Just keep swimming, swimming, swimming

Wow, last weekend of November already but I have to say that things are progressing really well. Home care has been wonderful and I have a new photo of the "Zombie Tummy"...it's more like a little ugly tummy now. Kind of like the ugly duckling, misunderstood.

I'm slowly getting into the routine of what things will trigger an upset tummy and send me racing for the bathroom. Things work slowest and best if I manage to get some good whole grain carbohydrates in my system first thing in the morning. I imagine my digestive tract is like a highway system...but now mine doesn't have any traffic lights on it making the trip much much quicker.

For example, the other day I gave myself a panic attack in the bathroom. It appeared that I was bleeding profusely and I was confused and couldn't figure out what had gone wrong. I had been feeling good and had no bleeding or issues since I came home from the hospital so why now 6 weeks later? After fretting and worrying about it for about an hour it suddenly dawned on me that I had tomato soup that day. If something brightly colored goes in, it comes out looking brightly colored.

If you don't know what I'm talking about picture what happens after a normal person eats a whole lot of beets. Usually the next day you go to the bathroom and you're like "What the?" cause your number two is brightly colored. Well for me that transition happens more frequently and within about 2 hours depending on what I've eaten.

I've started practicing yoga again. Slowly and not doing a lot of the "laying on the stomach" positions. I still have a very hard time laying on my stomach or putting any pressure on it whatsoever.

I'm also very sore around my Chuck hole. While my incision was healing I ran into a problem called hyper-granulation. It's where the skin gets a little too ambitious and starts to grow way too fast and too much and you get this weird blistery looking spot on your cut. It's apparently very common and nothing to worry about it, but in order to kick start your body into doing what it's supposed to again instead of being over eager they use silver nitrate and burn the skin back to start the process over more slowly. Silver nitrate is the same stuff they use to burn off warts.

It stings a little bit but I really had hardly any discomfort considering how numb all my incision areas are. Now my Chuck hole is sore though because it had to be burnt a few times so the outer healthy skin tissue was slightly affected so it stings a bit if it's touched or if I move around too much.

So what have I been doing to keep busy? I've read over 10 books since I've been home. I also baked my husband a golf cupcake birthday cake. My closets and cupboards are crazy clean and there is always something good for supper when the man who's bringing home the bacon gets home. Which I think he appreciates.

I've had some serious struggles with Employment Insurance this time, things that didn't happen last time I had to use it. It's hard not to pick up the phone and scream at the poor person who picks up the phone on their end. It's not the call center person's fault that they decided I had to wait an additional 4 weeks before receiving any benefit and that my first benefit check would not be a full one because I got paid for out of pocket expenses. Insert angry face here. Oh well, if it was easy I guess everyone would be on EI all the time.

To wrap things up, my incision is almost closed and the thing I'm most looking forward to trying is - SWIMMING! Swimming with an ostomy is totally doable and lots of people do it all the time. I am very much looking forward to swimming without a pouch, not having to worry about that wet pouch while I'm trying to get dried off and into my clothes and not having to worry about a bump that might dislodge the bag and fill the pool with poop. I'll let you know how it goes and I'll also keep you up to date on the rest of my days off go!!

The road to recovery

This is your digestive system.

This is your digestive system with Crohn's Disease.

I had surgery three weeks ago on Tuesday. I was in the hospital for 5 days - and if I had stayed one second longer I would have murdered someone and I would be writing this blog from a jail cell. If inmates are allowed to have computers - and internet access - which I'm sure they're not.

I want to tell you - MORPHINE AND THE Patient Administered Dosing system-ajiggy - BEST THINGS EVER INVENTED! Last time I went through unbearable pain and didn't even open my eyes for two whole days. This time was much much better. Probably a combination of me being super healthy before surgery and the better pain management.

I had a great team of surgeons and wonder of wonder - lovely student nurses! During the week the 3rd year RN students were working at the hospital and each of them got 2 patients only so you get a lot of undivided attention. It was lovely, my nurses this go round were wonderful.

My first night there was sucky, I had a room mate who was overflow from orthopedics and she was throwing up and yelling and farting all night...not even a tiny exaggeration. She got moved and my new room mate was wonderful, a lovely lady who had gastric sleeve surgery for weight loss. We got along great. She went home and I got a night to myself and on my last night another room mate but she was older and pretty okay. I think I probably kept her awake more than the other way around.

My advice to anyone about to go through this surgery - get diaper rash cream and the softest most wonderful toilet paper you can buy. I even have wet wipes that are flushable. If you have not used that particular outlet before and suddenly after having no food for several days it turns on - you won't be wiping, you'll be dabbing. And often. And the doctors won't give you anything to slow that train down.

As one of my doctors told me after a night of zero sleep "the bowel is like an athlete, it has to be trained."

Finally after about a week and some good solid food and getting home things have slowed down and I'm not screaming like an infant with the worse case of diaper rash you've ever seen.

I do have one complaint - same scar - half the number of staples and what does this equation add up to? My incision has ripped open and I have a surgeons appointment tomorrow to figure out what to do about it. The staples are out. They migrated and moved out of the incision and weren't doing any good.

Funny story - see that big hole in my tummy on the right hand side? The nurses tried to tape it closed (which isn't possible because there's no extra skin there, it's just a hole to fill in where Chuck used to hang out) and when I complained that it was hurting me the way they were tugging on my gut they said....wait for it....if we don't tape this closed you're going to have a big scar.

EXCUSE ME? Are you missing the railroad tracks that run vertically from my boobs to panties? Granted some vain individuals would probably be freaking out if they end up with a scar like this but I'm going to tell people it's either a bullet wound or a shark attack. Both way more exciting than the truth.

I don't have a lot else to talk about right now, my days are a haze of codeine, tylenol, daytime television and napping.

I did manage to read two books though so that is awesome. As I'm feeling better I'll be able to start doing more. Right now I shower with a bath chair cause I can't stand up for long periods of time without getting woozy and falling in the shower is not something I'm interested in doing. I go up and down the stairs at home but as little as possible. And I've finally been able to start blowing my nose and coughing a little - but sneezing is still absolutely out of the question.

Oh and things are finally starting to be funny - laughing hurts like an SOB for quite a while after.

Anyway stay tuned and here are some pics of hospital me for your entertainment!

Right after surgery - that black cord and button were my morphine pump and button - my MAGIC button.

They check your incision by drawing awesome maps on the bandages. They write a time on it so the nurses and doctors can see how badly it's bleeding and where.

Me with some awesome flowers sent by my Calgary work team

Me recovering at home with one of my constant nurses!

I just passed my pre-admission!

It's crazy but every time I go to these things I feel like I'm about to write a test and I'm always so excited when I think I get an A!

This morning I had my pre-admission clinic. For anyone who has never gone through major surgery the hospital brings you in to check you over and find out "if you are healthy enough to have surgery."

So I was at the Royal Alex at 7:30 a.m. this morning and headed into my session. These clinics can last anywhere from 1 hour to 8 hours depending on your current medical condition and what surgery you are going in for. For me today it was 3 hours.

You start off double checking all your chart information, then you watch a video about surgery and what to expect in a room full of other people. This time I dragged my husband along - last time I went alone because I didn't know you could bring anyone.

I always like to look around the room and try to guess what people are in for...there was an older gentleman there with his wife, both of whom had a British accent and I'm pretty sure he's getting ready for back surgery. There was a guy there who looked like he had an illness from birth and he said he was going in for his billionth surgery (which I think is an exaggeration...but you never know I guess). There was a larger gentleman who I am guessing was going in for weight loss surgery and then in the corner was the last patient besides me.

It was like a flash back to a couple of years ago - she was horribly thin, pale, and I'm sure she's in to get the same surgery I had 2 1/2 years ago. I wish I could have gone up to her and given her a hug and told her that the surgery would be life changing and she had so much better things to look forward to.

But just in case she was there for a boob implant or something it's best that you don't do those random acts of hugging. Besides - I'm not much of a hugger anyway.

Anyways, I'm happy to report that the video was new - they've redone it since I last saw it. Then you get taken into your own personal exam room and today I had to have 1) blood work, 2) chest x-rays, 3) meeting with the anesthetic doctor, 4) meeting with the ostomy nurse, and 5) meeting with internist who talks about medications etc. That's over and above all the chatting you do with the nurse in pre-admission.

I'm going to skip the boring humdrum parts - good news I have my pink bracelet back again! I need to keep it on until surgery, it's so if I need blood they can identify me and identify my blood type.

Let's get to the good stuff. Last time I had an internist (doctor) who had an accent so brutal that I couldn't understand a word he said. Now I don't mean to sound rude but these are kind of important conversations and I think you need to insist either on lessons to dumb down the accent or get someone who doesn't have a terrible accent.

This time I didn't run into that...but you should have seen the anesthesiologist who darkened my door! First off his clothes were all wrinkly and looked like they hadn't been washed in about a year. So maybe he was on late shift at the hospital - but that didn't explain the major sweating issue. It's never overly warm in any hospital but I was afraid this guy was going to get my gown wet if he came anywhere near me. There was certainly no hand shaking going on!

Then he gets up to leave, turns around and his pants are falling down and his Joe Boxer boxer shorts are hanging out over the top and his shirt is so wrinkled it only comes part way down his back. SERIOUSLY? I am hoping and praying he is not the guy in the OR on my day!!!

Get past that speed bump and head to my last and final stop - x-ray for a chest x-ray. They do this to check for fluid to make sure you are not going to end up with a horrid case of pneumonia after your surgery. And who do I get? An x-ray technician with a lisp! It's kind of impossible not to laugh when he is asking if I was there for my "chetht xth-ray"...

So the countdown continues - one week from today and I will be under the knife and Chuck will be re-attached to my parts on the inside...

This is what I came out with last time - I was soooo skinny.

The final countdown!

Anyone who went to school in the early 90’s will remember that song – it was usually playing when your high school sports team was taking to the floor!

So I have a little experiment for all of you to try – it can definitely be done at home. First of all I want you to go to your liquor cabinet and mix yourself several of your favorite cocktails and drink those down. Enough so that you’re a little bit happy and unsteady on your feet but not so many that you fall down or puke or anything.

Next go into the kitchen and get a Ziploc bag and a bottle of water. Now open the Ziploc bag and hold it around pelvis level and then in a seated position try to pour the water into the bag without getting it all over yourself and without dropping the bag. You have just tried to empty your ostomy pouch when you’re partying.

I attended the St. Paul Rodeo Beer Fest on the Saturday of the long weekend. Got a little tipsy and posed in a group photo with a bunch of Philipinos…don’t know who they are and I am sure I will only ever see that photo through the magic of social media if ever. Also got the idea for the experiment and a blog post.

But I’m not done there! I have received the go ahead from both my surgeon and my doctor to get the reconnect surgery. I had an appointment with my surgeon and asked him straight up – “so do you install some PVC pipe in there with a little plumbers tape and glue?”

I don’t think my surgeon thinks I’m as funny as I think I am. For those of you who want to know – they staple you together.

The official date of the surgery – September 27. I’m officially done work September 23. I’m officially no longer dreading that weekend because I don’t have to do the prep for it. I don’t have to drink the nasty stuff that makes you empty your insides like an atomic bomb has gone off in your tummy. I don’t have to have only clear fluids for 2 days and survive on jell-o. Just no eating or drinking after midnight the night before.

Last time I had 47 staples but I was 120 pounds soaking wet at that time 3 years ago…I’m more than that now. So will I need more staples to close me up? Probably. The surgery cannot be done laproscopically (I never know how to spell that word) because they need room to root around in there.

I haven’t had to go number 2 in the traditional sense in 3 years. I am telling you that first time will not be comfortable let alone trying to do that with a cut open stomach that is healing. I got some great advice from my sister in law though – a cup of coffee and a good book!

Stay tuned – my pre operation appointment is September 20 – last time I had some doctor I couldn’t understand (see post from several years ago). It will be good to compare this visit with last time!

Chuck goes to New Orleans

Chuck may as well be a super hero. I like to imagine that the pouch is more of a cape and that he goes around doing things that no one expected he would be able to do.

Go to the West Edmonton Mall Water Park? YES! While there did he face down big waves and plummet down scary waterslides that give whole new meaning to the word wedgie? YES! (Let's just say I'm very thankful for Chuck as one particular slide was enough to make you almost eat your shorts and I'm sure for those people who have to use that part of their anatomy any trip to the bathroom was probably painful.)

So what is the latest that Chuck did? Well Chuck and I went to New Orleans to help do Katrina relief.

Let me back up a little - I work for Boardwalk and right here and right now I'm going to lay down what is so awesome about working for this company. Several times a year our CEO spends a boat load of money and takes around 40 people to go do volunteer work. They used to go to Tijuana and work with YWAM (Youth With a Mission) but with the unrest in Mexico right now the new location this time was New Orleans.

So off we went to high humidity, crazy high heat, no local bathrooms and a room mate I've never met before for the whole weekend. There were long flights, foods we don't usually eat and hard physical labour which was tough on my precious computer typing fingers that don't usually see any kind of real work.

I think it is safe to say that the world has mostly forgotten about New Orleans. Hurricane Katrina seems like a lifetime ago and how could a city in the USA possibly need help 6 years later? When you drive down the street everything seems okay at first glance but then you notice most of the houses look like this one - broken windows, chains on doors and no one living there.

The build team I was on was doing mudding and taping in a house that belonged to a man named Milton. Milton is in his 80's and had to go to work to start paying rent so he could live in New Orleans - even though he's owned a house for almost 50 years. Right now that house is in the process of finally being fixed up - 6 years after the fact. This is a picture of Milton sitting with us on Saturday - he came for a visit to say thank you to the volunteers for working on his house. I'm surprised the picture turned out - it's hard to take a picture when your eyes are full of tears.

He used his cane to point to where the water rose on the house - it went right up past those stairs you see on the right and stayed that way for 2 weeks.

Imagine a community where your whole family lives close by. Both sets of grandparents are near and it's not unusual for your kids to be able to walk to several homes belonging to aunts and uncles. The tight-knit community became a huge liability during the flood - everyone lost everything and no one had anyone to turn to and live with during the rebuild.

On top of that the housing that was liveable now is renting at a premium price because of the lack of supply.

In comes the St. Bernard Project - the group that we helped out with. They do mold remediation and rebuild the homes from the bare studs. To say that it touches a persons heart would be an understatement. We heard from one woman (a deputy sheriff) that they were finding bodies in homes even 2 years ago - when your whole family is wiped out no one thinks to go looking for you.

Chuck did amazing even though the humidity was so crazy that I probably could have wrung water out of my clothes every night. I did change him on the Sunday but that was more for my own comfort and not because he really needed it.

He did great on all the flights - even flying through the night on the Friday. And I can safely say that without having gone through the surgery there was no way I would have been able to participate in this amazing weekend. There was no washroom facilities at the home - we had to make van trips to the local McDonalds. Luckily I had the best van driver of the group and that meant washroom breaks whenever our team needed.

I can say this - even if the only thing that had come from the past weekend was meeting my Edmonton team members and spending time with my co-workers from across the country I still would have called it a huge success. Helping out a family or two in need was icing on the cake really - or maybe it was the other way around.

Hmm...maybe I should get someone to draw Chuck in a comic book - he could be OSTOMY MAN!!! Even if I am never able to get the surgery reversal and even if I'm never independently wealthy and even if I never live anywhere other than my own little house, I am so blessed. The city of New Orleans is in my prayers and if you ever think that maybe you'd like to do the travel/volunteer option I totally recommend a trip to New Orleans and volunteering for the St. Bernard Project.

Validation is sweet

I am late updating my blog. I had thought that after my scope I would be blogging right away about going in for my new surgery, how much time I'd be off work recovering and wondering if they would be double sets of train track scars on my tummy or just one set...

Alas surgery is not in the cards for me right now. Apparently I'm still very ill. That little tiny piece of colon that is just floating around in there like one of those inflatable highway signs is very inflamed.

And here I am, after being open and honest about symptoms and pooping and bum scopes...and I hate to even write about what is happening now. I am on some new medicine to go along with my biweekly shot to the gut...I now have to use...suppositories.

I don't know why after everything I've been through and everyone who has seen me from the inside out and all that I've shared with everyone out there in Internet-land why suppositories is something that is really bugging me but there you have it. And these aren't little either. At least I don't think they are. I've never had to take suppositories for anything before - but these seem like one small step down from a tank shell being shoved into uncomfortable places before bed each night. By the way - small note of warning to anyone who may in the future need to use them - make sure your fingernails are not long or sharp or jagged in any way. Ugh.

Anyway, on to the stuff that doesn't make me want to crawl in a dark hole and never come out.

I was confused as to how my little bit of insides could still be so sick. I take my medicine, I have no pain and no fevers (fevers being one of the keys to any kind of internal infection or illness that you may not be otherwise aware of) - nothing. I feel great. In fact I feel amazing and my quality of life has been better than I had even hoped for.

I mentioned to my surgeon at my follow-up that I was confused as to how I could supposedly still be so sick but feel so good. He just shrugged and said that if I was hooked up I wouldn't be feeling good but right now as this little piece of insides is decorative only I wasn't being affected. I take his word for it but still something tells me that I should at least know that I was ill.

I had an appointment with my gastro this morning and I HAVE HIM STUMPED! Thank you!!! I feel great, my blood work is normal, he doesn't understand how my insides are still so sick either. I'm sure most people don't look at having your specialist tell you he's not sure what is going on as a good thing, but it made me feel better to know that I wasn't weird for feeling like something isn't quite right.

I have another scope scheduled for June - 3 months after being on the new medication and continuing on with my injections.

On a side note - just got back from sunny southern California. It was beautiful weather, great fun and Chuck did really excellent. I will put in one word of complaint. LAX SUCKS. And on top of that the screeners at LAX that I had to deal with were not the sharpest tacks.

I had to go through one of the new full body scanners. No big deal, they're coming on line everywhere and I knew right away I'd get asked about my ostomy. The female doing the scanning asked me what that was and I said "I have an ostomy". Then right in front of the whole world at security she asked me to lift up my shirt.

My answer was "No...I will be happy to show you anything you want in private but I will not lift up my shirt here."

You would have thought that I had opened up my pouch right there and smacked her full in the face with a big ol' handful of poop. She was stunned. Then she asked me if I wanted a private screening, I said yes.

Then it took 5 minutes and another 6 security people before a manager finally came over and said with as much sense as I heard through the whole ordeal "So if she wants a screening in private take her to the private room and screen her."

With the way they were running around I thought the private room was in the basement of the airport or something but no, it was less than 10 feet away. So dimbulb 1 and her partner take me to the private room. I lift up my shirt and they both proceed to ask me what it was they were looking at. Drawing on a huge amount of patience I explained that I had surgery and now my insides had a different exit hole...even after all that still complete blanks.

At this point I'm starting to get aggravated but it's airport security and I'm no dumb bunny so I just wait patiently while they stare at each other and then again at me. Finally one of them says "well we'll just swab her hands for drugs".

They do the swab and one girl runs out of the room with the little paper thingy while the other guards the door in case I decide to make a break for it in my socks...and finally the first one comes back and says I'm free to go.

I am so happy that the Ostomy Association of Alberta (at least Edmonton) are working hard to educate security officials about ostomies and what to expect. I have no problems with them asking to see, or checking me for illegal items - I know people think of all kinds of crazy ways to smuggle illegal items over the border. My problem is when they look at me like I'm some kind of alien. These people work in a very busy airport and ostomies are not some weird 1 in a million thing.

My sister in law says that them asking me to show my tummy in the middle of security is the equivalent of asking one of them to take out one of their tampons in front of everyone. The mental image cracks me up and I'm sure if I had said anything like this out loud I'd still be in security at LAX.

Drumroll please....

As of April 29, 2011 I will have had Chuck for 2 years. He is a good guy, he can get a little annoying but who doesn't when you spend 24-7 with them. Still I feel like maybe it's time for something new.

So...I spoke with my specialist and my surgeon and we're working on setting the date to put my insides back together!

I had a visit with my surgeon on Monday of this past week to talk about the surgery. He assured me that as long as the little tiny piece of colon area that they left inside is healthy they'll be able to sew it up and I should be able to live ostomy free for a while. I say for a while because with Crohn's disease it's never a guarantee that you won't suddenly flare up and become incredibly ill so you take every healthy day with a lot of gratitude.

Then he said, so we'll have you come in for a scope. To be very precise a "flexible sigmoidoscopy". I looked at him and thought "Can't you just ask me to bend over and shine a flashlight up there? There can't be that much to look at!"

My scope was set for this past Thursday afternoon. Usually preparation for the scope is the worst thing ever. You don't really eat for a couple of days, you drink stuff that I would compare to motor oil if I knew what motor oil tastes like and then you strap yourself to your toilet for 2 days. You show up at the hospital weak, tired, hungry and cold - not to mention sometimes nervous and a bit cranky.

But as my insides are not actually hooked up to anything I had no prep to do. WOO!

Get to the hospital and the nurses weren't the most friendly I've ever dealt with there. They asked me a load of questions that were ridiculous if any of them had even bothered to glance at my intake papers.

"Have you done your preparation?" "Have you had this procedure before?" "Have you had any surgeries?" As my friend pointed out it's like they read off a laminated template and cannot deviate. I told the nurse I might as well have a parking stall there. I mean really, my back end could double as a teaching hospital at this point.

Then my surgeon's nurse comes and wheels me into the room. He was waiting for me. We chatted, I'm sure I was witty. Everyone is witty when they have a few cc's of Pentathol running through the veins.

"Joseline, your gastro Dr. Todoruk is here in the hospital today and I'd like to call him in for the scope so we're both looking at the same time."

To which I said

"You know what - you invite everyone you want. This could be a party!"

"Okay Joseline we're about to get started..."

"Hey, if I shine a light in a tube it just lights up the tube, but if I shine a light in a funnel the light shoots out everywhere. So...if you put that light in me and I'm not really hooked up to anything am I going to glow like one of those glow worm toys?"

"Okay Joseline, time to go to sleep..."

I did not actually go to sleep, I was mostly awake however definitely in a different dimension for the procedure. You lay on your left hand side and the TV they're all looking at is also right in front of you.

Now in my drugged stupor I was watching as something the size of a large lobster claw was pushed around and took "biopsies" of my remaining colon piece. It is very disturbing to watch something that large move around on your insides while at the same time feel the corresponding uncomfortableness.

When I mentioned it in recovery my nurse there, who was for the record about a million times nicer and cheerier than any of the nurses pre-appointment, laughed and said the TV is super magnified and the pinchers I saw are actually about the size of the tip of a pen.

I'll take her word for it only because I wasn't hemorrhaging when I finally came out of it all the way.

So now it's the hurry up and wait game. If the biopsies show that my colon that is left is diseased then it is no surgery for me. If it shows that it's healthy, then sometime in March when I get back from vacation they'll wheel me in. (A little later than the THIS TUESDAY they offered me...)

The only downside is that this surgery will not be laproscopic. Apparently when you're doing the equivalent of attaching two plumbing pipes with reducers and glue you need more room to work. So I can once again look forward to 40 or 50 staples down the middle. They will use my existing scar if at all possible which should mean that I have a double set of railroad tracks when they're done and I probably will have an even tinier bellybutton than what I came out with the first time.

Keep your fingers crossed for me, will blog more after my next surgeons appointment!