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the girl who cried cancer

lolad123
Posts: 2
Joined: Nov 2013

 i had anal cancer 7 yrs ago surgery radiation chemo found out 10/05 all over 2/06 41 yrs old

the long term effect due to the radation rectal prolaps due to the sphincter muscle damage ive had 2 prolaps surgerys first in 2009 didnt last second in 2010

rectum not out but the fecal incontinece still very bad pelvic floor muscles damaged from radation

when i had the seconed surgery they couldnt garanty that it would stay and sugested a colostomy

i didnt want that  2011 i had the sacral nerve stimulator put in didnt work incontinece got worse

i had 2nd and 3rd degree burns on the anus so the tissue is very tender so the leakage causes

rash and bleeding. im in pain in the rectom almost all the time .

I dont feel like i fought cancer even tho i pull out the cancer card STILL it is easier than

explaining . however i feel like i battle radiation damage daily  

im now going to get the colostomy  i am a shell of the person i once was

has anyone else had this experience   

lol i do and always will have a sense of humor about this you cant assk for a funnier

place to have cancer  

with love

 

mp327's picture
mp327
Posts: 3076
Joined: Jan 2010

I am sorry you are having to have surgery for a colostomy after all these years post-treatment.  It worries me constantly that many of us, including myself at 5-years post-treatment, will, like you, begin to see more long-term affects from the radiation treatment.  We don't often hear from long-term survivors such as yourself, so there's not much input when it comes to long-term affects.  I appreciate you coming on here and telling us about your situation.  I am sorry for the pain you are in and the measures being taken to rid you of these issues.  I hope your surgery will go well and that the adjustment period to the colostomy goes smoothly for you.  Come here anytime to update us and please, above all, keep that sense of humor!

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry to hear of all the damage that the radiation did to you, but glad you are still alive today. Ometimes on this board I see the question asked about whether or not it matters where patient gets their radiation treatment. Your story is an example of why it matters! Radiation can do much damage if they do not have proper equipment, equipment maintenance, training of radiation oncologists, technicians, etc. It is so important to get the very best rated cancer hospital that you can! Yes, medical errors can happen anywhere, but they occur with much less frequency at a top rated hopsital. After doing years of medical malpractice cases, I have seen it all! For the most part, serious injurry does NOT occur as a result of radiation treatments at top rated cancer hospitals.

lp1964's picture
lp1964
Posts: 901
Joined: Jun 2013

I am a 48 old male rectal cancer patient. During and after radiation treatment I had fecal incontinence that was pretty bad. I had to use a pad of thissue paper all the time. They could not save my anus so I had my surgery 5 weeks ago. I'm doing pretty good by now and I can tell you that colostomy is an inconvenience, but it's ok. I'm glad that I don't have to worry about constant discharge.

If you decide to have your surgery have a stoma nurse mark the location of the stoma. During the visit wear the clothes you usually wear. Try on a stoma bag standing and sitting. Find a location on your abdomen that is flat, at least 3 inches away from the belly button and the bottom of the bag should fall in your pants.

Good luck and let me know if you have further questions.

Laz 

eihtak
Posts: 879
Joined: Oct 2011

Hi, and welcome.  I too am so sorry for the situation you find yourself in.  After being treated for cancer we just want to move on and especially that many years later!  I am approaching 3yrs post treatment and had a colostomy at the start of treatment that was supposed to be reversed later but due to radiation damage and some minor complications it has become permanent.  Like Laz, I considered it an inconvienence at first, but now it has become quite natural.  I do not have pain, irritation, incontinence, etc. that some have following treatment, I'm well, and living a very active life.  There will be an adjustment period if you have this surgery, but will in time see it is not as awful as what may be going on in your mind right now.

I will keep you in my thoughts and prayers as you move forward.

I have lots of info on ostomy concerns and there is great support both in person and on line, but as was said search help from a stoma nurse first with placement and initial concerns.

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