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


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


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


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.