A myth debunked

Your mother lied to you.

Let me go back a few hours. I was sitting at work today when suddenly I realized I had an amazing opportunity, an opportunity that was not afforded to me before I had surgery. See I have an ileostomy and what that means is a whole bunch of my insides are missing. The long, or I guess short, of it is that I digest food differently from most people and on top of that I can usually see what I ate in my bag when I empty it. When you have about 5 feet worth of digestion less than others it's good to note that things like lettuce, peas, etc don't digest as fully as you may think. Oh I chew stuff very very thoroughly but larger chunks still get through. The other day I had a whole pumpkin seed. Anyway - on to my point.

I was chewing on a piece of gum when my inspiration struck. Remember how your Mom always said if you swallowed gum it stayed in your stomach and didn't digest and eventually would make you sick? She lied. Nothing against your Mom, or my Mom or anyone's Mom but I have just totally debunked that little theory.

Don't get me wrong, I was nervous to try the experiment. There I was chomping away on a lovely piece of strawberry Trident and as much as I wanted to swallow the whole piece I got nervous. Not because I ever believed that it would just stay in my stomach but because I was worried it would try to work itself out, gum up my workings (no pun intended) and be big trouble for me. Even worse, what it it got to the opening and then due to internal gasses Chuck just started blowing pink bubbles?

Never fear - none of that happened. I swallowed my chunk of pink gum and out came my chunk of pink gum. At least little bits and parts of it which proves to me that it does break up on the inside and opens up the question what else do Mom's lie about?

Tonight I attended my first Edmonton Ostomy Association meeting. It was a packed house which I was a little surprised about - however there was no surprise that I brought down the average age in the room by a LOT. And I'm not a spring chicken anymore but I guess to some of them I probably was. They had door prizes of jelly beans and flowered oven mitts. They talked about the annual Christmas party and silent/live auction and how well World Ostomy Day went. And here's the funny part. Amidst all the false teeth, flowered blouses, sensible shoes and the lingering smell of A535 I felt more at ease and comfortable in that room than I have in a long time. I might not have a lot in common with the older set...I have no kids, not retired, don't live in an assisted living facility. But I do have one big, major, life changing thing in common with them and as it turns out it does not discriminate based on age and the one thing I had in common was more important than the million things that were different.

I knew that whatever I was going through they'd been there and done that. My appliance could fall right off in the middle of the meeting and I could have been mopping pink gum poo off the floor of the room at the St. Andrews Church and no one would have batted an eye or hesitated to help me in any way they could. I brought home a stack of reading and information about becoming a visitor for pre and post op patients and already gave out a couple of cards at the meeting and I'm looking forward to connecting with those people very soon.

I have some big things I'm working on - stay tuned for more blog posts and you'll be happy to know that things are going better with my systems and appliances. The whole meeting was totally worth one little sentence from Liz (the same woman who contacted me right after surgery.) She said "I get maximum 2 or 3 days wear out of my appliance and then I have to change it." Angels sang, the light was a little brighter in the room, I breathed deeply and was hugely relieved that I wasn't some kind of ostomy freak and that the amount of wear time I was getting was good. In fact, currently with my 3 to 4 day stretch I'm practically an appliance Olympian.

Chat soon, please remember to pass this blog on to as many people as you think may enjoy reading it or benefit from it. I think it's funny that if you head to the dentist everyone is sure to tell you how so and so almost died from getting a filling and you don't hear the end of it until you've been done with your appointment for months - but head into major surgery like getting a new set of digestive gear and no one breathes a word for months and then you hear things from family members like "my grandmother had one for years" or "I had an aunt who had one for 20 some years and it was wonderful for her health".

Great - the beauty of an ileostomy continues

I have been having difficulties with my equipment for probably around a month and a half or so and finally got in to see my nurse...she isn't entirely sure what the problem is either but she did send me home with a giant bag full of stuff including but not limited to adhesive remover wipes, new flanges and bags, a new belt for when I'm doing physical activity and even some bottles of lotion to help my poor dried up flaking skin (which we suspect is the main culprit in the saga of my flange not sticking properly to my body.)

But the coup de grace - the best thing she gave me - was this.

It is old and probably the last one she had. It's flammable so it can't be brought across the border anymore and it is glue. In the same kind of bottle and the same kind of applicator that plumbers use to put pipes together. I guess it's only fitting considering that it technically does have to do with my internal plumbing. Crazy. I did get a stern reminder that this stuff is flammable so to not apply it around open flame. Good thing I'm not a smoker.

I have also purchased from my health supply store a skin bond spray on adhesive so I won't have to use the 1950's glue in a can anymore...and I have my fingers crossed that things will get better and I can get to a point where I'm no longer super paranoid about my new friend and his ability to spew out waste at the speed of "one whole roll of toilet paper per half hour" in the middle of the night or during times when the flange needs to be changed rather unexpectedly.

By the way - if you do know you need to change your flange you can eat marshmallows (a good two handfuls of the little ones) and about a half hour to 45 minutes later your little friend will be good and quiet. Just don't be freaked out that when he finally spits it all out it may look a little strange.

All of that aside, despite feeling better than I have in years the new challenges that have come with my new lifestyle and the fact surgery is now five months behind me has me actually considering perhaps getting the ostomy reversed at some point. Not anytime in the near future but this is a huge jump forward from "I'm never ever ever going under the knife again." But none of this will probably happen until I've eaten my fill of green salad full of seeds and other difficult to digest things - oh and corn on the cob. YUM!

On a side note - personal accomplishment for me. Haven't taken a sick day from work since I got back in August. That is huge coming from someone who used to have to stay home three days a month on average. I also have loads of energy to play with my nieces and nephews and I stayed up until well after midnight all Thanksgiving weekend playing cards and other games with my family in law. All of it probably led directly to the turkey hangover I'm suffering from today, but well worth it!

Anyway, it's off to get ready to shower and change my flange and use some of my new skin bond adhesive.

My super power!

You know that age old question - if you could have any super power what would you have? It's hard to choose because so much would be very cool. Like being able to walk through walls, or being super fast or able to fly. But I finally have figured out what my ultimate super power would be.

Ready?

I would love to have the power to give someone an instant case of horrible diarrhea.

TA DA!

If you're confused then let me clarify that I spend most of my time while driving and attending public functions thinking of how nice it would be for rude, obnoxious, mean etc people to get a little kick in the pants from Karma. We went to a baseball game on this past Sunday and we had the evil "HECKLER" in the row in front of us. Now don't get me wrong, I'm all for having a good time, cheering on your own team like crazy and that type of thing. No this guy spent his life looking up the names of the other team and then would yell down to them and boo them while they were at the bat and say really original things like "he what was with that throw, you reading a book out there?"

And it dawned on me - if I could magically give him a case of horrible diarrhea he would have to leave his seat, I could watch the game in peace and it would not be a long term thing. And then it crossed my mind how awesome it would be to give that guy who cuts in front of you in traffic or the really rude person in front of you in the grocery store line an instant case of horrible diarrhea.

"What do you mean those green beans aren't on sale...you know what never mind I have to run here's all my money bye."

So - six years of marriage and I would venture to say I haven't felt this good during an anniversary. So what did we do? We went to an Edmonton baseball game and here's lovely shot of what my supper was - a supper I would not have been able to eat a few short months ago.

Mine was the one with chili, cheese and jalapeno peppers. YUM!

I've also managed to get back into badminton. For ostomy patients we have this groovy belt that hooks into loops on the sides of our pouches and wraps around our bodies. It holds your appliance tight and gives you a more secure feeling when doing physical activity.

It's pretty cool and definitely one of the best accessories I've purchased so far. More good news - my work's health insurance provider covers my ostomy supplies 100% - a fact not mentioned in the handbook but I took a chance and sent in my receipts and they sent me a lovely check. I feel very fortunate and it's definitely a burden lifted. Consider that five flanges cost $40 and you have to use one flange every two to three days and you can see how that would add up. And that's not even everything you need, that's just the sticky part that hangs on to your stomach.

Other accessories I've purchased - 2 diaper changing pads. Sounds funny but I use them to sleep here and at other people's homes. They have saved us a couple of times and saved a bunch of sheets. They're comfortable, small enough to pack and put away, totally washable and a nice peace of mind thing while I'm dreaming away.

I am still not overly happy with how things are going appliance wise. The adhesive is not sticking well and I am making an appointment to see my nurse to maybe try a different brand - unfortunately she's on holidays until September 21 so for a while I will be taping the appliance on with enough first aid tape to bandage everyone in a war torn country and just enjoying being pain free. The "non sticky" situation though has put a cramp in my swimming style for the time being but I am confident that I'll get it sorted out eventually.

On another note - cleaning my closet on Saturday was an affirmation that when I'm healthy God didn't mean for me to be a size 6. April 29 - day of surgery - size 6. September 1, day of blog - size 10. (And even one pair of 14 jeans...) Now a regular person gaining that much weight in four months should probably seek help but I needed the chunk. And so on Saturday I cleaned all the little tiny clothes that I no longer fit. Something I am adjusting too is that I could get into some of my size 8 jeans - but my bag and Chuck need a bit of breathing room so to speak and so I have to get stuff that's a bit looser. It means lots of trying things on and when I'm trying on pants I need to sit, move around, bend over and all that stuff in them to make sure the waist band will not cause problems.

I have also done one flight with my new ostomy - a short haul Edmonton to Calgary and home but Chuck handled it well and didn't expand or anything with the change in air pressure on the plane or anything. And I can't really describe to anyone who is a non-sufferer what it is like to not have ultimate panic when the pilot says you can't use the washroom because of turbulence. Now I don't even care! Traveling is going to be a lot more relaxing than it used to be.

Interesting tidbits

Some interesting tidbits that I've never had to consider before. I have to take you back to when I first got my ostomy bag. I have some serious paranoia about smelling like toilet. I mean when you think about it I'm wearing a bag of poo on my stomach. When a baby poops his diaper it's stinky, if you poop your pants it's stinky...so I think it's only normal to be paranoid for at least the first while that you smell like poo.

On top of that - if there's a problem with the appliance and you're leaking, one of the first signs is poo smell.

So for the first month or so I drove my family crazy asking if I smelled like poo, or if they smelled poo...you don't realize how many times a day you get a whiff of ass until you are watching for it.

Here's where it gets interesting. We were at the hot springs in Banff - I had never been before. It was my first foray into warm water with my ostomy bag and all and so I was even more paranoid than usual. I don't even want to think about how gross it would be for my bag to come off in a public swimming pool. Of course I didn't even consider that the hot springs would have a strong sulfur odor. So I freaked out the first time a waft of sewer smell came over my nostrils. I gave Paul a panicked look and asked if he smelled poop and if he thought I was leaking and oh my god let's get out of here! After he calmed me down he had to let me know every time he smelled the sulfur so that I could be sure we were both smelling the same thing.

Here's where it gets even more interesting. I am married to a very typical male I think. He burps, passes gas and generally is comfortable enough with me that the body functions don't bother him in the slightest. (A far cry from when we started dating and he would go home with a stomach ache from holding in his intestinal rumblings).

He's a big fan of farting in bed. He says it's something with laying down and how it puts pressure on different parts of his insides. Whatever. The tricky thing is that sometimes his farts don't make a sound. And then I'll get a whiff of poo in bed and before I used to know when it was him because let's be honest you know when you fart. But now I'm never sure and so he can hear me sniffing in bed and I'm all worried it's me. New rule - when he farts around me he has to let me know so I don't freak out.

All that aside, it was my first day back to work today and all in all it wasn't too bad. Not very busy, they got by just fine without me, but I certainly missed my couch time. Nothing too exciting to report on that end.

A new lease on life

I don't think it's an exaggeration to say that the surgery I had was life changing. Although learning to live with an ostomy is challenging at times - I am able to enjoy life in ways that I haven't been able to in years.

On July 11 we headed to Floating Stone National Park to enjoy a day of Leroux Family Reunion. We didn't camp out but I did use my in-laws trailer for a quick flange change and cleaning. Let me just say that trailer toilets are very very very tiny and emptying your bag while your sitting on a toilet barely big enough for a bum is difficult. The other challenge I'm having right now is the heat - it's making me itchy and so the adhesive around my flange isn't sticking as well as it will in cooler months.

We had a great time at the reunion, I didn't have to worry about being sick and I could eat anything I wanted. It's been a really long time since I didn't have to worry about that. And we topped off the evening by breaking out of the campground - thank you to Uncle Vic and Dad Henri for your efforts! I mean who locks the campground at 11 p.m. and then wanders away so no one can get out?

Then this past weekend it was off to Red Deer for my nephew's 5th birthday and then a few days of 'couple time' in Banff. I know you all think I'm crazy - who spends three days in Banff in July during peak tourist season? Well the answer is ME! And it was awesome. Thanks to the economic situation in the States Banff was very quiet. No crowds, no line ups, sales on in every store and we got to stay at the Rimrock Resort for half price. Adding up to a very nice holiday thank you very much.

We took in the gondola (which I've never done before) and went for a trip to the hot springs (also something I have never done). We did a bunch of hiking and a river raft tour on the Bow River. All stuff I either would have missed out on for being sick or would have done after taking about two tons of Imodium and spending all the time praying I didn't have to go to the bathroom. And of course suffering the after effects the next day of bunging yourself up on purpose in order to enjoy every day things.

Wearing my ostomy in the hot springs - no problem at all. It felt really weird at first and I was self conscious you could see the bag through my tankini top but you couldn't really unless you knew what to look for. There were only 35 of us at the hot springs and we had a great time. Also for hiking and other activities I have a cool belt that wraps around my waist and hooks on to my ostomy pouch to hold it tight to my stomach helping me to feel way more comfortable and secure.

We did see some wildlife - here is a great shot of Elk Bum that Paul took from the truck window. As usual some idiot tourists were way too close and were practically touching the elk trying to get a nice close up video of it. It's not a petting zoo people! Unfortunately this elk was very quiet and didn't go all crazy and make hoof meat out of them. I'm disappointed a bit because I had my camera ready to tape the whole thing and then I would have sent it in to America's funniest videos and been able to stay home from work for another couple of months with the money I would have won. Either way - someone should have run over said tourists with their vehicles to make sure they didn't reproduce and create stupid children.

I'm back to work in just a week and a half - the time off has flown by and I'm feeling better than I have in years.

Feelin' good and lookin' fine!

I go back to work on August 4. Which means of course that this month of July will fly by and I'll be sad that my time off is over. I have decided that I have missed my calling as a pampered St. Albert house wife.

I had a doctor's appointment on Friday, July 3 with my gastro specialist to discuss my medications. Final verdict - I have to continue on with my Humira injections because studies have shown that the injection should keep me in remission longer now that all my sick parts have been cut out of me. My doctor and I chatted a bit - he and the surgeon are both amazed at how much disease I had and the fact I was still walking around. He looked at me and said "you were one very sick little girl." I'm sure he meant Crohn's-wise and it wasn't a comment on my personality.

I have gained a bunch of weight - which is lovely for me. It's not every girl who would appreciate friends and co-workers telling me I've put on some pounds but I get what they're saying. I have to admit I'm finding it strange to look in the mirror and see this girl who is gaining weight - it's totally a mental thing cause I'm thinking I must be close to getting double chins or something even though I'm far from. I've also started to try to eat very healthy - a lot of vegetables and stuff that I wasn't able to eat before, which is sad for my husband who is more of a meatitarian and figures that eating the animals that eat vegetables is good enough. I bought the book "You are what you Eat" by Dr. Gillian McKeith and it's wonderful and full of great tips and foods and that type of thing.

I've been feeling so good that we've decided to do a little trip to Banff. It will be my first foray out and about and is close enough to home (4 hours) that if anything happens it's not a big deal. During this trip I'll try swimming for the first time and we'll see how that goes. I purchased a lovely belt that attaches to my ostomy flange and helps to secure it around my waist for when I'm doing activities.

We've got a bit of a roll going on now with Chuck - I had not had a blow out for about three sessions...until last night. Stupid. I have to say Paul is awesome at changing the bed and helping me get cleaned up at 2 a.m. which is the usual time. Chuck can never be active at say 6 a.m. or even 5:30 a.m. It's always in the dead of night. Whatever.

I will continue to update as I try new activities and do new things. A couple of things I've learned from being out and about - public bathrooms aren't great but they're not so bad. Mainly because many of the toilets are quite a bit longer in the seat making it easier to sit back and empty the bag. It's difficult though because a lot of them don't have a surface to set my water bottle on that I use to rinse the bag. Oh funny story - I was at Earl's in St. Albert with Paul for supper and I was just finishing up in the bathroom and refilling the bottle of water I keep in my purse all the time and a lady walked in and filled up a spray bottle before heading into the stall. I looked over and said "so how long have you had your ostomy?" and she was stunned. I showed her my bottle in my hand and we had a little chat. This particular woman suffered from diverticulitis and it was a temporary ostomy for her. By the way it was just the two of us in the bathroom, I didn't call her out in front of a bunch of other ladies, or heaven forbid the scantily clad big boobed female staff.

Stay tuned to find out what swimming is like and why I think my tankini will be too small for me!

The walk is done!

First off a huge thank you to all my generous donors this year who sponsored me to walk 5 km in the 2009 Crohn's and Colitis Heel & Wheel a Thon in Rundle Park. This event raises money for research into causes and cures for Crohn's and Colitis. 

The weekend was fabulous and wouldn't you know it - I went from 3 team members on the Potty Posse to 9 in the space of a couple of weeks and together we raised close to $2,500! It rained on us a bit but that just kept us from getting too hot and then we enjoyed fabulous burgers courtesy of M&M Meat Shop. 

Our team cleaned up in the door prizes - Henri and Ida each won restaurant gift certificates, my sister won a gift certificate to the Keg, James won a fabulous man bag full of spa goodies to keep his baby soft skin nice and touchable, and for a being a top pledge earner last year I got a stainless steel water bottle.

The 5 km took us about 1 hour, way faster than I thought we would walk considering I haven't done more than short walks slowly for the last 10 weeks or so. But I felt great, I feel great now and after a fabulous nap in the afternoon I could stay up until well past 9 p.m.! I am dealing with a bit of an infection but nothing too serious. Some antibiotics are helping to put me right and I've managed to get through three books already and it's only June.

I'm hoping to have more team members next year for team Potty Posse! Everyone is welcome, please do what you can to raise a few dollars (there is no minimum) and come and join us in the 2010 event. The last screen of the video may be a bit hard to read but it says

THANK YOU to the walkers and donors - from the bottom of my heart. Joseline.

Oh yeah - turn on your sound for the video!

Taking it one day at a time!

Hey kids and puppies sell! Besides, this is a much nicer picture than a railroad track scar and a bag of poop.

I also have it on good authority from one of my husband's buddies that I would get a lot more people reading my blog if I would just lift my shirt higher in the photos. 

So tomorrow is 5 weeks since surgery and I'm still having loads of problems with my hardware for my ileostomy. We had one day on the weekend where we had to get up for an emergency change in the middle of the night and then had to do it again by 11 a.m. that morning. Last night was the first night in about three that I didn't have problems. 

I had a big appointment with my ET nurse last week and she gave us lots of stuff to try to get the flange to stick to my skin properly and seal - so we're on method number three and so far so good - but it's barely been 24 hours and they're supposed to last five days. 

Yesterday I had my follow up appointment with my surgeon. I think it's a prerequisite that as a surgeon you have to be totally laid back and calm to the point of being a bit maddening to patients. I waited an hour to see him at the hospital, he walked into my room looked at my scar said it looked good and then asked when I wanted to see him again. I'm pretty sure that was supposed to be my question to him - but hey. So for all that and Paul having to take a whole morning off work we were with the doctor for about five minutes. Whatever. That's better than some of the people in outpatients at the Royal Alex to see another doctor who got called away for emergency surgery so they all had to reschedule.

Good news from yesterday, my surgeon wants me off all medicine of all kinds. Basically I have no Crohn's left in my body - not to be confused with a cure - and that sounds wonderful to me. Actually when he said that my exact words to him were "talk dirty to me some more". So I have an appointment with my Gastro specialist to talk about it - but I can't get in to see him until July cause he's a busy guy and now that I'm feeling good it's not really an emergency. I'm cool with that. 

So other than that I've tried a couple of outings. I have gone to two movies - both in the afternoon when it's very slow and that has worked well. I've also gone to watch Paul play slo-pitch two Mondays in a row. They play double headers and even though I'm sad I can't play this year I'm happy to cheer them on, visit and keep score from my cushy chair. At least I'm outside and it's something to look forward to. I'm really worn out the next day though but that and the soreness after being out is getting better.

Eating - that has finally started to work itself out. My stomach has stretched and I can pretty much eat a normal portion at meal times and I don't snack nearly as much. I've put on 4 kg since I came out of the hospital and I feel good.

Next Sunday June 14 I'm going to be walking 5 km (slowly but I'm going to do it) in the Crohn's and Colitis Heel & Wheel A Thon. I'm looking forward to it - it's at Rundle Park and my team's name is Potty Posse. We are going to have shirts and everything. This year the team is me, Paul and my ever supportive sister. Next year I would love to have more walkers and fund raisers with me. There is a free barbecue after and Rundle Park is actually very nice.

Thank you to everyone for your well wishes and words of encouragement. Oh - on a side note I've decided that besides helping out with the Ostomy Society here in Edmonton and my other hobbies I'm going to work on cooking my way through a bunch of cookbooks this summer. I love cookbooks and read them like novels and so I've decided to try a bunch of recipes. So far I've made peach shortcake muffins, triple chocolate cookies, a greek pasta salad and some barbecue chicken and steak recipes and they've all turned out awesome. Paul and my sister are entirely supportive of this particular phase of my healing! I don't cook a recipe every day but I try to do a couple a week and it's fun, gives me something to plan for during the day and hey why the heck not!

I'll be posting a follow up and pictures after our walk next weekend - stay tuned!

 

Everyone - I'd like you to meet Chuck.

Well tomorrow is three weeks since surgery and I have to say the time has absolutely flown by. It's like I blinked. Today I finally got the last of my staples out - a little bit of stinging but nothing too serious and I'm finally ready to introduce you all to Chuck.

Chuck is the name of my Stoma - which is the medical term for the small intestine that is now protruding out of a hole on the right side of my stomach. Here is a picture of what a stoma looks like - it's not my stoma because I didn't feel like taking off my bag and getting all cleaned up for one picture so this is an internet picture, but they all pretty much look the same. (This one is way more healed than mine is right now - I still have disolvable stitches around mine and it's got a more crater look to it. Plus they shrink as they heal so every couple of days mine is getting smaller.)

This is what my tummy looks like now while I'm wearing my bag. You'll notice in the top picture the appliance has a ring that is like tupperware and that is how you change the bag. The sticky part on my skin gets changed once every four or five days. I can shower, bathe, swim and all that good stuff with it. The bag usually sits in my pants waist band so you can't even tell I have one.

I have what is called an ileostomy. That is where my small intestine is sticking out of my body and something that I have to keep in mind is that it is a surgically made hernia so it is healing and will always be a little bit weak and I'll always have to be a little bit careful of it.

Basically this bag fills with poo all day long and I empty it several times depending on what I'm eating and how often I'm eating. I won't lie - my first day of really being aware and taking care of it in the hospital was not a good day. On top of the fact you have to get used to all this surgery and pain - the bags they stick on you in the hospital are clear because doctors and nurses insist on knowing what kind of poo you have, how much you have, how often you have it and all that stuff. Not good times. I'm much happier now that I'm at home, it's a private thing and the bags I have are not see through. Much nicer.

First impressions - it's weird. I compare it to waking up with boy parts. A guy's equipment moves around during the day and does its thing and guys are used to it and its no big deal. Stomas are constantly moving - the same way your intestine constantly moves in your stomach to push food through your digestive system. The difference is when it's all in your abdominal cavity you can't feel it, but when it's on the side of your body you notice it.

A very nice lady named Liz from the Edmonton Ostomy Society called me right after I got home from the hospital and we spoke for probably about 45 minutes. She's had her ileostomy for 35 years and was a great help to me. She had great advice, was a good listener and even has two cats of her own and warned me to watch out for what she calls her little bag busters - they can puncture your bag with their claws if you're not careful. Good to know and not something I had thought of - especially since I have two little bag busters of my own.

Now I have to say that she was honest with me and said that all ostomy patients had accidents and we carry kits to make sure we're prepared. I had to say that as a Crohn's patient I would be lying if I said I hadn't had any accidents before the ostomy so really this is just a new thing for me to learn to live with.

As I'm going along there are huge advantages to this fabulous bag. I don't have anymore abdominal pain from illness. There are no more "oh my god I have to find a bathroom right freakin' now or I'm going to mess myself" feelings and even more important - if the bathroom is gross I don't have to use it. I can wait and empty the bag in a more clean and better environment. It means car trips are going to be easier, life is going to be easier and I may even start sleeping through the night. Oh yeah - and when I pass gas no one can smell it or anything. I don't have any control over anything like that and sometimes the gas noises that the bag makes are a bit funny - but now I can fart in an elevator and no one would be the wiser. Nice!

When I first got home from the hospital we had some problems with some bag blow outs. I am currently coming down off prednisone and one of the side effects is terrible night sweats - so much that I would wake up and the sticky part wouldn't be stuck to me anymore and I would be coated in a nice layer of poop. Those 2 a.m. bag changes complete with clean up certainly teach you how to take care of things for yourself way faster than home care nurses.

Paul has been really awesome, getting up and helping me get cleaned up. We haven't had a blow out night for about a week and we're both very happy for that. I have learned that if you eat really gassy foods during the day you can wake up with something that looks like the Snoopy blimp on the side of your body - and I've heard that some ostomy patients get so gassy they have blow outs from that but I'm not up to eating that way just yet. Paul is my official "cutter" and he fits the sticky part on my skin. It's still painful for me to bend over or look down too far so I can't see the bottom of Chuck very well and he has a better view. Plus on top of that the first time I tried to cut through the hard plastic part that fits around the stoma I slipped with the scissors and gashed my thumb open. I think I must have failed arts and crafts in school. 

So I've named my stoma Chuck because I don't want to call it the Stoma all the time and besides he "up chucks" my food so I thought it was appropriate. 

I have healing pain still, but I haven't had to take any pain killers for three or four days now. I get tired very easily. Going around the house isn't too bad but tonight the trip to the doctor's office and then a trip to Shopper's to buy some Polysporin was enough to wear me out.

I eat six times a day right now - part of the small stomach thing. It's small plates of food but I pretty much nap and then eat, nap and then eat. Last night I actually had to get up in the middle of the night to eat because I was so hungry. My body doesn't get liquid and salt the way it used to so I've had to make adjustments for that. But as the weeks go by I get to eat what I used to - I have a chocolate bar in the pantry with my name on it - and my stomach stretches a little more all the time. When I first got home from the hospital one piece of toast with too much peanut butter was enough to put me over the edge pain wise - now I can actually have two pieces of toast in the morning and be okay as long as I don't over do it with the peanut butter.

So there you have it. I'm healing slowly but surely - slower because of the steroids. I am eating, resting and generally not able to do a lot of anything as of yet. Still can't lift a milk jug and I have to be careful with any twisting motions. It means sleeping at night is a bit of an adventure. I can't just roll over and be comfortable and there is barely enough room for Paul in bed with all the pillows I need to prop me up.

In about a year we will consider doing the surgery to put me back together but I have to be honest and say at this time it's not something I'm even remotely interested in. Turns out I can get pregnant and everything with this little bag and going through surgery pain is not something I'm eager to try out if I don't have to. The size of my one scar is enough for now.

I am going to be attending a couple of Ostomy Society meetings - they don't have a lot of younger people and I really would have liked someone around my age to talk to at the hospital. My ET nurse (she's my ostomy nurse) is awesome, but it's not the same as talking to a 30-something about what it really means for daily life. I hope maybe I can visit ostomy patients at the hospital and help them - it's something I'll be looking into. I'm also hoping Paul will become involved in the spouse support group they have. They have a few wives but from the sound of it no husbands. Our partners go through it just like we do - with different emotions and even though I'm extremely lucky (Paul assures me it doesn't gross him out - he knows it's poo but it's not the same he says) I'm sure other people aren't as lucky.

Thank you to everyone for your well wishes. I'm doing well - still not able to do things like shower without my shower chair or walk very far but every day is better. Life doesn't have to be perfect to be great!

Warning- This posting rated PG13 for graphic content

Here's a fun little exercise for you. Have someone you trust help you lay down on the couch and they have to do all the support and work for you. You can't even twitch a baby toe nail to help them do it otherwise it will send you into shock waves of pain you won't recover from for hours. Betcha can't do it without tensing up muscles.

I'm home from surgery - in the hospital 6 days total. First day - let's call it primal scream therapy. I woke up from anesthetic violently - who doesn't when they have a giant breathing tube shoved down their throat and then some dimwit nurse in recovery screams in your ear cause you're still out of it they can't take the tube out until your strong enough to lift you chin to your chest after surgery. Try that one without using your abdominals. I managed to get a death grip on a nurse to my right and made enough of a commotion my anesthesiologist actually came out of the surgical room and told them not to be dimwitted, I had just had major surgery and it's not that I couldn't lift my head it was that it hurt too much and to take the tube out since obviously I was strong enough to cause pain to faceless nurse to the right.

The rest of the day brought forth screams of pain that I cannot find it possible to describe to you. I had an epidural for pain control and morphine being pumped constantly - I'd hate to know what it was like without that. I wasn't screaming words, it was deep down bottom of your soul pain screams...Paul says he never wants to hear that again, he had to hear it when they moved me from my recovery stretcher to my hospital bed. A really great nurse came out and sat with him until I had stopped sounding like a prisoner at a torture camp and explained they were going to work fast to get my pain under control. Something that didn't happen until much later that night. I laid there in a state where all I could do was control my breathing and not even speak. I had a giant nose tube that went into my stomach for drainage and even moving a finger hurt.

Thursday was much better for about 10 minutes until the fire alarm and the patients were evacuated. Almost the whole  hospital was evacuated and you would hope they would just move the beds but no - just as my nurse came in and called for help to put me in a wheel chair and I had tears running down my face they called an all clear. Right then Paul rushed into the room. He had shown up and saw fire trucks everywhere and the whole first floor of the hospital by the doors were stretchers and wheel chairs and emergency workers. He was panicked and so relieved to find me in my room. My nurse, myself and Paul all took a good hour after that of doing nothing and just calming down. A giant circulation fan in the hospital had a bearing go out in it and it filled the whole place up with smoke. The fire alarm went off again on Monday too but no evacuation order that day.

From there it was pretty much all up hill for me. Thank goodness. Got some great visitors, gorgeous flowers and cards and thoughtful gifts. So here is the update.

I was supposed to have the surgery laproscopically - and this is what my scars would have looked like if that had been possible:

That would not have been so bad I don't think, but unfortunately I was not able to enjoy this benefit of modern surgery. This is what my scar looks like today:

This is 42 staples in as neat a row as you can get that run right down my whole front and it takes up about 8 inches. I get the staples taken out on Tuesday at my family doctor. I think the scar should end up looking quite good. I'm going to make sure I put Vitamin E oil on it so it stays soft.

As you can probably guess, my recovery time will be much more significant.

Oh yeah, and this is what the backs of my arms look like today - while in the hospital and not able to move they give you shots of blood thinner to prevent clots and they are painful and I bruise easily. You get two shots a day every day. It freaked people out when I rolled over in bed.

And here is the grand finale - the stuff covered in pink is now what I no longer have!

Basically what happened - and keep in mind my surgeon is VERY conservative about what he takes out because Crohn's patients usually require more surgery - my large intestine was so inflamed and distended it had to mostly be removed, my appendix is gone, they had to remove part of my small intestine that was also very ill and because of everything wrong with my large intestine it had actually caused a twist in my small intestine they had to fix (they straightened it and didn't have to remove it but I could have died from that part if it hadn't been found and fixed) and they had to fix a fistula that no scan ever picked up and last but not least - after all this major surgery my stomach had actually fused to my large intestine and a small piece of it had to be removed as well. So on top of everything else I basically had gastric bypass. Awesome.

Amazing what you can do without hey? Paul says the operating room must have had parts flying around it with doctors saying things like 'don't need that, throw that out there, nope don't need that and let's just say we won't need that either.'

I now have an ileostomy - a small portion on my small intestine is actually attached to the outside of my right stomach and this is where my waste actually deposits into a bag. I will be talking more about it and posting pictures later - it's still something I'm dealing with emotionally and spiritually and physically and I'm just not ready to go there yet. For those of you who are curious - my bum hole is sewn up on the inside - I no longer feel the urge to go number two it just happens and I go pee just like a regular person, although right now it's a bit painful cause I had a catheter in for five days and my bladder is like the rest of me - it liked being lazy and now that I'm forcing it into action it complains a bit.

I'm drinking lots of white cranberry juice slowly, eating 6 meals a day and I have to be careful what I incorporate into my diet for the next six to eight weeks. I have home care nurses and dietitians scheduled to come visit me for the next couple of weeks to help me and Paul and make sure we're okay and it's a learning process.

I don't know what I would have done without Paul - for those of you who have someone really close to you who will be in the hospital, the absolute best thing possible you can do is to show up with really soft wash cloths -we're talking like the kind babies get and give that person their sponge bath when they can't get out of bed. The nurses don't have a lot of time, you end up trying to maneuver and clean parts yourself and the towels and cloths at the hospitals are horribly rough and scratchy. You feel more abused than clean at the end of it. A nurse only gave me one bath, after that Paul did everything and I can't tell you how great it was for me. The nurses even enjoyed that they had time to look after other things and they showed him where everything was and left a basin and soap in my room so he could wash my back and legs whenever I felt like it.

On a final note - coughing, sneezing and laughing, all things that require major abdominal usage and all stuff that sucks right now. Anyway, I've been sitting at the computer for a while now, I'm going to do a couple of laps in the kitchen and then sit down and put my feet up. Thanks to everyone for your well wishes and thoughts, please keep phone calls to a minimum this week if possible. We have odd sleeping hours right now and although I'd love to talk to all of you this moment I don't have it in me.

Officially done work

Well it's Monday and I didn't have to go to work this morning. It feels weird, and at the same time I'm very happy. It was a huge struggle to go to work the past week, no medication means that I'm not feeling so hot to begin with and I was feeling stressed about the last week.

I was so exhausted that I think I slept most of the weekend away, but I'm feeling good and refreshed this morning and energized. Ready to meet surgery day head on!

By the way for those of you wondering, it's been almost two weeks and my two 'x' marks are still on my tummy but the covering on them is not. I took them off almost a week ago - they were hugely uncomfortable and I still have marks from where the sticky covering was. Also - I have a hairy tummy apparently and ripping off that sticky coating wasn't the most enjoyable thing I've ever done. So now Paul re-draws the 'x' marks for me after my shower in the morning.

Today is day one of the cleanse. I am eating Jell-O and drinking lots of clear fluids. Tonight at 4 p.m. I take my first bottle of 'cleanse' and live the rest of the evening in the washroom. Paul is playing baseball tonight and my sister is at her massage clinic so I'm pretty lucky to have tonight all quiet and not smelling cooking for supper or watching people eat or making them get out of the bathroom cause I want to use the one on the main floor.

For those of you who are wondering - I will be at the Royal Alex and yes visitors are very welcome! Paul will be sending out an email on Wednesday after surgery (maybe Thursday) and let everyone know how I did and what room I'm in. 

I am not nervous for surgery, but I'm not looking forward to drinking the bottles of stuff so that is probably distracting me. Wednesday morning might be a different story!

I will keep you all posted, thanks for all your well wishes. Please remember that Saturday, May 9 is the 21st annual Crohn's and Colitis barbecue at M&M Meat Shops (every store) and for only $2.50 you get a burger or hot dog, juice and potato chips. All the money raised goes to the Crohn's and Colitis Foundation of Canada. 

Talk to you all soon!

The pre-admission

Yesterday was my pre-admission clinic at the hospital. My appointment time was 9:45 a.m. - and I have to be honest I cut it pretty close. Without Paul around I'm more prone to being late than on time so I showed up at the check in desk at 9:44 a.m. Not late but not too early either.

They signed me in and showed me to a room where six other people were sitting. I thought "okay there are 7 of us about to have surgery". Nope there were four of us about to have surgery, I was the only person there alone. Well - one teenage boy had his Mom with him so that doesn't count but the other two gentlemen having surgery brought their wives.

Paul has guilt over it and I laugh cause really it would have been a really long day for him sitting around doing nothing.

The first thing that happened is two nice nurses came in and went through a fabulous slide show presentation. It had pictures from the 1950's of doctors with giant pimp mustaches smiling down at patients wearing make up and equipment from the stone age. Interesting note - the hospital gowns the patients were wearing in the old photos have not changed one bit from then to today. Hmmm..

Anyway, after the nurses go through a bunch of stuff like how you have to take off your nail polish before you come in and how you can't wear make up then they take you and sequester you into your own tiny exam room where you put on one of those fabulous snowflake gowns and wait.

The one nice thing about pre-admission - all the hospital specialists come to you while you sit in the room instead of you wandering around and doing tests all over the hospital. The first lady who saw me was EKG and she did a heart test on me. It honestly takes longer for them to put all the little sticky nodes all over your body than for the computer to run it's test.

While she was doing that the lab techs bust in and my room was full to the brim until EKG wheeled out with her computer. I had a student lab technician and I had no problems letting her take my blood. We all have to learn some time and she was very nice. The lab tech who was training her chatted with me while all the vials were filled up and then they fitted me with this lovely pink bracelet.

This beautiful pink bracelet must stay on from now until after the 29th when I have my surgery. It contains a blood bank number and if anything happens during surgery and I need blood - they'll give me back some of my own. Genius in my opinion. And even though it's a bit of a fashion risk it's waterproof and I don't have any problem wearing it for a week and a half. The lab tech did confide in me that some patients didn't take that relaxed of an approach to wearing the bracelet ie the stripper she took blood from yesterday. The lab tech whispered the word stripper and we both had a good laugh. I mean as long as it wasn't covering her nipple what was she worried about?

So the next person in was a very nice nurse named Pat. Complete with glasses that were looped by a gold chain around her neck. Loved it. Anyway, she went through all the surgical procedure stuff with me. Surgery is scheduled to take 3 hours and 44 minutes (I laughed and asked how my surgeon could be so exact - she explained that the surgeon types in the procedure and the computer spits out a time). I hope I'm not booted out of the OR if it takes 3 hours and 46 minutes - but I'll be asleep so really I won't remember anyway.

I'm scheduled to be in the hospital for five days and then she handed me my two bottles of CitroMag which is a lovely salty 7 up concoction that makes you wish you had a seat belt installed on your toilet. Why did I get two bottles you ask? Because I get to go through two days of bowel prep not just one. Fabulous, two days of broth and jell-o and running to the loo. And for all of you thinking there must be some other way - there is. I could have chosen the "Go Lightly" solution which has a lovely name but you have to drink four litres of it at a time. That's right four litres - the size of a giant jug of milk. No friggin' thank you - my CitroMag is only like 300 ml. And I'm not sure why they call it Go Lightly, I think that's some kind of cruel joke they play on patients. Anyone who isn't "in the know" when the doctor asks what kind of prep they want to do would probably pick that one because the name is so much nicer.

After the nurse visited I was seen by a doctor. Here's where it gets weird. I would like to start off by saying that I am very fluent in gibberish and usually have next to no problems with accents. This little guy was brown and besides a terrible accent and I couldn't make out a thing he was saying - wait for it - he had one eye that was totally crossed. That's right. One eye looked right at me and his other eye looked right across his face over his nose and towards the wall. So besides that fact I couldn't understand a word he said I couldn't even concentrate because his eye was so freaky.

Luckily for me Dr. Cross Eye managed to figure out I was having a hard time understanding and we got by on some sign language. About five minutes later another doctor came in and it turns out my cross eyed little brown guy was an intern and this other doctor was training him that day. New doctor didn't have a lick of accent and I figured out everything he was saying. He asked me if I was sick in any way other than my Crohn's I answered no I thought one incurable illness was enough and after looking through my paperwork announced that he didn't foresee me having any difficulties with the surgery.

Now came the wait - I had to have a visit from the ostomy nurse - she's the nurse who helps fit you with an ostomy bag, trains you how to take care of it and all that jazz. Turns out my surgeon who happens to be new to this hospital (even though he's not new to surgery) didn't even think to make those arrangements for me but nice nurse Pat with the glasses did. The tricky part - I had to wait for about an hour and a half before she showed. Good thing I brought in a good book.

So Donna - the ostomy nurse showed up - and by the way they are technically called ET nurses even though I have no idea what it means. Donna is wonderful, and she brought several books and an example of what my ostomy bag will look like.

For those of you who don't know an ostomy is where they take part of your intestine and have it pulled out through the skin of  your stomach, then they fold it out like the cuff of a shirt sleeve and it heals and your body eliminates poop through that hole. A colostomy is when it's your large intestine is pulled out, an ileostomy is when it is your small intestine that is pulled out. Donna and I are unsure which one I'll wake up with - but she says if I have to have one I should hope for the colostomy. I'm going to take her word on that.

Next thing we did - she marked my tummy with two black x's - these are the appropriate sites for the ostomy when it's done. She assured me I certainly didn't want my surgeon picking a spot since I'll be lying unconscious on the bed and he won't be able to take into account how pants fit, how I sit and how I walk and what would be comfortable.

These black x's must also remain on my body for the next two weeks. 

I don't know if you can see it in this picture but my two x's are covered by some clear bandages the kind they use like when you get an IV. So I'm all water-proofed up but I have to be careful not to let too much water wash over them or rub them off.

So basically after the x's I made fun of the pamphlets she gave me which were covered with pictures of very happy, very active senior citizens. Then she wrote her name and number in both books she gave me and told me to give her a call if I had any questions at all about the procedure before my operation.

By the way - Paul now calls my tummy the smiley face, he says if I just put a line under my belly button it would be complete.

I'm tired of writing now. I have had to go off all my medication to get ready for the surgery and I am starting to really feel the effects. A week and a half can't come soon enough.

A tiny donkey named Phil

I think my surgeon's nurse Nicole wants to be my best friend. How else can I explain two phone calls within one hour on Thursday, April 2.

The first phone call was to tell me my surgery had been cancelled and I had to go through another throat scope. I took the news relatively well. It wasn't until I hung up the phone that I had a little crying hissy fit.

The second phone call was to let me know that I didn't have to go for yet another throat scope, but that I did have to come in today (Monday) and speak to Dr. Karmali about the results of my Barium swallow.

So in the three or so days of time in between to wonder what we were going to talk about I came up with the best case scenario. They were going to take out all of my digestive system which doesn't work worth crap and replace it with a tiny, but efficient donkey eating machine. I would name him Phil.

I had my appointment today - turns out they're not interested in installing a Phil - but I do have about 16 centimetres of additional intestine they are thinking about removing and the surgeon is slightly concerned about what my stomach itself looks like.

So concerned about it that he had a long talk with my regular gastro specialist but he still wants to do his own stomach scope right before surgery. 

He assured me we could talk about the results before the operation. I pretty much laughed in his face and told him he better chat about it with my husband cause I wouldn't be all there after a throat scope. I'm a junkie what can I say. The drugs he's pretty sure would just make me relaxed actually make me pass out sleeping and I don't remember the day that follows. Good for me in that I go through most things pain and discomfort free, bad for doctors who want to chat with me about results.

Anyway - he says that he doesn't think he'd have to remove any of the stomach and even if it looked really bad he wouldn't do it at the same time as my other surgery anyway because I'm already having quite serious surgery and the stomach thing would be that much more.

I will have a temporary stoma and ostomy bag - something new for me to learn about. I'll let you all in on the fabulousness of it when I wake up from surgery and am back home.

So surgery is back on for April 29 and he's assured me that he will try to do as little damage as possible to my tummy - but he may have to make a larger incision than originally planned. I assured him my years of bikini modeling were past and so it's not a huge deal for me. Besides scars are cool.

Day one

Well, I've never had a blog before and honestly just recently learned how to text from my cell phone. I decided to start a blog to keep friends and family in touch with what is going on - specifically to do with my health.

On April 29, 2009 I will be going in for surgery to remove part of my colon. I have been battling Crohn's Disease for 11 years and for the first time I will have to be admitted to hospital and will come out with a bit less in the parts department.

They will be removing a portion of my descending colon called the sigmoid and while my surgeon is in there, he will also be looking at the section where my small intestine and large intestine join up. That's that area on the left of the picture where your appendix hangs down and that. If it looks ill and badly damaged they will also be removing some of that section.

Today I had a Barium swallow with follow through at one of the local laboratories in Edmonton - sounds like that part of the small intestine will be leaving me as well.

Things I have learned from going through two of them in the last three months:

1) Because my digestive system doesn't work like a normal person's and right now food is having a hard time getting around because of scarring - the test took four freakin' hours. I read every magazine in the place - lesson learned. Bring a really good book.

2) Just because the Barium is flavoured doesn't make it better. You can berry flavour dirt and it's still going to taste like dirt.

3) I was joking with the doctor that I was going to start glowing after all the x-ray photos - he very seriously assured me that the level of radiation used is so low that there is no chance that I'll glow. I guess it's good to know, it was also good to know his sense of humor is a little off so I didn't joke about that anymore.

Along with two Barium swallows and follow through I have also had a throat scope, colonoscopy, CT Scan and numerous blood tests in the last few months. I've also been on a wide range of medicine - Paul calls it my 'bucket o' pills' that I have to take every morning.

I'm also now on an injection drug called Humira. It comes in an epipen and I jab myself in the stomach with it every two weeks. 

All that being said, I look pretty healthy right now. The doctor at the lab was surprised I had active Crohn's disease but that's the miracle of modern prednisone - and even though the looking healthy and feeling great is totally thanks to medication, I'll take it.

Am I nervous about surgery? Not really. But I can say that today, it's only March 30. I've always known there was a really good chance, almost a certainty, I would have surgery eventually. I think the stats are that 80% of Crohn's patients eventually need to have surgery, I've been hugely fortunate that I've managed to go almost 12 years without having it done.

My surgeon has said he will be operating laproscopically - so only two tiny incisions and a small scar by my belly button and so far the news is that if I do wake up with an ostomy bag it will probably be temporary and for healing purposes.

For those of you who don't know - an ostomy bag is where they have your intestines actually empty into a pouch that is connected to your body. 

I won't know until I wake up from surgery what all has been done.

Anyway, I'm going to try to post things regularly. About how I'm feeling, my medications, living with Crohn's disease and that type of thing. I have learned from having it this long that there isn't a whole lot of information out there in one place about the illness and sometimes the little tricks to make you feel better aren't out there at all and you find them out by accident while talking to a Chiropractor or a pharmacist.

Please feel free to ask me any questions and I will be honest and straight forward in my answer. There is not enough known about Crohn's disease and other IBD (Irritable Bowel Disorders) and I would love to help people learn about it from the point of view of a patient living it.