Surgery Risks?

[RMC17]

Hi everyone. Just joined this site yesterday after a recent UCTD diagnosis. Last year, before my diagnosis, I was referred for gallbladder removal. This week, I received a telephone consultation appointment for May. I will ask any relevant questions during the consultation but was wondering meantime if having an autoimmune disease causes surgical risks or complications? I appreciate all the messages I've received on my other post and any on this post would also be greatly appreciated. I promise, I won't bombard the site with endless questions! It's just this one has been on my mind and there's not a lot of relevant information on the internet. Best wishes. x

[LottieLou96]

Heya there 😌

In part, some of your symptoms may indicate some of the risks involved.

For example : a low WBC, or complements etc, or immunosuppression if your on any meds give the increased risk of infection. Or if you don't heal well, again it might just cause a longer healing period. Increased risk of blood clots following surgery, for those with APS need to be more careful. Etc

Really is very dependent person from person. May be useful to speak to your surgeon or rheumi about it if you have concerns

Wishing you all the best,

Lottie

[RMC17 in reply to LottieLou96]

Thank you Lottie, appreciated. Will bring this up at my next consultation(s). Hopefully the hospital departments liaise with each other! Best wishes. x

[RosieA]

Honestly, don't worry about bombardment of questions. We all ask a lot at the beginning, it is perfectly natural, especially as you are meeting people with the same condition. Fire away I say. x

[RMC17 in reply to RosieA]

Much appreciated! So much going on in my mind but beginning to settle now. Best wishes. x

[marypw]

I have lupus (admittedly so called 'mild') and I had my gall bladder out last July with no problems and I've also had 2 hip replacements without AI issues.Obviously you'll need to go through your medications with them, plus any known allergies or drug side effects that you've experienced. My big problems are that I'm allergic to most antibiotics and morphine makes me really sick, so pain relief can be tricky.

I'm sure you'll feel much better without your gall bladder!

[RMC17 in reply to marypw]

Thank you marypw. That's very reassuring. My UTCD is 'mild' and the only medication I'm on for it is Hydroxychloroquine. Probably just my thoughts going into overdrive but was worried about the effect my immune system might have on my body after surgery. Will be sure to discuss this at my consultation. Best wishes. x

[KayHimm]

The surgeon will definitely be informed of your diagnosis. Depending on how your illness affects you, they will take certain precautions.

Ask all the questions you want! Very important. The two doctors will talk if need be but a lot can learned by listening to you and reviewing your chart.

Surgeons are trained to handle patients with all sorts of medical issues. Have a feeling you will be fine. I have UCTD and have never had a problem from surgeries.

Stay in touch.

K

[KayHimm]

A lot of people will taking your history. Be prepared for many confused faces when you say UCTD. It seems to only be a term rheumatologists know, though that may be changing. 😜

[RMC17 in reply to KayHimm]

Thanks KayHimm. Taken some time to get my head around this condition but I'm getting there. This site really has helped in such a short space of time. Any input is greatly appreciated. Best wishes. x

[svfarmer]

Welcome to the group - please don’t be afraid to ask more questions as we are a very friendly forum x

[RMC17 in reply to svfarmer]

Hi svfarmer. That's my experience here - everyone has been so friendly and helpful. No doubt I'll have many questions and hopefully one day I'll be able to contribute positively too. Thank you and best wishes. x

[DJK99]

Hello - I know it's frightening wondering how your body will react etc... so sorry you are facing this, but hope the outcome will be a much improved quality of life/reduction in pain.

I can say I've had many ops in the last 5yrs and I do take a long time to heal, with infections always and, very importantly, allergic to morphine (ie the oramorph or oxycodone they chuck down you for the pain). I would be very careful with these - if you start being sick it shows you are allergic to it. At your pre op maybe mention if you know you are always sick with morphine and tell them to give you something else! I only have fentanyl in the anaesthetic also with increased antibiotics due to my infection risk. And afterwards I have dehydrocodeine and paracetamol only until the pain is no longer an issue day to day. The former, every 4 hours really kept the pain down as much as it could (along with 1g of paracetamol every 4hrs too) when I had bilateral major foot surgery. You have to keep the meds up in a timely manner so I used my alarm on my phone and a piece of paper to note times and doses I'd had as it can make you a bit woozy after ops and with all the meds eh?! I didn't need prompting for the pain killers as my bod let me know it was time ;).

Other than that, I made sure I drank 3 litres of water a day especially on the first few days to flush through all the aesthetic (your own health issues might mean you cannot do that?), and kept to really simple food in the hospital - in fact after my mastectomy last Sept and then subsequent opening up again due to massive haematoma, I had friends bring in high quality/nutritious additive/preservative free meals ie wonderful M&S salads and smoothies/juices etc (hospital food is full of preservatives and all sorts which made me sick). I never feel like eating much at all after ops and loose lots of weight, but if what you DO manage to eat is as natural as possible (ie baked potato, porridge, fruit - all of which is usually on the menu) then that will help your poor body repair so much better than all sorts of rubbish such as macaroni cheese and ice cream etc. Get as much greenery and fruit into into yourself as possible, but if you have GI issues of course you'll know how much you can do that. I have IBS and follow the FODMAP diet - so I don't eat broccoli for instance.... the devils food to my guts! I have real problems with my GI tract with lifelong slow transit, IBS, severe constipation and prolapse (nice eh!) - so please make sure you take the laxatives they offer you - or mention you will need this at the pre op (although frankly nothing I said at the pre op got through to the nurses post op. Not great!

So - YOU make a list of all your meds, all your needs (ie I had to have eye drops every couple of hours, and all sorts due to Sjogrens) for them to see on ward - and take in any and every vitamins you usually have - I looked up about what vitamins help with post op healing and took lots of vitamin C, and all sorts - but that's not for everyone - I just know my needs. I'm about to have another op for my third recurrence in 3yrs - and I know what to do now. they will lock up your medication which I found absolutely awful as they wouldn't increase my doses of laxatives to manage the increased constipation due to all the codiene - so they ended up giving me an enema! If you have increased risk of constipation with dehydrocodeine then try and have a conversation with your clinicians pre op so it is in writing that you will need to increase the dose to limit this risk. Not having a poo for, say, 5 days is soooo bad for the system - especially if filled with tons of strong meds, hospital food and just all your bodies toxins desperate to get out of your body. That causes higher risk of inflammation and infection - so make it clear that, if you need to, you'll have to be able to increase your laxatives. Tons of water will really help this - I cannot stress this enough how important it is ... and generally!

I also take in sunglasses as the lights in there drain the life out of me. And ear plugs as cannot sleep with the constant noise.. a godsend!

Hope all that is ok to say. I just am pretty awful post ops... so I really empathise.

I might be a breeze for you... but being prepared, as you very cleverly want to be, is the way!

Sending you all the best and hope it all goes to plan. D

[RMC17 in reply to DJK99]

Hi D. Thank you so much for the very informative advice. Much to digest but to be forewarned is to be forearmed! I must say, I never thought of sunglasses but really helpful piece of advice. One thing the rheumatologist did say to me was it was so important to stay out of UV light and I do wonder if this means electric light too. Do they give out any UV rays? This is one of the questions I have in mind for my next consultation. Wishing you all the best. x

[DJK99 in reply to RMC17]

Yes, the lights in the hospital are usually very old and they sap your energy and always give me face rashes... even when I go and see my rheumy at the hospital I noticed.. and when I used to work in Social Work - the old council buildings still had the lighting from the 60's. Have a look on the lupus uk website as there is info on their helpful booklets about this I think. If you can take in lots of bottled water (or get your friends to drop of =f tons, that is better than the nasty tap water they give you... disgusting... whilst they drink out of their water purifier.. and I don't blame them!). Take the ear plugs too-even if you don't use them, because they wake you up all night tending to people, or putting people on ward, and up very early ie 6am sometimes with the lights on and everyone crashing around. It's not much fun and incredibly contra to healing but they have to work and as are on nights, they certainly don't go around whispering through the night... far from it!! So - ear plugs are always a MUST for me... but then I'm extremely sensitive to noise. .. and if I don't get the sleep then I become even more inflamed... sleep is the great healer, but you really can only get so much in hospital - nobody finds it easy... unless, of course, you are in a private room (and they do have them, so ask if you could if you need it if really high risk) - or if people can afford private healthcare... If only.

OK - all the best to you. You'll be home before you know it and hopefully getting support from your loved ones and friends.. x

[RMC17 in reply to DJK99]

Thank you so much. I work in an office that is below ground level so not much natural light - all strip lighting. Was wondering if this was contributing to my facial rash. Will go and have a look for that information. Best wishes. x

[DJK99 in reply to RMC17]

Oh!! Yes it will be I think! And drain the life out of you/bring on flares. You can ask to be moved to a place that isn't so injurious to you... I hope you have occupational health help....?? x

[RMC17 in reply to DJK99]

My recent diagnosis is a conversation I still have to have with my employer but it's quite a small, but accommodating, company. We have an electrical firm that rents office space so am thinking about approaching them and my employer to look at alternative lighting to what we have. Had a quick look on the internet after looking at Lupus UK and think I need to speak to the electrical firm for advice on the lighting we have and alternatives, if required. Thank you for your guidance. Best wishes. x