Sunday, October 12, 2008

WLS complications you don't normally hear about

This is a letter I read today from someone who had WLS and is considered a success, mainly because she lost weight and has managed to keep it off, so far. What the doctors don't tell you is how all of those physical complications of WLS will affect all the other areas of your life.
I was fairly lucky with my WLS, even though it failed and I gained back all the weight I lost and then some. The only complications I have from it are IBS, fibromyalgia, and veinous insufficiency. I can deal with those, they don't keep me from doing the things I want to do (well, the IBS means I have to be sure that I'm very close to a bathroom within 1/2 hour of eating). I wear compression stocking to deal with the swelling in my legs, and the fibro, well, I deal with the pain and being tired and sensitive skin as best I can. I can still cuddle with DH, eat meals at the dinner table, spend time on the computer or reading books or watching tv, I can ride my recumbent exercise bike, and if I feel like it, I can even ride my son's ATV. I play with the cats and the grandkids and their puppy. My life is only limited by what I want to do and the amount of energy I have to do it.
The following letter will give you an idea of what life is like for someone who has had more complications from her WLS. It's not a pretty picture, not at all what the doctors will tell you your life will be like after WLS, but it's more common than you think. I'm posting this with her permission, but she wants to remain anonymous, she's not up to dealing with more people telling her that this is all her fault, she must have done something wrong for her WLS to have turned out this way (which is such a crock of shit, I can't even begin to tell you how wrong-headed that idea is). WLS complications don't only affect the person who had the WLS, those complications also affect every other person involved with them.
Why can't I be a "normal" woman with a "normal" body and with "normal"
worries and daily routines? I know some WLS post-ops say they would kill to
be in my shoes. After all, in most people's eyes, I am a major success,
especially in the WLS realm. I lost all the weight I needed to and am not
having trouble maintaining it. My labs all come back great. For most people,
that is all they want to hear. That makes me a success. They don't want to
know how many surgeries I have had total now, how many emergency trips to
the hospital, how many ambulance rides being transferred from one medical
facility to another, how many unplanned stays I have had in the hospital
where I don't even have the luxury of being able to suck on ice chips. They
don't want to hear about the anxiety created by never knowing if I will be
here when my kids get out of school, be here for them when they are older,
survive the latest "emergency" that rips a hole into their daily lives. They
just don't want to know.

I guess it isn't important that they don't want to know. You probably would
rather not know about all the complications either, as that would mean that
you hadn't experienced them first hand and would be able to continue to
blindly cheer others into having WLS. You wouldn't know the worry and strain
your choices have put on the lives of others. You wouldn't know the daily
struggles that come along with ongoing or potential onsets of complications.
You wouldn't know about the loss of dreams for your future. You wouldn't
know. but you do. Sorry about that.

Tonight, it is the loss of dreams that is weighing me down. I know I should
be happy. I have been out of the hospital for over two years now. My weight
is stable and is up far enough not to be a danger to my health. My labs are
good. I am able to run my own home-based business. My family has relaxed a
bit when it comes to worrying about my health. What more could I ask for you
say?

I have worked so hard to regain my health. It has taken years, literally, to
get to where I am. Some days, I can even forget that I had the surgery and
can function pretty much as a "normal" person would. That is where I run
into problems. To regain my health, I have had to give up many activities
that I love. I have had to give up any activities that would run past about
6 pm in the evenings. I have had to give up eating upright at the table
surrounded by my family, but instead recline in a chair in the living room.
I have had to give up many of my more physical pastimes as my intestines
react badly to too much movement. I have had to give up lifting anything
over 15 pounds or any repetitive movement that involves any movement of my
core body. I have had to give up sleeping flat next to my husband, but
instead have to sleep on a wedge to better help my intestines to function
and deflate. I have had to give up so much. but the good news is that it has
worked for the most part.

The bad news is that sometimes I forget the consequences or the reasons why
I had to give something up. Though my head remembers, the emotions tug. I
begin to feel healthy enough to where I "forget" why I do or don't do the
things I do. It seems like my mind and heart begin playing tricks on me,
goading me into cheating just a bit. Why not just take a class for a couple
hours one night a week? After all, I would have all week to catch up and
rejuvenate and I would be home by 9 pm. Why not get rid of the wedge and try
and sleep flat for a while? It sure would be nice to cuddle with my husband
at night again. Man I love to garden. What harm could it do if I just take
it easy while cleaning out the flower beds. After all, I won't pull anything
out but will just clip things off. Why not increase my business? After all,
it is going so well and I used to do so much more.

Right now, I am dealing with the consequences of ignoring the "should dos"
and instead convinced myself and family that I was "healthy enough" to
increase my activity. I am kicking myself now for committing to taking a two
hour course on Thursday nights. Don't get me wrong; I love the class. My
body does not. I am only four weeks into the class. It only meets one night
per week. Being upright in the evening for that period of time has taken a
huge toll on my health. Though I felt strong and healthy before the class
began, my intestines are so upset after the one "longer day" each week, that
they swell, spasm, and bleed. I bleed more out my rectum when my intestines
are "upset" than I do for my periods. I finally think I have almost
recovered when the next class comes up the following week and my intestines
repeat the process. Right now, I am kicking myself for signing up, for
wanting so badly to be able to complete the course, for kidding myself into
believing that I could have a "normal" life with regular evening activities.
Thankfully, the class only lasts for two more weeks. I won't be able to go
the last week anyway because of parent/teacher conferences (which will set
my intestines off anyway as I will still be upright and out during the
evening hours). Thankfully, this time at least I convinced myself with
something that I will be able to get out of in a short period of time and
only made one change. That is probably the reason I am not in for yet
another emergency surgery and hospitalization. Yet, I am so angry and
frustrated. I am giving up so much!

Because of my body:

. I will never be able to finish my master's degree and teach at a
public school (a lifetime dream of mine)

. I will never be able to help with the church youth group in the
evenings (something I used to do)

. I will never be able to commit to teaching a regular class at
church (it adds enough activity to set off the intestines and I also have to
majorly cut back on the weekends when my intestines have been irritated
during the week)

. I will never be able to have my Girl Scout troop meet in the
evenings or go to the big GS activities that most often are scheduled for
weeknights

. I won't be able to add onto my family (I don't have the health and
energy for more than I have now)

. I will never be able to participate in sporting activities with my
kids and often will miss their evening activities

. My kids will never know what it is like to have a mother who can be
spontaneous or that they don't have to worry about the long term
consequences of any unusual request or activity

. I will never be able to be very far away (distance) from
appropriate medical services that may be needed

Because of my body:

. I will always have to plan ahead for potential complications

. I will always need a contingency plan for any activity/work as I
may have less than an hour warning before facing emergency
surgery/hospitalization

. I will always need to make sure that my affairs are in order, as I
may not get a chance to do them later

. I will always have to be very aware of what my body is trying to
tell me, even when it usually doesn't begin to complain until a couple hours
after stopping any given activity

. I will always have to monitor my blood work, medications,
vitamins/supplements, swelling, bleeding, spasming, food intake closely in
order to preserve my health

. I may never be able to commit 100% to any given activity, even if I
am supposedly leading the activity for a group.

. I may never be healthy enough to regain all the activities I used
to do

Because of all that, tonight I am grieving for what I have lost. I overdid
it again. Though I went to class last night and was already bleeding again
by the end of class, I worked today. bleeding throughout the day. Because I
had "committed" to going to Women of Faith tonight and had other people's
plans hinging on mine, I went, knowing that I was passing blood clots
(stupid, I know). Yet, I am so frustrated that I couldn't sit and enjoy it
like thousands of other women because I was too aware of my swelling, of the
bleeding, of my internal discomfort. I ended up coming home early and will
end up missing the morning portion tomorrow as I consciously allow my body a
chance to at least stop spiraling. Oh yeah, my church is also hoping that I
will be feeling well enough after WoF tomorrow to where I can help during
the Saturday service tomorrow evening and I have friends who want to try out
our church for the first time tomorrow evening as well. I really should be
there. I really should take care of my body. If I am such a success, why am
I having to give up so much of my life???

4 comments:

  1. My own mother and I live under many of these same restrictions - not because of WLS, but because of fibromyalgia, migraines, and (in my case) arthritis (I'm 26).

    My heart goes out to the letter-writer. It is not pleasant in the least and I'd never wish it on anybody.

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  2. Jesus H. Christ. I am in tears here.

    You know, I discovered recently that it's more than likely that I could get WLS on the NHS. I'm sufficiently fat that they'd consider that a worthwhile use of resources, even if the waiting list is long. And I won't lie, it tempted me. I'm working my way out of an eating disorder, and I still am not as accepting of myself as I need to be.

    But reading things like this... There's no way. Sure, my feet hurt and we can blame my weight for that. And my back hurts, and we can blame my boobs for that. But I can stay out at night and do my pottery class. I can sit on the sofa all evening and knit. I'm not actually even slightly concerned that I'm going to end up in hospital this week. And I'm not worried that when I have a baby, I won't be able to participate in its life. How the fuck could the (possible, but not guaranteeable) relief of foot and back pain be worth that kind of lifestyle? How could it even be worth YOUR lifestyle, Vesta? As you say, you got off relatively lightly by comparison to cases like this - but I know people with IBS and fibromyalgia, and those things aren't light. They're only comparatively light because it could be so much worse. And how fat would a person have to be to have symptoms like this?

    I need to bookmark this so I can reread it to remind myself why I'm not signing up for that crap, no matter how supposedly on death's door I am. I just don't see how being fat is SO BAD that it is better to live like that.

    You have to wonder - in ten years time, what will the cost of obesity-related health conditions be compared with the cost of WLS-related conditions?

    ReplyDelete
  3. dani alexis - I was diagnosed with arthritis when I was 34, so yeah, arthritis is not fun. I've been dealing with it for 20 years, so it's not a result of my WLS, but the fibro and IBS are. Definitely not something I would wish on anyone.

    maddie - I cried when I read this too. One of the reasons I asked if I could post this was so that people who are considering WLS can have another perspective on it, other than what the surgeons who push WLS will tell you. And I can almost guarantee that the costs of complications from WLS will far outweigh the supposed costs of staying fat. Because staying fat is not a guarantee that you will have heart failure, or diabetes, or any of the other diseases supposedly caused by being fat. If those diseases don't run in your family, a fat person has just as much chance of getting any of them as a thin person who doesn't have any genetic propensity for them. But that doesn't make money for the ones pushing diets and surgery. They still refuse to heed the maxim that "correlation is NOT causation". Which totally pisses me off.

    ReplyDelete
  4. I don't generally comment on posts like this because words often feel cheap, but I had to say something here. My heart breaks for the letter writer. I hope she finds some peace in the world and that her struggle helps remind all of us to live our lives fully without letting fat get in the way.

    ReplyDelete

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