Diagnosis of Sigmoid volvulus 3 weeks ago and an emergency operation via colon righted it temporarily.

[Helag]

I am recovering slowly from the shock of the above diagnosis. The surgeon said he will have to do a major abdominal operation (which he is reluctant to do whilst I am on Prednisolone, I was on 6 mg 3 weeks ago but now on 5mg) as healing and infection could be post operative problems. So I saw my Rheumatologist and she said I was doing well and I could try reducing every 3 weeks ( by 5gm 4 gm alternate days and so on). So the operation is needed as soon as possible but I need to reduce my steroids as soon as possible, without causing a flare up, so the operation will then have a better prognosis. Abdominal operations are more dangerous than say joint replacements as the gastro intestinal tract is full of bacteria etc. Thus I am between the devil and the deep blue sea! If anyone has the time to give me advise or say if anyone has had an abdominal operation whilst on prednisolone for PMR , I would be more than grateful. I was a Physio and was heathy until PMR and now this.

[DorsetLady PMRGCAuk volunteer]

No experience of abdominal surgery, either on or off Pred, so cannot help, but sending my best wishes for a successful outcome. 🌸

[Helag in reply to DorsetLady]

Thanks for your good wishes.

[SheffieldJane]

what a shock! All you can do is calmly reduce your Prednisalone. I imagine that antibiotics will be given as well. You must have been suffering terribly. Wishing you a completely successful operation. 💞

[Helag in reply to SheffieldJane]

Yes I am trying to stay calm, cool and collected as I am in no physical pain now; more mental turmoil. We were meant to start caring for my 1 year old grandson 1 day a week just as it happened. We are starting next week and my daughter will ensure he has no illness with temperature the day before to prevent me catching anything too bad. Thanks for your good wishes.

[PMRpro Ambassador]

It does seem to depend on the surgeon and the urgency of the procedure - if the situation is life-threatening they have to operate on patients on pred. To be honest, while I do understand the risks, if they get you to zero pred quickly they will have to provide steroid cover in theatre and post-op as your adrenal function isn't going to be reliable so where is the balance?

All the best.

[Helag in reply to PMRpro]

Thanks for your reply and wishes. Do you think adrenal insufficiency always happens even if I have only been on steroids since April last year?

[PMRpro Ambassador in reply to Helag]

That is quite long enough - the start in everybody is because pred suppresses the production of cortisol, the body's natural corticosteroid which is essential to life. The body knows there is plenty present and knows procing more is bad for it. Over time the adrenal function remains suppressed and then it takes some time for the whole HPA axis to get back into gear again (hypothalamus, pituitary, adrenals and a set of hormones). The adrenals themselves may well be able to produce the cortisol but whether it is reliable or not is another matter.

[SnazzyD]

Sorry you’ve got this enormous worry.

What I don’t get is that if your fast reduction leaves you adrenally insufficient, they will have to give you steroids. Not only for the op but afterwards as well. Perhaps bring this up to make sure at the very least this will be thought of. Usually the anaesthetist deals with preventing adrenal crisis. You’ll be awash with antibiotics also.

My sister had to have a major bowel op while on steroids to try to control her inflammation in the gut. However, no matter what anyone thinks it’s up to the surgeon.

[Helag in reply to SnazzyD]

Thanks for your reply and it gives me some positivity that your sister was fine with her abdominal operation whilst on steroids.

[Dawk1]

I had major abdominal surgery,liver resection and gallbladder removed after they found a tumour on my liver. I was on 10mg of pred at the time and there was no mention of stopping or reducing before op,in fact because they were waiting for covid test result on morning of op and results were taking ages they let me take my pred. I was absolutely fine,no post op problems and healed very well. Ironically it was due to a PET scan to diagnose PMR that they found the tumour,which otherwise would probally not been caught before it was to late,therfore PMR saved my life.I wish you well and a speedy recovery.

[Helag in reply to Dawk1]

Thanks for your reply. I am so glad for you that you major abdominal operation went well, I hope you have recovered fully. You have also given me hope and positivity so thank you so much.

[Moness]

sorry to hear all that Helag, it’sa worrying prospect. If it’s any comfort I had bowel surgery in December and I was fine. However, I had managed to get down to 1 mg of pred by then but was still concerned about major surgery. I had robotic keyhole surgery which made the recovery much less horrible and you heal quicker. 12 weeks on now and I’m completely back to normal. I was very cautious after the surgery and didn’t do much for 6 weeks, that’s really important. I came off pred 4 weeks ago so it’s fingers crossed now. I hope they are able to operate soon and wish you all the best

[Helag in reply to Moness]

Thank you your reply it is a great comfort to me and I am so please that you are now completely back to normal. I believe I will have to have a large incision and then a stoma and colostomy bag but you have given me hope indeed that all may be well. Thanks so much for your reply.

[Artnmusiclover]

Sending healing and best wishes...I am having intestinal investigations and this is my fear too...its also a worry as you say coming into contact with infection prior to any treatment (I've had my Endoscopy cancelled today due to swollen glands 🙄) I do hope all goes well and you're in good hands on here 💐

[Helag in reply to Artnmusiclover]

I just looked at your history and you have had a difficult time following your PMR diagnosis. My sympathy and best wishes for a better future for you in your return to health. I hope your investigations go well . I try to evade infection by ensuring I go out whenever it is sunny with my huge sunhat and sunglasses and just sit with one layer of clothes on so I can absorb the infared radiation which is said to help the immune system and it makes me lovely and warm😎 ( and only 20 mins of UV on arms and face for vitamin D). I also do 10 to 20 minutes of meditation a day and it just helps me relax and boosts my energy some. Thanks for taking your time to reply all positive wishes are a help to me.

[Artnmusiclover in reply to Helag]

Thank you Helag, yes it seems they do a test and find something else ...like you I meditate but i need to heed your wise words regarding infrared radiation...with spring around the corner I'm sure the only way is up ....best wishes and positivity in abundance for you 😊