Here I am again...
I've now met with all 3 doctors (oncology, gastro and surgeon) and they are all in agreement that the radiation damage to my colon is too severe to correct. it just won't heal. 9 months of living in the bathroom, having pain and generally not having a life is coming to an end. Next Wednesday (Nov 11) I will have an ostomy. I am actually happy - I'll get control and my life back. But, I am not happy about the actual surgery. For some reason it has me really bummed and more than a little scared. After everything I've been through over the past year, it should be a piece of cake, right?
Oh, and that traveling? 3200 miles in a car over 12 days. Suffice to say I know intimately every rest area and fast food restaurant (clean bathrooms!) from Colorado to Ohio and back! It was a trip I had to make for my own sanity...but I wouldn't recommend it to anyone! LOL!
Many Hugs, Vicki
PS - Donna, thanks for the Card List!
Comments
-
You'll sleep right thru it!!
When first Dxed back in May I was able to read up on chemo and rad but never on colostomy. I would start to read, feel sick to my stomach and stop. Only a day or two before operation did I read what little info I had. Truth be told--if you trust your surgeon, you have nothing to worry about, You will be under anesthesia the whole time . The difficulty comes with the recovery phase, which I am still in (Op was past Sept 2). I don't mean to discourage you but I really did not know the reality of recovery:perhaps a change in image of self when you notice bag and stoma(BUT YOU ARE ALIVE-and no longer need look for clean seat to take a sh**), pain(there is a variety of medication); discomfort(you'll deal with this your way)...There are other issues but I found these to be primary for myself.To reiterate the main point--scary as it sounds(and believe me, I was scared ), the operation is necessary, will save your life perhaps and help you in your battle. My op was 6 1/2 hours (so I was told, as I "slept" thru it)cos of unforeseen complications aqnd I spent 8 days in hospital(this time varies with the individual, of course. as does our reactions to our treatments)...Best success with your operation. Don't be afraid......Steve0 -
glad to see you
gosh I'm glad to see you Vicki...been thinking about you a lot lately. I have been working on a new quilt with lovely fabric and that often makes me think of you.
I am sorry for this news but maybe it will give you some relief Vicki...does not sound like you have been having much fun. I remember well last time you were slated for surgery and you were not a happy girl then either....but you did it beautifully and you will this time too. And you have had H1N1 too....yikes....poor you.
ok talk again before the 11th....hang in
sending best thoughts and a hug
~mags~0 -
Thanks Mags & Stevemaglets said:glad to see you
gosh I'm glad to see you Vicki...been thinking about you a lot lately. I have been working on a new quilt with lovely fabric and that often makes me think of you.
I am sorry for this news but maybe it will give you some relief Vicki...does not sound like you have been having much fun. I remember well last time you were slated for surgery and you were not a happy girl then either....but you did it beautifully and you will this time too. And you have had H1N1 too....yikes....poor you.
ok talk again before the 11th....hang in
sending best thoughts and a hug
~mags~
I know I am whining, but this is the place I feel safe to do that!
Steve, I've already been through the original surgery (Feb 4) to remove most of the rectum and part of the colon. My surgeon (and yes, I do trust him. He's the best!) was able to hook me back up without an ostomy at that time, but unfortunately the radiation damage just kept getting worse. We gave it our best shot.
Mags, send me a picture of the quilt when it's done! I've managed to make a couple over the summer, when I wasn't doing chemo, etc. At least my scan is clear of cancer, so this is just the next step. As my surgeon is fond of saying, Cancer is a word, not a sentence.
Many hugs, Vicki0 -
Thats a great saying,Vicki:VickiCO said:Thanks Mags & Steve
I know I am whining, but this is the place I feel safe to do that!
Steve, I've already been through the original surgery (Feb 4) to remove most of the rectum and part of the colon. My surgeon (and yes, I do trust him. He's the best!) was able to hook me back up without an ostomy at that time, but unfortunately the radiation damage just kept getting worse. We gave it our best shot.
Mags, send me a picture of the quilt when it's done! I've managed to make a couple over the summer, when I wasn't doing chemo, etc. At least my scan is clear of cancer, so this is just the next step. As my surgeon is fond of saying, Cancer is a word, not a sentence.
Many hugs, Vicki
"Cancer is a word, not a sentence"-have to remember that!!!Steve0 -
VickiCocoloCan said:Thats a great saying,Vicki:
"Cancer is a word, not a sentence"-have to remember that!!!Steve
I know you are apprehensive about this operation but, if I didn't think it would change your life forever for the better I wouldn't back having it done. I live with one everyday and its a piece of cake. Hopefully the surgery will be laproscopic, if not then it will be a longer recoup time, because of stomach muscles, but a surgery for freedom. It will be a change in your lifestyle for the absolute better. Have you chosen the prosthesis type yet. I have no problem with the Hollister 2 piece..Its called New Image # for pouch is18373 and # for flextend adhesive cap is 14603 then I use the AllKare Adhesive remover wipes(50 per box) to rub around the adhesive so that I can pull it off without to much irritation . I change mine every other day. That keeps the odor from escaping like it does sometimes. I can kind of smell it every once in a while but no one else can or so they say. I take a shower in mine and simply dry it like the rest of my body and have never had any trouble with it leaking or coming off. The 18373 comes with a carbon vent that does a great job venting off the gas. It does sometimes get plugged while you sleep and will bubble up like a balloon. It is very tough, and you will have a few accidents with it like you would with anything new but you will get use to it, simply be aware that it will inevitably make life again enjoyable and give you the freedom that you have waited for for 1 and 1/2 years...If you need anything at all simply give me a jingle...Love ya buddy, keep me informed..
One more thing, the intestine does not have nerve endings so the stoma itself will not hurt. The stitching around it will be sore for 3-5 days but not enough to make you miserable, just mild discomfort. Hope for laproscopic surgery, 3 day recoup then. The stoma bleeds exceptionally easy with the touch of a fingernail or toilet paper so when the red appears don't freak out, its natural. Its all capillaries and blood vessels waiting for anything to make them bleed. They will heal overnight with no problem. I did get the stoma powder to kind of dust the outer edge of the stoma where the flextend will fit around. It will make a barrier between the skin and the adhesive but won't interfere with the adhesion. I don't hardly have to use it anymore. If I know you you are already wearing a "placebo" if you will to see how you are going to fare with it . You will do just fine, and welcome back ...I have missed ya.........Clift0 -
Vicki
Hi Vicki,
I'll be praying for you on the 11th and now too so you can feel OK before the surgery. We miss you and are here to support you.
Aloha,
Kathleen0 -
VickiKathleen808 said:Vicki
Hi Vicki,
I'll be praying for you on the 11th and now too so you can feel OK before the surgery. We miss you and are here to support you.
Aloha,
Kathleen
Everything will be ok and i will send you positive vibes,And i am sorry that you don't feel well but after the surgery things will be better good luck i missed you posting
michelle0 -
Vicki
So good to hear from you, I miss seeing you post. Sorry you are not feeling well, but sounds like you have a great plan on getting better. Glad to hear you like your doctors, I think that really helps. Anyway just wanted to say hello and that I will keep you in my prayers.
Your Friend
Beth0 -
Hey Beth & alldorookie said:Vicki
So good to hear from you, I miss seeing you post. Sorry you are not feeling well, but sounds like you have a great plan on getting better. Glad to hear you like your doctors, I think that really helps. Anyway just wanted to say hello and that I will keep you in my prayers.
Your Friend
Beth
I missed everyone here also. Life sometimes gets overwhelming. I have spent 3 months trying to get my business back where it belongs - focus, focus, focus! LOL And the bathroom issues are a real drag, but we are moving ahead.I have such a good medical team, and a great support system at home as well, so I am truly blessed.
Beth, have you moved yet? Michelle, how are you doing? And over there in Hawaii, how is **** holding up?
Take care, Vicki0 -
Hi Vicki,
Good to hear from
Hi Vicki,
Good to hear from you again! Sounds like you had quite a sightseeing trip (hopefully you saw more than just bathrooms- lol!) I will be thinking of you and praying for you for your upcoming ostomy surgery. I'm sure that anticipating that and all that will follow has to be a bit scary, but you will hopefully get some relief.
You take care of yourself and thanks for checking in here with us again-
Hugs,
Lisa0 -
Thanks Buddy...Buzzard said:VickiCo
I know you are apprehensive about this operation but, if I didn't think it would change your life forever for the better I wouldn't back having it done. I live with one everyday and its a piece of cake. Hopefully the surgery will be laproscopic, if not then it will be a longer recoup time, because of stomach muscles, but a surgery for freedom. It will be a change in your lifestyle for the absolute better. Have you chosen the prosthesis type yet. I have no problem with the Hollister 2 piece..Its called New Image # for pouch is18373 and # for flextend adhesive cap is 14603 then I use the AllKare Adhesive remover wipes(50 per box) to rub around the adhesive so that I can pull it off without to much irritation . I change mine every other day. That keeps the odor from escaping like it does sometimes. I can kind of smell it every once in a while but no one else can or so they say. I take a shower in mine and simply dry it like the rest of my body and have never had any trouble with it leaking or coming off. The 18373 comes with a carbon vent that does a great job venting off the gas. It does sometimes get plugged while you sleep and will bubble up like a balloon. It is very tough, and you will have a few accidents with it like you would with anything new but you will get use to it, simply be aware that it will inevitably make life again enjoyable and give you the freedom that you have waited for for 1 and 1/2 years...If you need anything at all simply give me a jingle...Love ya buddy, keep me informed..
One more thing, the intestine does not have nerve endings so the stoma itself will not hurt. The stitching around it will be sore for 3-5 days but not enough to make you miserable, just mild discomfort. Hope for laproscopic surgery, 3 day recoup then. The stoma bleeds exceptionally easy with the touch of a fingernail or toilet paper so when the red appears don't freak out, its natural. Its all capillaries and blood vessels waiting for anything to make them bleed. They will heal overnight with no problem. I did get the stoma powder to kind of dust the outer edge of the stoma where the flextend will fit around. It will make a barrier between the skin and the adhesive but won't interfere with the adhesion. I don't hardly have to use it anymore. If I know you you are already wearing a "placebo" if you will to see how you are going to fare with it . You will do just fine, and welcome back ...I have missed ya.........Clift
Clift, You are always a wealth of info. I have my meeting with the ostomy nurse on Monday. Because I went through the trial the last time, I don't think they will have me wear the dummy bag again. I don't know what appliances yet...she'll tell me!
We are hoping for laproscopic surgery, but we'll see. I have a great surgeon, so I am in good hands. A lot of the anxiety is leaving now. I think it all just came in on me, ya know? After that miserable car trip, then meetings with hospital people, nurses, doctors - I just let it all get to me. I know I will be fine.
Many hugs....Vicki0 -
VICKI!!!!lisa42 said:Hi Vicki,
Good to hear from
Hi Vicki,
Good to hear from you again! Sounds like you had quite a sightseeing trip (hopefully you saw more than just bathrooms- lol!) I will be thinking of you and praying for you for your upcoming ostomy surgery. I'm sure that anticipating that and all that will follow has to be a bit scary, but you will hopefully get some relief.
You take care of yourself and thanks for checking in here with us again-
Hugs,
Lisa
Soooo good seeing you here, let me tell ya, the colonoscopy is really not that bad. I was knocked out for the whole thing, had tubes coming in and out of me my hubby said, he thought he was going to pass out seeing me like that, but otherwise, the recovery was about 6-8 weeks, I had a wound vac on me, which gave had it heal faster, and with less risk of infection, instead of the wet/dry dressings. It was no picnic, it was sooo very sore, and especially when they changed the dressings, I had to put a pillow over my face each time so I wouldn't scream, I took pain pills before it as well, but with time, as each week passed by, the less painful it got, and by the 4th or 5th week, I was helping them undo my dressing and vac, so it was off by the time home health nurses got to my house (they came 3 days a week to change it).
I use Convatec 2 piece, with a charcoal air filter, so you don't smell at all when passing gas, or smell what's in the bag, I change it every 3-4 days, the more you change it, too much, it could break down your skin, so try making it last a couple days. Use alcohol adhesive removers to remove the tape, then the skin barrier, the paste, and stomahesive, all come in handy! my stoma nurse had me watch a DVD on it first in the hospital before he even showed me. This will be heaven to you, I think, then what you been going through for almost a year! it's just a normal part of my daily routine now.
I don't even shower with the bag on, I have everything ready to go once I get out of the shower, on a step to step basis lol...
You'll be fine girl, and let us know if you have anymore to ask, call me anytime, we're all here for you! I sure did miss you around here!
Hugsss! and your welcome for the list!
~Donna0 -
Not YetVickiCO said:Hey Beth & all
I missed everyone here also. Life sometimes gets overwhelming. I have spent 3 months trying to get my business back where it belongs - focus, focus, focus! LOL And the bathroom issues are a real drag, but we are moving ahead.I have such a good medical team, and a great support system at home as well, so I am truly blessed.
Beth, have you moved yet? Michelle, how are you doing? And over there in Hawaii, how is **** holding up?
Take care, Vicki
Vicki, I just got back from the airport. We flew back from San Antonio today. We found a great place to rent, a house just off of a golf course, its about 30 miles south of San Antonio, and only 30 miles from where I will be working. SO it worked out great. We are both excited and just fell in love with the area. We pack up on the first and should be driving out on the second. Its such a more relaxed environment over there, as long as they dont hang gay people we will be okay..LOL But really everyone was so nice I dont think there will be any problems. I got to go se where I will be working, they have my office all ready for me, just have to show up and start working, I am so excited.
Okay enough of me rambling, did you see the pics of my new grandson? He is so cute and doing so well, so is Mom.
So good to hear from you, take care! Talk to you later
Love
Beth0 -
I'm sending warm hugs...
You are always there with a warm word, a bright smile!!!
I am sending my best vibes to you, dearheart!
Please have someone keep us updated!!! And, yes, I can relate to the bathroom stops...when we toured Turkey by bus last year, there were limited stops, and NO toilet on board!!!! I was VERY proud of myself for not having even ONE 'oops'...although there were a few times I rushed off the bus...and even used a 'squatty potty' once when no 'western' toilets were open...
Hugs, Kathi0 -
SurgeryKathiM said:I'm sending warm hugs...
You are always there with a warm word, a bright smile!!!
I am sending my best vibes to you, dearheart!
Please have someone keep us updated!!! And, yes, I can relate to the bathroom stops...when we toured Turkey by bus last year, there were limited stops, and NO toilet on board!!!! I was VERY proud of myself for not having even ONE 'oops'...although there were a few times I rushed off the bus...and even used a 'squatty potty' once when no 'western' toilets were open...
Hugs, Kathi
So good to see you posting again. I'm sorry that you have been going through such a terrible time. You will soon get used to your colostomy, especially after what you said you have been through. I get my ileostomy reversed on Monday and I've dealt with mine just fine. It will take some getting used to, but you will learn the ropes fairly quickly. Let us know how you are doing and good luck in your upcoming surgery.
Kim0 -
Beth, your Grandsondorookie said:Not Yet
Vicki, I just got back from the airport. We flew back from San Antonio today. We found a great place to rent, a house just off of a golf course, its about 30 miles south of San Antonio, and only 30 miles from where I will be working. SO it worked out great. We are both excited and just fell in love with the area. We pack up on the first and should be driving out on the second. Its such a more relaxed environment over there, as long as they dont hang gay people we will be okay..LOL But really everyone was so nice I dont think there will be any problems. I got to go se where I will be working, they have my office all ready for me, just have to show up and start working, I am so excited.
Okay enough of me rambling, did you see the pics of my new grandson? He is so cute and doing so well, so is Mom.
So good to hear from you, take care! Talk to you later
Love
Beth
is gorgeous! I am a sucker for grandkids - we have 3, all boys. Intersting note - yours was born 10/22. I was diagnosed 10/22/08. It was just a bit startling to read.
Hug him a lot, and kiss the back of his neck...my favorite baby spot!
Hugs, Vicki0 -
Im telling ya'll.........Annabelle41415 said:Surgery
So good to see you posting again. I'm sorry that you have been going through such a terrible time. You will soon get used to your colostomy, especially after what you said you have been through. I get my ileostomy reversed on Monday and I've dealt with mine just fine. It will take some getting used to, but you will learn the ropes fairly quickly. Let us know how you are doing and good luck in your upcoming surgery.
Kim
Mrs Vicki won't need anything, shes a toughie. If she doesn't like the ostomy after she gets it then we're gonna have a kuzoo surgically implanted so that when she farts she can play a rendition of "My Old Kentucky Home". So there, Mrs Vicki is your choice in the matter and the alternative if it doesn't work out for you. You can be a publisher by choice, or a soloist by our choice....LOL....
....Keep smiling buddy, life is fixing to be completely trouble free......Buzzard 0 -
Buzzard...Buzzard said:Im telling ya'll.........
Mrs Vicki won't need anything, shes a toughie. If she doesn't like the ostomy after she gets it then we're gonna have a kuzoo surgically implanted so that when she farts she can play a rendition of "My Old Kentucky Home". So there, Mrs Vicki is your choice in the matter and the alternative if it doesn't work out for you. You can be a publisher by choice, or a soloist by our choice....LOL........Keep smiling buddy, life is fixing to be completely trouble free......Buzzard
You crack me up! Actually, the Kazoo isn't a bad idea, but I think I'll play "Yellow Submarine". I am having a rotten weekend, so I know I made the right choice and I am just counting down the hours until the surgery. Bring it on!
Here's a great one for you...
On Monday I meet with the ostomy nurse, Cathy. I had the funniest (dumbest) conversation with another nurse in her office the other day. I called and left a message for Cathy. Lisa called back. I told her I had arranged to work with Cathy, as she worked with me before my last surgery and my surgeon recommended her. Lisa replied "I am off Friday and Monday, and Tuesday is too late, so what will we do?" I repeated that I wanted the appointment with CATHY. She replied, "Cathy is here Monday. Maybe you could see her at 10am?" DUH...I think I said that. Then she said, "I could come in on my day off Monday if you want?" Ok, you just confirmed my time with CATHY. I thanked her and hung up. About an hour later my surgeon's PA called to see if I had arranged my ostomy visit. Before I could say anything she said "Arrange it with CATHY...no one else." There was a clue there....
Hugs, Vicki0
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