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Suregry over. Not as expected.

Helen321's picture
Helen321
Posts: 750
Joined: May 2012

Thank you all for the last year and all of your support. Surgery over, still in hospital.  Woke up with a colostomy which was not expected. Will write again soon.  Just wanted to say all is okay and talk to you soon.  Helen

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks for letting us know. Wish you a very speedy recovery.

Chelsea

Lovekitties's picture
Lovekitties
Posts: 2927
Joined: Jan 2010

Sorry you got a surprise colostomy, but you can live very well with one.

When you are up to writing more, ask all the questions you have about it.  I have had one for 3 years this March.

Wishing you a speedy and uneventful recovery.

Hugs,

Marie who loves kitties

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

It is good to hear yoursurgery went okay. Wonder. Why the colostomy . When your up to it you will have to let us know. Pray for a quick recovery.  Jeff

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

is over. praying for a quick recovery.

hugs

judy

hippiechicks's picture
hippiechicks
Posts: 309
Joined: Sep 2012

Glad to hear all is ok.  Wishing you quick recovery and comfort to you. Ostomies are ok....sometimes even a blessing! Cool

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

keep us posted!  Hugs~Ann Alexandria

maglets's picture
maglets
Posts: 2403
Joined: Jun 2006

Helen I am glad your surgery is over....sorry you had that surprise waiting for you.  So many people here will be able to help you when you feel ready.....thanks for checking in with us

 

speedy recovery.....mags

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 445
Joined: May 2012

So glad surgery is over. Hope you're feeling better and home now. Is your colostomy going to be reversed? Did you get your staging?
Sandy :)

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Sorry about the surprise but you will find that there is life after a colostomy or ileostomy. Hang in there. Hope you are doing well in your recovery from surgery.

Sandy

thxmiker's picture
thxmiker
Posts: 1213
Joined: Oct 2010

We are sending you are thoughts and Parayers for a quick recovery Helen!

 

Best Always, mike

Helen321's picture
Helen321
Posts: 750
Joined: May 2012

Thanks guys.  I'm now five days out and just got home.  My sister had a laptop with her in the hospital that day and so I grabbed it.  The doctor said he would do his best to give me a temporary, and he did just that but he said that the tumor marker (his office had done a tattoo week before) was just so close to the muscle, had he done a reversible, I would have spent my life with such an incredible amount of leakage that I would have been miserable.  He came out before he started and asked my proxy what she thought he should do, stop or continue and she said continue.  I had also already signed a paper saying that I understood he may have to do a colostomy.  That's what I would have picked also.  So although life will now include some extra daily maintenance, I have life!  And so at this moment in time, I'm just glad for that.  I'm home in my own bed (ahhhhhhh) and I will spend the next five days relaxing until the pain subsides.  The surgery was 10 times more painful than I imagined (the first one last year was a walk in the park).  I think the drainage tubes were the worst part. Glad it's over.  My ovaries were also removed so we're waiting to find out what the spot was.  Waiting for my biopsy for staging and to backup NED from CT scan.  Fingers crossed!  I'll definitely ask questions as they arise.  Day one home is just me actually cleaning this bag out.  Pew how stinky!  Other than that, I'm just ready for a full night's sleep (at least I hope!).

Trubrit's picture
Trubrit
Posts: 1401
Joined: Jan 2013

You sound so positive and upbeat. I am so glad you are home and able to sleep in your own bed, that is healing in itself.

Good luck with your new routine, I pray that it is temporary. 

We'll wait with you for the results. 

 

 

Helen321's picture
Helen321
Posts: 750
Joined: May 2012

Thanks, the colostomy is permanent, that part is a given but hopefully getting used to it will be temporary and quick.  I've already cried twice about it but only in the midst of pain in the hospital.  I'm more in the thinking of well you all go out of a hole in the back and I go through one in the front.  Big deal.  Of course, I haven't looked up any of the down points yet.  Once I do more research I might be singing a different song. 

 

I'm with you, sleeping in your own bed is definitely healing! 

Trubrit's picture
Trubrit
Posts: 1401
Joined: Jan 2013

Sorry for the misunderstanding. 

I know you're a positive person and will do well with whatever you face.

And you know that living with a permanent colostomy means living, and thats what its all about. 

Helen321's picture
Helen321
Posts: 750
Joined: May 2012

I am having a lot of sudden trouble with words.  Can't think of basic ones.  Yes, I'm alive!!! And today I got good news, my biopsy confirms that I'm NED=)  Cause for celebration.  I missed my last birthday due to radiation and so I think this summer I will have a 43-1/2 birthday party!

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

You will be surprised at how quickly you will get used to the colostomy. U'll get so you'll remember to get everything together, set up, etc. BEFORE changing your appliance. You'll also want to look at the catalogue (if the hospital gave you one) and see what might be right for you. I went to the Coloplast site and and they had free samples. I ordered the free samples and got a pile of different types of appliances, bags, etc. They also sent a very nice travel carrier for your supplies. I'm sure other companies do this, and it makes a difference what you have and how you put it on. Take it one day at a time. I've had mine since November.

Judy

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Your attitude is great...keep up the good work!

Helen321's picture
Helen321
Posts: 750
Joined: May 2012

Cool Judy, thanks.  I'm going to call and ask for free samples and a carry case is a great idea.  The ostomy nurse suggested that I do disposables but I found out my insurance does not cover supplies and so it depends on how much everything costs.  The good news is that my insurance gets me an automatic discount.  I was initially changing the non disposables daily but then I realized, I can't get supplies in that fast and also, it pulls the skin and so now I'l cleaning the bag out.  Aside from the smell (wow!) it's actually pretty easy.  I am more having trouble with the idea that my butt is now sewn shut.  That I am not handling as well.The ostomy nurse assures me it is all just swelling and will not look nearly as bad once the swelling subsides.

Lovekitties's picture
Lovekitties
Posts: 2927
Joined: Jan 2010

I know that an ostomy takes getting used to, but as with other changes we must make, you will figure out how to make it just another of those things you do.

If I can be of any help at all on the subject of dealing with an ostomy, don't hesitate to ask.

Wishing you speedy and good recovery.

Hugs,

Marie who loves kitties

Helen321's picture
Helen321
Posts: 750
Joined: May 2012

Thanks Marie, so far I am just trying to get my colon going again and so I have not had any issues.  As I mentioned earlier, I'm having more trouble adapting to the idea that my butt is sewn shut. It looks very awkward and I'm hoping it looks better once it is healed.  I tried to look up "after" pictures online but no one seems to post any.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

The smell while cleaning is a definite downside to having a colostomy, and it can be tough on some people who are sensitive to smells.  Luckily, it doesn't bother me too much.  I usually tell people this little bit of wisdom when/if they ask about a colostomy: "there is a reason god/nature didn't put your butt close to your nose".....  Unfortunately, with a colostomy, that is exactly the case!!!  I have had mine since June 4, 2012 and it's pretty much "normal" for me now to deal with it.

Tedd

Lovekitties's picture
Lovekitties
Posts: 2927
Joined: Jan 2010

They do make a deoderant which can be added to the bag which will help with the odor.

Check with the supply manufacturer rep and they should be able to help you.

 

Helen321's picture
Helen321
Posts: 750
Joined: May 2012

haha Excellent point Tedd!  I never thought of it that way.  Are there times when you don't wear the bag to give yourself a break?  That is one question I do have.  I was wondering if the area drying out becomes an issue with air exposure.  I know there is a cap for when you want a break but there are times where you just don't want anything on your body for an hour or so.

Chelsea71
Posts: 1170
Joined: Sep 2012

I would recommend you go to John23's blog and read what he suggests regarding stoma care. My husband, Steve, used to struggle with skin irritation and the bag falling apart etc..... John's advice has been life changing. Avoiding all those skin products prevents the adhesive from breaking down. Steve always gets a full week in now. Could go longer if he tried. Before it would fall apart after 4 or 5 days. We've found it very helpful. Thanks again, John.

Chelsea

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Welcome home!

I didn't have a colostomy, but I did have an ilestomy for a full year. At first I was very clumsy with it and it was smelly. Fast forward a month of so, and I had learned so much: How to control/eliminate odors, how to quickly put it on, and how to dress so no one would have a clue there was a bag attached to me.

Knowing you, you'll figure this out quickly. I understnad it wasn't what you wanted, but perhaps in time, it will become part of your routine.

Big hugs!!!!

Tommycat

bailee2012
Posts: 61
Joined: Jul 2012

My husband also came out of surgery in June with a colostomy.  Neither of us had every had any experience with one before so it has been a learning process.  Make sure to go to the UOAA website and check out their discussion boards because it has been very helpful in figuring out all of this.  Also there is a list of the manufacturers for supplies and I went down the list and requested different free samples from each to find what would work best for us.  Best of luck and your great attitude will get you far!!!

bailee2012
Posts: 61
Joined: Jul 2012

repost. sorry

coloCan
Posts: 1845
Joined: Oct 2009

once you get the hang of it, you can get some pleasure,if so inclined,by  secretly releasing the bagged-up gas to annoy those near you (like on a somewhat crowded train or bus and just sit back and await the reaction as the odiforous cloud wafts its way) . It will take some getting used to but living with a stoma is life now and forever.....Try to walk around a little bit more each day,even tho you're still probably in pain. The circumference of your stoma will probably change by the end of its first month. Each of the major ostomy supply companies offer free samples and usually have a nurse to talk to on phone.  I do everything (dress,exercise,etc)based on my stoma.Took about a year or so for my insides to settle....Any specific  info needed or questions answered, just ask.....steve

And, when you get depressed, look at it this way:"Have bag, will live"

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Hi Helen Nothing better than being home in your own bed! We have a cat now. Had to put our dog down :-( beginning of Dec., and he is great.- Simon is his Pet Co. name. I don't know much about Ostomy 's but I am sure it will become second nature.I had chemo with take home pump. Wish it was take home margarita! Hope you are feeling better each day. Do keep up the protein for healing and strength. Keep that wonderful sense of humor. Wishing you and your family the best each day. Hug! Barb

smokeyjoe
Posts: 1428
Joined: Feb 2011

Glad your home,  hopefully you are feeling better daily and your pain is subsiding.   How long will it be till you get the path report??   

coloCan
Posts: 1845
Joined: Oct 2009
Helen321's picture
Helen321
Posts: 750
Joined: May 2012

I got the path report today  . . .SQUEEKY CLEAN! I will find out all the details when I go for my visit in March or when they post it online but for now, I was just glad to know I'm NED.

Helen321's picture
Helen321
Posts: 750
Joined: May 2012

Hey Barb, sorry about your dog!  I saw a pic of your cat on facebook, very pretty!!!  I'm glad you got a new pet.  My cat is now 15 and ready to be put down very shortly and I don't have the heart to do it yet.  I just took him to the vet and he gave me medication to keep him going for a while.  I'm with you on the margaritas, heck I'll buy!  Too bad we can't pump margaritas through our ports, that would be great.  lol  Hugs right back at you, you are doing really great.  I have such confidence that soon you'll have all of this behind you and will be able to relax. 

Helen321's picture
Helen321
Posts: 750
Joined: May 2012

lol I almost spit out my juice.  I really like your thinking!!! hahahahaha I'm at week one but I haven't had to venture out with it yet.  Also it's not doing much, can't get my colon going.  Have to keep popping exlax.  The sounds are dying down thankfully.  That part did have me a little worried.  I think I will panic just a little bit when going back to work mostly about the noise.  My office can be very quiet at times and I can't sit in training classes or meetings with gas noises sounding off.

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