Saturday, October 30, 2004

Postop: Sleep

Most of us get the message that rest is pretty important to our recovery. It can be frustrating, then, to find that sleep is ridiculously elusive in that first postop month or so.

There are a lot of factors that are working to keep us from falling and staying asleep. It takes weeks to get all of the drugs from surgery out of our systems. It's common during the time we're clearing the remains of anesthesia to have vivid dreams, nightmares and disturbed sleep from these drugs' effects on our brains. There's nothing to do about this, really, other than wait out our own body's ability to get rid of the last lingering traces.

Stress is an important part of this too. Stress disorders many of our daily hormone cycles and can have destabilizing effects on our brain chemistry. Normally we rely on our circadian rhythms to guide us through our sleep and wake periods, and when they are upset, so is sleep. As we get further from surgery and relax into our healing, chemicals in our brains normalize and our bodies return to a more normal daily cycle. Unfortunately, fretting about sleep only adds to our stress and prolongs the process of readjustment.

Speaking of hormones, our ovarian hormones play a significant role in sleep. Not only do daily cycles of estrogen affect the other daily ups and downs of the hormones that guide our sleep, but estrogen itself can act on our brains to make sleep difficult. Too little estrogen often makes it hard to stay asleep, and a woman with low levels may find herself waking frequently during the night. Too much estrogen, on the other hand, tends to have a stimulating effect somewhat like caffeine, and we feel the same thing as if we'd had a double-extra just before bedtime: spinning wheels may make it hard to fall asleep, even though once we get there, we tend to stay asleep most of the night.

And don't neglect the hormone link if you kept your ovaries. They may be undergoing a period of diminished output due to the local trauma of surgery, effectively putting you into a temporary state of menopause. Whether or not they recover, the disruptions can make sleep difficult to maintain.

Then too, the very nature of our recovery also influences our sleep patterns. In the hospital, we are (of good necessity) awakened frequently and spend a lot of time in a drowsing state. By the time we get home, we're more active but still may spend a lot of the first week more in bed than out of it. This trains our bodies away from a day/night cycle of long awake periods and long sleep periods. Since we are so inactive, we have less of a need for sleep. By fulfilling our sleep needs in short incremental naps through the day, we may arrive at a nominal bedtime only to find that we really don't need to sleep. This training effect can take weeks to undue.

It's hard to get comfortable when you've just had abdominal surgery. Whether or not you have an abdominal incision, you may have a lot of difficulty getting comfortably situated in bed. It's also hard to move around and reposition yourself, so that rolling over to a new position, something that would normally cause no waking at all, now brings you to full consciousness as you laboriously untangle from pillows and covers to slowly seek another position. If you've been doing a good job drinking enough during the day and/or you're still experiencing bladder crankiness, you'll probably be waking up more to go to the bathroom, too. And because it's more of an effort to get up and get to the bathroom and then settled back down again, that's going to wake you more thoroughly than it would have pre-op and so it'll take longer to get back to sleep.

That's a lot of things working against good, lasting sleep at night. And while it's all fine to know what the cause of this might be, more pressing at 2 am in a bout of the floppy-wakefuls is what to do about it.

  1. Pain meds: Narcotic pain meds may seem like a good thing to take at bedtime to force us to relax and sleep. But they generally last only 4-6 hours, leaving you wakeful and sore before the time when you may think you're ready to get up for another day. A more durable approach to pain is the oral anti-imflammatory that has a 12-hour life, like naprosyn. Taking that before bedtime gives you plenty of medication life to let you rest comfortably through till the morning, without the wakeful effects of having it wear off. Be sure to check with your doctor, though, if you're unsure whether you can or should be using a drug from the NSAID family. After the first few postop days, using the narcotics when you're about to be especially active (and increase your discomfort) makes more sense than using them when you are in bed.
  2. Napping: It's important to get enough rest, yes, but that doesn't need to mean napping every hour through the day. During the first few weeks postop, we should be working towards more and more time awake during the day. Pacing our activities so that we spend some time exercising and then some time in sedentary, undemanding activity before getting up again is a good healing pattern. Getting exercise and then sleeping and then getting up for another hour is training our bodies away from a sleep-at-night pattern.
  3. Exercise: We do need to engage in enough activity throughout the day to need to sleep at night. Every day we need to walk a little further or on a little steeper terrain or make another cautious trip up and down stairs or something that challenges our bodies to grow stronger and helps cut down the incidence of postop constipation and complications. Every activity needs rest and no activity should leave you still tired after resting, but it's important to keep challenging yourself. It's better to repeatedly engage in small activities than go for one gut-burning grind a day, too. By making ourselves healthily tired, we're readier for sleep at night. If there's no reason to sleep, we won't.
  4. Preparation: We can clue our bodies when we are expecting sleep and ease the process of falling asleep. Before we had surgery, we most likely did this by our normal evening routines. Surgery disrupts this, so we need to consciously re-establish sleep-promoting practices. Changing into sleepwear (wear sweats or a caftan or something else comfy for lounging during the daytime), going through teeth and skin care routines, reading in bed--these are some of the things we often do normally that we let slide postop. We can also signal our bodies to relax by having a warm drink of something soothing. Sleepy tea blends (no caffeine!) or warm milk or products like ovaltine all contain mildly sedating agents that can help us through those first few moments of falling asleep. Positive imaging and relaxation routines can make sure we're not fighting ourselves, letting our worry over falling asleep work against us by keeping us alert.
  5. Patience: It's also important not to try to force ourselves to sleep just because the clock says it's time. When we're not sleepy, lying in bed fretting only makes us more wakeful. When we wake up during the night, tossing and fuming prolongs the time it takes to return to sleep. If you're not so sleepy your eyes would prefer to be closed, you may not need to be asleep. Give yourself an honest time, and then get up or do something else. Maybe you just need to turn on the light and read; maybe you need to get up and go for a pee and a drink; maybe you should get up and watch a movie from a nice recliner where it won't matter if you finally doze off. Even if all you do is get up, read half a chapter and then go to bed to fall asleep, you won't feel as though you've had nearly the struggle for sleep as if you'd instead flopped around in bed fussing for that amount of time. The idea is to set yourself up to be relaxed about sleeping so you quit being your own worst enemy.
  6. Sleeping pills?: Forcing yourself to sleep because you think you should when your body isn't wanting to is not really helping to re-establish your own innate sleep patterns. If our sleep is so disordered that we truly are going days and days without any sleep (not just keeping ourself from needing to sleep by cat-napping five minutes at a time all through the day), then there is something more going on that we need to talk with our doctor about. It's always better to deal with the underlying problem than to put a drug bandaid on top. If your doctor finds that there is no physical problem or hormonal imbalance interfering with your sleep and feels you need medication to break your present, dysfunctional sleep cycle, then short term use of drugs may be warranted. But do your health a favor: don't just make reaching for a bigger hammer to knock yourself out your first response to the problem.

These all sound like pretty simplistic things, but none of them really offers a "quick fix." I know very well that we often prefer the easy solution of a prescription to solve anything we perceive as a problem. But the sources of postop insomnia aren't going to go away quickly or be cured by one simple thing. We need to give ourselves time to regain our normal patterns and to clear the effects of surgery from our systems. Postop insomnia is generally something that requires healing, not treatment.

It's easy to believe that we need to heal our surgical incisions because of the discomfort they cause us. It's harder to see the need to heal other systems in our bodies when we can't see those "cuts" in our normal function. But postop insomnia is another signal that our bodies haven't gotten over surgery yet and need our active support. Part of a good recovery is rebuilding ourselves to take care of all our needs.

Wednesday, October 27, 2004

Pre-op decision: surgical route

The vaginal vs abdominal route is endlessly debated. Going for the bottom line right away, the "right" answer is clearly: the one that gives your surgeon the absolute best field of vision/access for what you need done.

That said, it's widely believed that the vag route, because it skips that belly incision, has an easier recovery. In the very first few days, that may be the case, but it's been my observation that over the entire recovery period, there's not a whole lot of difference.

The key point to remember is that it is the internal healing that is the big job, and that is the same whichever surgical approach is used. In fact, I've noted time and again that it's the women who have a vag hyst who are more prone to overdoing in the early stages, just because they aren't looking at that incision and treating themselves as cautiously. Some difference does exist between a bikini and a vertical incision, since the latter extends further up into the belly and is more noticeable with muscular effort. But even so, the length of time incisional healing affects you is really brief compared to the interior healing. So try not to agonize over this one.

There have traditionally been three factors, roughly, that determine suitability for the vaginal procedure:

  1. Is there room to get the uterus out through that route? Obviously, with very large fibroids and for many women who have never given birth, that answer would be "no."
  2. How experienced is the doctor with that version of the procedure? A vaginal procedure is in fact much more complex. Experience counts in avoiding negative surgical outcomes and quality of final results.
  3. Can the doctor see everything he needs to? The vaginal route obviously involves a more limited field of view. Those needing ovarian evaluation or considered cancer possibilities often require the better visibility of abdominal incisions.

I was told that since the doctor couldn't "see" everything that he was doing, in many cases, there was damage done to the other organs.

Exactly. The addition of a laparoscope helped this somewhat, as that technique became more common, but this is still a much more remote viewing that calls for considerably more expertise on the part of the doctor and relies much more on the soundness of the pre-op diagnosis (as opposed to visually checking everything out).

I have fibroids in and around the outside of my uterus. I don't want anything missed. Also I read that they are finding that a lot of nerve damage is being done to and around the vagina and sex is often affected greatly.

So many things are relative to your own particular anatomy, what exactly the pathology is for which you are having the procedure, and your own surgeon's practice level. But in general, yes, because of the awkward approach angle, there tends to be more manipulation of internal organs and nerves and such than with the abdominal approach. And because things are harder to see, there is a greater chance of missing things or causing damage with a vaginal approach. Additionally, women who have spent hours in the stirrups for surgery are more likely to experience back pain or back/leg nerve irritation in their immediate postop period.

In fact, the vaginal procedure, as a rule, takes longer (longer time under anesthesia) and requires more internal work (sutures, healing) than the abdominal. The more rapid initial bounce-back due to not having the abdominal incision is not always a service, since the internal healing that goes on is greater, even if less obvious. More women with vag than abdominal hysts end up going back for revisions when they have damaged this or that during the healing process by doing too much before they are ready and/or getting an incomplete heal. The famous 6-8 week recovery period is for the internal healing, not the superficial incisional healing—something that it is all too easy to overlook with the vaginal procedure.

I understand that in vaginal surgery, the cervix is taken out . I want to keep everything that I possibly can.

Yes, it must be, because of the way the surgery is done. Many abdominal hysts also remove the cervix, and by and large the problems that used to be associated with this, of later losing support for internal organs, are eased by more current techniques that emphasize reattaching the tendons to provide good abdominal floor support. The argument now focuses solely on whether or not you have a strong cervical stimulation component in your orgasms. Those who do will probably miss it; those who don't will probably get along just fine without it. Remember, of course, that with cervical retention you will continue to get a light period (and may need hrt to cycle you, if you have your ovaries removed); you will also continue to need regular pap testing for cervical cancer.

My own decision was for an abdominal, even though I was offered a vag (reluctantly). Because my pre-op diagnosis was unclear about the actual state of my ovaries, I wanted the doctor to be able to examine things thoroughly. He was relieved, since the vag route was only conditional, with an abdominal to follow if he found anything suspicious that needed further exploration. I did, however, bargain with him that he would start with a horizontal incision (the "bikini cut"), which I feel disrupts abdominal muscle fibers less and promotes faster recovery of abdominal tone. We agreed that he would start there and only extend to a vertical (making a "T" incision) if what he saw warranted further removal of affected organs. This was written into the operative permit, specifically.

As it turned out, I did not need the vertical extension as my ovaries were only rather suspicious and not yet fully malignant, and he was able to do a thorough examination of the entire abdominal cavity from the horizontal incision once he got that mammoth uterus out of the way. For me, the peace of mind in knowing that such a thorough exam had been done more than made up for the additional inconvenience of the incision.

And, truly, I didn't have a lot of recovery difficulty. I was walking within a couple hours of returning to my room, and within two weeks was walking a mile or more without problems. I switched to oral anti-inflammatories within 24 hours of surgery, never using either the IV morphine or other narcotics (I did get regular doses of IV Toradol, a potent anti-inflammatory, in the first 24 hours). Among other things, I credit this with not having had problems with gas or a first bowel movement (although I did hit heavy fluids, fiber, and a couple stool softeners to ease things along, in addition to the activity).

So for me, the decision was to do nothing to compromise either my surgeon's best possible technique or best possible examination, and in return for that I found the abdominal incision to be no dire cost. Everyone will have different experiences, but those are the things I found worthwhile to weigh in making the decision.

Monday, October 25, 2004

Bladder Suspension

Did your doctor say you might be a candidate for this procedure? Here's what he's talking about:

Friday, October 22, 2004

Is a hysterectomy like a C-section?

Although many women come to a hysterectomy as novices to surgery entirely, a certain number have previously had a child delivered by Caesarian section. Because this is an abdominal surgery affecting the uterus, it's natural to try to compare the two experiences as part of envisioning what hyst recovery will entail. However obvious this comparison may seem, the fact is that they really aren't equivalent surgeries.

First, there is the experience of the C-section itself. There are so many variations in pain tolerance, not to mention both birth and hyst experiences that I don't quite know how to find a common ground. There are women who are inconvenienced by both; women who can say yes, it wasn't a picnic but I survived it okay; and women who think it was the most exquisite agony they ever experienced or could conceive of experiencing.

What I can tell you is that from reading many years of women's reactions, the majority admit discomfort, a great many admit pain of some degree that was of limited duration and dealt with adequately by analgesic drugs, and a very limited few (and most often those are ones with especially complex suegeries, poor care, or who develop complications) report truly unbearable or excruciating pain. Depending upon how you experienced childbirth, you may have gained a clue about your own tolerance for pain.

The other aspect, and it's a very important one in developing your expectations of how your hyst will go, is that because you're talking major surgery (that is: cutting, removing, rerouting stuff internally), you are talking a much more prolonged recovery than childbirth, where it is more a matter of simply returning to a previous state (even in a Caesarian, there is little disruption of abdominal contents other than to heal some very basic incisions). It's a common myth that a hyst is "just like a Caesarian" and this really can lead to shock and disappointment later (or, among friends, co-workers, and the whole other rest of the world who may feel free to comment on your condition).

But in the course of a hysterectomy, your bladder is peeled loose from your uterus, many things are cut (nerves, ligaments, blood vessels), your ovaries and their supporting structures may or may not be removed, your vagina will be given an artificial ending, and all of the support that used to derive from your uterus and its attachments has to be relocated to hold up the end of the vagina, the bladder, and your guts. On top of this, your other organs are handled, pushed out of the way, rinsed off, and then reassembled. There are sutures and sutures and staples and multiple closures to hold all these things back together again. The tissue damage is higher, you are under anesthesia longer and with more drugs, and your risks of infection are higher. And that's assuming you aren't also having endo removed, scarring cut apart, bladder suspension, or rectocele/cystocele repairs done. So this surgery is much more complex than just making a slit, removing the uterine contents, and sewing the slit closed again. And it takes a correspondingly longer time to heal and heal well.

I'm not trying to intimidate you here, but rather to make sure that you're clear on what to expect. It's not by any means an impossible or even wildly difficult experience, but it is important to be realistic in all your it's very good that you are thinking and looking for a conceptual framework to base your expectations on.

But "much worse" is not exactly how I would term it. It will take longer to get a good recovery, so if you measure success in time elapsed, you will indeed find this one more demanding. Pain? There is no excuse for either one to hurt more than the other, for pain relief is pain relief, irrespective of cause. Don't settle for less than you need, but also remember that it is not the role of pain medication to make you oblivious. A reasonable objective is that you will be in minimal discomfort while lying still and tolerable discomfort when moving around and right significant discomfort if you do something inadvisable for your level of healing. It is also reasonable to expect that you will be aware of and guarding your surgical site from discomfort for the longer healing period.

But many many women report that their hyst post-op discomfort was really not much worse than significant period cramps and in many cases was considerably easier than the chronic gynecological pain some women experience. Your goal as you heal is to be guided by your discomfort, such that if you begin to experience it, you need to slack off and not stress your healing.

Maybe this will help you get a better handle on the situation ahead of you than just the scary "worse" label. It's doable, it's work, it's not pleasant but it's not gruesome. There is always someone who has complications, who has a bumbling doctor or inept staff, who has a different personal or cultural definition of pain tolerance, and those with problems always have more to say about something than those who found an event manageable. If you can try to hang onto this sort of perspective, I think you'll find that you too will be able to handle this surgery pretty satisfyingly.

Wednesday, October 13, 2004

Postop: Pain

Because many of us come to a hysterectomy as surgery novices, one of the things that worries us most is the prospect of pain. Chat around at the water cooler or the hairdresser's and you'll hear plenty of scary stuff. But is that realistic? No, not really. Let's look at what we're facing.

You're entitled to a plan

No matter what previous experiences you may have had with surgeries and pain, a minimum expectation of the pre-op planning process is that you and your doctors develop a pain management plan. You should know how they anticipate dealing with the expected pain, what they plan to do if that is not adequate, and what alternatives they are holding in reserve. You should also know when you may have medication and how to get it, including what to take home with you and what to do if you run out. This is very very basic (however much doctors take it for granted and don't discuss it), and you have every right to ask for a discussion of it and to participate in making those decisions.

Immediate postop pain management

One thing that can be beneficial in dealing with pain in the first hours after surgery is the use, from the Recovery Room on, of a relatively new anti-inflammatory called Toradol. It is given IV, regularly, and it seems to keep the level of pain down such that narcotics may not be required or may be required only in lesser amounts than when they are used alone. It also seems to ease the transition to oral meds, particularly of the long-acting NSAID family (such as the 12-hour dose of naproxen), and does not carry the effects of the opiates (in either allergy or constipation).

[Update 12/20/04: FDA warning about naproxen: The FDA has issued warnings about possible heart damage that may be caused by using naproxen. More on this topic in this post.]

It is also reasonable to ask your anesthetist to medicate you for nausea before you wake up in Recovery, rather than waiting for you to request such medication because you are already nauseated. If you make this request at your pre-op appointment, they should be willing to honor it. And, generally speaking, if you can get past the immediate post-op period, nausea should no longer happen to you. In fact, nausea after the first few hours typically means you're being nauseated by something you're receiving after surgery, such as your pain med, not things you received during surgery.

Two fairly common pain management setups are the patient-administered IV and the epidural block. The former is a pump, connected to your IV, that contains morphine or demerol—very potent narcotics. The pump is set for a maximum dose per hour, but you may trigger it to deliver a dose whenever you need it, up to that maximum. This allows you to pre-medicate before doing something that you feel might cause pain (like getting up) and allows you to control the amount of medication you get. This pump is typically used for one to two days, and is gradually replaced by oral medication.

The epidural involves a pump supplying numbing medication into your spinal area, to block sensation from the lower part of your body. It is generally used in conjunction with spinal anesthesia. Women who use it tend to speak very highly of it, especially in terms of promotion of early mobility. It is only left in place for a day or two.

Another, lesser-used but still valuable technique is injecting the area of your incision with numbing medications or running a small continuous drip of medication to that area. This may or may not need to be your total pain coverage.

How bad will it be?

The goal of pain management is not oblivion. Even the best drugs cannot obliterate your awareness that you've had major surgery and your body wants you to be really really careful with it. There are also some tradeoffs with narcotic pain medications that need to be kept in mind: too much will cause you to stop breathing, and excessive use can cause respiratory suppression and pneumonia predisposition as well as increasing postop constipation.

The goal of pain management, then, is making the discomfort tolerable. Note that I don't say "pain." Rather, you are aiming for a level of not-too-bad when lying still and tolerable while moving and "ouch!" with injudicious movement. You have a right to this amount of coverage, but you may need (or you may need someone with you who will do this) to advocate for your needs with busy nursing staff. If your nurses are not responsive to your needs or you feel you are undergoing excessive delays in obtaining medication, you should contact your doctor to let him know this. Even during the night, there will be an answering service that can have the doctor on call for your surgeon's practice get back to you. You should not be left in pain due to lack of medication and the medication your doctor orders for you should provide adequate relief. If you have received your limit of pain medication without obtaining acceptable relief, your doctor should be able to switch to a different drug. We all have different physical responses to different drugs, and so some drugs work for some of us better than for others. The goal should be adequate pain relief.

What about the risk of addiction?

The addictive potential of postop narcotics is very low because you are taking them for pain relief, not for the sensation of taking the narcotics themselves. Taken in the amount necessary to control pain, the pain "uses up" much of the action of the narcotic and it does not provide the sensations that cause addicts to seek it out. The duration of postop use is not at all close to the amount of time required to create any physical addiction. Neither you nor your doctor should stint on your legitimate use of narcotic medications for pain relief.

That does not, however, mean that you should not take them for the shortest necessary time. Narcotics carry negative effects as part of their normal mechanism of actions. For example, they are quite constipating. Since gas and bowel motility are some of the most pressing concerns in the first couple postop weeks, it doesn't make sense to continue adding to that problem by taking narcotics longer than necessary.

The usual practice is to be on IV or injectable (narcotic) pain meds for a day or two postop. These are gradually replaced by oral drugs, usually those containing a narcotic such as codeine. Codeine and other oral narcotics have the same constipating effects as the injectables. So while they may be good at controlling pain, they are also not a great long term management drug. Many women go directly from injectables/IV narcotics to oral anti-inflammatories, or use anti-inflammatories to stretch the effects of oral narcotics. In the first few postop weeks at home, anti-inflammatories can gradually replace narcotics while providing still-adequate coverage.

One of the most convenient anti-inflammatory drugs is naprosyn (naproxen), because it has a 12-hour duration of action. This means you can take it at bedtime and still wake up with some in your system in the morning. Using the 4-6 hour anti-inflammatories can mean waking up in the morning in discomfort. Since some asthmatics or those with cardiovascular disease may be sensitive to this whole family of drugs, be sure to ask your doctor about what drugs you should take even when you are ready to leave the narcotics.

Now, all of this presupposes that you are not already on a pain management program or do not have an addictive problem. If this is the case, then you will obviously need to involve your therapists in your operative planning so that you meet your increased pain control needs without derailing your present level of control. The fact of a previous narcotic addiction should not mean that you cannot control your pain during your recovery, but it will obviously mean that you have a greater need for pre-planning and monitoring the situation.

Pain and medication on discharge from the hospital

By the time you are released from the hospital, you should be able to get around and get by, within the limits of exercise tolerance, on fairly mild oral medications. The gas/constipation problem is the source of the most discomfort in the first post-op week or so, and it yields better to specific medications/approaches (lots of fiber, drinking lots and lots of liquids, exercise, stool softeners) than to pain meds (and opiates are especially bad in that they slow your bowel activity down and compound the problem).

What about if my prescription runs out and I'm still hurting?

Your doctor sends you home from the hospital with a standard prescription. That doesn't mean that this is all you can have. If you have used the pills as directed and find that you are running out and will need more, call your doctor's office and let them know. Often, they are more than willing to call a refill to your pharmacy. Other times, they may suggest alternatives that will be effective for the point you're now at in recovery. Whatever the plan, don't feel you have to suffer once the first prescription runs out.

Do be sure, however, that you understand how and how often your take-home pain meds are to be taken. Typically the prescription reads something along the lines of "Take 1-2 every 4-6 hours as needed." That means that you may take them that often (if you need that level of pain relief), not that you must take them that often (to get any relief). All too often women in the fluster of getting ready to be discharged from the hospital are handed a fistful of papers and hear only "2 every 4 hours" and just tear through their prescription and wonder why, a few days later, the prescription that they thought was to last them till their two-week checkup is all used up. Those dose intervals are the most frequent at which you can safely use that medication; it's fine if you don't need to take it that often or if you find that you need only 1-2 in a whole day, just to give a little extra boost to your non-prescription medications.

On the other hand, if you need more medication than that or you feel that even at the largest/most frequent dose you're not getting adequate coverage, it's a good idea to call your doctor about this as well. Your prescription is based on your doctor's expectations of how you should be doing, given your surgery and the speed/extent of recovery he sees when he visits you in the hospital. If you are not progressing as he thought you might, you may need a recheck to be sure everything is going as it should. Your doctor makes treatment decisions based on what he sees in the hospital; he can't see you once you are at home, so if things change, it's your responsibility to let him know that.

You should expect, and demand if necessary, a reasonable and adult discussion of these things at your pre-op appointment. If your doctor is not willing to allow your participation in pain management planning or to discuss his plans with you, then you might be well advised to seek another consult. A surgery is about your needs, not the doctor's.

Monday, October 11, 2004

Pre-op: packing list

Since many of us come to a hyst as our first surgery, we're not even prepared for the experience of being a hospital patient and may have little idea of what we'll need to take with us when we're admitted. Your "closet" will have only room for a single outfit (to go home in) and your belongings must fit on the surface of a small table plus, perhaps, a small drawer, so anything more than that is going to be a clumsy bother. Most of your time will be spent sleeping, drowsing, or walking, so you simply won't need much with you.

Some things you might bring to the hospital with you

  1. Pre-op instructions/permits/papers, any pre-registration forms you filled out, copy of your health insurance card
  2. Glasses, hearing aides, dental appliances you can't do without. Be sure to bring cases or containers for all, and any necessary cleaning materials. If you don't have to have it, though, don't bring it. You most likely will not be allowed to keep them with you until you reach your room after surgery, so if it's irreplaceable, leave it in the keeping of your partner while you're in the OR.
  3. Toiletries: you'll get a toothbrush and soap and lotion as part of the obligatory personal care kit. You will probably get to shower before you go home, but you aren't going to feel like indulging in a lot of frivolity. Pampering yourself sounds more attractive now than it will be when just water flowing over your body will be a delicious treat and simply standing up the height of your physical ambitions. Just bring the bare necessities (we're only talking a couple days, here): conditioning shampoo, deodorant, moisturizer, hairbrush. Two things that you may find especially helpful, though, are lip balm and a moisture (scented water) spray.
  4. Hair: if you have very long hair, consider arranging for it to be braided or French-braided before surgery and again the day after surgery: you’ll enjoy not having to wrestle with it. You’re going to need to pamper your hair very seriously for several months post-op if you have general anesthesia (it is very hard on hair), so if you must have a perm, get it a week or so beforehand so you can go awhile after without having to repeat it. Most hairdressers won’t use any chemical processing on the hair of someone who has had surgery for several months. Take a very gentle hairbrush with you, so you can keep the “bedhead” rats gently detangled.
  5. Your own sleepwear: not really needed. You’ll want to wear the hospital gowns for at least a little while rather than risk staining your own, and it’s much simpler to put on a second gown backwards than to wrestle your IV into the arms of a bathrobe. Forget struggling with jammie bottoms: bending over is not going to be high on your list, and they are kind of strangling when sliding around in a hospital bed. If you must, make it loose, simple, and no more than knee length. You'll also most likely be wearing heavy elastic stockings or pneumatic leggings and have a catheter for the first day, so jammie bottoms are only going to be in the way.
  6. Slippers: slip on, with non-slippery soles (as in: rubber). No matter how cute, anything else is a liability and aggravation. Washable is good, so you can de-hospitalize them when you get home.
  7. Books, magazines, tapes or CDs or mp3s and player (extra batteries): you’ll probably want some entertainment, but make it really undemanding. Anesthesia dulls the mind, as do the medications you’ll be taking post-op. This is the time to read frothy stuff and listen to gently soothing music. Anything more will be Too Much Work.
  8. Mini-office in a large envelope: notebook for jotting down doctors’ instructions, names to write thank-you notes, keep track of post-op appointments; pens, address book with the phone numbers of anyone you might want to chat with (don’t rely on memory—it’ll be addled by anesthesia); small calendar; consider a mini-recorder to tape your doctor’s visit because you will not remember what he said.
  9. A small huggable stuffed animal or small pillow with washable cover. Hugging something to your tummy supports it while you do the coughing and deep breathing necessary to keep your anesthesia-surpressed lungs from getting pneumonia. Also, you will want a small cushion between you and the seatbelt when you go home. Don’t have one? A large bathtowel or small throw works equally well if tightly folded.
  10. Clothing: send what you wore to the hospital home with whomever you came with as soon as you undress into your gown in pre-op. There isn’t room in your room for much stuff or a suitcase. Bring something loose and comfortable to wear home. Large panties (a size or two larger than normal, that come up to the waist) are helpful. Make sure you can get into your bra without gymnastics. Slip-on non-slippery-sole shoes. Sweats or a long, loose dress (my personal fave) are best—you won’t be zipping up those levis over that tummy for a few weeks. Remember: this only enough to get you from the hospital to your home without being arrested for indecent exposure; you’re not going on a Royal Progression. Don’t bring: panty hose, garments with back closures, anything snug about the middle. Also, remember that you will need to get back out of this clothing at home, when you are tired from the trip: tight pull-over-the-head things are so difficult to remove that you may end up spending days in them before you can extract yourself. It's perfectly fine to go home in a gown and bathrobe or loose coverup, too.
  11. Self-adhesive mini-pads: most of us have a little drainage and these beat the daylights out of the industrial-strength elastic belt and mega-pads the hospital stocks for the maternity ward. Enjoy the thought, when you buy them, that they represent the last time you’ll do business on that aisle of the store!
  12. Comfort stuff: eyeshade and earplugs so that you can sleep when you want to, not when your roommate wants. Big bandaids or cut-off sock tops for your elbows (they will be your primary mode of transport in your bed, and those sheets quickly begin to feel lie sandpaper). Backscratcher (if you are prone to itchies)—it also makes a nice extension hand.

Some things you shouldn’t take to the hospital

  1. Jewelry of any kind. You may want a watch afterwards, but get someone to bring it in for you after the surgery. Don’t bring any personal adornments—they just get in the way and you won’t want to bother. Check at your pre-op appointment with anesthesia as to whether they will allow you to keep a wedding ring on: some will, taped; others won’t. It’s best to leave your ring in the keeping of your spouse than risk it being lost by someone whose job it really isn’t to keep track of stuff like that. Most anesthesiologists will also require that you remove nail polish and any nail adornments on both toes and fingers—check with yours at your pre-op appointment if this is important to you. Although it’s not something you can leave at home, don’t come in with fresh tattoos or piercings: your doctor may postpone your surgery out of concerns for infection. If your plans include these, discuss them with your doc pre-op (there may also be a time guideline for how long he would like you to wait after surgery, as well). Speak with anesthesia at your pre-op about the possible need for removal of nose, tongue or nipple ornaments; if you are having an abdominal incision, speak with your surgeon about any navel, labial or other operative-area jewelry pieces.
  2. Checkbook, credit cards, driver’s license—anything you won’t be using. In fact, leave the whole wallet home: there is no security for your belongings. Bring a small amount of cash for vending machines, pay phone or snacks from the hospital coffee wagon. If you plan to make a large number of long distance calls, you may wish to bring a pre-paid phone card to cover them if you don't have a cell phone.
  3. Demanding handwork projects, that challenging book you’ve been meaning to find time to read, anything that takes concentration and involves multiple pieces. They are too hard to keep track of and you won’t have the concentration. Save those for when you are home.
  4. Hair dryer, styling stuff: too much effort to hold your arms up that long. Figure out a no-effort hairstyle or braid your hair. Really, no one expects you to look great: go for clean and tidy and the world will consider you radiant.
  5. Makeup: ditto.
  6. Your own prescription or over-the-counter medications or vitamins/supplements. You should have discussed these in detail with both your physician and your anesthesiologist at pre-op appointments. Do not bring anything in with you unless you and your doctor have previously agreed that you do so. The doctor will also need to write “patient may take own [med]” as an order in your chart in order to protect the hospital staff from liability for any mistake you may make with your own meds.
  7. Contact lenses. Use your glasses instead. You will be dropping off to sleep at odd intervals and it’s too hard to get to a schedule of taking them in and out. The care for them is too involved and bothersome as well, and the hospital is full of Bad Germs. It’s only a few days and there’s nothing much you need to see anyway.
  8. Abdominal binder, surgical stockings—unless your doctor has specified you should do so. If he wants you to have these, he’ll arrange for them in hospital. Ask him at pre-op: different doctors have different procedures, and reasons for them.

Things to do

  1. Listen, take notes (or use a mini-recorder), say thank you. Ask for a copy for your records.
  2. State your needs clearly. If they are not met in a reasonable amount of time, ask for the charge nurse. The management tree from there is head nurse, then nursing director.
  3. You have the right to question and refuse anything. Ask what that medication is for. If a medication doesn’t look the same as the last dose did or you don’t think you’ve been taking it, ask to see the order for it. If you really think it’s wrong or you really don’t want it, simply state “I refuse this medication. You may note this in my chart and I will discuss it with my doctor on his next visit.” Do not be intimidated at “causing extra work” by asking a nurse to double-check your medication: that is their job and legal obligation.
  4. Similarly, if you are in pain and you have had all the ordered medication (or have other medication needs), politely insist that your doctor be notified that it is not providing adequate relief and request another medication order. The fact that it is the middle of the night and the nurse would have to wake the doctor is not an excuse for delaying this. You are paying the doctor and the hospital very well, and not suffering excessively is part of what you are paying them for. If your nurse is resistant, work up the management tree. If necessary, call your doctor's answering service yourself (have that number in your phone notebook) and ask that the on-call doctor covering for your surgeon get back to you asap.
  5. Never let your IV run dry. Remind the nurses when it's getting low and really get noisy if it gets to the bottom of the bag. You're the one who gets another stick if it clots off.
  6. Move around in bed, with special attention to stretching and flexing your legs, often. In this application, "often" means hourly.
  7. Walk. Then walk some more.
  8. Deep breathe and cough; use the blow toy as you are shown—these are making you well, so don't skimp. Hourly is good.
  9. Drink until your pee is nearly colorless.
  10. If your temperature goes up, drink, breathe and walk more. The walking and drinking are also the remedy for gas and constipation.
  11. Stand up straight when you walk. Contrary to the way you may feel, your guts are not going to fall out onto the floor.
  12. Don’t let yourself be overwhelmed with visitors. Before surgery, suggest that your friends call you to see if you want company rather than just popping in. Visitors are exhausting, especially in the first day or two, so tell them that it will most likely be a few days before you’ll have the energy to enjoy their visit. Also, if there are obnoxious family members or “friends” you don’t want to see, or you want a graceful way to keep the entire 86 members of your family from camping out in your room for four days, ask the nurses to post your room as “no visitors” with your spouse (or single other designated Acceptable Visitor) okayed by you as the exception. If folks are determined to send flowers, suggest that they wait to do so until you go home, where you can enjoy them properly. Hospital rooms are just too small to hold very many things, and that’s not when you will be most appreciative. If they want to do something while you’re in the hospital to show their concern, suggest they have a double-latte milkshake delivered to your room instead ;)

Sunday, October 10, 2004

Postop: bladder matters

One of the aggravations we may face in the first few weeks of our surgical recovery is a crampy bladder. This may feel like having an infection, it may seem like cramps after we urinate, we may have trouble telling when we need to go or we may feel as though we need to go very frequently. All of these are fairly normal things and are results of the trauma to our bladders during surgery.

They've been discussing this recently over at the Survivor's Guide to Surgical Menopause, a website and message list that focus on hormone and other longterm health needs of women who have had a hyst. Here's some of what Framboise, the moderator, had to say about bladders and what they undergo in surgery:

The bladder is basically a muscular organ held in place by a number of ligaments that tie it to other structures (but not the intestines) to keep it up in the abdominal cavity instead of pressing onto the vagina and rectum (or even hanging into their space, as happens in a prolapse). Even when the surgical approach is from beneath, as with a vaginal or laparoscopic procedure, because the two organs--bladder and uterus--are directly adjacent and share some blood vessels and nerves, to remove one does physically impact the other.

Even in those procedures, some of the supports for the top end of the vagina and bladder are shifted away from the uterine area and onto other anchor points. This process is involved and really is the important part of a hyst: it takes only moments to sever the uterus (assuming it isn't fused in place by scar tissue or its fibroids haven't caused it to engulf other organs) but the rest of the time to tidy up bleeding and supports. And this is what takes so long in the healing, by the way--all those tidying up things have to heal securely and fully for your abdominal contents to have proper ongoing support.

So in the most uncomplicated of hysts, the bladder's circulation and nerves are affected and it's had a lot of handling go on in the vicinity. In a more complicated hyst, such as for endo, the entire bladder may need to be cut free from enveloping scars or it may need to be peeled away from being squashed by massive fibroids or any number of even more exciting things (from the bladder's perspective).

As though that weren't enough to induce a months-long fit of the crabbies, surgery also means we have a catheter inserted into our bladders for, usually, about 24 hours (it's needed to keep the bladder fully emptied, except when it may be pumped full of sterile fluid to make it more visible during the surgery--needs differ according to the surgery, but a catheter is standard for several very good reasons). In addition to the risk of introducing infection, a catheter is a mechanical irritant to an organ that normally only has to deal with liquid content.

It's generally believed that the catheter is left in during the first postop day so save us from having to get out of bed to go to the bathroom. Unfortunately, that's a misconception. Instead, it's left in because it's typical that our bladders are in such a foul snit over the uproar of surgery that they flat go on strike and aren't likely to work properly until they get over it. In fact, one of the earliest postop recovery challenges is: can you pee on your own once the catheter is out? For most women, the answer is yes and they give the matter no more thought. For others, typically those who had more complicated procedures with more bladder trauma, that answer may be no for a few days. For those who had actual bladder procedures associated with their hyst (typically more intensive support repairs), it may be routine to keep a catheter even once they go home and need to use it for several weeks.

So, you can begin to see why a bladder is not a big fan of a hyst, even when things go well. And it's not an on/off function, where it suddenly decides to go back to working and that's the end of it. In fact, as healing progresses, nerves and blood vessels go through their own stairstep healing process and you can expect to see bladder crankiness come and go with these stages. This is all normal healing, but it can be immensely aggravating and even outright discomforting while its going on.

Making sure you don't let yourself get dehydrated for fear of cramps is important--you need to retrain your bladder to be tolerant of being full, especially now that there's room for it to do so without having to muscle an enlarged uterus aside. You may want to limit your caffeine during this time, since caffeine is a known bladder cramp stimulant. Many doctors will throw in a list of other foods that may be irritants, just on spec, but most women really don't see that spicy foods, for example, constitute that much of an irritant to their bladders. I rather think that these are sort of verbal filler, not that the doctors really feel that all our ills will be averted if we subsist on a diet of cream of wheat and skim milk (not to mention that five minutes later when you're discussing postop constipation they'll tell you to eat plenty of fruits, vegies and fiber *rolls eyes*).

One "old wive's tale" you may encounter is that it's normal for the bladder to "fall" or for women to become incontinent after a hyst. This is a dated outlook. Surgical procedures have gotten more sophisticated in dealing with the need for bladder support, and this is no longer a normal outcome. Often the helpful women who are sharing these stories have actually had their hysts, or heard about their friends' hysts, decades ago. While some bladder discomfort is normal, then, we're no longer looking at trading serious bladder impairment for removal of our diseased uterus.

Sunday, October 03, 2004

Postop: walking and the prevention of surgical complications

When and why you have to start walking in the immediate postop recovery period is a concern I frequently see women "voicing" in the online forums. This tends to get short shrift in the pre-op teaching, other than a fleeting mention that you'll be up and walking "right away" after surgery.

Right away most likely means on the day of your surgery, a few hours after you get to your room from Recovery. Generally the order is written for you to "dangle" first and then, a few hours later, to get up and walk. This means that the first effort will simply be to sit on the edge of the bed with your feet hanging over the side. In itself, this is a minor production, and you'll have the help of your nurse getting all of your tubes (IV and catheter, at least) organized. Your nurse will show you how to use the bed controls to raise yourself, then swing your feet over and down from a sideways position so that you put less stress on your belly. This is a very effective and important technique that you'll be using in the weeks ahead, so take your time and use the help and coaching to get the hang of it. Your nurse should stay with you the whole time you're sitting up, since it may make you a bit woozy and light-headed.

Later, usually the evening of your surgery, you'll actually get out of bed and stand and walk a few steps. Sound scary? It's really not grim. You'll have your pain medication, and most nurses know to medicate you before you move around so you'll be prepared. You may want to hold a towel or small pillow to your belly to help with the sensation that it will fall out. This is an illusion from muscle weakness, but you'll feel more confident holding onto it. Standing up starts just like dangling, only you'll go all the way to standing up. Go ahead and stand up straight: there's nothing useful in walking hunched over and your back will appreciate the chance to stretch that good posture provides.

The first time you walk, you may only go a few steps across your room or down the hall. Each time you get up, it's a little easier to go a little further. By your next postop day, you may be ready to walk on your own, but do ask for someone to accompany you as long as you feel at all woozy.

So why is this so important? The most critical part of walking is that it helps to prevent the complications that can come from any surgery, and particularly abdominal surgery (and this applies to those whose surgeries used the vaginal route: the surgical site is in your abdomen, and that's what counts here). When our lungs are depressed from anesthesia and dried out from getting oxygen and we lie extra still in one position (as we do when under anesthesia and then later under pain meds), secretions can pool up in our lungs and make a perfect medium for bacterial growth. Pneumonias and loss of lung function can follow, so changing position, deep breathing and moving about are important measures to prevent this.

Another surgical complication is blood clots. These are caused by, again, lack of the normal movements that exercise our blood vessels and keep blood from pooling and clotting. Abdominal surgery makes us especially prone to blood clots, so your surgeon may order you to wear special elastic stockings or pneumatic leggings to help take over that blood vessel exercising when you're less active during the first operative day. As you move around more, the normal motions and muscular activity will resume this function. Still, it's important to move and stretch your legs every hour or so while you're in bed and to try to remember to never cross your legs or ankles while you're lying around (this constricts blood flow, too). The more often you walk, the more you're working to prevent blood pooling and the clots it can lead to.

Another big benefit to walking is the way it helps your guts to start working again. It's normal for abdominal surgery to cause our intestines to more or less shut down. They are cranky organs, and just don't like to be handled and disturbed. It may take a day or two for them to get over their snit. During that time, you'll find your doctor and nurses listening to your belly with a stethoscope and asking you if you've passed gas yet. Your diet will typically be very light at first, mostly clear things like jello and broth and fruit juices, so that you don't overload your nonfunctional guts. Walking will help stimulate your intestines to get back to work, and once they do so, it'll help keep things moving along. Many women find that the gas that builds up in non-functional guts is the greatest source of postop discomfort for them, and walking is the best way to keep it moving on its way. As you walk more and your guts work better, your appetite will recover and your diet will be advanced to more fulfilling foods. It's typical that you won't be discharged from the hospital till you pass gas, thus demonstrating returning bowel function. The more you walk, the sooner you'll be outta there, then. This is a worthy goal.

Once you're home, walking regularly will keep your guts moving despite the constipating influences of pain medications and inactivity. Walking is also the best, gentle exercise for rebuilding your stamina. The more you lie around and don't use your muscles, the weaker you get—strength is a real use it or lose it proposition. By walking regularly and for increasing duration and distance, we keep from losing ground and, safely, push ourselves to recover.

How much is enough? In the first week at home, just walking around the house to the bathroom and kitchen and sofa and bed will probably be enough. By the end of that week, though, you should be making brief forays outside--perhaps up the driveway or around the yard for a lap or two. By the end of the second week, women who have been hearty walkers before are doing blocks; those who may be in poor physical condition should still be able to walk a block or more at this point. So long as what you reach for is healthy fatigue, not exhaustion or extra soreness, you're on track for a healthy recovery. If you get sore or you don't feel refreshed after napping on your return, you need to back off a bit and give your body time to gather the additional resources to recover and be ready to progress again. For the first month, walking is your best exercise, and duration/distance, rather than speed or steepness of terrain, should be your goals.

Saturday, October 02, 2004

Postop: Should I call my doctor?

I see posting after posting in the online hyst forums describing all sorts of situations and asking this question. And the only possible answer is, invariably, yes.

Yes, if anything at all happens that worries you or makes you wonder whether or how your postop instructions apply, you should call your doctor.

Yes, you should call your doctor if it happens at 10 am on a weekday and yes, you should call your doctor if it happens at 1 am on Sunday. Every surgeon has a mechanism for taking calls and a relief on-call doctor who will be available if he is off. You may have to leave a message with an answering service and wait for a callback, but you can and should take your questions to a doctor. No one on a forum, no matter how well-educated or well-intentioned, has the information at hand to answer your questions safely and applicably. In fact, if your doctor or his on-call is in doubt because of the limitations of discussing things on the phone, he may ask you to come to the office or be seen in the Emergency Room just so that you can be evaluated more fully. Doctors understand the limitations of phone consultations; women on forums, however well-motivated they may be, tend not to.

"But I hate to disturb my doctor with what might be a silly question..." is an all-too-common response. Nonsense. You are paying the doctor for a service, and part of that service is postoperative supervision. Whether you have developed a complication requiring further treatment or whether your doctor failed to adequately instruct you on what to expect, the doctor is a contractor being paid for a specific service and you are entirely entitled to that full service for those big bucks.

There are things you can do to help make your call as effective as possible. First of all, before you even pick up the phone, jot down some notes. Write out as explicitly as possible what your worries or questions are. Include such background information as when you had your surgery, what surgery it was, what medications and hrt you are on (include when you last took them), what your temperature is or other pertinent information about your physical condition. Your doctor may take your call from a location where he doesn't have your chart or his notes available, and you don't want to rely upon his (crowded) memory for important details.

Doctors respond better to clear, objective information, not subjective responses. Saying in tears that "I feel totally horrible and I'm really worried!!!!" does not convey nearly as much helpful information to the doctor as "I am running a fever of 101, my head has been pounding for 6 hours despite taking [pain medication type and dose and time of last dose], and my incision looks red, puffy and is draining green pus that made a circle 1" in diameter on a dressing in the past 6 hours." The first comment will likely get a soothing response or a suggestion that you need an antidepressant; the second may see you with an office visit and an antibiotic prescription—very different results indeed.

So if you are describing your incision, you need to be prepared to report the following:

  • location
  • how long this has been going on/when you first noticed it
  • color: red, pale, normal skin tone?
  • temperature of the area: hot? same as surrounding tissues?
  • presence or absence of local swelling, feeling of area: hard? soft? hard lump with distinct edges? dimensions of lump in inches/cm?
  • sensation of area: hurts all the time? hurts when touched gently/pushed on? sharp pain or ache? burning pain or stabbing pain?
  • smell: no particular odor? medicinal? foul or rotting meat odor?
  • drainage description: clear pinkish-yellowish? bright red blood? old clotted blood? pus? green? yellow?
  • drainage amount: size of stain on dressing in [whatever] amount of time, how many times you've changed what type of pad or dressing in past [whatever] amount of time?
  • your temperature taken just before calling, as well as when you last took it and what it was then

If you think you are having hormonal problems, you need to be prepared to report the following:

  • what you are taking for hrt
  • when you take it and when you last took it
  • what specific symptoms you are having that you attribute to your hormones: hot flashes? mood swings? rash? swelling? headache? nausea?
  • for each symptom, further list: when it began, how many times you've had it, how long it lasts (for example: hot flashes started today, I have had 6 lasting 10-30 seconds each and each time more intense/causing heavier sweat or I have burst into tears inappropriately 4 times today and yelled at my kids when they really didn't deserve it twice)

By having this sort of information ready, you're giving your doctor the information he needs to identify and constructively deal with your problem, not your reaction to your problem. And that will make for a whole lot more satisfaction all around. And, hey, if it turns out to be something perfectly normal, then you have the reassurance and your doctor's learned a lesson about preparing you for what to expect that will benefit the next woman he treats. Everyone wins!