Hospital admission

[Kirsty2510]

I was admitted to hospital 2 days ago . I was in a new flare and then suffered terrible gut/bowel problems. I am now on IV anti biotics but CRP still rising and was 110 this morning. This is high for just an infection and wondered if this could be due to Lupus flare too ? Pain is horrible in abdo and joints. So upset as we thought we were getting somewhere with treatment for SLE. Does anyone have a similar experience ?

[Hidden]

i have crohns as well as SLE apparently its not unheard off. sorry to hear your in so much pain. hope they get your symptoms under control soon.

[Thaddeus]

Hello Kirsty

Raised CRP is very much a sign of a flare up. They will monitor the level as an indicator of you state of inflammation. You may also find them checking your ESR, or CPK as these are the other inflammatory markers. CPK if you suffer from muscular cramps or pain.

[Kirsty2510]

Hi everyone

CRP UP again at just under 200 ! CT scan shows inflammation has now caused rupture in bowel wall which thankfully was small, hopefully we can get me healed but now will need bowel resection . Feeling very nervous .......

[Hidden]

Hi Kirsty not surprised you feel so nervious are they doing the surgery keyhole?

its very frightening when your disease isnt under control.

are you on IV steroids?

hope you get better soon thinking of you

[Kirsty2510]

Hi

Tatty, not on IV steroids at present just oral. Thaddeus ESR raised. Also have blood and protein in urinalysis so looks like renal system perhaps struggling . I have now been transferred from Borders to Glasgow hospital. Thank you for your kind replies

[loopylady]

Hi Kirsty, keep strong, you're doing amazing. My experience of being hospitalised with extremely high temp was a puzzle in itself, at this time I had been living with SLE for approx. 7years but the docs had no idea what was wrong. I was in immense pain and drifting in and out of consciousness. My Rheumatologist came to visit me on the ward and he suggested to the general docs that it may be a ruptured appendix, on receiving a laparotomy this proved to be the case, a burst appendix resulting in peritonitis. A side-effect of prednisolone is that it can mask symptoms of what would be straight forward to diagnose.

Put your trust in the docs and stay strong,

LOLL xx

LOLL=Lots of Lupus love

[Kirsty2510]

Hi loopylady

Thanks for writing. Consultant here in Glasgow is excellent and one of the very best I completely trust him and felt so much better on transfer back . He has been my consultant for years but we moved to the Borders last year hence reason I was admitted there first as an emergency. My old Rheumatologist here is fantastic too and works well with colorectal surgeon so tonight feel more secure.

Have to just settle on IV antibiotics for the next few days and when I have had time to recuperate I have to come in and have this damaged portion of bowel removed as inflammation has struck a few times here.

Anyway you have probably fallen asleep now !

Sending you best wishes xxx

[MandaM]

Hi

Hope youre on the mend now?

Back in December i got a chronic infection in my kidney transplant and my CRP was 222! Didn't take long at all to come down to normal range with antibiotics and a few days in hospital. The illness does seem to have taken it out of me though and in January i am still a lil bit tired. Apparently to be expected but i do like to run around and get things done like i am Superwoman so i feel quite frustrated at the moment. Take your time to get over this bad spate, don't expect too much of yourself like i did and hopefully you'll be up and running real soon :0)

[Thaddeus]

We are all rooting for you.

[tiredmum]

My word,

you poor thing, really hope you are starting to feel a bit better now.

[Lulabelle]

Hope you start feeling much better very soon

[Kirsty2510]

Good Morning to all the kind people who have written to me

Day 10 and I am allowed home ! What a difference a surgeon makes ! I was originally admitted to a local hospital and was to be operated on but asked for transfer back to city hospital where my original surgeon and rheumatologist are (I only moved to Borders a year ago) together they decided to treat me with 3 different antibiotics , steroids etc nil by mouth to rest gut and complete rest. Well, the CT yesterday showed the perforation has healed.

My surgeon and rheumatologist feel that SLE will only attack somewhere else and unless surgery is absolutely indicated ( ie if I had not improved) it is to be avoided . My surgeon is hoping that controlling SLE better is the key so have review with both next week. Yes I may be here again, hopefully not, but thank goodness I have such a dedicated and skilled surgeon who is willing to work with my very knowledgeable rheumatologist. Happy person today !

[Dorrie in reply to Kirsty2510]

What a rough time you have had, hope all goes well for you now

[Lorelei]

Hi, Kirsty!

I am so, so happy for you that your body has healed and you will not need surgery! That is wonderful news! I have been praying for you ever since I first read your post.

Good luck with your continued recovery!

Lorelei

[Kirsty2510]

Hi all

Thanks for your replies. Sorry for the delay in writing but ended up in hospital again due to flare affecting abdomen again. I am home and recuperating but feel quite tired.

The biggest struggle I have is feeling really quite low just now. A sort of ' is this it ? Is this how life will be ? I miss feeling fit,happy and positive. I miss my horse, my career and my independence . I am sure this is normal but the reality of no cure, threats of flares , continual pain and absolute exhaustion has just hit home, I am not going to cure as in the normal course of a disease . Yes , I hope I can look forward to blue sky periods but feel it will always be a bit like a British summer with a grey cloud lurking somewhere and the occasional downpour !!!! This is so unlike me I am normally so positive even in the midst of the worst disasters . Must be tired :&

[Hidden]

hi kirsty wonderdered how you had been getting on sorry your having another flare its really upsetting when our mood drops too. give yourself time to ajust, it took about 18months to really get a handle on things for me. also sometimes it takes a while for them to get the treatment plan right to get you as well as they can.

get lots of sleep people forget sleep is good for healing brains and emotions too. you grieveing for the you you have lost, a part of what made you you has died even if only for the moment so you will be low depressed.

your not a failure its your body that has failed you

ive learned to take up more do-able hobbies still miss hiking / mountain climbing.

but have learned to take up sewing, quilt and handbag making. sewing is a great hobbie i do a little at a time and when im not well it stays put until i pick it up again. it distracts me and improves my mood.

now this year i think in sept im going to take up italian before a holiday.

also if your malnurrished re gut stuff thats going to has a huge knock on health wise especially energy and pain levels.

be kind to yourself let people love you dont give up yet i do hope and believe you will have better days again.

[Jennie73]

I also suffer with my bowels had the camera last week just waiting for the results gp told me it was all part of the conditions.

[Kirsty2510]

Hi everyone

Have kept my head low for a few weeks as have been unwell and quite low. Three admissions so far this year with a bowel perforation has resulted in my consultant stating I require surgery electively (out with a major flare) . I have been told surgery will be major and about 6 hours. Fair chance of stoma.

Trying to cut some meds in preparation,( steroids and HRT )

so sore and mood not best ! (poor husband !) Really exhausted .

Now dealing with insurance for salary and ESA which normally I would deal with but the task seems immense. Migraines and neuropathy returned. It's hitting home there is no cure only blue sky moments. Just caught in a bit of a storm at present ! Got myself an inspirational quote for wall ' don't wait for the storm to pass, learn to dance in the rain !' . I'm trying but the body is having a wee struggle to keep up

[willow24]

hi kirsty, im new to lupus but old to crohns having been diagnosed 20years ago at 18. this site has helped me so much over last few days and would like to give something back. so if you need any support or advice about crohns please ask

[Kirsty2510]

Thank you. I was lucky last year , was scheduled for colectomy and got a last minute reprieve as was doing much better. I know it is a risk as Lupus can affect my bowel but fingers crossed I keep well re bowel problems. Thank you for your offer of help it is much appreciated x