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!