Wednesday, December 24, 2008

Real quick update from Scott's crackberry. The main polyp was sucessfully removed. We had a minor scare afterwards and I was admitted for overnight observance. I was doing better this morning and was discharged. So now we are on our way to FL! I'll fill you all in on the details later, but for now it is FL or bust! Happy holidays!

Friday, December 19, 2008

No, thank you

  I just wanted to take this post to thank you, my beloved readers.  Without you, Stolen Colon would have no point.   It is nice to have someone there to "listen" to me rant and rave, to provide support, offer advice and to just laugh at (oops I mean with) me.  It is your comments, letting me know you are out there listening, that help keep me going.

The blog averages around 150-200 hits day,  Holy crap?  How am I that interesting?  All the same, thank you.  You have helped to make this journey easier.   

I always appreciate all the well wishes, good vibes and prayers.  It is nice to know others are thinking of you and hoping for the best.  So this big and heart felt thanks goes out to all the people I have never met in real life, the family members I have drifted from, the long lost friends I had lost contact with, the second cousins I haven't seen in 25 years, my support group of "nesties" and "P&Fer's", and my new online family of FAPers.   

I hope everyone has a warm and wonderful holiday.  I will post when I can.  Hopefully, I will be able to update after the procedure at Mayo and let you all know I will be getting to keep my digestive organs, for a few more years anyways.  

Peace Out.  

Thursday, December 18, 2008

Figures

As of last Tuesday, I had to stop all NSAIDs (aleve, tylenol, etc) due to bleeding risks during next weeks procedure.  And wouldn't you know it, I got a POUNDING headache.  I guess that's life.  I have completely slathered my forehead in HeadOn and I'm pretty much inhaling peppermint oil.  

I'm getting pretty excited for Mayo.  I want this done with, all behind me.  I am ready to move on!  Yeah I know I'll have to have screenings for the rest of my life.  But, I want these polyps out of here.  No more worry, if they are growing, invading my bile ducts.  No more wondering if I look a little yellow today (jaundice is a sign that the polyps have invaded the duct).

And. . . wait for it. . . it is starting to looking like we might make to Florida after all!  I really hope I didn't just jinx us. Things are looking good for the Stolen Colon Fam.     


Tuesday, December 16, 2008

One Week Out

This time next week, those buggers in small intestines will be meeting their match, hopefully.  I am pretty excited for Mayo.  We have found a doggie daycare that Gracie can go to on the day of the procedure.  Since, it could end up being a long day at the hospital, we didn't want to leave Gracie alone in the hotel all day.  We also have arranged for Mr Dexter Cat to have a nice holiday vacation at my Mother in law's.  He loves Becky, and he will relish in some quiet time way from his always pestering little sis.  

Just in case, we are packing some of warmer clothes.   Um, no, not for Mayo.  The high there today is only  6˚, brr.  But maybe, just maybe, we'll make the 30 hour hike to Fl to see my family.  (Where it is a toasty 84˚ today.  Much more my style!)  

Here is to hoping!  

Monday, December 15, 2008

All I want for Christmas

Dear Santa,

I have been a good girl this year (well at least most of the time), and all I want for Christmas this year is for the doc at Mayo to remove the polyps in my duodenum.  I really just want to avoid or at least postpone having the pancreatoduodenectomy (I am no longer going to refer to it as "The Whipple", as that is just too whimsical sounding for such a serious surgery.  Very misleading.)  

I promise to leave you some of my awesome peanut butter cookies, and I guarantee they will be the best peanut butter cookies you will have this year.  With all of my crazy baking while in recovery mode I have perfected the peanut butter cookie.  Chunky peanut butter, more peanuts, salt.  Ah, the perfect mixture of salt and sweet.  

Anyways I digress. . .  So, if there is anyway you have some pull with the people upstairs, I'd really appreciate it this year.  

Thank you.  

PS. Your elf that was covering for you was a bit scary.  He freaked Gracie out.  First he hated puppy kisses, and then he told Gracie he'd mate with her.  So, um, I just thought you should know.  

Friday, December 12, 2008

Sexy Specs

I feel a bit better after my pity party yesterday.  It helped that a little elf gave me an early Christmas gift, an Ulta gift card.  Retail therapy can lift even the most dire spirits.   I decided I need a new nail polish, so I picked out a color that matched my Ebenezer attitude.  Baby It's "Coal" Outside by Opi.  A sparkly charcoal that throughly matches my mood.  

Also I picked up my new sexy specs yesterday.  Last week I paid the optometrist a visit.  After many arguments with Scott over my poor passenger seat direction giving, I thought maybe I should have my vision check.  Especially with the road trip looming in our near future.  

Last weeks visit to the eye doc turned out to be quite the event.  Besides finding out my eyesight is pretty bad and that I should be wearing glasses all the time, especially while driving.  (The doc was surprised I was able to pass the vision screening at my last license renewal, I didn't inform I got lucky guessing half the letters.) I also learned that I have some manifestations of FAP in my eyeballs.  (Can I please escape all things FAP for one week!?) Turns out I have a few CHRPEs (stands for Congenital Hypertrophy of the Retinal Pigment Epithelium.  Yeah, CHRPE's, pronounced chirps, is much easier on the tongue) on each of my pretty eyeballs or actually my retinas.  CHRPEs are much like freckles or birthmarks on the retina, and are present since birth.  While all the reading I have done on CHRPEs, indicates they are a benign condition, my eye doc wasn't as laid back.  He talked me into getting these crazy pictures taken of the back of my eyeballs, so we had the size and location of the CHRPEs on file.  He was concerned if they grew or changed in anyway it would be a sign they are cancerous.  So basically, he said it is now really important to go to my yearly eye doctor appt. if nothing more then to monitor these eye freckles.   Oh yeah, and that super high tech eye ball picture taking, think insurance covered that?!  Of course not.   

After learning about my new FAP apparition, I had to pay.  (I am seriously wondering what is the point of eye insurance at this point)  As I whipped out my wallet to pay, I accidentally threw my back-up undies across the office.   Life with a j-pouch doctrines that you  must carry a back up pair of underwear with you at all times.  You never know when you might read the new plumbing's signals wrong, and I have learned it is always better to be prepared.  Over the next 30 seconds (which felt more like 10 mins.) I had to decide if I wanted to ignore the neon pink under-roos that were now sitting 15 feet away, or calmly say "excuse me" and saunter over to them and pick them up.  If you're curious, I ended up embarrassingly walking across the office and cramming then back into my purse, the whole time with a matching pink face.  

Thursday, December 11, 2008

Bah Humbug


Two weeks until Christmas.  It sure doesn't feel like it.  This suppose to be the "most wonderful time of the year".  I'm just not feeling it this year.  There is no holiday spirit at the Stolen Colon house.  No tree, no lights, no holiday music, no gifts. . .  What's the point?  We'll be at Mayo over most of the holiday and my medical b.s. has eaten up all the finances that would have went to Christmas.  Don't mind me, I am just throwing myself a Scrooge style pity party.  Originally the plan was to drive to FL, to spend the holiday with my family.  We have only spent one Christmas with my family in the last 7 years.  I had high hopes that after the Mayo procedure, we could hop in the car and make the 30 plus hour trek to FL.  But yeah, once I quite dreaming I realized that A. we might not get the a-ok to leave mayo in time and B.  that it is contingent of Scott's job letting him have more time off.  Ha.

And yes I realized I lied to you all yesterday.  I had intentions of doing another post, but my pity party got in the way.  

Today's picture is from Christmas at the lake last year.  

Wednesday, December 10, 2008

The Final Exam

Here are a few pictures from our "final exam" on the last day of puppy kindergarden.  




Congratulations Miss Gracie!  I'm proud of you, now on to the next level.  


*There will be another post later today.  

Tuesday, December 9, 2008

Cue the "Pomp and Circumstance"

Last night was graduation from puppy kindergarden.  Gracie passed with flying colors (of course).  Originally, I had dreams of doing therapy work with Gracie.  I saw Gracie and I visiting the residents of the hospital, especially children, and sharing some boxer wiggles and snuggles.  Ever since my stints in the hospital, it was something I wanted to do.  I pictured Gracie and I going through all the different levels of obedience classes and eventually ending with being certified as a Therapy Dog.  But, as Gracie's personality has blossomed, I'm a realizing that therapy work might not be her cup of tea.  She is a constant bundle of bouncing electricity.  Being calm is not her strong point.  Now something more energetic like Flyball might be more her style.  (Video below has sound, just a FYI in case you are pretending to be working)  
I guess I'll just have to wait till I adopt my over looked badly misunderstood rescued male pittie to do therapy work with me.  

In other news, Bentyl is my miracle drug.  The difference is day and night when I take it.  When I don't take it I have very painful spasms and cramps in the j-pouch.  Constant running to the bathroom with the sense of extreme urgency only to pass what is the equivalent of mouse turds.  This will go on all day and night, equaling well over 30-50  trips to the loo.   But, when I do take it regularly I'll go to the bathroom only 6-10 times a day and 1-2 times at night, fully emptying every time.  No cramps, no spasms, no urgency.   I love Bentyl.  

Wednesday, December 3, 2008

Holiday, what?

Recently I spoke with a nurse at Mayo about my upcoming holiday appt. The plan is to meet with Dr Gostout on Monday, the 22nd, to go over everything.  Then Tuesday, the 23rd, is the procedure.  The Doc is going to do an ERCP to make sure I am a candidate.  And if he says all is go, then he will continue on and attempt to remove the polyps.    All of this will be done under general anesthesia (like I had for the two main surgeries) instead of the sedation I am use to receiving for scopings.  

I stumbled upon this article about Submucosal Endoscopy with Dr Gostout.  If I am not mistaken, this is the procedure he is going to attempt with me.  It is fairly interesting.  Pay particular attention to the side pictures and text and the text under the heading "A Shift in Thinking".  

We will be staying in Rochester from the 21st through the 24th.  The doctor wants me to stay in town for a minimum of 24 hrs after the procedure in case of complications (but I am due to be  complication free, damn it).  I have a feeling this will be the extent of our holiday this year.  I'm working on  trying to find things for us to do/see/eat to help keep this from feeling like a ruined holiday.   So, if I have an Minnesotan readers out there, any must sees or restaurant reviews?  

Well, I must get back to Gracie.  It is cram time.  Graduation from puppy kindergarden is next week and we just hit the adolescent "I-do-what-I-want" and "I-can't-hear-you" phase.  
Dear Anonymous,
Thank you for your concern for Gracie.  I feed meaty raw bones as treats with the consent of my vet.  As long as bones are NOT cooked and not weight bearing bones, they are perfectly fine.  When they are cooked is when they are dangerous.   However, I do not feel that my blog is the right forum to debate canine nutrition.  I invite you to email me if you would like to discuss this further.  I have many different websites and authors I could pass on to you if you are interested in learning more about raw feeding.

Thank you.
smahyes1@gmail.com

For the rest of you, I'll do another post later today. 

Monday, December 1, 2008

Thanksgiving Recovery

I hope everyone enjoyed their holiday weekend.  Ours went well, but all that cooking and hosting really wore me out.  I am also paying the price for the over indulgences too.  I just took 2 Bentyls (the antispasmodic) and I plan to have a couch day (I also need to finish this post before the bentyl kicks in and I start getting loopy).   It was all worth it though.  On a whole the day consisted of a lot of eating, Playstation football and some more eating.  And I got to feel like a real person again.  I ate normal food, had no major pain and I even got to indulge in the bubbly.  Everything was going smoothly in the kitchen, until I ended up taking a Bentyl, and then the next thing I knew the gravy exploded and I knocked over the 5 Lb bag of flour.  Hey, at least I was entertaining.   
  
 
Little Miss Gracie Mae got to enjoy the holiday too.  She had her first raw turkey neck.*  I guess even dogs can go into post-Thanksgiving food comas.  



*Believe it or not but raw meaty bones are perfectly fine to give to dogs.  Just never ever give cooked bones, they splinter and can do major internal damage.  

Tuesday, November 25, 2008

cooking, cooking and more cooking

Whoa, the day just escaped me!  Must be all the cooking I am doing. Thanksgiving is at the Stolen Colon's house this year.  Since I'm no longer a ball of energy, I am trying to do most of the cooking in shifts.  I do plan to enjoy the holiday feast, well maybe not the feast part.  I can eat everything except the mashed taters and green bean casserole, due to the dairy in them.  I also have to eat very small amounts of food at one time.  I guess I'll just be enjoying many mini thanksgivings through out the day!  That actually doesn't sound too bad.  

I met with my colorectal surgeon and his nurses today.  Yup nurses, I got two of them since, as Dr. Kim put it, I am a mystery.  Yeah! I stumped one of the premier colorectal surgeons.  And I didn't even realize I was having problems. . . well kind of.  Starting in the evenings I get these intense cramps.  It starts by the old stoma site and migrates to the j-pouch area.  And it will feel like I have get to a toilet. . . immediately.  Once I sit on the throne, I only seem to produce a few mouse size turds.  Sometimes this will go on for hours, and in the worse cases, through out the night.  Eventually, I'll have a larger liquid movement and the cramping/intense urgency will disappear and I can fall asleep.  I assumed (wrongly so) that this was just life with a j-pouch, and that my body was adjusting.   Well not so much so.  

After having a half hour conversation with the Doc and nurses (wow!  I got is full attention of 30 mins, unbelievable!)  I left with a prescription for Bentyl, an antispasmodic and orders to irrigate the pouch, daily.  (I'll save you from the details on this. For now anyways.)  I also was given strict orders, to call his nurse if I have any discomfort and not to just wait till my next appointment (which is in 5 weeks! Hopefully this means I get to go a WHOLE month before going back there.  A new record. Um, I hope I didn't just jinx myself.)  

And for today's tidbit Thankfulness. . .  I am thankful for how blessed I am.  Through this whole ordeal I have met a bunch of different people with different illnesses.  I am constantly reminded of how lucky I am.  In the whole scheme of things, I'm not sick.  Yeah I lost an organ. . . but I avoided chemo right?!  And I found a doctor who is going to try and save a few more organs and help me escape chemo again!  The crap I deal with now is really just small potholes when compared to the craters that others have to deal with on a daily basis.   

Just the fact that my FAP was diagnosed when it was is something in of its own to be incredibly thankful for.  Just one more month could of made a world of difference.  

Monday, November 24, 2008

Bittersweet

Had an appointment with my primary doctor this morning.  Partially to touch base, he likes to stay involved in my care, and also to discuss my birth control options.  Prior to the 
beginning of all this madness, we were getting ready to expand our family.  But now knowing what we do about FAP and that any future children would have a 50% chance of having this disease our procreating has been put on hold, indefinitely.  Those of you who know me, know how badly I want to have children.  Out of everything I've been though, this is the hardest part.
And before you comment that:
  • "It's only a 50% chance." or
  • "cancer research has come so far, imagine where it will be in another few years." or
  • "you have FAP and you're ok."
I have already thought about these things.  I am not saying that what we are choosing to do is written in stone, things may change.  But right now, I don't know how I could knowingly risk putting a child through this.  So far, I am very lucky, it can be a lot worse.  
And yes, I know there are other options out there for adding on to your family.  And when we are ready we will explore them.  But one step at a time.

On another note, since this week is Thanksgiving, I wanted to include in each post something or someone that I am thankful for.  There really is so much that I have to be thankful for.  I am very grateful for all of my doctors, especially my primary, Dr Buckler.  Dr Buckler was the 1st doctor in 7 years to actually listen to me.  He was the one who referred me to the GI for a colonoscopy.  He didn't laugh, placate me or not believe me when I told him I had blood in my stools.  Dr Buckler, has also visited me, on his own time mind you, every time I have been in the hospital.  He is always making  sure that all of me, not just my GI tract, is being taken care of.   Thank you Dr Buckler! 

* Today's picture is of Gracie in her first snow.  At first she was unsure of this white cold stuff but she loves it!  It was near impossible to get a picture of her as she just kept sprinting through the yard.  

Thursday, November 20, 2008

It's official, like referee with whistle. Preach*

Well I got the call and it's off to Mayo I go!  Monday, December 22nd is the consult and then Tuesday the 23rd is the procedure.  Yahoo!  What a relief to have an actual date in writing.  And maybe just maybe I'll be able to be somewhere else for Christmas (like I dunno maybe somewhere a bit warmer. . . Florida?**).  I think I'll have to get the all clear from the doc to travel that far right after the procedure (I believe there are some bleeding risks) and Scott's job will have to cooperate too  (now that is going to be the really difficult part).   But who knows hope has now been restored in the Stolen Colon house!  

*I can't take any credit for todays title.  Credit belongs to the Snoop d o double g, as he left it on someone's voicemail.  
** for non family readers, my parents live in Fl, hence the draw to be there for the holidays beside the warmer weather.  

Wednesday, November 19, 2008

Nothing to report

Nothing really new and exciting to report from the Stolen Colon household.  We are still waiting for the official date from Mayo Clinic.  Right now they are trying to arrange a date where not only does the doc has two back to back slots open (one for the consult and one for the procedure)  but anesthesiology is also free.   The plan is for the doc to sedate me and exam the duodenum via endoscope (camera down my throat).  At that point he will be able to determine if these polyps can be removed endoscopically and if so he will attempt to remove them.  That is really all I know,  hence the point of the consult before hand.  Last time I talked to one of his secretaries it looked like this was either going to happen December 24th or mid January.  I don't know which is better.  The 24th would at least fall under this year's deductible, but heck it it's Christmas Eve!  Not exactly where I wanted to spend the holiday, but if it means these polyps can get taken care of then I am all for it!  I wonder if Santa will be able to find me in Minnesota? 

Friday, November 14, 2008

5 on Friday

Foods I miss dearly.  
  1. Cheese.  Warm  creamy brie, tangy feta, smooth goat cheese on a crisp cracker, stringy mozzarella a top a pizza.  I could go on and on. . .  
  2. Milk.  Cool crisp glass of milk with a warm cookie.  One side effect of the surgeries is that I am now severely lactose intolerant.  You never realize how many foods have dairy in them until you have to avoid them.
  3. Ice Cream.  Soy Ice Cream just doesn't cut it.  It is really just a sad joke.  I almost cried while watching Scott enjoy some Ben and Jerry's Chubby Hubby the other night.  
  4. Vegetables.  Man, what I wouldn't do for some roasted broccoli or asparagus right now.  Hopefully down the road, I will be able to add them back in.  But for now they cause more pain then they are worth.  
  5. Italian Food.  I can't handle any tomato products or dairy.  Think about it, that rules out almost all Italian food.  (Incase you're wondering, tomato burns like no other)

I want to open the FAQ back up. I plan to incorporate them into a weekly Five On Friday.  So. . . let it flow, let yourself go, slow and low, that is the tempo.  (Brownie points to anyone who can name that tune, and Andy you don't count cause you are a freak of nature at this game.)

Thursday, November 13, 2008

Colondar

Struggling with what to get someone this holiday season?  Why not the 2009 Colondar?  This calendar features 13 incredible individuals, all survivors of colorectal cancer and all diagnosed under the stereotypical age of 50.  Check out Mr February, Jon is a fellow FAP'er.  And while you are at it check out last years hot Miss August, Becca, another Fap'er.  

Tuesday, November 11, 2008

Just a little update

Wow, do I actually have a week without a doctor's appointment? Amazing.  Last Friday's scope and dilation went well.  No major inflammation, and he dilated even though he said I didn't need it.  My  veins are getting harder and harder to get IV's in though.  I'm average 4-5 pokes per visit.  I've also developed quite a tolerance to the sedative.   So now they have to give me the whole shebam to knock me out.  Unfortunately that means I usually have no memory of at least half of the day.  So, if I talked to any of you last Friday, yeah I don't remember it.  Hope I didn't say anything too stupid, but if I did it is so not my fault.   I finally said the "magic words" to my surgeon.  I informed him that some days are so bad that I really want my stoma back.  Well you would have thought I insulted his mother.  Right away he was all "there are so many other things we can try first".  Two of the many being a defagram (xray while pooping.  Now that sounds like a good time!) and a sphincterotomy (basically cutting of the sphincter, another good time.)  So, I guess by telling him I think his work may of failed, I lit a fire under his booty.  
We also got some blood tests back to check my liver function.  All is good.  I am anemic, but that is to be expected.  And we are still awaiting a call back from Mayo Clinic.   I am so nervous that this doctor is going to tell me he can't help me.  I try not to dwell on it, but that is easier said then done.  

Thursday, November 6, 2008

To Live Without


***Today's post is rate MA for mature audiences only.  It may contain emotions and facts not suitable for all readers.   Reader discrection is advised.***  

While sitting at my colorectal's office waiting for the doc, I found myself fascinated with the poster of the digestive system.  I ended up playing a game of seeing if I could locate the organs that I might lose if the endoscopic specialist at Mayo can't help me.   I decided that my insides would be pretty empty.  I've already lost my colon and rectum (and appendix of course, can't lose the colon and keep the appendix.  It would be like amputating the foot while keeping the big toe).  I tried to picture what my insides would look like if I lost my duodenum, gallbladder, part of the pancreas and part of the stomach.   Then I found myself concentrating on the digestive organs that would be left, it didn't seem like much.  Amazing that we can lose these organs and still manage to live.   
On a related note, I am heading back to the hospital tomorrow AM.  Doc wants to have another look around the pouch and possibly do another dilation.  We believe the lovely stricture that landed me in the hospital a few weeks ago is starting to reform.   We are hoping this procedure will help to get rid of the abdominal cramping and help regulate the number of times I go.  Right now, I vary from not "going" for a day or two to the dam breaking and going well over 30-40 times.   FYI both extremes are VERY uncomfortable in their own way.  

Tuesday, November 4, 2008

Bad wifey

Sometimes I feel bad for Scott,  for getting stuck with a defective wife.  For example, last weekend we had tickets to the State game and we knew of a cool tailgate.  But, my abdominal cramping kept us from going.  Then today we had to cut our walk short, again because of my pain. Also it looks like my medical bullshit will eat up all of his time off again next year. Hey honey, how about for a vacation we go to Rochester, Mn and spend all day in a doctors office? Sounds like fun.   I feel bad.  He doesn't deserve this.  

Speaking of Minnesota,  Mayo Clinic now has my file and we are waiting for a call back to schedule an appointment.  I'm not holding my breath.  I know the next available date the doctor has open isn't until Christmas.  So in the meantime, I am trying not to dwell in the "what ifs".  Easier said then done.

Puppy kindergarden was a blast last night.  And Gracie was the cutest one there.  Yeah I'm not biased or anything.  

Monday, November 3, 2008

The good, the bad and the Gracie

So far I've had an interesting morning.  First the good news:  The polyps in my duodenum ARE NOT worse then what we had expected! Yahoo for positve news!  But they still need to come out ASAP.  As of right now, it appears that we will be meeting with a Gastroenterologist at the Mayo Clinic to see if he will be able to remove the polyps endoscopically.  He is "suppose" to be one of best, and if he says he is unable to do it then no one else will.  Now the not so good news:  Due to the placement and size of the polyps it is very likely that they will not be able to remove them endoscopically.  So, we would be looking at modified whipple procedure.  I am pretty upset about that.  I do not want this. I am too young.   That would be a major operation, more major then the total colectomy.  Pooh.  Maybe at a later date, I'll blog more about "The Whipple" and what it entails.  But I don't want to get everyones undies in a bunch until we know for sure.  

On a brighter side, Gracie, Scott and I had a great day at the park yesterday.  It felt so good to get out and enjoy the fall weather and colors.  I was able to get a couple good pictures of the little diva, she doesn't stay still very often.  



Friday, October 31, 2008

Happy Halloween

The little devil wishes you a Happy Halloween!  It was close to impossible to get this picture, she would much rather eat the horns then wear them.  

Next Monday is going to be a busy day.  It starts off with skipping breakfast, being given a bunch of drugs and then having a camera shoved down my throat, past my stomach and into my small intestines.  Oh what fun!  They actually don't fully knock me out for the procedure, they just give me drugs that make me forgot.  Nice huh?  I always wonder if I say stupid things?  The doc has told me I just let them rip while I'm drug induced.  I guess it takes a lot to embarrass me now.  Then, for Monday's highlight, Gracie and I start puppy kindergarden!  Every Monday night for the next 6 weeks.  Two of her litter mates are in the class.  It should be a fun time.  It is nice that I'm actually starting to do things for fun.  

Speaking of doing things just for fun again, I've become quite the Betty Crocker (or Paula Dean, my personal favorite).  Pumpkin cookies, pumpkin bread, mock Thanksgiving and today Apple Pie.  Hm, I think Scott is fully enjoying the return of my appetite!

Alright I need to go save the kitty from being repeatedly assaulted by the Little Devil.  

Tuesday, October 28, 2008

Special

I just wrote out this long post.  But it was just too gloomy.  I'll save it for another day.  Here are some picture of little Gracie Mae.  So far most of my pictures consist of her sleeping.  It is the only time she is still enough, otherwise she is a blur in the picture.  

On a whole I am well.  Adjusting nicely to this new way of pooping.  It can be full of surprises.  But so far nothing I can't handle and a hell of a lot better then being  backed up with that stupid stricture. 

Talked to my Gastroenterologist last night (yeah the actual doc called me.  Not one of his nurses, man did I feel special for a moment).  Long story short, the duodenum polyps need to come out, like now.  Given that my common bile duct is progressively getting larger, the polyps are growing more rapidly then we had hoped (just my luck).  My GI consulted with the other docs in his practice and they all came to the same opinion.  Due to the size and pla
cement of the main polyp they don't feel there is a doc in the state of Michigan who is qualified
enough to attempt to remove them.  So as of right now we are looking into Mayo, Cleveland Clinic or Indiana U.  At least those are the places my GI recommends.   The doctors feel I need to have these little suckers removed within the next two months.  Hey, at least that means maybe we can get all this under this years deductible.  

Alright, I'm off to bake some pumpkin cookies.  I like this having an appetite again.  My body is desperately trying to regain the 25 lbs I've lost over the past 3 months!  



Monday, October 27, 2008

Priceless

I fasted half the day to prevent accidents.  I had two body heaters, two hand warmers, and 4 layers of clothes.  And it was all worth it to see the Spartans beat the Wolverines at The Big House! What an incredible weekend.  I'm kicking myself though.  Stupid camera batteries died before we even got into the stadium.  Would you believe we were only 9 rows from the field?!  
In other news, all seems good.  I'm happy to have last weeks hospital stay behind me.  Things are still moving through.  Thank God they finally dilated that stricture.  I knew it was a stricture.  I never did due my in-you-face-told-you-so- dance though.  The 4 mgs of morphine every 3 hours made me a bit forgetful along with other things.  Next week I have 2 visits with the docs.  One with my GI to check on the polyps in the duodenum and one follow up with my colorectal surgeon.  Honestly, I am nervous for the GI visit.  I'm scared of finding out those polyps are growing or changing or worse.   One day at a time, right?  

Friday, October 24, 2008

Home at last

A few people have commented that they are having issues with my blog, blogger is having some technically difficulties, but they are aware of them and are working on fixing them.

Well, I'm home.  Thank God.  I'm just trying to adjust to my new working plumbing system.  I am trying to remember that my body is only now learning to do it's job and not to have unreal expectations for it.  But it is frustrating.  Very frustrating.

Tomorrow is the MSU vs U of M game.  Honestly, I am a bit nervous.  My bowels are unpredictable, at best.  Could be interesting.  And embarrassing.  

I'm off to go spend more time with Gracie.  I have a lot of pictures to take.  

Thursday, October 23, 2008

About time

I'm going home! For realsies this time.

Wednesday, October 22, 2008

Failed

I don't feel up to posting, but I just wanted to keep everyone in the know. I'm still at the stinkin hospital. They told me I could leave today as long as I passed a few simple objectives.

  1. I had to consume 2 meals.
  2. Keep both meals down.
  3. Both meals needed to exit via the proper route.

Sounds easy right? Well my body couldn't even do that. My first meal decided it would rather come back up instead of going down. And on top of failing those objectives I also developed some incredible abdominal pain (upper right quadrant for you medical junkies) and intense lower back pain.

I hope Gracie hasn't forgotten about me.

Hopeful wishing

Still here and updating from my hospital bed. Finally had the "procedure" last night. It was scheduled for 4:30, doc didn't show up till 8:30. Nice huh? The procedure went well, he vacuumed out 500 ccs of stool and stretched the main opening (where the pouch is sewn to the skin right above my anus). Surprisingly, it wasn't uncomfortable. I have yet to poop on the toilet. The poop, however, has no problem coming out if I am in any position other than sitting on the pot.
I still feel pretty crappy and I was puking again last night. Gotta love the pink bucket. I'm curious to what my doc will say about the vomiting. I really hope it doesn't stop me from getting to eat food today. By the time yesterdays procedure started I hadn't eaten in 51 hours.
Maybe, just maybe I will get to go home today. I'll update after I see the doctor this morning.

Tuesday, October 21, 2008

Hurry up and wait

What a long night last night was. The majority of it was spent with my head in the pink puke bucket. Due to last nights vomitus-maximus, I am NPO (no food or drink, nothing, nada, zilch) today. The residents were trying to give me the dreaded NG tube, but I managed to talk my way out of that. Phew.
Yesterday's CT scan did not show any definitive reason for my pooping, or lack of pooping I should say, problem. So, our next game plan is to sedate me and the surgeon will give it a little looksy. Hopefully then he will be able to see whatever the problem is. The surgeon is booked all day today, so we won't be able to do this till sometime this evening. Fun! I get to hang out in the hospital all day today. I swear whenever I have been in the hospital it is always hurry up and wait, hurry up and then wait. . .
The radiologist did notice something of interest on the CT. It appears as though my "common bile duct" was enlarged. Interesting, given that I have those ticking time bomb polyps still cohabiting there. This could be nothing, or it could mean my duodenum polyps are growing. Thank goodness I have an upper endoscopy scheduled for next week. Will this ever end?

Monday, October 20, 2008

Xray to the CT

The xray was "inconclusive". So now I am sipping on contrast for a Ct scan. Yum. I haven't been able to poop in who knows how long, but give me this nasty contrast and watch out. Figures.

If anyone is trying to contact me, my phone is acting up. Just when you need it, it goes crap. If you've tried calling and it goes right to voicemail that is why. Feel free to email. I have my complementary laptop set up next to my bed. Gotta love Lacks. Better then most hotels.

I should hear the results from the CT in morning during Dr Kim's 4:30am check-in.

No news is boring news

Still chillin at the hospital. They took some xrays a few hours ago, but haven't heard anything yet. They also did a digital exam (yup just what you are thinking) and couldn't detect anything wrong there. So there goes my lower stricture theory out the window. I guess I won't be doing that "in-your-face-told-you-so dance" after all. By the talk from the nurses around here it sounds like I'll be here overnight at least. I did get some morphine, which helped with my pain. I didn't fully realize how much pain I was in till it was gone.

The attending called my colorectal surgeon and asked about giving me laxatives. He yelled and said you don't give laxatives to someone without a colon, they won't help. Um, doc, you need to tell your office nursing staff that. Cause that would have been nice to know 3 weeks ago!

You've gotta be kidding me

Ugh!  Long story short. . . I'm being admitted to the hospital.  I called my surgeon's office this morning asking if we could move up my Friday appt.  My pain is pretty intense.  After asking when my last full bowel movement was (Um? maybe some last tues?) they decided I needed to go in.  
Who knows what this is going to bring.  Hopefully some relief.  I'll try and update as I can.  So it's off to Lacks I go. . . again.  

Friday, October 17, 2008

Vegetable Lust

I tried the Miralax this week.  While it made things move, it caused horrendous pain. The pain when "not going" is also getting more intense.   I have been seeing more blood in the bowl.  Now that can't be good.  When I talked to my surgeon's nurse this morning she agreed that something is wrong somewhere and is squeezing me in next Friday to see him.  I still think the "narrowing at the connection site" is causing my misery.  But I'm not a doctor, so what the hell do I know?  Just know that if I turn out to be right there is going to be a huge "in your face"  celebration dance  at the doctors office.  To help prevent a major obstruction from happening in the mean time I am back on a soft food diet.  Fun.  I never knew I would one day crave a salad so much.  Hm. . . spinach, carrots, asparagus, broccoli. . .   Oh apples. . .
I just want to be done with this.  I'm tired of only posting about my problems, but they are what are occupying my mind right now.   So fricking annoying. 

Thursday, October 16, 2008

To Go or Not to Go.

Holy smokes!  This little nugget sure is keeping me busy!  In a good way.  After losing Koda, I thought I would never be able to love like this again.  
Still having "going issues".  It's quite a conundrum.  Either I can be miserable and all backed up with horrible gut pain and bloated or I can take a laxative and have horrendous cramps and can get farther than 5 ft from the loo.   I did talk to my surgeon's nurse the other day.  If we can't find a happy medium by the end of this week, she is going to talk to the surgeon and hopefully convince him to see me.   I would love to know why I am having these issues.  I can't live the rest of my life like this.    

Monday, October 13, 2008

The best and the worst all wrapped up into one.

Saturday was suppose to be the happiest day, we were going to pick up Gracie. Unfortunately, things started down hill Friday night.  I became extremely ill.  We aren't fully sure as to why, but it all started with incredible intestinal cramps.  I'm talking a 9 out 10 on a pain scale.  They lasted all night, which meant no sleep.  Then, by Saturday morning I progressed to vomiting.  So, there we sat Saturday morning trying to decide between going to the ER or picking up Gracie.  I couldn't stand the thought of not getting her.  Picking her up had been my bright spot over the past few weeks.  She won out.  We packed up the car with plenty of paper towel and puke bags and off we went.  
I'm so happy we went.   I already can't imagine life without her.  I still have some cramping, but at least now it is bearable.  We are concerned I may have developed another stricture higher up in the intestines.  So I'm back on a full liquid diet.  Hm, yummy. 

Thursday, October 9, 2008

Now that the cat, I mean puppy, is out of the bag. . .

I would like to introduce you to Gracie Mae:

Gracie is a 7 wks old boxer and is still with her mama and litter mates.  She gets to come home tomorrow!  I can't wait.  We have been going to visit her almost every weekend for the past 4 weeks.  I'm in love.  

Gracie's mom, was relinquished to the a rescue organization while in active labor.  She had a healthy litter of 8 cuties.  Right now Mom and babies are living at a fosters house.  How could someone just dump a dog?  Especially one in active labor?  

Gracie and I are good for each other.  She will give me a reason to get out of bed, a reason to get out of my pajamas, she will give me something to love again.  

She'll keep me on my toes.  Hard to wallow in self pity with a cutie like her around.  

Wednesday, October 8, 2008

One shoe. . .

I really hope I am not jinxing myself but. . . I feel good.  I think I have found the right amount of Milk of Mag to take.  I have learned my stool needs to be the constancy of water to be able to pass through the scar tissue.  Any thicker and it dams up.  All I know is this can't be good for long term.  The doc wants to "wait and see" and if in 4-6 weeks I'm still having to dose myself with the milk of mag then he will do a dilation while I am sedated.  

While I am trying to enjoy feeling semi normal again, I'm a bit hesitant.  I feel like I am waiting for the other shoe to drop at any second.  

Monday, October 6, 2008

Lack of Balance

Just a quick post, as I only got 2 hours of sleep last night and I'm way too tired and cranky to be creative.  Still having a pooping problem.  If I don't take the Milk of Magnesia, I get very backed up.  Since I don't have a colon or a rectum, I have no storage facility.  It quickly becomes very uncomfortable (scratch that.  It's downright painful) and doesn't take much for me to begin vomiting (the body says heck, if it won't go out one way, we'll make go back out the way it came in).  So, then I take the Milk of Mag.  I only take 1 Tb. and that is still too much for my body to handle.  The cramping pain is some of the worse pain.  I'm also unable to get off the loo for more then 10 mins at a time.   Sigh, there has to be a happy medium here.  I just haven't found it yet.  
I continually find myself wishing I still had Stoma Stan.  

Friday, October 3, 2008

Poopless

Things have been getting better.  I ate yesterday and no vomiting.  Still having pooping issues though.  I was all prepared for the massive diarrhea post take-down.  I was ready to be a slave to the bathroom.  But nope, not me.  I barely poop.  It's like my body doesn't know how.  I'm off to pick up more grape juice and some pear juice (as recommended, I'll report back if it helps) If my new plumbing doesn't figure out how to eliminate my waste here in the next day or two, we will back to where we were last Wed.  I honestly believe it is due to a stricture.   Which means this won't get better until I go in for a dilation with the doc.  Great.  

Thursday, October 2, 2008

Yodeling in the Porcelain Canyon

Within minutes of pressing enter on last nights update, things got worse, fast.  I began vomiting. After an abdominal surgery, vomiting is a very bad omen.  Between upchucks, I put a call into my surgeon's on-call number.  When he called me back, he felt that it was a good sign that the Milk of Mag had opened the poop gates.  He gave me the option of riding out this storm at home or being admitted to the hospital.  He said about 50% of blockage cases work themselves out.   If we were to go to the hospital they would give me an iv and the dreaded NG tube and then it would be a wait and see.  So, we chose to play wait and see at home.  After stopping all food and drink the vomiting stopped.  
It was a long night in the Stolen Colon household.  Fast forward to this morning.  I am a bit nervous to put anything into my stomach.  Needless to say I'm back on a all liquid diet this morning. 
 I'll update if anything exciting happens.  

Wednesday, October 1, 2008

Update the Flood Gates Have Opened

The milk of mag worked.  

Poop Watch '08

My bowels have made very little progress.  Yesterday evening I started to have very small poops, were talking mouse turds here.  I hoped it was a sign things were moving.  But nope.  It was just a tease.  I put  a call into my surgeon,  he said to try some Milk of Magnesia and to call back in 6 hours with a detailed report.  Hopefully things are just backed up and this works.  Otherwise, I would have to come in.  It could mean there is something structurally wrong with the new plumbing.  

I feel emotionally wore out, drained.  I'm tired of all this.  I want to be human again.  I want to feel whole and not broken.  I just want to get back to my life.  

I'll update if there are any new developments in the toilet bowl.   

Tuesday, September 30, 2008

Movement has Ceased

I haven't had a bowel movement in 36 hours.  I really don't want to call my surgeon's nurse.  She'll make me come in, and then that will be a very  uncomfortable exam.  If only I could get things moving on  my own.  I'm not in any great pain, so I wouldn't think it's a blockage causing this.  Besides I haven't eaten anything that could cause a blockage.  I'm giving myself a couple more hours to get things moving.  Then if the dams don't open I'll call.  

:::Running off to drink more grape juice.:::  

Monday, September 29, 2008

One Day at a Time

Saturday was pretty rough for me, but Sunday was better.  I've learned a few lessons the hard way.  I have to stay on top of my pain.  If I miss a pain pill by as little as an hour, it then takes hours to catch back up and get the pain under control.  Also, I learned I have to eat very small meals often.  If I don't, I get horrible intestinal cramping and pain.  And by horrible I mean absolutely-terrible-incapacitating pain.  On Sunday I started following a low-residue diet and trying to eat every 2 hours, and it has made a huge difference.  On Saturday it hurt so bad after eating it was really hard to convince myself to eat again.  

I think it also helps that my bowels fully woke up yesterday.  Before yesterday I only would expel very small amounts of stool at a time and I hadn't passed any gas since that one time at the hospital.  It took some trials and errors, but I learned how to poop yesterday.  Yup, I had to relearn how to poop.  So, now when I go the bathroom I have much more substantial bowel movements.  I've also started passing gas, lots of it.  And whoa, do I feel better.  Between the swelling from surgery and all the gas inside me I easily could have passed for five months pregnant.  

Thanks again to those who bought me the fall dresses!  They are really coming in handy.  My abdomen is still so sore I can't wear pants.  Even if I wasn't so sore, I don't think they'd fit over my pseudo-pregnant belly. 

Friday, September 26, 2008

Home Again

I'm home!  Still in a lot of pain.  I wasn't prepared for the pain.  For some silly reason, I wasn't aware that this procedure would be so painful.  Originally I thought I wouldn't even need to go home on any pain meds. (Ha!)  I found out that during the operation the surgeon used spreaders to fully open me up.  I thought he was just going to go through the stoma site.  So that explains a lot of the pain.  
Haven't had a real bowel movement yet, but I did finally pass gas last night.  And let's just say I think I woke up the entire floor!  It would have made any 8th grade boy proud.  I think once I start moving things through the system a lot of this discomfort will go way.  As of now, I've only passed small amounts of, what we believe is mainly, mucous and blood.  The small intestines aren't use to taking on the role of large intestines and colon.  I am trying to enjoy the fact that I have only gone the bathroom a small handful of times since surgery.  I know once things wake up I may go as often as 20 times a day.  

I can't possible say enough nice things about the place I stayed.  Lacks Cancer Center is nicer then most hotels!  Seriously.  I had a wonderful head massage from their resident massage therapist for my chronic headaches.  It felt so good and relaxing!  Everyday Becky and I would walk up to the Healing Gardens on the roof.  It was so beautiful and serene.  Amazing that such a peaceful place exists on top of a roof, in a city no less.  And then last night we spent some time in the Meditation Room.  It's hard not to concentrate on healing and your well being while there.  At Lack's there are patients in all different stages of their battle with cancer and it was a gentle reminder how very fortunate I am.  I have so much to be thankful for.  

Healing Garden

Meditation Room

*Photos from Lackscancercenter.org

Thursday, September 25, 2008

From here on out consider every post possible TMI (too much information)

I love my mother-in-law. How many women can really say that? For the past two days she has taken time off from her job to hang out with me at the hospital. She plans to stay as long as I am here, and for a few days while I adjust at home. She has been a saint. For 12 hours a day, she sits with me here at the hospital, which believe me isn't all that fun. (Except when I kick her butt in Quiddler. That is definitely fun.) I don't know how I would have gotten through all this without her. Thank you Becky! I love you!

On other bowel related news. . . the bowels have begun to awaken. If you have never experienced post surgery gas pains, there is really no way to describe it. (And no, it is nothing like that time you ate too many hot wings and bruskis.) Before now, I never knew gas pains could bring a grown person to tears. But they can, trust me. While I haven't moved any gas through the new plumbing yet, I have had a few bowel movements. If you can call them that. Post take-down there is suppose to be urgency, frequency and watery consistency. Yeah, I'd say I've had the opposite of that. We are talking constipation and rabbit droppings. (More then you want to hear right? Welcome to my life.) I am concerned this might be related to the "constriction at connection site" that was found during the pouch xray, but in all honesty I have no clue what that even means. Hopefully at tomorrow's 5 am visit with the doc, while in between him pulling out what feels like feet of gauze from of my belly, I can ask him about this. (Yes this is a gross as it sounds.)

And drum roll please. . . If the wound looks good and he deems my bowels are operating all fine and dandy then I may (fingers crossed here!) get to check out tomorrow.

Wednesday, September 24, 2008

Liquids, bladder and pain meds

My first day post-op and I am doing pretty good. The bowels haven't fully awaken yet (in other terms I haven't farted) so I am only allowed a liquid diet. Once the bowels are awake I can graduate to solid foods. So far today I've had cream of wheat, peach smoothie and pudding. Not bad for hospital food.

My catheter got removed at 6 am this morning, but my bladder did not get the message. By 11am (5 hours and 2 IV bags later) I had finally convinced my nurse I needed the catheter back. (You know you are in pain when you are begging someone to insert a catheter) 1000 ccs of urine later I felt like a new woman. Luckily, my bladder and I are now on the same page.

I was surprised by my post-op pain. Currently I am on Dilaudid and Toradol and they are doing a good job of controlling the pain. I thought it would just be some superficial pain where the incision was, but it is more intense then that. Probably because they are letting the wound heal from the inside out and it is packed with gauze right now. During the procedure the surgeon cut a one inch incision on either side of Stoma Stan, from there he fished out the other end of the small intestines. Once he sewed them back together and placed them back inside my body, he sutured those two sides closed and left the middle open. The whole operation took two hours.

How long will I be in here you ask? Good question. I will be allowed to leave once I am on oral pain meds, eating solids foods and we can see that those solid foods have made their way through me. I'm guessing I'll be able to go home Friday morning that is if I start passing some gas here soon.

**The author cannot be held responsible for any errors in this post due to the use of pain meds. See above.

Tuesday, September 23, 2008

Surgery went smoothly with no complications. The pain is no where as bad as the 1st surgery. But still this is all I can manage typing for tonight. I'll write more tomorrow.

Adios Stoma Stan

Well, Stoma Stan you've been a good little stoma.  You did your job, and now it is on to bigger and better things.  If, in the future, our paths should meet again, that would be ok.  But here is to hoping I never have to see your shiny red face again.  

Lack of food and water may be making me delirious.  I am scheduled to go in at 12:15.  All I can think about is the IV.  My insides are like the Sahara.  Since the beginning of this journey, 8 weeks ago, I have lost 19 lbs.  I am curious to see if I start putting some of that back on after the take down.  

Thank you everyone for your well wishes and prayers.  It means a lot to me that you think of me.  Scott will try to do an update when I get out of surgery.  However, if he's not able to I fully plan to be blogging by tomorrow.

Peace out.  

Monday, September 22, 2008

T-minus 29 hours

I am much more calm going into this surgery then the last.  Unlike last time, here I am 1 day before, with no bags packed, no laundry done and no compulsion to clean the entire house.  
Here are the stats for tomorrow.  The surgery is scheduled for the afternoon.  It should only take 1 1/2 hours.  The surgeon, Dr Donald Kim,  will reconnect my small intestines.  He'll attempt to use the current incision where Stoma Stan is now, and only make it an inch or two bigger.  Then he'll have to fish out the other end of my small intestine (the "downstream end", from the j-pouch) and he'll sew that to Stoma Stan.  Then he'll shove it back into my body.  There are only two places he may experience a little hiccup.  It may take him longer than expected to find the loose end of my small intestines.  (Here's to hoping he's a good fisherman.)  And if a lot of scar tissue has formed, he may have to reopen my main incision.  Scott will post an update when I'm out of surgery.  Then I plan to be blogging from my hospital room.  The expected hospital stay should only be 3 days, but it completely depends on how quick my GI tract wakes up. 

Come tomorrow my insides will no longer be outside.  I'll no longer be excreting my excrement through my abdomen.  I will sit on a toilet to poop. Often.  Like really, really, often.  I'll be like a toddler being potty trained.  I'll have to relearn my body's signs that I gotta go.  Part of my small intestines will have to learn  the job of colon and rectum.  Let's hope my small intestines have a quick learning curve.  

Sunday, September 21, 2008

Commence Liquid Diet.

First day into surgery prep and I am already hungry. 45 more hours to go. Scott is in the other room, savoring some delish smelling Thai food. I am trying to stay away to keep from morphing into the crazy starving lady. 
Keith and Amanda's wedding last night was beautiful. Everything was perfect.  Welcome to the family Ms Amanda! I love you both.

Saturday, September 20, 2008

Three More Days

I can't believe my Take Down surgery is in three days. Figures, by the time I get use to Stoma Stan it's time for him to go. I'm a little nervous for life after take down. I'm not anxious about the actual procedure, but more nervous for life afterwards. Will I be chained to the toilet? How long before I can go out and not have to worry about where bathroom is? Will I have to wear Depends? How often will I have accidents? Will I have enough continence control to go to the MSU vs U of M game in the middle of October? I picked up some "supplies" yesterday. Economy pack of charmin toilet paper? Check. Calmostine (cream for butt burn)? Check. Mini squirt bottle (to wash away the gastric juices after each movement before they start eating away the skin)? Check. Mini toilet paper rolls for my purse (Have you ever seen the stuff they attempt to pass as toilet paper in some restrooms? When you are going as often I will, you need your own personal supply of the soft stuff.)? Check.

Tonight will be my last real meal for awhile. After midnight tonight it's just liquids for me. Tonight also is my brother-in-law's wedding. My sister-in-law, Jess, and I are doing a reading at the ceremony. I'm a little nervous. No, not for standing up and speaking in front of a large group of people (ok I lied I am nervous about that). I'm nervous I'll bite it after standing up. I still after an issue with the fainting. That would be the perfect time for it happen.

Thursday, September 18, 2008

Wednesday, September 17, 2008

All good on this front.

Visit with the cardiologist went well yesterday.  I was surprised to find out that while sitting my pulse jumps to 114 but if I lay down it goes to 76.  I was so engrossed with this that I kept testing myself  all day.  (It is fun being easily amused.)  The main reason my primary referred me to the cardiologist was to have the tilt table test performed.  The cardiologist, however, could not be bothered to perform this test.  Oh well.  The cardiologist diagnosed me with orthostatic hypotension.  I was a bit perturbed by him.   We already suspected this was the diagnosis, but the point of the visit was to prove this is what was causing the fainting (by performing the tilt table test).  He did prescribe me a medicine that will help, Florinef.  It is suppose to make my kidneys hold on to more water and sodium, but at the same time it lowers the amount of potassium and calcium in the body.  Since my body has had trouble regulating my electrolytes as is, I don't really know if this medicine is the best for me.  I tried to express my concerns with this drug, especially with it being so close to surgery, but he didn't seem to listen.  My plan is to hold onto the script, and see if I still have these symptoms after the take down.  There is no way I am going to start a new med this close to surgery, especially since one of its side effects was "slow wound healing".  Yeah right.   

If there is any place on earth that looks like purgatory, it might be the waiting room of a cardiologist office. It was very obvious the other patients were trying to figure out what the hell I was doing there.  Some people were staring so hard, I wondered if maybe I forgot to put pants on or something.  

Hm, I just noticed that I never gave you all the results from my pouch-o-gram.  There are no leaks, but there is some "narrowing at the connection site" (doctors description, not mine).  We will still go through with the take down as planned, but if I experience problems then we will make an appointment for the Doc to dilate the constricted area.  Doesn't that sound pleasant?  The nurse noticed my hesitation, and immediately assured me the dilation would be done under anesthesia.  Phew!  

Tuesday, September 16, 2008

One Week, WHAT?!

Finally, late yesterday afternoon the nurse from my primary's office called with my results.  The Ct scan was clear and the blood work was in the "normal range".  Good news all around!  At 1pm today I am off to visit the cardiologist.  I'm starting to tire of these all these docs.  I know, I know, no harm in checking.  The point of today's appointment is to hopefully prove that my fainting episodes are caused by blood pressure and not something neurological.  My primary was real big on trying to get answers for what that is going on with my body.  Which I guess is a good thing.  Compared to past docs who couldn't give two stools about what was causing the blood in my stool and making my white blood cell count so high, this is something new for me.  

Funny, when I was at my primary's office last week I had said something along the lines of "Thank you very much Doc."  To which he replied "Oh Stephanie, you can call me Brian"  Um, no no no!  I do not need to be on a first name basis with my doc.  I am not that person.  I do not plan to see him so often that our relationship would be casual enough for me to call him by his first name.  I am not a sickly person.  Nope, not me.  Even with all that is going on.  (Hm, I wonder if I am in some sort of denial here.) 

On another semi related note. . .  I am ONE WEEK out from my next surgery!  Whoa, it seems like only yesterday I was in the surgery floor awaiting to be rolled into the OR.  Oh, how times flies when you're. . .er. . .recovering?!

Wednesday, September 10, 2008

Another Day, another office visit.

How much of the rest of my life will be spent sitting in waiting rooms?  I need to invest in a larger purse so I bring things with me to keep my mind occupied.  There is only so many outdated magazines one can pretend to stare at.  

This morning I had an appointment with my primary care physician.  It wasn't for anything special, just a check up and to talk about a "few things".  My doctor is actually a very good doc, he sat with me for over an hour and talked things out with me. Unfortunately, I am finding that doctors like this, who can make time for you, are rare.  Even though the appointment went well, there were a handful of things that concerned the good doc.  So, I'm off for some more testing.  
First off, tomorrow I get to have a brain ct.  Fun! Given the chronic headaches and this passing out thing I've been doing we figured there is no harm in looking. 
 Also I am having some blood tests done tomorrow.  Again just to check things out. He wants to get a comprehensive metabolic panel (yeah I don't really know what that means either) andto  check thyroid levels.  Also I saw that he put on the lab order a cholesterol screening .  
I was all "Cholesterol?  Why do we need to check that, Doc?" Thinking maybe he thought it would show something was wrong with one of my organs.  
His response was "We should always screen people's cholesterol levels" 
 "But I thought that was something you only need to be concerned with when you are older"
"Yes thats true." 
"Oh. . ."  Crap I keep forgetting I'm not 19.   

Also I am being referred to a cardiologist.  Again it is for the passing out thing I keep doing.  I prefer to call it the "whoomps whoomps" due to the sound I hear when it happens.    It starts off with me feeling funny, then everything goes black even though my eyes remain open.  Hands and face go numb and I can't talk.  A couple times during the "episode" I completely forget where I am and I twitch a bit.  Basically he just wants to check that nothing major is causing all this.  The thought is it is just related to blood pressure and hydration issues.  

I feel pretty confident that none of this stuff is going to show anything serious.  But then again we felt that way before the original colonoscopy.  Oh well better safe than sorry.  
I have now seen more doctors in the past 4 months then I have in my whole life.   Really hard to believe that just a few months ago I was a perfectly healthy 29 year old.  What happened to the old healthy-I don't bother seeing doctors-I don't take medication-me?  

Tuesday, September 9, 2008

Stoma Stan meet the world. World meet Stoma Stan.

Well, it's about time I introduce you to my little friend, Stoma Stan.  Everytime I change my bag I try to take picutres of him, but majority of the time he isn't cooperating.  Luckily the other day he decided to cooperate.  The following are a few pictures I took of him.  They aren't real high quality pics, it is tricky to try and capture a few shots before he gets all active again and bathroom lighting is horrible.  As you may notice, my Stoma is male.  There are two main reasons for that. One, as I mentioned in an earlier post, only males would have no qualms about farting and pooping at inappropriate times, for example at the dinner table.  And two, as you'll see in the last picture, his appearance is a bit.  . .um. . . masculine.  

This is the whole abdomen from above. (The top of the picture is my pelvis and the bottom is my rib cage.  So I guess technically this picture is upsides down,  but it is how I see it every day.)  You can faintly see one small scar on the left side, parallel to my belly button and above the dolphins.  There is another scar inside my belly button, and the main scar is right below the towel.   (Sorry the main scar is to "low" for me to feel comfortable posting on the web.) That scar is only 4 inches long!  Can you believe my entire 4 ft. colon came out of a 4 in incision?
Stoma Stan's close up.
Another above shot of Stoma Stan.  You can see some of the irritation below him.  
Stoma Stan, from the bottom.  Stoma Stan "points down", and that is why I get some irritation below him.  That small vertical slit you see is his "opening".  You may notice his "manly" characteristics in this picture.  

Stoma Stan will be with me for only two more weeks!  Over the last 7 weeks I have developed quite the love/hate relationship with him.  Yes, at times he is a nuisance, but I have come to respect him for his role in saving my life.  If down the road something were to happen to my j-pouch and I had to go back to an ileostomy.  I'd be ok with that.  

Monday, September 8, 2008

Pouch-o-gram-OH

This morning I had my pouch-o-gram.  Lets just say that it went.  I was warned that it would be uncomfortable.  Calling the procedure uncomfortable is an understatement.  It damn well hurt.

First, the radiology tech comes in.  She can't quite grasp why I am there.  She asks "So, what surgery did you have done?"

"I had an ileal pouch-anal anastomosis."

Blink, blink.

Ok, lets try this again. "They removed my colon."

A light goes off and she says "Oh, so then what is the surgery you are having in 2 weeks?"

Trying to keep it simple for her "They are going to reconnect my small intestines."

At this point she looks like she got it and we have a brief conversation about why I had the surgery.  

I then feel the need to play it safe so I remind her "I have no colon or rectum."

Miss I-don't-listen then tries to tell me they will give me and enema to put the contrast in my colon.

"I have NO colon or rectum."

"There is a portion of your colon. . ."

"No there is not. Its gone. I don't have a colon."

"So what do you. . ."

"Basically my small intestines are connected to my anus."

"Your what?!"

"ANUS!"  (I have never yelled that word at anyone before. There is a first time for everything.)

"Oh! Oh, okay then."

I know what I am about to say will make no sense to her, but I have to say it.  "Also I don't have the typical loop ileostomy, I have an end ileostomy. So, if you try to put to much contrast in me, the extra will not flow in to my bag."*

Moments pass then "I think I'll go get the PA to assist with this."  Thank God!

The PA comes in and instantly understands what is going on.  At this point I am so relieved, until he says "Now, some contrast will flow into your ostomy bag."

"You know I don't have the standard loop ileo, right?"

"No, they always do a loop ileo with the ileo-anal pouch."

"No my bowel was perforated during surgery. I have an end ileo."

"Oh!  Good thing you told me that!!"

If it was 2 decades earlier I so would have yelled "DUH!!" at him.  As it was it took all my strength not to slap my forehead.  

The PA tried to be a gentle as possible and promised they would only put in as much contrast as needed.  As soon as he started the flow of contrast. my small intestines began cramping. The cramps were definitely out of the "uncomfortable" level and well into the "painful" level.  Once they were finally done (which took about 30 mins) I was able to go to the bathroom to expel the contrast.  Instantly I felt better.  The results are being sent to my surgeon, and if it shows any leaks he'll (or actually his nurse will) call to reschedule the surgery.  I am feeling pretty confident that we are all good and surgery will be as scheduled.  September 23rd!!  

*There are two main types of ileostomies.  One is a loop ileo.  With the loop, both end of the small intestines (one from the upstream half and the other one from the downstream half) are brought to the surface and can drain into the ostomy bag.  With an end ileo,  only one end is brought to the surface and drains into the bag.  The other end of the small intestines, the downstream end, is stapled shut and left to float in the abdomen.  Sorry that was the best I could do to explain that.  

Sunday, September 7, 2008

Wanna buy a shiny rock?

Bright and early Monday morning I have my pouch-o-gram.  They will be putting barium into my j-pouch via a lovely enema.  Then x-rays are taken to make sure there are no leaks and everything is a-okay.  If I am given the all clear (which I so know I will be getting!  Its all about positive thinking people.) then we are all good for the take down on the 23rd.  If not, then the take down will be pushed back to allow the j-pouch more time to heal.  To be honest, I am a bit nervous for this procedure.  I have heard too many horror stories of inexperienced radiology techs.  Us j-pouchers, aren't all that common and many rad techs have never been trained on how to give an enema to someone without a colon.   Some fellow j-pouchers have told me I need to be very out spoken (Ha! Yeah, this so not my strongest attribute!) and to keep reminding them that I do not have normal plumbing. 
All I know is that the last time I was at the radiology department, I asked the rad tech if he was going to have to give me a barium enema.  To which the "professional hospital employee" responded with "OH DEAR GOD I HOPE NOT!!" (I had to put that in all caps so you can understand how freaked out this guy was.  You'd think regularly giving barium enemas to patients wasn't in his job description or something.) Luckily at that time I didn't have to have the enema.  All I can hope is that I get a bit more professional rad tech this time.    
On a totally other note, have you ever seen so many Petoskey stones at once?  I still think we need to start polishing those bad boys up and selling them.  Think of all the things we could make with them.  Tourists eat that stuff up!

Saturday, September 6, 2008

Saturday morning thoughts

So did anyone watch Stand up To Cancer last night?  Thoughts?  Overall I thought it was pretty good, even if they did try and pull on your heart strings to get you to donate.  I wish they would have told you how much money they raised.  Hopefully they are able to make a difference in cancer research.  The show did, however, encouraged me to get involved in research studies.  At first I never thought much about it, but if it is able to make a difference down the road, why not?  If there is anyway I can help to save a child from being diagnosed with this then why the hell not?  The Huntsman Cancer Institute in Utah is currently doing a study and they need blood samples of people who are positive for the FAP gene.  No better time to start.  
My only beef with the show was the colon cancer segment.  Colon cancer was the one cancer that they had a cartoon family on for?  Really?  Are we as Americans that uncomfortable with our poop that we have to have a cartoon talk to us about it?  That is disappointing.  Brad Garrett was able to get a prostate exam live on TV (do you really think it was an actual exam?) yet they couldn't show any of Charles Barkey's colonoscopy. They chose only to show Homer Simpson's.  I realize the show needed some comic relief, but the joke of colon cancer is getting old.  You'd never see anyone make a joke about breast cancer.  

Friday, September 5, 2008

SU2C


No hot plans for a Friday night?  There is always Stand Up 2 Cancer, 8 PM ET/PT.  Don't worry it is on all three main networks, so its not like you have a lot of choice in the matter.  And it is commerical free.   

Tuesday, September 2, 2008

Blessed

I've spent the last week doing a lot of thinking.  Finding out that I am going to have the "take down" surgery so soon took me by surprise.  I knew life after the first surgery was just temporary and life after my take down is forever.  But, now I'm ready.  Sure there are going to be some ups and downs. The next year is going to be frustrating and probably embarrassing at times, but so what?!  I get to live without cancer.  And that is the point.  I get to be a healthy young adult.  This whole situation could have been a lot worse, and it normally is for people who don't realize that they have the FAP gene until it is too late.  In all of my searching to learn more about FAP and colon cancer I have met a lot of people battling cancer and it has really opened my eyes to how lucky I am.   What are the odds that after having blood in my stool for 7 years and after finally getting a doctor to listen to me, I would still get to escape with no chemo or radiation.  So, I have no colon.  So what.  

Tuesday, August 26, 2008

This should be a happy post, but. . .

Ok, first off a rundown from my visit with the surgeon:  
  • He will be emailing me the pictures of my colon that he took after removing it.  For some sick reason, I am very excited to see these.  Probably to give myself some kind of reminder about why I am going through this.
  • The Dr will refer me to some Gastroenterologists here in Grand Rapids that are very versed in FAP.  Remember that time bomb in my duodenum?  My goal is to get that out of there and avoid the Whipple procedure.  The Dr told us that these are some of the best GIs in the state, and if they don't think they have the skill or technology to do it they will refer me to Indiana University.  This is a huge load of stress off my shoulders.  I hadn't been able to find a doctor with enough experience or skill to remove the duodenum polyps without having open surgery.  
  • We asked about the pathology report on my colon.  We were hoping the "no news is good news" theory was in effect, but we had to double check.  While he couldn't find a copy of the report in my chart, he was pretty sure it was good news (NO CHEMO!) He said he will double check and get back to us. Yahoo!!
  • And one last tidbit of news. . . we have a tentative date for my "take down" surgery 9/23.  
Now I should be excited about this.  They will be putting my insides back inside of my body where they belong. It means no more stoma, no more bag. . .  But I'm not has happy or excited as I thought I would be.  Its too soon, I'm not ready.  Before the first surgery I worked very hard to mentally prepare myself for how my life would be afterwards with the ostomy.  I'm not prepared for life with my j-pouch.  There is a period of time while my j-pouch learns its new job.  Meanwhile, I will be having watery stools with frequent urgency.  I will be going as much as 20 times a day, and that includes waking up at night to go (that is if I can wake up in time).  Hopefully my j-pouch learns its new job quickly, then the average stools is 8-10 times a day and another 1-2 at a night.  Since the j-pouch is created out of my ileum, it is not able to absorb as much water or gastric acid as the colon did.  This means my  pouch output will burn my anal region (aka butt burn).  They said to expect it to take one year for my j-pouch to fully adapt to its new job. One year! 
I know this is better than cancer.  I know.  I just haven't fully wrapped my mind around it and accepted it yet.  I thought I had more time.  But I will, I will come to terms with this and own it.  I will be proud of my new anatomy, it saved my life.  It just may take some time.  

Monday, August 25, 2008

Home Sweet Home

After two weeks at the "Lakeside Retreat" I am home.  I had a great time with my parents.  I think this was the longest stretch of time I have spent with them since leaving for college, but we definitely got along better than  we did then!  I certainly did  a lot of recovering while I was there.  I feel like a a different person than who was dropped off up there two weeks ago!
Last Tuesday was my one month post operation mark.  We celebrated by going to the nicest restaurant in Northern Michigan, Aerie.  (Sorry for the poor picture, that is what I get for letting the waiter take it.) This meal was the first time I ventured out of my "safety foods".  I even had a glass of wine.  The dinner did go right through me and and that caused some dehydration, but it was delicious!  I had the fusilli, ti colored cork screw pasta with sundried tomatoes and spinach in a gorgonzola cream sauce.  Hmmm, so good.  It is good to now know that I can a special occasion meal every once in a while and I just need to be prepared for emptying the bag often and re-hydrating.    
It feels good to be home.  Even if I am home alone, damn Chrysler.  Later I have an appointment with my Stoma Nurse.  I have developed some sores around my stoma.  I hope there is an easy solution for them, they are starting to become very uncomfortable.  Then on Tuesday I have a post-op visit with my  Surgeon.  I am oddly very excited for this.   I think I just want to hear that I am progressing normally and maybe getting an idea of when to expect the second surgery.  
Hopefully, now that I am home I will resume to my normal blogging schedule.  I was just uninspired to write while I was at the cottage. One more thing, all my posts will not always be so upbeat especially while learning to live colonless and accepting my future with FAP.  I am human, my emotions range from being very happy to being melancholy.  I am sorry if anyone doesn't like to "hear" from me when I am anything but happy, but that is life.  If a post starts to go in a direction that you don't like, then stop reading.  I cannot be held responsible for your emotions after reading.  Thanks.