When Everything Goes Wrong: My Week from Hell

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1228
tess45
May 10, 2012 11:45 am

Ever have one of those days... the day that everything you touch goes to hell? Well, mine started early last week. UGH... Let's see - starting with the appliance - since last Saturday, I have had to change 5 times!!!! In fact, a new one blew out on me yesterday about 15 minutes before I had to leave for work, so of course, I had to change it again last night when I got home. So that's 5 bags, 5 flanges, and 5 sure seal rings. And let me tell you, that was a real bitch getting off after it being on for only several hours - didn't think my skin could stretch like that (and screw the upside that it didn't blow out at work - not feeling very Zen about the whole thing). What a pain in the ass LOL - it's been shitty - literally LMSO... My sleep pattern has been all over the place - get home at 5:30 pm or so from work - eat dinner and the next thing I know I'm out like a bear in hibernation, snoring, drooling, etc... then awake around midnight and I can't get back to sleep - let me tell you all there is nothing good on TV in the wee hours.... Reading is too much like a chore at that time too... I've been given two new jobs at work that will be mind-numbingly boring and tedious (now if I could only be like George Constanza from Seinfeld, I could build a bed under my desk and sleep there). But I think someone might notice... Still no date for surgery - can't find a good used iPod on Kijiji - the cat is being an asshole and no good guys on the dating sites - the upstairs neighbors are driving me crazy - just want to go up there and kick some ass...

I need good news, people - I need to hear from people who are having positive, productive days - I need perspective - send me good stories and feelings or at least share in my ennui.

Oh, and to top it off, Chapters didn't have my favorite licorice - bastards!!!

Come on and help out a pal.

Let the good times roll.

Thanks for listening.

Terr.

Past Member
May 11, 2012 6:48 pm

Hi Tess, I can certainly relate to the change of bags. It happened one day like that. In the end, I phoned the emergency GP. They sent a nurse out. That was a bad idea. My skin was hell red, bleeding, and very angry. As soon as the nurse put a bag on, said goodbye, the bloody thing fell off. In the end, I was so tired. I left the bag off. It was nighttime. I wrapped a towel around me and fell asleep. I was too exhausted to try anymore. In the morning, I rang the stoma nurse. I got myself to her clinic, still wrapped in a towel. She treated my skin and put some different seals around the stoma and a bag with no tape, just a belt. My skin couldn't stand any more adhesives on it. It stayed on a good two days. After that, my skin started to heal. This has happened lots of times, and I've managed to sort it out. But sometimes that doesn't work. I think I can say I was having a bad 24 hours with skin and bags. Sorry to hear you haven't got your date for surgery. If these doctors only knew what pain we suffer mentally and physically in the waiting game. Tess, don't let life get you down. Go kick some ass! LOL. I hope things get better all around for you. We're always here for you. Don't stay alone. Come and shout or vent all you want. Take care, Ambies xx

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tess45
May 11, 2012 10:09 pm

Hey Ambie - just to add to the list - my right thigh has an awesome rash, and if that's not enough, it's also starting to rash on my lower right side (that's from tape for the wound), and let's not forget my right shoulder - that's just f#$#ed.....Hey, it can only get better from here, right? LMSO :-) Just like it did for you - yeah, I've had your kind of day too - especially when I developed an allergy to the Coloplast product. Not really a rant - just trying to be a bit (dry), so to speak, sarcastic humor. So I challenge anyone, go ahead and share those on a fast bobsled to hell kind of day stories. Like Red Green says: Remember, I'm pulling for you, we're all in this together. So let's have some good laughs!!!

Past Member
May 12, 2012 2:58 am

Hey Tess.. Sorry to hear about your troubles. Just last week I had 4 leaks within 2 hours. My skin is so painful and red. I have found some bags that are really awesome and I can go 8 days without changing or leaking. They are the new skin from Cy-Med Corp. Awesome product. I started my ileostomy journey with an open mind, positive attitude, and a hell of a lot of support from my family and all my friends and people on this site too. It has helped me so much to stay in a positive state of mind. My hubby bought me 4 funky wigs, dark purple, light purple, lime green, and electric blue, to help keep me in good spirits. He spoils me rotten too. Even on my very worst days, when I get on here and just read through the blogs, I get in a better mood. Plus, I use a lot of sound therapy, got 3 MP3 players full of various music and relaxation sounds. And scented candles (unlit, I just sniff them when I need to calm down or ease my nausea). It helps a lot. I also color and knit a lot too. I have found if I have a purpose or job I can stay positive longer. So, I knit hats for the Cancer Institute, I am donating 25 hats on the 21st of this month. I hope you continue to blog and get the support you need. Sending sunshine and smiles your way. Mandy

weewee
May 14, 2012 10:55 pm

On May 12, my daughter had a little girl that was 8 lbs 2 oz. So now the spoiling starts from Great Great Grandma to Great Grandma and Grandpa. Good luck! I told my son-in-law, "When we are done spending time with her, we'll hand her back loaded with candy, soda, and wired to the moon. Have fun and remember, you can't yell at her because she was with grandparents."

 

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

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lyricalaska
May 19, 2012 8:18 pm

Congratulations, Weewee. We have a new grandchild too... She's just turned 5 months. Wish we lived closer to my daughter and family, but we're about 3500 miles away. Enjoy that baby!

Primeboy
May 19, 2012 8:07 pm

Hi Tess. It's fair to say that often, when it rains, it really pours. Positive stories really help, if only to distract us for a moment from all our issues. Here's a great story you will enjoy. It's a movie called The Best Exotic Marigold Hotel. It's about older Brits whose cats may not be assholes but whose circumstances more or less stink. It's fabulous escape entertainment but with a sobering message on making choices and good connections. I have recommended it without reservation to friends, and I might go back and see it again when the dog bites or the bag leaks. PB

mooza
May 23, 2012 11:37 pm

Hey Tess, hope you're not having too much trouble. I haven't been on here for a while. When is your operation? I don't have a full night's sleep ever. I wouldn't know the word anymore. I hope you're using the large bags. Where I volunteer, I get people calling up complaining about the pouches. When I look at what they use, it's the midi. I did use them at first so I didn't feel like I had this big pouch on, but after a few operations, I thought this is doing my head in. Also, can you get some samples of any new products? Do you use a deep or shallow convex? I use the one pouch only. I couldn't stand having the two-piece feed. LOL. Would you be better off getting a drainable? Many people I know at work started using them so they could open the bottom easily and let air or the poop out, as to stop these blowouts. Actually, I never had a blowout, just leaks, but that was before I found the right pouch. My thing is less is best for my situation, but I do change the whole pouch every second day too. It's a must for me to take good care of my skin so I don't get another massive ulcer like on my old stoma side. :D Hope you're feeling better, darls. By the way, get some games on your mobile phone (cell phone). I know how boring shitty jobs can be. Like, I usually have my iPod going even while I answer the phone. Hahahah. :D XXXX MOOZA XXXX

mooza
May 23, 2012 11:37 pm

I saw that movie a month ago. It was good and the underlying theme was to live your life. I can't remember the actress's name, but the one British one who said, "Oh, I'm not eating this or that," she is one of my favorite British actresses. She's awesome. It was a good movie. I ate a bag of popcorn with every single mouthful. I thought, "Please, please make this not get me into trouble," and I was fine. It was the first time in a while I had so much popcorn. Good movie, thought it would be better...lol. But I do like a 6-ring circus. Looking forward to some new movies coming my way, especially The Great Gatsby in Australia next year. HAHAHAHAH XXXXXXXXXXXXXX

tess45
May 25, 2012 10:07 am

Congrats Weewee - thanks, PB. I will try to find it online - love a good British comedy. Mooza, what can I say - you're funny as always. I love ya, girlie... I think I have problems with the flanges because of the stupid, stupid, stupid pain in the ass wound - drainage - it even makes the Sure Seal product lift up. URGH!!!! Also, the way the scar from the incisions is like a place landed and skidded down my midline - big ridges on the sides and a huge depression in the middle - so I'm also hoping that the plastic surgeon, whatever way he goes to fix the wound, will be able to level out the area. I really do think that will help with the flange adhesion. Stefan is so close to the side of the wound/scar area - that I think that it is affecting the whole flange adhesion process. I mean - I have to use medical spray adhesive - skin barrier in a wipe and a spray and Eakin and putty and then Sure Seal and Tegaderm tape - so if I have to change every two days or so - it gets expensive and complicated and of course my skin revolts - we all know the drill. As always, love you guys and girls, keep the good stories coming or the bad humorous ones, be happy and healthy and enjoy. xoxoxo

mooza
Jun 06, 2012 5:17 am

What a pain in the arse, Terr. :( It gets you down when you have these things, then you have problems on top. Honestly, Tezza Terr, I'm thinking of you. It just makes you want to scream, hey, but when you do, the bloody problem is still there! Why did they put Stefan in such a shitty site? You think they would have moved it so you wouldn't have all these problems. Saying that, my guts look like a shark has taken a small bite on one side, and the new but old site isn't much better, Terry. I hope they understand that we will put spells on them who do us wrong! IF ONLY UGH. I hope to catch you on another chat; we seem to miss each other with our time zones. :( Catch you soon, Chook. Let me know when you're having that humongous operation. Toodle-doo! :))))) Mooza. Yep, a 6-ring circus just to take my mind away from the crap. By the way, I think my hernia operation was botched. :((( Mooza xxxxxxxx