One thing after another

A few weeks ago I had my biggest flare yet ( sle ) finally got well enough to return to work, less than a week later got the most horrific abdominal pains...the pain put me doubled up on my bedroom floor with my partner feeling rather scared. The pain wouldn't ease so called the ambulance, to cut a long story short I'm now home diagnosed will gall stones and need my gall bladder out... Which brings me to my concern... Although it's a small operation will it kick off a flare? In hospital they weren't aware off how lupus can affect someone and they gave me minimal meds refused to give me sleeping tablets...I didn't sleep for two nights/days and was in agony... That said when I got home I took my prescription meds and slept for 12 hours! How do I make sure I get the meds I need during any future stays in hospital?

As it is with the pain from the gall stones and the break in my usual meds has sent me backwards and I'm back off work again ( being self employed this isn't good for me at all)

Feeling quite vulnerable and worried...any ideas/ advice welcome X

6 Replies

  • sorry to hear that you have been in pain, firstly try to avoid red meat, secondly make sure that the anaesthetist is aware that you have been diagnosed with SLE as some anaesthetics are not suitable for us, thirdly, bring your own meds into the hospital as proof positive that you are on the medication, and if needed use your own, but be sure to let the staff know that you are taking your usual meds. Good luck x

  • Hi Gill

    So sorry to read your having a tough time. Do you take steroids for your Lupus?. I've been advised to double my usual dose on the day of any procedure to minimise any problems and then next day go back to usual dose. It's worked well, your hospital doctors should know to do this for anyone on steroids. Good luck for the op. A lot can be done via keyhole surgery which is less invasive so I hope you will have it this way too?.X

  • Hi sorry to hear of your bad luck. I had my gall bladder out a few years ago now and it didn't induce a flare. Hope it's the same for you. It will take time for your body to recover from the trauma and as you say for the meds you usually to stabilise again. Give yourself lots of R n R and TLC. Isn't the pain from gall stones horrendous.

  • Any stress on the body, emotional or physical can trigger a flare. Surgery is both emotional AND physical. Most medical personnel do not understand lupus. Many are afraid because of their ignorance. What you need to do is engage your rheumatologist whenever you have to work with other medical professionals. Your doctors are not going to seek each other out to cooperate. YOU have to make that happen. This includes sometimes carrying records from one doctor to another. If you are hospitalized for something else, it is perfectly fine to call your rheumatologist from the hospital. If you are having a had time getting a response, have someone send him or her a fax in which you clearly and concisely describe your situation and what you need to have happen.

  • Hi Gill so sorry to see you have been having a tough time lately, I spend a lot of time in hospital and always take my own meds with me and my pain relief patches as many hospitals either can't get them or won't prescribe them because they are too expensive! (Disgusting isn't it?) I am generally allowed to self medicate except for the morphine which gets kept in the controlled drugs cupboard on the ward but I always make sure I get it back to take home. I have had lupus for twenty years almost and have learnt that this is the best way to manage my meds and the lupus and to stop inducing a flare by getting stressed over not getting what I need when I need it. My daughter lives with me as my carer and we keep an over night bag packed ready for if I have to go to hospital and she knows which meds to get to put in the bag and I have a list in my bag which I keep up to date so we can make sure I have what I need while I wait for an ambulance or my son-in-law to get ready to take me.

    I had to give up work as I have other health issues going on as well as the lupus but I now do volunteering in a hospital which has made a huge difference to the quality if my life. I find it very rewarding and it gives me a sense of purpose and being a volunteer if I am unable to come in at anytime I just let the hospital know and when I am better I do what I can I can't get the sack as I am not paid staff and so don't need to worry about is my job secure as they are grateful for any time that all the volunteers put in. When I feel good I put in extra hours.

    As for your problems with abdominal pains etc. I have been hospitalised many times with abdominal pains and various gastric problems and decided to look into research into lupus and gastric problems. In America there is a big study going on with people with lupus going gluten free and I am trying a reduced gluten diet myself but NOT completely gluten free as recommended by my rheumy due to the higher sugars in gluten free foods she said that just have gluten free bread,cereals, cakes and biscuits, which I have done and it has made a huge impact on the pain that I used to get. In America they are even recording people going into remission which at the end of the day is everyone's ultimate goal. ;-)

    I do hope that your hospital stay is not too traumatic and that the staff treating you will be more sympathetic to your case than the last ones you encountered. All the best for your recovery and I hope that you don't experience too much discomfort.

    Take care and good luck

    Madmagz x

  • Hi, mum has just been in hospital and as long as her medication was in original boxes with dosage on the nurses gave her them, especially her steroids. I also had a printout from chemist stating all her meds. Good luck and hope the operation goes well

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