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.