Definitely a Lateral Move...

So, it's not really an improvement, but more of a trade-off.  It seems as though the nasty, bitter, horrible Bentyl has kicked my intestines into motion.  I have been able to keep about 80% of my food and fluid intake down, and I'm actually not all backed up like I had been for a while.  I'm tolerating more and more solid-ish foods and am making my minimum protein requirements (60-80g daily) on most days.  Of course, there's a catch.  There's always a catch...

My pain levels are going through the roof.  Especially after I eat or drink, I have this weird pulling/tugging sensation in the center of my abdomen.  The pain seems to be coming from my "stomach" or maybe from where my PEJ feeding tube used to be.  Some times it's just an annoyance, then there's the times where it feels like someone twanged my innards with a big rubberband and started trying to remove my intestines with pliers and a great deal of force.  On good days, I can actually feel the movement of the foods I eat.  On bad days, I curl up into a whiney, crying ball.  The pulling pain seems to get worse if I decide to try and move around, or if I bend to pick something up.  I've actually started taking my pain meds as often as prescribed, hoping that if I keep medicated it will keep the severe pain in check.  No such luck.  I'm terrified that I'm going to end up back in the hospital.  I'm trying to stay stoic, but it's getting more and more difficult.  I don't have another follow-up with my surgeon until July 11th, so I'm at least trying to hold out until then.

I do not want to go back to the hospital.  I would appreciate the stronger meds, but I really don't want to spend another holiday walking around the 7th floor of the hospital in a drafty, ugly hospital gown.  I really don't want another surgery, but it's starting to look like I won't have a choice.  I can usually put up a pretty good front about the whole pain thing, but this is getting worse and worse and I'm not sure I can keep up the "I'm fine" thing too much longer.

*sigh*

Some People Just Need a Good Ol' Throat Punch...

If I have to read one more post, email, or accusatory private message with the phrase "easy way" things are gonna get ugly.   I'm not generally a violent person, I am in fact an angry person.  I  do not mind simple questions.  I don't mind when people ask my opinion.  I do mind when people decide that I'm lazy and "took the easy way out by having surgery."

At the risk of offending any readers, the only answers I have for this accusation are both two word solutions:  Throat punch or "Fuck you."

I understand that some people are always healthy, have been raised healthy, and are perfectly fit.  I understand that some people decide to be Born-Again-Fit.  I also understand that some people are lazy and unfit and do, indeed, look for that quick fix.  We're all different, we all have different struggles, blah blah blah.

I decided I was tired of being fat.  I was in Weight Watchers for years, I followed medically supervised diets with an endocrinologist, I did all the fad diets starting at about age 10.  My mom decided that one summer I would eat nothing but canned tuna.  She decided that one year, before every meal, I'd have to eat this "candy chew" that tripled in size in your stomach so you couldn't eat as much.  She fed me grapefruit and Sweet N' Low, yogurt, and salads.  We made KoolAid with NutriSweet and chewed gum instead of eating.  We followed diet plans out of magazines and the backs of tabloids.  We fasted and walked.  Everything that my mom could grasp to for hope of having a thinner child, that's what we did.  Did any of it work?  No, of course not.  That's why we had to keep trying.

Most people who are overweight, or the new medical catchphrase "obese," have been through their own gamut of these challenges.  I finally decided I was tired of chasing my tail.  My insurance was offering to cover gastric surgery (well, 90% of it), so I finally looked into it.  As an added bonus, the docs found stomach polyps during the pre-surg testing, so I could lean on that as a reason and excuse.  There's a certain shame that the general population hands to gastric patients.  Like "You want surgery to be thin, how dare you!"  So I convinced myself that I was having the stomach polyps removed and as an added bonus, I'd have a gastric sleeve!  There are still some people in my life that don't know I chose to have gastric surgery.  Some people that I know would not be supportive.  I don't need that.  Especially now.

Society tells us that gastric surgery is the easy way out.  That the patients of bariatric surgeons are lazy and unwilling to work for their fitness goal.  Society shames us into a hiding of sorts.  Gastric surgery is usually not the result of a need to be "prettier" or a superficial want for attention.  It's the last resort to get rid of things like diabetes, sleep apnea, high blood pressure, and the overall trapped feeling of being obese.  I didn't want to be 100 lbs.  I wanted to be healthy.  I wanted to be able to keep up with the kids.  I wanted to make sure I could attend graduations and grow old with my husband.  I knew that being over 400 lbs would, in all literal matters, eventually kill me.

After bariatric surgery, the patient has to be more dedicated than pre-surg.  Especially after so many complications.  I have very little leeway now.  I have very few choices I can make.  I can't have just one more cookie.  Hell, most days I can't have ONE cookie... I can't take one more sip, I can't have one more drink at the bar.  If I make the wrong choice, I will be sick for hours, or I may be dead.  Since I have no stomach tissue (well, I have a 1 cm band at the end of my esophagus), I can not have alcohol.  I no longer produce the enzyme needed to break down alcohol, so I would have one drink and may just poison my liver enough to kill me.  I can no longer make bad choices.  I have no choice now.  I've been Clockwork Orange'd.  I must do what I'm supposed to, or I get horribly sick.

Even patients that have no complication still did not take the easy way.  Major surgery is rarely easy.

There are post-surg patients that are not ready for the level of commitment.  I see posts on the boards about people slipping into bulemia (oh, I ate something I shouldn't have so I just made myself throw up), about people not ready for the dedication (I'm 2 months out from my sleeve and all I eat is cookies), and people just not taking advantage of the tool they've gotten.  This irritates me to no end.  I want to smack people.  Dammit, you still have a choice.  I DON'T HAVE THAT ANYMORE!!  I get jealous.  I just want to shake people.  It's the patients that were truly not ready that give us all a bad rep.

I get messages often about taking the easy way out, sometimes I answer them.  Sometimes, I educate them.  Sometimes, I cuss at them.  Most times, I just send them a link to my blog and say "If you really think I have it easy, email me when you're done reading."  I rarely get a reply.  Makes me wonder if my blog made them at least stop and think...

I'm glad you're losing weight the natural way.  I'm glad you have that ability.  I'm glad you're 120 lbs and have flat abs.  I'm just trying not to starve to death.  I'm trying to have enough calories every day so that I can get off of the couch.  I'm trying to wait for the dizziness to stop so I can go make my family dinner (that I cannot eat).  I'm trying to stay hydrated, and get enough protein in so that my hair will stop falling out and my fingernails will stop breaking.  Somedays, I'm just trying to think positive so I can keep going...

If you still think this is easy, you really have no idea...  If I had the strength, I'd punch you in the throat.

Yay! Even more TMI...

So, after my first encounter with the evil Fleet bottle and a brief few days of feeling better, the feeling better stopped.  After another week of no BMs, I had to resort to the same measures.  This time, it didn't help as much.  I still had the "brick in my gut" feeling afterwards.  After talking to the doc I realized that I had another intestinal impaction.  He said that if the impaction was in the beginning of my intestines, that the Fleet might not travel that far to relieve it.  He suggested I try some Magnesium Citrate.  Soooo, off to the pharmacy...  If you've never had the pleasure of trying it, Magnesium citrate is a 10oz beverage that is usually available in either lemon or cherry flavors.  My pharmacy only had lemon, so that's what I got.  I put it in the fridge while I tried to figure out exactly how my 2 oz "stomach" was going to ingest 10 oz of this med.  The bottle recommends drinking the entire bottle for patients over 12.  Well, since my stomach is tiny, maybe I can just drink half of a bottle...

Tuesdays morning I got brave.  I took the bottle out of the fridge, steeled my resolve, and started sipping.  It wasn't as bad as I thought.  It just tastes like very salty lemonade.  Not delicious, but tolerable.  After about 2 oz, I started feeling very full and a little queasy.  I put the bottle down and headed for the bathroom, figuring if I was going to heave, I might as well not have to clean it up... then the gut started gurgling... then the pain started.  Imagine if you will, a cinderblock moving slowly through your intestines.  Yeah, that's what it felt like.

Without grossing you out too much, I was in and out of the bathroom every 30 minutes for the next seven hours.  Then it was once an hour.  Then it was a few times over night.  Then it woke me up this morning.

Needless to say, the problem is now fixed!  Whoohooo!  I feel like I ran a marathon yesterday, but my gut feels soooo much better.  I'm exhausted.  I'm spending today relaxing on the couch.

I'm watching a talk show about Pro-Ana lifestyles.  I kind of relate.  I don't understand how 70 lb girls think they're fat.  I was over 430 lbs at my heaviest, so I guess I'll never really relate, but I understand not liking food anymore.  Food has been mean to me.  Puking sucks.  But man, if I could eat one, I'd love to have a sandwich.  When this whole mess started I had dreams of being thinner.  I never wanted to be "skinny."  I just wanted to be thinner.  My goal weight is still over the doctor's recommended guidelines.  I think 150 would be nice.  The guidelines say I'm supposed to be closer to 130 to be at a healthy weight for my height.  I'm still fat, and I'm weirded out by the fact that I can feel my ribs and my collarbones.  Never in my adult life have I been able to actually feel my bone structure.  It's weird.  I can't imagine being 70 lbs.  I just want to feed these people sandwiches.  Sandwiches are delicious.  I can't eat a sandwich, dammit, but they can.  I often think that I'm stuck in the middle of a medically supervised eating disorder.  I hate eating and I puke a lot.  None of this is really of my own choosing.  I see a lot of posts on the surgery support boards that sound like people are choosing and ED mindset... quite a few people have posted that they eat food they're not supposed to and then just induce vomiting to "get rid of it."  This pisses me off to no end.  I have to fight to keep my food down.  I have to struggle to get my calories up every day.  I want to find a way to slap people through the computer...  If you're doing this, stop.  If you can't stop, get help.

I'm going to eat half a popsicle now... Someday I hope to be able to eat a whole one... and I'm definitely going to try and not puke...  Mmmmmm.... popsicle....

It's partly my brain's fault....

Yep.. I blame my brain.

I went to see the surgeon on Wednesday for my Gastroparesis follow-up.  I let him know that the Reglan was not as effective as he had hoped it would be.  It didn't taste too horrible, but I was still getting sick about 50% of the time.  Me and my big mouth...  So, he switched my meds from Reglan to Bentyl.  This is a GI anti-spasmotic, supposed to even out the motions of the whole GI tract.  And it tastes horrible.  It's the same color as Reglan, and just about the same texture, but it just tastes like bitter, and leaves a nice coating of nastiness that doesn't seem to wash off.  It make everything taste horrible for the next 30 minutes.  I've tried drinking a chaser, I've tried mixing it with juices, I've tried brushing my teeth.  Nope.  Everything is bitter and nasty after Bentyl.  On the upside, I have yet to vomit up the Bentyl, and it seems to be working as well as the Reglan was.  So, I'll take it.  It's not any worse than it was.  I'm good with that for now.

I explained that I was feeling "full" after just a bite or two of food.  My doc asked if I was "full" or just "done."  I thought that was a weird question until I thought about it.  Yep, I was feeling like I'm done.  Not really physically full.  He explained that since I've been sick for so long, my brain has now wired me to believe that after two bites, I'm pushing my luck.  The more bites I take, the more likely I am to get sick.  My brain says it would rather starve me than have me puke anymore.  So now I have to fight my brain and try to eat at least 1/4 cup of food at a time.  My brain doesn't want to eat anymore.  Stoopid brain.  I'm going to stab it with a Q-Tip if it doesn't start cooperating with me...

My abdominal pain is still rather unexplained.  He said perhaps after the 5 surgeries and all the poking and prodding and cutting I've been though, I might have some kind of over-scarring or an adhesion that isn't showing up on the scans.  If my pain continues, he's thinking of doing an abdominal exploratory surgery to try and find the source of my pain.  Since it is rather localized in the center of my abdomen, he's hopeful that it won't take too much exploring.  In the meantime, I was told to take more pain meds.  I got another lecture about being "too stoic" and that taking pain meds is not a weakness, blah, blah, blah.  He did, again, add that I'm the only patient he's ever had that has to be told to take MORE narcotics.  Usually, he has the patients that take too much narcotics.  I reminded him that I do not want to become one of the narcotic addicts.  That scares the beejeebies out of me.  I'd rather be in pain and getting the laundry done than be pain-free and drooling on the couch.  He gave me a refill for my pain meds and instructed my husband that he's allowed to spike my water now and then...  Cripes.

I've been adventurous lately and delving more into solid foods.  Mushy stuff is boring me to tears.  I figure if I keep it down, great.  If I don't, at least I got to enjoy it the first time.  I'm gonna puke now and then anyways, I might as well enjoy some food when my stoopid rebellious brain will let me...  Now if I could just eat some ice cream...  Man, I miss ice cream....

Rambling, Rantings, and a Little TMI...

My next surgeon's appointment is two days away.  I seriously don't know if I can do this anymore.  I know, I don't have much choice, but I feel like a whiny baby sissylala.  To use a much overused cliche, I'm sick and tired of being sick and tired.

I'm taking my Reglan like I'm supposed to.  My gastroparesis is still present and accounted for.  I do keep more food and fluids down that I have in the recent past, but I'm bringing up about 50% of my intake (as opposed to about 70% in the past).  I've gotten so tired of trying to replace what I've lost that I've instituted a "Three Strikes" rule with my puking... I'll choke it back down twice.  If it comes up a third time, then I'll spit it out.  Most things seem to stay down the second or third time I swallow them.  It saves me time and energy.  It sounds horrible, but if you figure I don't really have stomach acid to contend with, and things come back up relatively soon after I eat or drink, it's not as bad as it sounds.  I'm keeping track of my food and fluid intake, but I still can't get my calories up as far as I'd like to.  I'm having a really difficult time with textures, and right now, protein shakes are not my friend.  On a positive note, I can eat more solidish foods now as long as I remember to take my enzyme tablets.  I keep a bag of beef jerky around, that seems to be my best bet for a high protein snack on a good day.  I'm still living mainly on a soft diet, but every now and then I need to attempt something solid...  My "stomach" seems to top off at about 1/4 cup of food or fluid at a time, so I feel like I'm constantly needing to eat to keep myself fueled.  I'm not getting enough calories, so I'm exhausted most of the time.  I just keep pushing through.  What else can I do?

On the other end of things, I did break down and get some Miralax.  The first dose worked a little bit.  It wasn't too bad mixed in with some Crystal Light.  Miralax just has a faint "Elmer's glue" smell to it, but doesn't seem to taste like much.  I took a dose every day for a week. The first dose worked overnight.  A little.  Then nothing.  I've just been overly gassy.  Miralax just makes me fart.  Oh, great.  After a week of Miralax, my abdomen was soooo uncomfortable.  I completely felt like I was full.   Like my eyes were going to turn brown.  THAT kind of full.  My hubby threatened that if i didn't have a BM soon he was gonna make me go to the emergency room since I was in pain.  That was the point where I gave up my last shred of dignity and went to the store for that evil green Fleet box.  I figured that's what the hospital would do to me anyways...  So, without too much TMI, that finally got things going.  Man, do I feel soooo much better now.  I am going to talk to the doc about it and see what I can do to prevent that from happening again.  I know that my pain meds are supposed to constipate, and the high protein diet can do the same.  So yeah, let's not get stuck in that situation again.

So, I'm full of sad, full of bitchiness, and full of tired, but at least I'm officially no longer full of shit.... *rimshot*  ...thank you, I'm here all night.  Enjoy the veal.

I'm still fighting with Social Security.  They don't think I'm disabled enough.  Apparently puking all the time doesn't count.  I'm still on disability from work.  I miss working.  I miss being a productive member of society.  Being stuck at home makes me sad some days.  I just feel useless.  I want this to be over.  *sigh*

Anyways, I'll post an update with what the surgeon says later this week.  Hopefully, I'll have some kind of good news.  It's about time for some good news...  Something.  Anything.