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Colostomy for anal cancer

Sherry56
Posts: 2
Joined: Jan 2016

I have Stage 3a Neuroendocrine carcinoma anal cancer took 6 rounds of chemo and 33 rounds of radiation and only scar tissue was left now it has return only 6 months after treatment stop facing surgery now for permanent colostomy any advice on preparing for this is appreciated

 

John23's picture
John23
Posts: 2140
Joined: Jan 2007



Normal
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The most important thing to do pre-surgery, is to make sure you have a nurse that specializes in Ostomy and wound care (WOCN). That nurse will mark the area suited best for YOU, for the surgeon to place the stoma.

The stoma is usually best placed below your beltline and 4~5” off to the side of your navel. That will allow you to wear your clothes in the same manner as before.

The stoma should project from the surface of your abdomen by ½~3/4” to provide a “spout”, allowing easy dispense into the Ostomy appliance (pouch).

Your colorectal surgeon should be aware of the basics, but it might be a good idea to make sure prior to being operated on. You should ask about flushing as well, since doing so can greatly extend emptying the colostomy pouch….. Ileostomates do not share that convenience.

You’ll find a wealth of info at the United Ostomy website.

Having an Ostomy is “life changing” to an extent, but you should be able to adjust to it fairly quickly.

Try to remember, that if you do not make it “a big deal”, no one else will either, and that goes for the most personal intimate relationships as well.

It’ll all work out fine!

Be well,

John

 

 

 

 

 

vtspa6
Posts: 172
Joined: Aug 2015

We had problems orering the supplies for the colostomy.  When my husband left the hospital he did not get any prescriptions for the flange, bags, wipes ect.  We didn't know you needed a prescription.  Also, when we did get the prescription it has to state the exact type you want.  The local pharmacys do not carry any of the supplies either.  You have to order them from a supply company and they will need the prescription before they can place the order.  What a pain!  The colostomy nurse is a must!  She did give us some to sample and will show you how to remove, clean ect.  Also, always keep extra bag and supplies with you at all times, there were several times when my husband's flange/bag came loose and we had nothing!  My husband has gotten used to it and I am the one that removes and clean for the new one (every 3 to 4 days).  The only thing he misses is not being able to wear blue jeans because it will cut right into the stoma area of the bag.

Helen321's picture
Helen321
Posts: 1424
Joined: May 2012

Hi Sherry,

What I wish I'd done differently:

Discuss vaginal changes with your doctor before the surgery, those are actually really important, I ended up with a prolapsed uterus where the anus used to be, a crooked vagina and a heap of vaginal issues and I wasn't told about any of these nor prepared to deal with the mental issues that they caused (I'm 46 and at this point and possibly forever sex is out of the question).  It's not just anus removal, vaginal distortion is pretty intense and if it can be prevented, it should.  If I had done absolutely nothing else, this would be the one!

When you go to the ostomy nurse, make her put a bag where the bag will sit.  I wish I had done that.  I would have learned that it would stick out over 95% of my pants.  Make sure you bring several pairs of pants, do not let them rush you or tell you "they know best".  It's your body and this is permanent.  Ask for a sample wafer and bag and place it where it will land on your body.  Take your time.

Set up for counseling afterwards, the depression is serious and pretty much inescapable.  You will be okay, you just need to let it out and keep reminding yourself that people live with ostomies every day and they are all okay (I am 3 years out now, I am okay!  I promise).  But I wasn't in the beginning and needed to talk to someone.  It's a very difficult thing to accept. 

Read Laz's posts!!!!! He had a different surgery than I did.  He had some sort of abdominal muscle pouch and did not have to have "the barbie butt" which is just skin left in place of the anus.  I wish I was given that option, I would have taken it knowing what I know now.  Find out if that is an option for you. Ask questions.  For whatever reason, surgeons do not give full details about APRs.  It's disturbing how little they tell you. 

Always carry two spares, and I mean always!! I can't say this enough.  There will be unexpected blowouts and diarrhea days.  You need wafer, pouch, wipes and supermarket bags.  Picture me at a funeral for a coworker in the basement in a multi person bathroom, naked, washing my clothes and body in the sink, spraying lysol (thank goodness they had some) hoping no one would walk downstairs. I had to go to the funeral director, explain, tape sandwich bags to my body (yeah 70s make do know how). Boy did that smell.  I'm able to laugh about it now. Lesson learned! I never leave home without them no matter what, ever!

 

What I did do: 

Call all of the colostomy companies and get samples (best to do this before surgery). 

See a sex therapist (really should be called vaginal specialist, not so much sex therapist in case that is not relevant).  Everyone who has an APR or just radiation who is a woman should go see one. They will teach you things to do to keep the vaginal area at optimal health and avoid fissures as well as maintaining the skin at the APR site for elasticity especially if you have had radiation.  Short of large amounts of scar tissue, there are things that can be done to relieve pain, irritation associated with APRs and radiation . . . .  lubrications, dialators, very low dose local hormones (not oral ones).

Avoid sitting on hard surfaces.  I simply can not.  Not sure if this is prolapse related but I always find the softest seat otherwise it really hurts later.

Be kind to yourself and remember, after surgery, get out of the house once you are up to travel.  Go lay on a friend's couch or bed or in someone's backyard on a lounge chair. . It can get quite depressing and the change of scenery does wonders. It reminds you that the loss is just a piece of who you are.

Play around with your diet slowly. It seems like you can't eat certain foods at first but with patience you can build a tolerance. Sadly I never got back milk and yet I can have yogurt.  Oranges and pineapples are out but I can now have watermelon and grapes.  I can now eat a full half a cup of vegetables.  Keep pushing limits because there is an adjustment period with foods. It's a slow process. 

Accept that sometimes there will be gas and it's going to happen in front of people very rarely but definitely and all you can do is laugh.  I've learned to put my hand over the stoma when I suspect it is coming but there are times when it just comes out loud. Life is short, don't sweat the small stuff.  In the beginning this was a bit difficult.

Try different wafer/bag options.  Companies will send you free sample.  The clear plastic ones they give you in the hospital are a nightmare!  Who wants to have a clear bag of poop hanging off of their body?  I use an opaque two piece. I can remove the bag for showering and put on a new bag aftewards. The stoma can get wet and the wafer is pretty strong even after a few showers.

Swim confidently.  All you need is Johnson and Johson's waterproof tape (found at almost any pharmacy) to tape across the wafer and bag and you are in business.

Have ostomy powder and Cavalon No Sting Wipes handy from day one.  A rash is not normal.  It's painful and can be prevented. You should only use the powder and wipes when needed, they are not necessary for daily use but that first rash is a doozy.  Burns like heck.  If a rash continues too long, go to a doctor and check for yeast infection. I had one on my abs once, who knew!

Stay on top of my supplies and use free samples as emergency backup.  Supplies are by prescription only and come through the mail.

Hope some of these are helpful, Helen 

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