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ArchieB
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February 12, 2020 12:46 pm  

Hi all,

Two months ago I was diagnosed with low rectal cancer, the clinical staging is between 1 and 2 and they feel I can go straight to surgery to remove it all (finger crossed). I will likely have APR surgery which removes part of my colon, all of rectum, and anus with a Colostomy. 

I met with a Ostomy nurse on Monday (my Surgery is this Friday). She placed the stoma higher on my abdomen than what I see most have. For me its above my navel not level with it or below so I have some concerns as it will be much more obvious when wearing a shirt. I can only guess that we all have different anatomy, I was hoping to learn how to wear it sideways but wearing a belt over the belly (vs under) might make that more uncomfortable. All I can figure is people like them at or below your belly button because its easier to conceal ? The nurse told me that staying away from any creases on your body reduce the chance for leaks....so I guess there are pros and cons to all....so much to figure out.

Super nervous at this surgery on Friday, having that large wound on my backside sounds like a long recovery with limited ability to sit. Also not looking forward to drinking all that bowel cleansing stuff again starting tomorrow.

  


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john68
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February 12, 2020 1:03 pm  

Hi ArchieB, Welcome to the forum. It’s a lot to get your head around but it’s very normal as time goes by. Stoma placement is very important indeed, Have you thought of wearing an appliance to see how it performs. The very best with the surgery 👍


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LLNorth
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February 12, 2020 1:17 pm  

Hi Archie, I had the same surgery, also for cancer. My recovery was pretty smooth - I hope that  yours is, also.  I bought this great cushion that has a small U-shaped cutout where the tailbone is - it was inexpensive and it really helped on the couch, on a chair, in the car. A good stoma mapping and placement is key to so many quality of life things. Best of luck and everything else to you! LL


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ArchieB
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February 12, 2020 1:18 pm  

@john68

Hi John,

Yeah she gave me one two piece appliance, I didn't fill it with water or anything but I tried it out last night and slept with it etc. Again it feels higher that what I had in my mind, so I called the nurse and asked if it could be lowered a couple inches and she said my belly button crease might cause problems so she recommended leaving it as is. So I'm thinking ok so I guess it might be more obvious under my shirt but maybe it won't leak as much ? Maybe that's the way I need to look it at these kinds of trade offs ? Sort of at the mercy of others to advise me as I don't want to push for something that will be wrong either.


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ArchieB
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February 12, 2020 1:27 pm  

@llholiday

Thanks LL, I'm terrified of the unknown I've never had any major surgery in the first 47 years of my life so number 48 is going to be full of firsts. I heard a cushion is key to helping ease back into sitting and you say the tailbone so the incision is on the upper butt crack part lol good to know. I'll definitely have to find something as you described. 


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LLNorth
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February 12, 2020 2:14 pm  

Hi Archie, It looks like this one “coccyx cushion for lumbar support $14.99”, generally, and mine also has the little carrying strap.  I got mine at a medical supply and paid $22. 
Although I surely understand your apprehension, try not to not feel too scared (though that is natural, of course). These medical professionals are there to do their very best work and to keep you comfortable. They are almost invariably kind, and they take pride in their work.

LL

https://www.walmart.com/ip/DMI-Foam-Chair-Seat-Cushion-Tailbone-Sciatica-Pain-Relief-Seat-Cushion-Cars-Office-Desk-Chairs-Wheelchair-Coccyx-Support-Better-Posture-Navy/32427500?athcpid=32427500&athpgid=athenaItemPage&athcgid=null&athznid=PWVUB&athieid=v0&athstid=CS004&athguid=759c6ea9-007-1703acdedea8a6&athancid=null&athena=true


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ArchieB
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February 12, 2020 2:37 pm  

Perfect, thanks for the link on the cushion I have something like that in my closet somewhere I think already I'll have to check. I do trust my surgeon he's told me this is what he does so that comes with some peace of mind. I'm just hoping this second chance I'm getting, gets all the cancer and pathology shows it remained local. My tumor is close to the sphincter and the MRI graded it between a T2/T3 and so they tell me that they defer on the smaller grade in these cases.  


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SqueakyandLiza
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February 12, 2020 2:50 pm  

Welcome Archie,

It is totally normal to be nervous about having surgery. You will do great, and you have found a group of people here who are so supportive and have so much stoma experience. Ask all your questions. I think it will help with the apprehension you are feeling. I wish I had found this group sooner after my surgery. 

All the best for Friday. Be sure and come back and tell us how it went. 


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Dona
 Dona
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February 12, 2020 2:53 pm  

Welcome ArchieB and good luck with your upcoming surgery. Its a change for sure, but a life giving one.  There is a lot to learn , but take it a step at a time.  I glad you found VO at this time never be shy about asking questions either..


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Lynne
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February 12, 2020 3:31 pm  

Hi Archie.  Just wanted to login and send you my best wishes.  I got my ileostomy 3 months ago and I'm just now getting close to feeling like "I got this" -  planning a big European trip for April.  So just take your time and know that your feelings are totally normal. Sounds like you are in good hands with your surgeon.  There will no doubt be some recovery days that are tough but you'll get through it! There is so much support and education online, including Eric's great site, that make things feel so much less isolating.  My stoma is right at the waist line.  Your WOCN I'm sure knows best and it shouldn't be an issue if it's a little higher than some.  The only tip in addition to the good ones above that I'd have is check out things like ostomysecrets.com wraps.  They have unisex wraps that you tuck the bag in and shouldn't be a problem at all concealing.  Sending you all my best wishes for a smooth recovery and future health!!


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glenn.giroir
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February 12, 2020 5:11 pm  

Hi Archie.  Best wishes on your surgery.  Everyone's experience is different, but wanted to share that mine has gone very smoothly.  I had a proctocolectomy on Dec 09 of last year.  Had my entire colon, rectum, and anus removed (due to long standing ulcerative colitis that was presenting with dysplasia - pre-cancerous cells).  The incision for the closure of the anus and pelvic floor was not a big deal for me.  Actually it was probably the easiest part of the surgery recovery.  I may have gotten lucky, but I had little to no pain and except for some drainage in the area for about 6 weeks, it was pretty easy to deal with.  I don't even think about it anymore.  I hope you have a good surgery, and I know what you mean about the preps. Not fun at all dinking all of that lovely stuff.  All the best.

Glenn   


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ArchieB
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February 12, 2020 6:03 pm  

@squeakyandliza

Thanks I'm sure I'll have more questions for sure. Just hope the placement of my stoma works out for me.


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ArchieB
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February 12, 2020 6:09 pm  

@dona

More questions will be coming thanks for the welcome :)

@lynne

Hi Lynne, 3 months that's not bad for a learning curve, yes I'll need to trust in my Ostomy team to help advise me as well as resources like this site. 

@glenn-giroir

Glenn you are the rare person who has posted (on message boards I've read) that they didn't have much for recovery time, and you had more plumbing removed than I am having....I sure hope I have your vantage point and then I can someday maybe reassure the next me that comes along in the same way. Very encouraging to hear thank you for posting :) 


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VeganOstomy
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February 12, 2020 6:17 pm  

Welcome, @archieb!

I'm so glad to have you here and I hope that you find some comfort among us. 

Winter surgeries are the best. You should be all healed up and ready for summer, so start making plans :) 


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SqueakyandLiza
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February 12, 2020 6:33 pm  
Posted by: @archieb

Thanks I'm sure I'll have more questions for sure. Just hope the placement of my stoma works out for me.

Archie,

I know you are getting pretty close to your surgery, but I really liked John's suggestion of putting an ostomy bag on where your stoma is supposed to be and see how it feels and looks, and decide if you think it is the best placement for you.  Ultimately, you are the one who has to live with the stoma, so you should make sure you are happy with where it is placed.

As for me, mine was an emergency, unplanned surgery so the surgeon just put it where he thought it would be best, and I've just had to learn to live with it.  I would say it is about even with where my belly button was. (I no longer have my belly button, due to a second surgery trying to get the original wound to heal.)  


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sjlovestosing
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February 12, 2020 7:06 pm  

Hello Archie and welcome! Like you, I had colorectal cancer and had my anus, rectum, and 17 inches of my colon removed one and a half years ago. I do understand your apprehension in all of this. Aside from delivering my babies, I never had a major operation until I was 61. You'll do fine - if this old scaredy cat got through it,you will too.

In regard to your bum, it will take about eight weeks for that to heal. Be patient and keep coming back here for info and support.

God bless. I'll say a prayer for you.

Stella 😊


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LK
 LK
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February 12, 2020 7:40 pm  

@archieb

Hello, and welcome! Your first ever surgery eh!  A little fear before hand is very normal! If it feels too much, tell the nurses you see before you go to the O.R.,  they may be able to get you a nice little pill to calm your nerves some.  There is certainly no harm in letting them know what your feeling when you get there.   You can try taking some nice slow deep breaths, in thru your nose and out thru your mounth. Close your eyes and try not to think of anything else.  Just the breathing.  Practice at home.  It helps and it works most of the time. 🙃  Nice and controlled.  This has  helped me almost every single time. I don't envy you having to drink that stuff, but,  it's important to clean you out really  well. Drink it all. Don't think about it, just go to it and get er' done! I find drinking it cold,  it goes   down easier. 

I live & had my ileo - stomy surgery in B. C. "Rose" my stoma was tens yrs. old last summer!   Have some fun & eventually choose a name for your stoma!  Tho family and friend support is very highly important, here it's an "experience" kind if support. 

Before or after surgery, here, or in hospital, no question is a stupid question and no need to be embarrassed,  ever.  No with holding info in the hospital, if you feel something is wrong or hurts or you feel feverish, nauseated, be sure and  tell the nurses. This is the first step in a successful  recovery. You are going to do just fine thru all of this and even if you just need to Express frustration or joy, we are here for you! You've got this in the bag! 

Linda..., okay, the bag thing, I know its corny, but,  it fits!!!  Hehe! 😁


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Dona
 Dona
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February 12, 2020 8:40 pm  

About the bowel prep stuff. Like Linda said drink it COLD .. also use a STRAW. It seems to help get it past the taste buds, where you definitely don't want it.  


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SqueakyandLiza
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February 12, 2020 9:35 pm  

@archieb

This is a very small consolation, but this is the last time you will be doing prep and having to stay close to the bathroom and deal with the burning.  I wish I could say it is the last time you have to do prep, and maybe having everything removed it will be, but for me personally, I have had to have 2 scopes since getting my stoma, both of the rectal stump and the stoma itself.  I still had to drink the prep, but having it go through my stoma instead of out the bum was much easier.  


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ArchieB
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February 12, 2020 10:40 pm  

Ok so this is kinda funny I was trying not to wreck the "demo" appliance leaving the backing on and trying to use other tape to tape the edges over the mark...I wore it like that last night but tonight I just took the backing off and stuck right on. I mean it doesn't bother me functionality wise where it is, I can think of the pro's its never going to be the way of my waist line, or a seat belt, on the con side its very visible with a t-shirt on. Luckily I'm one of those guys who likes to wear light jackets much of the time outside of the house even at work so maybe thats a trade off. I'm compact 5'4 ish and I butt up to my workbench which is about 30' high and the bottom of the flange is right there so doesn't interfere there either. Other than it being really front and center on my torso so to speak not sure what other reasons would be cons for where it is? 

@squeakyandliza

I laughed at your message as I was just wondering the same thing, if I had to do another bowel prep do they just have a hose kit where you drink that stuff and funnel it back into another container when you have a stoma lol. The bags would just fill instantaneously with all that fluid it runs through me pretty quick. 

I went out and got some ginger ale and lemons to help offset the taste. The good news is the instructions for surgery have me drinking it all within 4 hours tomorrow afternoon instead of spilt like I had to do before so we'll see how that works out. I'll chill the water tonight and then it'll be ready for when I start mixing it at noon.


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