to eat anything at the moment without causing extreme pain. It’s a breath test, so at least non invasive.
I had a CT scan which showed Crohns in remission, so not that.
Thank you for this. I would honestly try anything, this condition is really life limiting. I hope my GP will listen. It did coincide with Tocilizumab which I stopped but the pain and bowel trouble carried on.
I am having exactly the same issue as you - 18 months now - as you say - life limiting - and it’s all wearing a bit thin now! Mine all started too with the biologic. Sorted Crohns nicely, but this is all far worse than my original problems.
If you come up with any other ideas, do let me know!
One thing I did was pay an absolute fortune for a comprehensive private stool test. It was really enlightening and gave me a few clues as to what could be wrong.
Sorry to hear you are unwell. Sometimes when I have much smaller problems it puts it all into perspective. Very best wishes for your further investigations. 💐
It’s amazing you’re managing to sound so positive despite all the mishaps and curved balls. Wishing you all the best and hope you make a speedy recovery. Stay positive 😊
Thankyou everyone for your kind words and support.Ive been on a drip in hospital constantly for 2 days with powerful antibiotics.On clear fluids.I don't feel so sick .Still some pain but I generally feel better.IM seeing a bowel surgeon tomorrow and I guess I will find out what happens next.
Your problems sound similar to mine.Started with IBS and diverticulitis .I.m stuck on 5mg pred too. Who knows what's around the corner for us..My scans are still not too good unfortunately. IT Looks like I'm going to have the abscess drained.
Good luck! I was fortunate to avoid anything other than antibiotics.
My surgeon really did push just going ahead and getting a resection. Ever since that scare, I've been really good about getting plenty of fiber, and have managed to keep her at bay.
In general, I'm surprised this sort of anything isn't mentioned more as a possible result of IBS-C. If I'd known beforehand, I would've been a lot better about the fibre.
Hi everyone Well My surgeon did another scan and said the abscess was growing bigger so I went in for full colostomy the next day.It had been agony.The staff were very good with pain relief till it settled down but now I have a stoma which requires a bag for all my bowel movements for the next 6 months at least.Needless to say I am in shock and feel very upset about it all.I had just thought I was on the road to recovery from temporal artertis.My life has had a big change.Yes I'm lucky to be alive but I would not wish this on anyone.It is very demoralising.
You will learn to cope with the stoma well and it will be fine - but do listen to the experts telling you what you can and can't eat! In the early days they can be a bit fussy - no seeds/pips or skin to start with.
You poor thing - you have been through the wringer and some! Its an enormous shock and will take some time for you to accept and adapt. You will get there. Be kind to yourself. My neighbour has a stoma (for a different reason - bowel cancer) He’s had it years now and you would never know. He goes camping, walking, holidays etc. I hope you start to feel better about it soon but it will take time. Sending hugs x
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