Restless Recovery

Well, mine upholstered belly has been reupholstered and is now purple/green bruised and battered looking, with a wicked scar on the right hand side, but slowly healing up just fine.
There were numerous heparin shots every 8 hours that left tiny dots of violet across the adipose expanse that look like weird freckles, and there are two big bruises, one on either side, I assume from bumping into things while dragging my IV pole full of antibiotics and morphine around during those first couple of days after surgery.

Virginia Mason Hospital's 15th floor, where I landed because they had no beds elsewhere, is an oncology (cancer) unit, yet it was the most positive, warm and comforting hospital room I've ever stayed in, and my roomate Eileen, who was actually a cancer patient, would, I think, agree with me. Eileen had also had her abdomen slashed open, to remove 3 tumors in different spots, and bless her, she took the pain, Foley catheter and bloating of the bowel all in calm, even tempered stride, never raising her lovely voice and always being gracious, courteous and generous to all she encountered. For example, I am sure that I snore, though not loudly, when I sleep on my back, as I had to do once I was brought up from recovery. Eileen never once growled at me about my nocturnal grring, nor did she complain about my Miralax induced crawls to the toilet in the middle of the night.

The nurses and the medical technicians (or techs as they now call nurses aids) were wonderful, professional yet compassionate, concerned and consistently ready to help if you were in pain, needed a bath, wanted a fresh robe or were just in need of a kind face after a benadryl-induced nightmare. Monica and Jenny and the whole staff encouraged me to continue my attempts at meandering down the hall, though I was groggy and dizzy from the pain meds and aching in my newly-unstable core. They never laughed at my feeble attempts at bending over to pick up something I'd dropped, or at my cumbersome way of getting into and out of bed.
When my IV port infiltrated and started to burn like someone had dropped a burning coal on my forarm, a day shift nurse and a resident were quick to remove the old port and put in a new one without any pain suffered at all.

Dr T's residents both were helpful, but one in particular was kind enough to get me off the morphine drip and out of the Foley catheter nightmare, which was a godsend and made me feel light and unencumbered for the first time in 3 days. He got me on to ibuprofen and percoset ASAP, so I could head home and free up a much-needed bed for other surgery patients who were beginning to stack up in the hallways on gurneys.


Dr T explained to me that my surgery had taken a mere 90 minutes, and that I had the 'longest appendix' he'd ever seen, which had wrapped around some of my other organs and which he happily removed like a bad weed from my body. He allowed me a full liquid diet the day after I came out of the OR, and I was able to have juice and popcicles and even soymilk while I was at VM, something I'd not expected.

Now that I am home and almost a week out of my surgery, I am still on a mostly liquid and all soft foods diet, with a dollop of Miralax every morning to make sure things go through. I am hoping to quit taking the laxative this weekend and get back to regular bathroom times now that I feel my intestines are healing up. I did attend a book group meeting Tuesday night, and yes, I had to have help getting up and down out of the car and into the chair, but I felt it was well worth it to see all my book peeps. Plus I spent Wednesday in bed, being very careful not to strain or pull my stitches, just for good measure.
Today I had my son lug the vacuum upstairs so I could vacuum the upper half of the house, which was a filthy mess when I got home (this is a whole 'nother topic, but why can't men clean? Why can't they see the dirt and germs right in front of them? Can't they smell a bathroom in need of a good scrubbing? Why not?). Now I am hoping to take a walk this afternoon and have my dear neighbor and friend Janine over for a chin wag of some sort before Nick gets home.
I don't think that I lost much weight while only drinking fluids, because I wasn't getting any exercise to go along with the sugar calories I was consuming, though there wasn't much of them. Still, with any luck I will be walking Witte Road and back next week, or at least walking Lake Wilderness Trail and trying to get back on my feet with my weight loss program, though I don't think I will be able to eat protein until the last week of June at least.
But I have been told I'm not to take any of my Crohns medications until I see my gastro doc and get the okay from my surgeon, who tells me that the rest of my intestines looked clean and healthy, from what he could see. Maybe I won't have to take expensive Crohns meds anymore...wouldn't that be a treat?!
Wish me luck and sending healing waves to me whenever you're ready!

Surgery is Scheduled

Well, it looks like the upholstered belly is going to undergo some rennovation soon, as I'm on for illeocecectomy (they remove the stricture between my colon and small intestine and sew/staple the ends together) on June 5 at Virginia Mason Hospital.
I tried to run the idea of having the surgeon, Dr T, do a little liposuctin while he was in there, just about 15 pounds or so off the omentum, but no, he said 'nice try' and left it at that. Sigh.
Dr T is taking out my appendix at the same time, though, and said that I should plan on being in the hospital for 3-4 days, so I am not going to be shuffled home too quickly, and I will probably have at least 4 weeks of recovery, not something I'm looking forward to, as I had 6 weeks of recovery after my c-section and I was ready to go back to work after 4 weeks.
But I do know that I've got 2 years of exercise, weight training and two boot camps behind me, so I won't have to start over when I finally do go back to classes at WIO.
Because I won't be eating anything for two weeks after surgery (just drinking clear liquids after the first week of IV only) I imagine the 6 pounds I gained due to cortisone, required to reduce inflammation after my obstruction, will come back off posthaste. I am planning on losing at least 15 pounds, if not more while I recover, so there is one advantage to having your guts torn out.
I also have a lovely stack of 16 books that I can read through while I wait for my belly to heal. I'm looking forward to the eyestrain.
I must say that since I've been off the carb rotation diet I've been happy to eat soft, bland foods, but not thrilled to have to pass by any raw fruits or vegetables, beef, pork and no hot dogs. I love hot dogs, and I miss them. I look forward to having one on the 4th of July this year, when hopefully my gut will be healed enough to allow me to eat protein in a tube again. I also plan to down quantities of watermelon and perhaps even a hamburger with extra pickles, if I am feeling daring.
Wish me luck.

The Near Belly Blow Out, Or How I Survived My First Obstruction

Oh, it is excellent to have a giant's strength; but it is tyrannous to use it like a giant. -William Shakespeare, playwright and poet (1564-1616)

I just love that quote, so I decided to put it here just because it's true, and it's Willie.

The other housekeeping I need to get out of the way is to post this URL for a marvelous article from the NYT on the intrinsic value of friendship. I sincerely believe that if I didn't have the great circle of friends I currently maintain, I'd have been a dead old badger last week when my colon nearly blew up.

http://www.nytimes.com/2009/04/21/health/21well.html

Now, to the task at hand--the tale of my terrible intestines.
For the last two weeks I've been feeling bloated and constipated, and yet somehow fiber didn't seem to be having it's usual laxative effect on me. So I tempted fate and decided to try eating things like oatmeal, raisins, dates, figs, red pepper hummus, broccoli and caffeinated teas, things I usually avoid because they tether me to the toilet.
Not so, though, for the last 10 days, so I grew bold and didn't worry when I wasn't going to the bathroom at all...and my belly bloated out like I was 7 months pregnant.
I did have some pain Monday and Tuesday, and noticed that I had lots of acid reflux at night, but I figured that some OTC Pepcid would take care of that.
Wednesday I felt awful all day...pain, bloating, burping and nausea dogged me. By nightfall, I felt horrible, with stomach cramps, a burning throat, lots of gas that wasn't going anywhere and nausea that had me dry heaving into the night, and even after taking a percoset, the pain just continued to get worse. I started throwing up in earnest in the wee hours of the morning, and by 7 a.m. the pain was intolerable. I went in to wake up the huz and tell him I needed to get to a hospital.
I was hoping that he'd just let me ride in the car to the ER, but instead he called the EMTs who insisted on taking me to the nearest hospital (one that my gastroenterologist has no privileges at, unfortunately) in Auburn, while I was sobbing and screaming in pain by the time I arrived. They gave me tons of pain meds and then admitted me, stuck an NG (naso-gastric) tube down my nose to my stomach, and started pumping out all the food and liquid that had backed up from my intestines all week.

It seems that the stricture that I have in my terminal illeum, right where my colon, or large intestine, meets my small intestine, had gotten fed up with all the fiber and irritation and it swelled shut, along with the inflamed intestinal tissue around it, causing a partial obstruction that wouldn't allow waste material to pass through to my colon. I was in so much pain, I felt as if my intestines would rupture. There were waves of excruciation that begger the imagination to properly describe.

There is a special level of purgatory for having your guts sump-pumped over a 30 hour period. The tubes are clear so you get to watch all this grotesque green and brown stuff empty into a container on the wall, and the pump itself sounds like Darth Vader's respirator. The tube was pressed against a nerve in my nose that made my sinuses and teeth ache, and my 92-year-old room mate snored like a buzz saw most of the night, so I got little sleep.

Still, after pumping me full of solumedrol (cortisone that is put through an IV) to get the swelling down enough so I could defecate, even a little, they allowed me to go home after three days with a promise of taking another weeks worth of steroids and eating only baby food, clear liquids and no meat. Unfortunately, in my weakened state, I didn't ask the admitting doc if I could have delicate fish, like Dover sole, or very tender bits of chicken breast meat.

So I've been living on chicken broth and soda crackers, applesauce and rice cereal with soymilk and today I decided to live dangerously and have elbow pasta with babyfood turkey and squash over it, to make it look like mac and cheese when there wasn't any dairy anywhere near it. Yesterday I pushed the envelope by consuming a mini-baguette with dairy-free margerine and jam with a cup of herbal tea. I think it was too much, though, because during the fabulous new NIA class at WIO, I started to have gut pain again, and had to take half a percoset when I got home.

I hate taking steroids, as they always make me hyper and ravenous, and I have all the unwanted side effects that come with this 'miracle' anti-inflammatory. I need to get all the swelling down in my guts, though, because the surgeon at Auburn said they won't do any stricture-removal until the inflammation is all gone, and my gut is calm, not in flare mode. Sigh. Hopefully I won't gain more than 4-5 pounds from this, so I won't have to spend months trying to get it back off again once my body is back to normal, or normal for me, anyway.

I have learned something through all this, though. About myself and my appetites, about my wonderful and supportive circle of friends, and my best beloved family, Jim and Nick, Mom, Dad, Lloyd and, amazingly enough, my brother Kevin.

You all ROCK. And I could not have made it through this health crisis without you.
I know, from the CCFA Patient Education Conference and my own research, that 75 percent of Crohns patients have surgery in the first 10-12 years after diagnosis. So I guess I was due. I just wasn't ready for the debilitaing pain, and the aftermath of my favorite deadly sin, gluttony.

She should have triumphed no matter how she looks

I totally agree with Denis Palumbo...we should embrace people for themselves, not just for their looks or the fact that some people are amazed that someone who isn't young and pretty can actually have talent.
There needs to be more people who aren't shallow jerks like Simon Cowell out there, who are mature and compassionate and decent enough to realize that a persons heart, their soul, their worth often have little to do with their exterior trappings.
This from a frumpy 48 year old woman, who can't sing, but who has value anyway.


What if Susan Boyle Couldn't Sing?
By Dennis Palumbo for the Huffington Post


Like millions of viewers, I was thrilled and moved when 47-year-old Susan Boyle wowed the judges and audience on Britain's Got Talent with her superb singing. As everyone knows by now, the unmarried, "never been kissed" woman from a small village was greeted by both the audience and the talent show's judges with derision when she first took the stage. Looking matronly in her somewhat frumpy dress and unkempt hair, her appearance initially elicited smug, condescending and even cruel smirks, smiles and chuckles. What could this "un-cool," plain-spoken woman have to offer? What right did she have to share the stage with all those young, pretty, talented people?

Then Susan opened her mouth and sang. And her voice was so powerful, so achingly beautiful, so full of yearning, that even the usually heartless Simon Cowell was blown away. As were the other judges, and the audience, all of whom gave Susan a standing ovation. And now, online and elsewhere, Susan's voice, and the story of her triumph on that stage, are known throughout the world.

There's even news of a record contract, and the odds-makers who track these things believe she's the current favorite to win the competition. More tellingly, everyone is talking and blogging about her "inner beauty," and how Susan reminds us that we shouldn't judge a book by its cover, etc.

I'm happy for her. She appears to be a solid, decent person for whom, God knows, some good luck is long overdue.

But I can't help wondering, what would have been the reaction if Susan Boyle couldn't sing?

What would the judges and the audience have thought, and said, had her voice been a creaky rasp, or an out-of-tune shriek? Would she still possess that "inner beauty?" Would we still acknowledge that the derisive treatment she received before performing was callous, insensitive and cruel?

The unspoken message of this whole episode is that, since Susan Boyle has a wonderful talent, we were wrong to judge her based on her looks and demeanor. Meaning what? That if she couldn't sing so well, we were correct to judge her on that basis? That demeaning someone whose looks don't match our impossible, media-reinforced standards of beauty is perfectly okay, unless some mitigating circumstance makes us re-think our opinion?

Personally, I'm gratified that her voice inspires so many, and reminds us of our tendency to judge and criticize based on shallow externals of beauty. What I mean is, I'm glad for her.

But I have no doubt that, had she performed poorly, Simon Cowell would be rolling his eyes still. And the audience would have hooted and booed with the relish of Roman spectators at the Colosseum. And that Susan Boyle's appearance on the show would still be on YouTube, but as an object of derision and ridicule.

So let's not be too quick to congratulate ourselves for taking her so fully to our hearts. We should've done that anyway, as we should all those we encounter who fall outside the standards of youth and beauty as promulgated by fashion magazines, gossip sites, and hit TV shows.

We should've done that anyway, before Susan Boyle sang a single note.

Accept The Body You Have

"The robin does not mourn that she isn't a meadowlark. The blackbird doesn't yearn to become an eagle. The sparrow glories in all she is.
Why do you strive to become something you aren't? Glory in who you are. Rejoice in your uniqueness. Be... you. Release your message. Relish in all you are."
Beth Ann Erickson from Writing, Etc, Filbert Publishing

As spring finally melts our chilled exteriors and makes way for new life and new perspectives, I've been thinking about my weight loss journey, in particular this year's grueling months of attempting to stick to a lower carb diet plan while working out at least 6 times a week for an hour or more.
The recession has taken its toll on my family and our finances, and, like many families, we've had to rely on local food banks and the help of friends donating food to make it from week to week. We've not been able to afford high quality protein more than once a week, and instead of the expensive lunch meats, we've had to make do with cheaper, more fatty fare like ham or bologna. Local grocery stores are so high priced with produce that I was beginning to despair of ever being able to afford apples, dates or zuccini again, until my wonderful neighbor told me about DK Market tucked away behind Walmart in Renton. Their prices on produce, like apples and zuccini, are 75 percent cheaper than the grocery stores here in Maple Valley. On our first visit we were able to get two kinds of apples, some zuccini, lemons, salad greens and carrots, as well as dates and figs to help me assuage my sweet tooth.
I have a neighbor who gleans breads and cereals and occaisionally some produce from local stores after the food bank is done taking what they want.
Unfortunately, I am not supposed to consume much bread or cereals, and instead I am supposed to fill up on meat/protein and vegetables, though my Crohns doesn't really gel too well with that dietary regime. I am allergic to eggs, dairy, nuts and onions, as I've said before, and it appears that I've developed an allergy to raspberries and strawberries, as whenever I eat them my face breaks out in a rash. Eggs and nuts are the preferred source of protein these days, along with fish like salmon and chicken breasts, both very expensive items at the store. I've tried eating more soynut butter, since I am allergic to peanut butter, but it doesn't have enough protein in it to really make that much of a difference in the small quantity that I am allowed.
With all that in mind, adding in the huge amounts of stress I've been feeling since my husband has been out of work and my Crohn's getting worse, and you can imagine why I've not been losing weight recently.
I don't think that my eating habits have been necessarily horrible, however, because though I have been eating too many carbs, they've been, for the most part, good carbs in vegan whole grain oatmeal raisin cookies, or maple and brown sugar instant oatmeal packets for snack, or a cup of dates or home made applesauce. Yes, I have transgressed at McDonalds, but only for a fish filet with no cheese or tartar sauce...and yes, I do realize that it's still fried fish and not great for you nutritionally, but it was a cheap lunch with my family, and that's going to happen sometimes, I can't avoid it. I have also eaten Lays baked potato chips, which aren't great for you, either, but they are better than french fries or regular chips.
So while I have failed to be perfect in my dietary habits, I have modified them enough so that I feel that I am eating healthier and better than I would have otherwise.
I also exercise at the wonderful Work It Out Women's Fitness gym 6 days a week for at least an hour, if not 90 minutes to 120 minutes several times a week. I exercise more than anyone in my family, or my neighbors and most of my friends. I am dedicated and persistent about work outs, though I am usually the largest person in the room. I don't let the fact that I can't do some of the moves get to me, either, though you'd think I'd be able to leap tall buildings after two solid years of aerobics and weight training. I just do the best that I can in class and take OTC pain relievers to soothe the aches and pains away after all the muscles I've developed start to scream at me before bedtime.
Yet despite all the hard work, I still don't like my body, and am highly critical of how my sagging, splotchy skin looks, or how my belly still protrudes, though its not nearly as big as it was 50 pounds ago. If anything, instead of making me appreciate who I am, my exercise and eating habits have made me tougher on myself, less likely to appreciate how far I've come and angrier at how age and disease have taken their cruel toll on what little looks I once lay claim to.
So I am opting out of the diet portion of the regimen I've been on for the past 6 months, and I am going to try to just continue to exercise and learn to appreciate my body while forgiving my appetites instead of railing against them for a change. There is too much struggle in my life now, too many places where rejection lies in wait for me, and I am weary of that struggle and its painful blows to my self image.
I will soon be facing an operation on my intestines for a stricture caused by Crohn's Disease, which will certainly have an effect on my upholstered belly. Whether or not it's a good one remains to be seen.
But I want to be able to go under the knife calm and accepting of my guts, and not tense and fearful that I am not reaching someone elses expectations of what I should do, should eat, should be. I need to be able to appreciate what I am, fat belly, sagging stretch marked skin and all. I need to appreciate that I have a husband and son who love me as I am, and not care about some people I knew in high school, who probably are still jerks and snobs, 30 years later. I doubt I will be attending my high school reunion anyway, and I certainly don't need to set myself up for failure by trying to lose a lot of weight before the summer reunion, when most of the people I want to see are dead or wouldn't attend anyway. The one person who knew me in high school has already reconnected with me on Facebook, and that's fine.
So, onward, upholstered belly, and straight on til sunset!

I want a raffle ticket!

Every year I haul my upholstered belly along the 3.5 mile trail in Magnussen Park for the Crohns and Colitis Foundation's "Take Steps" walk. (In previous years it has been held at places like the new Qwest Football Stadium).
Though the walk is a fundraiser for the CCFA, I usually don't bother to try and solicit friends and neighbors for money, because I find that kind of thing repugnant, and also because I dislike the fact that most organizations surrounding diseases tend to spend most of the money raised on administrative costs instead of actually doing something for people with the disease. They always claim they fund "research" into a cure, but do we ever see any real results from that? They also say they use the money for public education and awareness, but rarely does that seem to make a difference for your average Joe or Josephine who suffers from the ailment. When I once contacted the American Lung Association to see if they could help me afford my asthma medications, they laughed. All their money went to admonishing people to stop smoking and "research" into lung disease. My husband once worked for the American Heart Association and related that people would be shocked if they knew how little of the money actually went to research or public education. Something like 85 percent went to administrative costs, which means people in the organization were being well paid just to keep the Association perpetuating itself. I gather the same is true for the United Way and many other charitable organizations. And then there is the question of what would happen if they actually DID cure the disease? They'd be out of business, and these organizations are vast networks that employ many people...they don't want to cure dread diseases like cancer or diabetes, because then they'd be out of a job.
So, I was not going to force myself to put more than a token amount toward the CCFA to help them perpetuate the organization, when it seems obvious they're not coming up with a cure anytime soon. And of course they can't help individuals with Crohn's Disease afford the horribly expensive medication we are required to take every day. Heaven forbid they actually helped people with the disease they're trying to "cure."
However, the CCFA is actually hosting a Patient Education Day this Sunday, and I will attend for free, so I think that is one step in the right direction, getting Crohns and colitis patients together with doctors and nurses who specialize in the disease to help them understand it and perhaps find ways to afford the medications or an operation.
Anyway, I gather that the CCFA is doing a raffle for plane tickets, and I would love to see my mother fly out here to see her grandson, since she hasn't seen him in 5 years.
So here's the scoop, for every 100 dollars I raise, I get one raffle ticket. I figure one is all I need to win!
Please read the information below, and if only 4 people pledge 25 bucks each to my CCFA walk, I can get my raffle ticket. I promise that I won't ever do a pledge request again on this blog for at least another year.
Thanks!
Walk this Spring, Fly this Summer!

Spring is finally here! To honor its arrival, we're giving three lucky winners a chance to put free travel dollars toward a vacation destination of their choice.

For every $100 you raise for CCFA's Take Steps Walk in the month of April, you'll receive a raffle entry to win one of three great vacation travel prizes:
1st prize: Two $250 American Airlines giftcards
2nd prize: Two $200 American Airlines giftcards
3rd prize: Two $150 American Airlines giftcards

If you haven't registered yet, go to www.cctakesteps.org today and click on "Find Your Local Walk" to register for your local Take Steps event. Once registered, you can take advantage of online fundraising by sending out emails through your Participant Center or plan your own FUNdraising event.

What is Take Steps?

Take Steps is a community celebration that raises money for crucial research, and brings us closer to a future free from Crohn's disease and ulcerative colitis. More than 1.4 million American adults and children are affected by these digestive diseases. While many suffer in silence, Take Steps brings us together in a fun and energetic atmosphere, so we can make noise and be heard.

Start raising money today and everyone's a winner. You could win in our raffle, and we'll all be raising money for important research and raising awareness of two diseases that afflict millions of people. Register here:
http://online.ccfa.org/site/R?i=wM2uwXqLrfOwqW7TtRqSqQ..

Raffle Rules: For every $100 that is raised between 12:00am EST April 1 to 11:59 pm EST April 30, you will be automatically be entered into the raffle. Odds of winning are dependent on the number of entries received. The winner will be drawn on or about May 1.

ABOUT CCFA

CCFA's mission is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these digestive diseases.

Information Resource Center: 888.MY.GUT.PAIN (888.694.8872)
Web site: http://online.ccfa.org/site/R?i=hmqJtLnAa0mXfcPZCQEfxw..
E-mail: info@ccfa.org
Phone: 800-932-2423

Angel on one Shoulder, Devil on the Other

If you grew up in the 50s, 60s and 70s, chances are you saw a cartoon or two with the main character, be it Foghorn Leghorn or Elmer Fudd, who would come to some kind of spirtual or physical crossroads in the cartoon and have to make a decision. Just as they were about to do whatever it is that they wanted, an angel would pop up on one shoulder, counseling the gentle, loving and wise choice, while the devil would sit on the other side, urging the cartoon character to do what made him the happiest, regardless of how it would affect others. It was somewhat like having ObiWan Kenobi on one shoulder and Darth Vader on the other. Use your powers for good, or for evil, who do you listen to?
I go through life with my own personal demon, whom I've dubbed FFW, for Fat Failure Woman, always riding on my shoulder, whispering in my head (and shouting when that doesn't get my attention)"Quit it all, stop working so hard, it's not worth it! Pick up that cookie and go to town, girl! You know you want to, and you NEED to relax and enjoy something that tastes good for a change. Come on, it will all be fine, just succumb!" While on the other shoulder, my angel, who looks suspiciously like my instructors at WIO gym, keeps urging me to get a grip and move forward. "You have done so well, why dive bomb yourself now? You can do this! You are not a coward! Nor have you failed at everything you have tried! Don't give up, tough gal!" I like to think that my grandmother Gail and my best friend Muff, both of whom have passed on, are also working angel detail, sending me supportive and loving feelings when I am down for the count, which has happened a lot lately. Today, on the first anniversary of my friend Muffs death, I'd like to think I have even half the courage and fortitude she showed others during her all too short lifetime.
Though I do try to be brave, in the face of this pile-up of one more bit of bad news after another, I have crumbled and given in to my favorite escape of eating sugary foods like home made oatmeal raisin cookies or vegan bannana bread. While I've kept up with work outs, I am sure I've gained back a bit of the weight I'd lost...perhaps 2 or 3 pounds. That sends my FFW into full screech mode, yelling at me to quit while I am behind. "What happens if your gut explodes and you die, will it matter that you have a few extra pounds to lose?" No, probably not. But since I am still alive, I gotta keep trying, I must move forward and learn to forgive myself, and dodge the fear/anxiety that is around every corner in this terrible economic recession.
I've been praying a lot lately, and that is one plan that I will continue for awhile.
I will deal with each days' struggles as they come, and try not to project my fears into a future I cannot know.