OPERATION SOON, ANY ADVICE?

[Heather Bell]

Hi All
I am having a Gynae Op next month, I have read a book on SJS and given a copy of the section on general anaesthetic to be passed to the anaesthetist.
Books are very helpful but I wonder if any of you have any advice based on your own experiences.
They are talking about possibly giving me a epidural instead, anyone have any thoughts on this?
Also any advice on post Op related SJS would be very helpful
Heather

[Katybarstool]

Hi Heather

I had three gyny ops in 2005. Although I wasn't diagnosed with SJS or OA at the time, I already had them. I found with all three surgeries (2 minor and 1 major) I was slower to get over the anaesthetics than most of the other people, and my reovery was quite a lot slower too.

Interestingly, I had infections after two of the ops, and my back and hips were painful, but I guess that is because of the way we are positioned during these procedures  .  When I was considering why I healed more slowly, I have rationalised it since by considering how sensitive my external skin is, and wondered whether my 'internal' skin might be, and how much longer it might take to heal than someone without an autimmune disorder. Oh, and I was still on strong painkillers for a couple of months.

Looking back at my posting, this seems quite confusing, but I hope it makes some sense. If you want to chat, please feel free to pm me.

Kathy

[Linda196]

Heather, if you have made sure that the anaesthesiologist has the information about the special concerns for SjS, that's half the battle. You should also print a copy for the nurses who will be caring for you, maybe with a sheet of practical advice like allowing "swish and spit" mouth rinses, ice chips, mouth care with swabs and moisturizing drops or liquids like Biotene products, and the need for frequent eye drops or ointments. I can't remember if it is covered in the instructions for anaes, but if possible talk to your doctor about limiting the pre-op fasting to the minimal amount of time, for example a light or liquid breakfast if you are booked for afternoon.

If at all possible, it would be very helpful to have a family member or friend with your for the first 12-24 hours, to be sure you get those things when needed.

An epidural anaesthetic would allow you more control over what you can take orally, but has it's own concerns, especially if you have any neuropathy with your SjS...that's a judgment call best made between you and your doctor.

Each of us responds to surgery differently, but there is always the concern that any trauma will trigger a flare. Other than that, some heal quickly, others slowly, just as with non-sjoggies. Having SjS doesn't automatically mean you will have a more difficult time recovering from this surgery.

[Scottietottie]

Hi Heather 

I've never had gynae surgery under an epidural but I had a partial knee replacement done that way. It was very effective.

The worst bit was waiting on the day of the op to be taken through. Although they knew I had SjS I had a hec of a time persuading them that I needed to be able to 'swish and spit' because of dryness. It's certainly something I'd discuss more fully another time around.

Good luck with your op.

Take care - Scottie 

[kelsey]

Hi Heather I have had major surgery several times and have had slow painful recovery with everyone asking why I had pains in areas that had not been operated on.  We sjogries understand this but others don't know of our daily pains.  The last time the main problem was that they had not heard of plaquenil so were relieved when I had taken it with me, of course they had not heard of Sjogrens either!  They brought me cooled, boiled water each day so I could bathe my eyes but strangely neither my eyes nor mouth were particularly dry.  I could only think this was due to being on a saline drip, (on my worst days now I would like to try it). Another of my main problems was lessoned because having a catheter for some time was a relief as I GO at least five times a night and countless times through the day.  I always say that the only time I am not in pain is when I am under anaesthetic, so I have no experience of epidurals.  Good luck, hope all goes well and looking forward to hearing how it goes,  kelsey

[Skylar]

I had 2 c-sections performed under epidural and didn't feel anything. I enjoyed being awake during the process. I'm not sure what decision I would make now without doing serious research, but given my positive previous experience I probably would choose epidural again. Problem with epidural is the hospital often doesn't like patients having them because they must be administered by an anesthesiologist and not a nurse anesthesiologist so it costs more and ties up the anesthesiologist and you want someone who is truly competent performing the technique.

Good luck on your surgery - and hope the recovery goes well.

Skylar

[Heather Bell]

Hi All

Thanks for the experiences and tips, I have noted all your suggestions and advice.
Before I got all my health problems I would not have given this a second thought but my experience of the medical system has taught me to be prepared, always be cautious, ask lots of questions and learn to run very fast - I wish.
Thanks again
Heather

[lynnmarie219]

Good luck on your upcoming surgery Heather! It sounds like you're doing your research and taking the time to be prepared and that is great. I think its wonderful when patients take an active role in their health care!

[irish]

Heather, I don't know what kind of surgery you are having but I had an abdominal hysterectomy back in 1990 when I had Myasthenia, sjogrens and hypothyroid, asthma and only diagnosed with the thyroid and asthma. I was so scared to have this surgery and asked them to do a spinal anesthesia. They told me that they couldn't do it because when the uterus etc is pulled out of the abdominal cavity a persons reaction is to start vomiting.

Now, things change so much with meds, procedures, etc so I am sure they would be glad to answer your questions. I had a complicated surgery and had a tumor on my appendix (which was 6 inches long and attached to the back wall of the abdominal cavity) and I had to have my liver, spleen, gallbladder etc checked plus they pulled all my colon and checked it for tumors. I got along good and did not get infection.

I was in the hospital Monday and went home Thursday. They forgot to give me a morphine pump after surgery and I was given Motrin and tylenol for pain. Doc told me to be walking 2 miles by the end of 2 weeks. I could not believe it!!! I think he just really exaggerated that just to make sure I was up and moving. I held my belly and managed to walk 5 blocks 2 times a day by the 3rd week. The worst problem I had took a long time to leave. I had a hard time sitting in a straight back chair for months. When I went back to work and had to sit it was difficult. Easier to stand and I had to get up and walk around a lot. Good luck with your surgery. I'm sure it will go fine. A little fear of surgery is a healthy thing. Irish

[Heather Bell]

Hi Irish
Gosh you do not do anything by halves!
My Op is not as drastic, but from my research a common complaint is that people did too much too quick following doctors advice (mostly men) and then had to have further ops to correct the damage. So I have no intention of overdoing things, best laid plans. My husband is always telling me to rest, until he needs someone to help carry the furniture.

[irish]

Heather, There is a fine line between doing too much and not enough. I was told that if you lay around too much after having abdominal surgery you can get adhesions---and if you do too much you can get adhesions also. I lived in fear of a blood clot so I was up every hour and walked some. Irish

[kelsey]

Hi Heather I am so pleased that you are getting lots of info but I just want to tell you my experience of too little or too much after surgery.  I had several gynae ops many years ago but a lot of the same common sense is needed.  After my hysterectomy I was nagged to move about carefully but another lady on the ward seemed to miss out on the nagging.  She went out to another hospital to convalesce and soon came back because she had blood clots through not moving enough.  Another time a lady came back after several days and was unkindly paraded infront of everyone because she now needed another op through doing too much.  I felt so sorry for her because maybe she had no help at home.  The answer seems to be the same as in most things - moderation.  Good luck kelsey