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.  

Sunday, August 17, 2008


After a week at the "Lakeside Retreat" I have gained 3.5lbs, read over 1,350 pages, and can walk 1 mile at a time. Sounds like progress. There was one little hiccup though. I developed a staph infection around my incisions, three of them. (The infection is only topical, unlike my poor cousin Cody, who by the way is back in the hospital battling his infection. Needless to say if you have any spare prayers or well wishes he and his family could use them.) The good news is I am on antibiotics and they seem to be working. Also if anyone is ever in the Higgins Lake area I DO NOT recommend the local Urgent Care. I almost walked out when the Physician Assistant entered the room. She appeared to have rolled out of a bar and came straight to work, mind you this was 9 am. Camo truckers hat atop greasy not brushed hair, grungy and fraying sweater over beat up slightly browned jeans. Yes, very professional looking. Oh what am I thinking this is Northern Michigan.

Due to the staph infection, Jim and Dee, have not granted me permission to return home. Oh well. No complaints here. Since the start of the antibiotics I have become very light headed and dizzy again. I almost bit it today in front of them, that sealed the deal on me not going home anytime soon. Instead I get to stay here with a beautiful lake and my parents. I even heard a rumor that we may be heading to Traverse City and dining at Aerie (previously known as Trillium for my Mi readers) this week. I am spoiled.

I look completely different then when I arrived a week ago. Gone is the pale, weak me. I have gotten my color back plus a little tan and each day I am stronger. It is hard to imagine that one week ago I couldn't walk more than 300 feet at a time!

Tuesday, August 12, 2008

Soapbox, again. Cue the eyeroll.

Another lovely day at the lake. I am being completely spoiled up here. We spent a leisurely afternoon floating on the boat. It was just what the doctor ordered. And for tonight we are even having chocolate fondue for dinner! No not for dessert, for dinner. A girl could get use to this! Who are these people who are calling themselves my parents? And where were they when I was a kid?!

I am going to attempt* to answer Aunt Jay's question: "Is there a way to tell if he (Andy) has the gene but that it is dormant in him? In other words, could he pass it along to children without actually having the disease himself?" The good news is Andy cannot have FAP. FAP is characterized by having hundreds of polyps in the colon by the mid twenties. Unfortunately there are other variations of FAP. One being Attenuated FAP (AFAP) The average number of polyps in AFAP is much less (I have read around 30) and the onset is much later (growths start after twenty and turn cancerous around the fifties). Where classic FAP the polyps start growing around puberty and turn cancerous around the thirties. So, if Andy's lonely little polyp does come back at precancerous then he will have to undergo genetic testing to make sure he doesn't have AFAP. As for passing it on, I believe the chance is much less for his future offspring. Instead of the 50% chance with classic FAP it is 5% (or is it 0.5%?? goes ask genetics genius Andy or google it if you need specifics) with AFAP. If Andy's polyp comes back as benign then we know for sure that I am a lonely mutant (yeah aren't mutants suppose to get super powers? Where are mine? Maybe I just haven't discovered them yet. Oh the possibilities!)

There are also other variations of FAP, like Gardner's and Turcot's syndrome. When I go in for my genetics counseling (as soon as I am healed more) I hope to find out if I have one of these known variations. Each variation carry different risks, for example people with Turcot's have a higher risk of brain tumors and Gardner's has a higher risk of thyroid cancer. The good news is if you know you have one of these, then you can undergo screenings so it can all be caught very early.

This is part of the reason I get so pissy when someone says something like "well, now that your colon is out you are cured." No, sorry, wrong answer. I can never be CURED! I will have to live with and carry this disease with me the rest of my life. At the very least I will have to undergo yearly (that is after I graduate from the every 3 months to the every 6 months to the yearly) screenings of both ends of my GI tract. Remember that little (actually not so little at over an inch) time bomb in my duodenum, we still have to keep our eye on that bugger till it comes time for him to be removed.

Ok, climbing off my soap box now.

*I am not a medical professional and I could very well not have a clue what I am talking about. So please ask your doctor or a medical professional or at least google before acting on anything I may say in my blog.

Monday, August 11, 2008

Breaking News

This just in, Andy only had one polyp! So, that means no FAP. We will hear in one week if it is benign or precancerous. But I am just so happy I'm not sharing this gene, that I am being selfish and hogging it all to myself.

A Monday on the Lake

Currently my baby brother is undergoing his first colonoscopy to makes sure we do not share this horrible disease, FAP. (ok, so he is not a baby at 26, but he will always be my baby brother!) I am praying that I am the only genetic mutation and that he will not be sharing this new family tradition with me. I will update the blog as soon as we hear anything from him. Which may be awhile, he is more sensitive to medication than me so I assume he'll take his time coming out of the druggie fog.

Besides sitting on pins and needles waiting to hear from Andy, life has been good at Jim and Dee's Lakeside Retreat. Mom and Dad have been doing everything they can to fatten me back up, so far they are successful for one pound. My appetite is starting to come back, and the anti nausea med is helping to make food sound good again. They also have me walking a lot. Yesterday consisted of 3 walks! One up hill (hard as hell thank you very much!), one long one around Walmart*, and one flat easy one. Also, Dad has given me a pedometer, so we can measure my progress. Yesterday I walked 3,000 steps. (I know that may not sound like much, but when just showering makes you feel like you ran 6 miles, 3,000 steps is A LOT) Today I am paying the price with a terribly sore abdominal muscle. (I guess that can happen when one of the main muscles that help stay erect has been cut in two and has a hole in it) But, the pain is nothing my extra strength Vicodan can't take care of. My nurse was right when she said around 3 weeks post op you will push yourself a bit to far.

Also I would like to thank everyone who has sent me something. The gifts, cards and flowers really mean a lot. It is very comforting to know others are thinking about you. Even the comments left on the blog letting me know you are "listening" to me make me feel good. I was planning to do a Shout-out post once in awhile to thank people, but Mr Manners (aka Dad) says I still need to write Thank You cards. So I will as soon as I have enough energy for it.

*Some of you may be surprised to read that I patronized Walmart, but up here in the boondocks it is the ONLY place to shop. Otherwise I totally would boycott the Wally World. (I boycott due to their practices, not to their cheapness. I am all about cheap, just not when it comes at others expense.)

Friday, August 8, 2008

Low Down

I have talked to my surgeon's nurse a handful of times already this morning.  The consensus is that there is no abscess and all of my lab work came back in the normal range.  While it is good that nothing horrible is causing everything it is a bit frustrating not having an answer.  It is not a good feeling to have stumped a doc who has performed thousands of these surgeries.  The game plan is that I am to keep a close eye on myself and if anything changes to call.  The doctor has called in another script for Vicodan and an anti-nausea med.  They told me to quick trying to be a hero and take the vicodan as prescribed (due to my fear of becoming addicted I have taken as little as possible).  We hope that the anti-nausea pill will allow me to eat more.  I am experiencing a lot of food aversions, and on top of that the nausea is making it hard to eat.  

They did give me the all clear to go to Dee and Jim's Lakeside Retreat.  Which is great, I can't wait to get up there and be babied.  They have fully stocked their kitchen and plan to fully undue my 13 Lb weight loss.  I will still do some posts while away, and hopefully I will be able to take some new pictures to accompany my posts.  Today's picture is of my sidekick and current nurse Dexter William III*.  Since being home from the surgery the little bugger hasn't left my side.  Even when I go in to the bathroom he sits outside the door and waits for me to come back out.  He has been my snuggle buddy and my comic relief.

*No I never knew Dexter William II nor I.  When I found Dex (or actually he found me) he was all scrawny and sick so I decided to give him a good regal sounding name.  

Thursday, August 7, 2008


Just got home.  Its 11:30 and I am wiped out.  The CAT scan did not show any abscess (yahoo!) but it did confirm fluid in the lower part of bowel.  So I guess, now I wait to talk to my doctor tomorrow to see what could be causing all the fluid.  The good news is no abscess! 

On a completely different note the radiologist did notice multiple cysts on my right ovary.  Hm.  WHat the hell is that about!

Fuckin' Eh

Hm. . . where to begin.  I am headed back to the hospital tonight for a CAT scan.  Earlier today I called my surgeon's nurse and told her I had been fainting/blacking out and having copious amounts of drainage from "area previous known as rectum".  She told me to come into the office immediately.  After having a very uncomfortable exam from the surgeon he decided I need to go in for a CAT scan (having a person stick their fingers up your bum is uncomfortable on so many levels, but to have them do it with your husband in the room makes it even more uncomfortable.) At 9:oopm tonight we head back to the hospital.  Joy.  He also ran some blood work to see if we can figure out the issue with the fainting spells.  His concern is that I may have developed an abscess.  At 7:00 I start drinking some barium, then when I arrive they will give me more barium via the area previous known as rectum.  Sounds just like how I wanted to spend my evening.  
Todays lessons are:
  1. Fainting is not normal, ever.
  2. Smelly beige drainage from bum also not normal.
  3. Don't ignore things or be worried about annoying people.  I am writing checks to these people daily and to hear me complain is part of what they are paid for.  
  4. Oh yeah, and No these symptoms are not because I am addicted to painkillers.  (I have been having hot flashes and cold sweats, and thought that maybe I was going through withdrawals, but apparently is is very unlikely to get that addicted in under 2 weeks. And mostly those symptoms are related to whatever is causing the drainage. Silly thing to be paranoid about huh? )  
  5. Oh Oh one more.  Just because you post your symptoms on a online message board for others who have had this surgery and they say said symptoms are normal, does not mean that they are in fact normal.  
 I will update as soon as we know anything.  Rock out.  

Wednesday, August 6, 2008

Oh what a morning

Oh what a morning I had yesterday!  It started off good.  I was feeling strong so I decided I was going to attempt something new.  Even though Scott wasn't home I decided I was going to shower.  While Becky was here last week, she installed a hand held shower head so I could sit on a stool and shower.  All previous shower attempts had been done while someone sat in my bedroom, just in case.  But nothing ever happened so I thought nothing of it.  I also had this brilliant idea to shower sans 'bag'.  I thought it would feel good to have the bag off for a bit and to be able to clean around it.  So far my stoma has not been active in the mornings.  So. . . everything starts off good, but about the time I have my hair all sudsy I start feeling woozy.  I quickly attempt to rinse my hair and then crawl on to the bathroom floor.  At this point my stoma decides to be active, and is squirting everywhere.  I am not strong enough to stand up, so I grab a towel to hold over him (yes my stoma is a him.  I figure it has to be male, who else would think it is perfectly okay to fart anytime it wants to, like at the dinner table).  Once it has settled down and I have a bit of strength I try to put a new bag on.  Right as I am attempting this he goes all crazy again and soaks the new appliance.  So, with that appliance in the trash I try again, but now I am too weak to keep standing so I lay on the ground and put the new bag on.  Phew,  once it is on I crawl (yes on my hands and knees) to my bed.  I figure I'll just rest for a bit.  After about 5 minutes, my bag fails and is squirting out from underneath it in every direction (think of a hose that you place your thumb the opening and then turn on the water).  I lay there until I think it is done and then crawl back to the shower to rinse off, mind you I feel really gross at this point.  Now the shower head breaks, yup just when you thought it couldn't get any worse.  The connection to the pipe leaks and water starts spraying everywhere, soaking all the walls and ceiling.  All I can think about at this point is Scott is going to be pissed, we have this on going argument about the bathroom walls.  Supposedly I always get them wet when I shower.  Anyways back to this story,  I finally get a new bag on, and I just lay on the floor for an hour.  By this point I have soiled almost every towel in the house, plus my bedding.  It took me a good hour till I was strong enough to attempt getting dressed and going downstairs (I did the stairs on my bum, like how you did as a kid).  And I left the mess for when Scott came home so he could help me clean up.  
Sigh, at least I have learned some valuable lessons.  
  1. No showering when no one is home.
  2. No attempting to shower without the bag on
  3. Scott is perfectly capable of doing laundry. 

Monday, August 4, 2008

A quick one

Just a real quick post.  I am doing well and healing.  I still have horrible fatigue.  My blood pressure is really low which has lead to a handful of fainting and strange dizziness spells.  I also blame the blood pressure for the weird fuzzy head feeling I have.  Which it makes it difficult to put thoughts into sentences.  I have a lot of post topics I want to cover, I just do not have the energy or mind power for it.  
I have adjusted fairly well to life with my stoma.  The last few days though I have had a painful ache around it.  If it continues tomorrow I plan to call my Stoma Nurse.  My only other "side effect" has been the blood and mucus I pass through my anus.  I am shocked by the amount and would swear that food might be slipping through if I didn't have an end illeostomy.  (End illeo means my small intestines were completely snipped in two)  This blood mucus passing has also lead to a few pass  outs.  I still don't have much control over my sphincters, so when I feel urge I have to quickly get to the bathroom.  With all ready being prone to fainting the mad dash for the bathroom is more than my blood pressure can handle.  

Well I am feeling really tired and kind of clammy so I am going to go and catch up on some Days of Our Lives.  (Come on, how could I not get hooked on Days again?)