Sunday, January 16, 2005

Pre-op: planning for the medications we'll be receiving

In the course of some discussions we've been having on the list, I've realized how difficult--and yet how important--it can be to make sure that our medication preferences, sensitivities, and allergies are taken into account in the planning process. While most of us know about pre-existing allergies and know that we need to tell our doctors, anesthesiolgists and caregivers about them, it's more of a grey area in the case of sensitivities or strong preferences. How can we anticipate what we might be given in order to tell our doctors what we need them to know when we have, for the most part, little idea of what we'll be getting? I thought that you might like to know the general outlines of what you can expect in terms of medications throughout your surgical experience. Mind you, these are just generalities, so you'll need to do the work of talking with your doctor and fleshing out the details.

Starting with the at-home pre-op phase, many women are told to use a specific laxative bowel prep, with various doctors preferring different combinations of agents. Some doctors do not order this, and it should not be done unless it's ordered. You may be able to negotiate the actual laxatives used if you have specific preferences.

In the in-hospital pre-op process, you will probably receive a sedative/amnesiac agent (Versed is one commonly used, but there are many others and it's a matter of physician/anesthesiologist preference) and this may be mixed with other drugs, such as atropine, that dry up your nasal/oral secretions and assist with anesthesia (generally those receiving a general get this). Once your IV is started, you may also be given an initial dose of an antibiotic.

One other thing that might pose a problem for some women in the pre-op surgical routine is exposure to a skin cleanser called Betadine. This is an iodine-based scrub that is typically used to prep before incisions. Not only is it used to scrub your belly if you're having an abdominal incision, but you may be asked to douche with it beforehand, in order to begin decreasing the number of bacteria in your vagina. This can be a harsh agent and there are a certain number of women who are simply allergic to it. If you've not encountered it before or not used it on delicate vaginal tissues, ask for a sample betadine scrub so you can do a test before using the douche. I know that I can have betadine on regular skin without any problem at all, but when I tried a little test scrub on my labia, the burning was horrific even though I washed it off immediately! I reported this to the prep nurse the next day when she tried to send me off to do the douche, and she agreed that the doctor would not want to do surgery if the prep left me blistered and burning. There are other cleansers they can use, so if you're in any doubt, ask your doc at your preop and ask for a sample to test out yourself at home before committing to placing it where it is not, ahem, easily removed.

In the OR you will receive a great many drugs, depending upon the anesthesia you choose. These are under the control, for the most part, of your anesthesiologist, and that is who you need to discuss this part with if you have any specific drug concerns. As a rule, general anesthesia today is much less stressful on the body than it was even a decade ago, so your mother-in-law's account of her reaction to surgery she had 40 years ago may not be entirely predictive of your experience. Spinal or epidural anesthesia also involves drugs given systemically as well as locally, so you will again have to review with your anesthesiologist exactly what his plan is.

In Recovery, you may receive an antinausea drug (it's possible to request preoperatively that you be medicated for nausea before you experience it, if you're worried about the possibility or previous experience leads you to believe you're prone to vomiting). You will receive pain medication IV (typically morphine or demerol) and perhaps, depending upon elapsed time, another dose of antibiotic. If your doctor is one who favors this approach, you may also be given IV Toradol, which is an anti-inflammatory of the aspirin-ibuprofen (NSAID) family. Given the recent questions raised about the Cox-2 family of drugs and heart disorders, if you have any cardiac disease, you should discuss the use of this entire family (Cox-2 and NSAID) with your cardiologist as well as your surgeon, both in terms of operative use and home use of oral anti-inflammatories.

Postop pain control tends to be IV at first, then gradually moving to IM (shots, usually in the big muscle of the butt) or perhaps straight to oral. Morphine and demerol remain the most common but there are other agents that may be used. Some doctors continue the additional Toradol so long as you have an IV. Women who retain a spinal may be also getting morphine via that mode. When the transition to orals is made, they typically are one of the codeine blends although some women go straight to oral anti-inflammatories.

Many doctors will also place you on anticoagulant shots starting in the OR and continuing for at least a day until you are up and around enough that the risk of clotting is lowered. These are tiny sticks into the fat pad of your belly, and may be the source of small bruises you'll see there. Because these shots are given early in our recovery when we're pretty bleary, many of us don't remember them at all and wonder about the tiny bruises. The drug is called heparin.

In the postop (in-hospital) period there may be several more doses of antibiotic and usually the introduction of stool softeners once you can take oral meds (once your bowels have begun making sounds signifying they are functioning). Additional vitamins or iron supplements may be ordered for those whose blood counts are low (but do not resume taking your own vitamins till you get the okay from your doc--if you double up on some of them because you're taking yours and getting some from the hospital, you can set yourself up for bleeding and other risks). If you are having problems with gas the best remedy is walking but some doctors will also order Gas-X or similar drugs to help ease the discomfort.

And those are all the usual things I can think of that might be a problem. Obviously if you take drugs for other problems, you'll be resuming those postoperatively and should be sure that you do get them if they are needed and that you get the doses you normally take unless you and your doctor have discussed making some temporary change. You may need to remind your doctor about pre-existing prescriptions, especially if they are prescribed by other doctors, so they don't forget to resume them in your postop orders. Don't assume that they are being omitted for some good reason unless you have specifically discussed doing so with your doctors--docs forget things that are outside their own routines for their surgeries, and it's up to us, ultimately, to guard our own interests.

It's a good idea for each of us to think through whether any of these drug families are a problem for us--if so, early discussion with our doctor and/or anesthesiologist will help alleviate the risk of negative reactions when you are least likely to want them: during or immediately after surgery. What if you've never had any of them? Our caregivers are alert for negative reactions, but we have a certain burden on us to report them as well. For example, if you are sensitive/allergic to morphine, you may experience annoying itching of your nose and eventually itching all over. So it's a good idea, if you start itching and have a morphine pump, to speak up early and often in asking to change to something else.

I know that I got one push of my morphine pump done by the nurse as I was getting into bed when I got to my room from Recovery, and I spent over 24 hours trying to rub my nose off my face. Luckily I didn't need the morphine again--Toradol was plenty of control for me even with a fairly sizable abdominal incision--and so it was not something I had to deal with. But this is someplace where having a friend or family member in the hospital can help us: in those first postop hours when we're too snowed to put things like this together or to advocate strongly for our needs, someone with us who can help us deal with these things can be very valuable.

My sister was the one who made the nose/morphine connection for me (I hadn't noticed I was doing it--yeah, that's how groggy), and so when I got up and the nurse went to hit the pump, she intervened and asked me if I felt I needed the morphine in the light of the reaction I might be having. I agreed that no, I felt as though I could try it without, and so I went staggering merrily off down the hall with the two of them following along shepherding my assorted catheter/IV/whatever (in retrospect I think that maybe the morphine made me more than a touch goofy, too, but at least I was up and moving). And by the next morning I was more alert and thoughtful and could take care of myself again, even though my concentration was as impaired as anyone's whose just had a general. So that is a little cautionary tale for those who are wondering what this actually works out to be like, if we have a mild sensitivity reaction.

To help you do some drug-related research, if you are unclear on exactly what drugs are related, what they include and what side effects they carry, these links might be useful:

The main takeaway point here is that it's up to us to judge how we're responding to what we're getting, not only in terms of whether we are getting, say, adequate pain relief from our meds, but whether they are suiting us in other ways as well. Remember that there are alternatives for all drugs, so gritting your teeth and putting up with something is really not necessary for anything other than the convenience of your caregivers. And that's not who it's about, is it?

Saturday, January 01, 2005

Operative uncertainties: why did I come out of the OR with a different diagnosis/surgery from the one I went in with?

I read many comments from women who are surprised to wake up from surgery without their ovaries when they thought they were only having their uterus removed, or who find that they have a whole new shopping list of diagnoses that they never expected when they went in. How can this happen? they ask. They told me that these things "might" happen but were not likely.

Doctors really get in a bind between trying to prepare you for all the eventualities and to steer you so that you're not totally overwhelmed with fear of things that just aren't likely at all. It's a hard call, and it's made vastly more difficult because the diagnostic tools we have just aren't that accurate.

That's right: for all the ultrasounds and MRIs and CAT scans and all those advanced tests, there's just nothing that is anywhere near as accurate as opening us up and looking around. It's a very common thing for women to go into the OR with one diagnosis and come out with either a different one entirely or a whole raft of unexpected discoveries.

For example, endo seems to be a surprise discovery in about half (that's a seat-of-my-pants guesstimate based on what I read online, not a firm statistic) of the women who have a hyst and endo--it's never suspected or diagnosed pre-operatively in a surprising number of cases. Another surprise diagnosis is adenomyosis, which will turn up in a hyst done for fibroids or endo without ever having shown up well in diagnostic imaging. Sometimes extensive scarring or damage from other disorders, as in a case where large fibroids actually damage ovarian circulation, is what makes the deciding difference in the operative plan, and yet scarring is virtually invisible to most diagnostic techniques. Women who have suffered from pains and miseries all their lives and who were told they simply had to put up with it as their lot in being women often are astounded and validated when they return from the OR with a whole shopping list of abdominal pathologies that remained elusive until the surgeon actually got a good, personal, eyeballs look.

The fact is, a preoperative diagnosis, while informed by every skill the doctor can bring to bear, remains only an educated guess. I think this is one reason why, unless the diagnosis is very well-defined indeed, women may be well served by having that abdominal incision. I know that I felt that since I was having the surgery one way or another, I wanted to know that as of that date, there were no more lurking surprises that might have been missed by the more limited vag approach (well, that plus the fact that my uterus was roughly the size of a steamer trunk and I strongly suspect they brought in a fork lift after I was anesthetized to get that monster out). I don't think that this is in itself necessarily a compelling enough reason to choose this route, but it is certainly an added peace of mind that helps offset those first few days when the incision is most troubling.

So I would have to say, after the years I've been involved in the hyst community online, that a pre-op diagnosis is only a "best guess" and that a wise woman and her doctor consider it a very open-ended proposition. And because our ovaries are rather fragile organs, I think that however much we may hope to keep them, they have to be considered at high risk for possible removal.

A prudent woman facing surgery should make her feelings known very clearly to her surgeon on what her stance is on ovarian pathology. I think most of us would okay removal immediately if cancer were suspected. Short of that, however, are a lot of grey-area calls. Do you want suspicious ovaries removed "just in case" or do you want them biopsied with the option of later (minor surgery with laparoscope) removal if indicated? Many doctors feel that after age 45 ovaries represent more liability than value (although that may be changing), on the premise that our bodies need hormones for nothing other than fertility. Many women in menopause disagree with this, and it's something that it's best to think out in advance (a brief hormone education that might help you explore this further is here) lest your doctor make a decision for you that you would not have favored had you been a party to it.

At the very least, you can ask your surgeon: under what conditions during the surgery will you remove my ovaries--what are the decision points for you? And if you disagree or think the matter requires evaluation at the time of surgery, you can modify your operative permit to include the specification that if ovarian removal is indicated based upon surgical findings, you only will grant consent for it through [your personal rep named in the permit, whom you have prepped with your views in great detail and whom you trust to carry out your wishes as best they can]. In such a case, the surgeon would have to contact that person (who would obviously be standing by in the waiting room through the surgery), explain the situation, and receive their consent for whatever option is proposed. This is not an unheard-of option, and one that women who have strong feelings about their ovaries have successfully taken.

So while there are unknowns we all face when we go into surgery, good planning and frank "what if" discussions with our doctors can help make sure we're better prepared for those uncertainties. When your doctor runs through that list of "possible but not likely" outcomes, stop him and ask: but what if that does happen? What then? What are my choices? What will those choices mean for my future health? And if you feel you need to, you can add language to your operative permit to specify that in a "what if" situation, the doctor will perform the option you prefer.

We can't eliminate the unknowns--they're part of the package--but we can prepare for them as well as possible so that the fear of them beforehand and the way we deal with them afterwards are at least less stressful for us. And we certainly can use a little stress reduction as we're facing this surgery.