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rectal prolapse, sphincter damage

lolad123
Posts: 2
Joined: Nov 2013

Hi  hope if anyone out there has had a list of radation damage that includes any or all of the following

 1 damage tissue to the anus 

 2 damage to sphincter

 3 prolaps of th rectum (ive had 2 surgeries less than a year apart thru the abdomin to pull it up )

 4 pelvicfloor damage 

 5 extream incontinence (it comes on at any time 7 yrs and its worse than ever)

 6 interstim Therapy System used to reduce fecal incontinence.(have had it for almost 3 yrs no help at all)

im in pain the most part of the day i feel like i have tried to fix this for the last 4 yrs i have an apt. on tues.at Cleveland Clinic 

i am determine to end the every day pain and get a colostomy .

im 49 and will not leave the house i get bad rashes back pain leg pain give my self 4 enemas a day and still

have a hard time comming to terms with it I should have put in the subject "do you have the time to listen to me whine"

 thank you ($) lol  

 

lp1964's picture
lp1964
Posts: 880
Joined: Jun 2013

I'm a 49 year old man after rectal cancer surgery and permanent colostomy. I had the same radiation treatment like you did with the maximum dose and I did not have any radiation demage, but had the same incontinence issues like you, because my cancer was so close to the sphincter. Colostomy wasn't a choice for me and that is what's so difficult for you that you have to make that decision not the surgeons. I don't want to influence your decision so I just tell you my own experience. 

So they removed the entire rectum and the surgeon recommended and I accepted to have one of my abdominal muscles (half of the six pack) flapped and used to fill up the space where the rectum used to be. The do this for two reasons: to prevent your intestineto from sinking into the pelvis and make sure the incision on the bottom will heal properly, because often that is compromised from the radiation. 

My surgery was 8 Weeks ago and I'm pretty much used to the colostomy even though it is somewhat inconvenient it's menegable. A lot of people live with it often since they young age. i found the right bag for me and I'm all right, just finishing up my last few rounds of chemo.

For more support and with questions don't hasitate to send me a message.

Laz

 

eihtak
Posts: 878
Joined: Oct 2011

Hi, Iam so very sorry for the situation you are in. I am 54yr old female diagnosed with Stage3anal cancer almost 3yrs ago. I received chemo/rad and prior to treatment I had what was to be a temporary colostomy due to location and size of tumor. The radiation treatment has caused severe damage to my sphincter so the ostomy is now permanent.

I have to admit, after the initial emotional adjustment and then a period of physical adjustment I lead a full, active and most importantly healthy and nearly pain free life at the moment. I became educated on ostomy care and involved with some support programs where I have learned not just ways to "manage" but that it is possible for this to become second nature and enable me to LIVE my life, not just participate!

Do know that you are NOT whining.......the effect that this treatment has on our bodies is for some referred to as "brutal" and "barbaric." Some suffer more negative effects than others who have received exactly the same treatment, its just the way it is. We are here to listen and offer encouragement to each other in a way that only others who have been there can relate.  When pain is controlling your life, combined with the other issues you are having, seems unacceptable and something somehow NEEDS to be done to help you.

I will have you in my thoughts and prayers that the decisions made bring you much needed and long overdue relief and quality of life!!  

mp327's picture
mp327
Posts: 3072
Joined: Jan 2010

I do not believe you are whining.  The issues you have listed are life altering and I am so sorry that you are dealing with so much.  I believe that any of who have been through this treatment do not know what might lie ahead regarding long-term side effects, some that may not come to light for years post-treatment.  I do not have a colostomy, so I can not speak on that, but Laz and eihtak are both living with one and have given you every reason to believe that you, too, can adjust.  To think that you would no longer be in pain would be a definite plus IMO.  I hope all goes well for you and that the decision becomes clear, no matter which way it goes, after you see the doctors on Tuesday.  We are here to offer you support, so please keep us posted. 

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry that you are going through this amount of pain and struggle post treatment. I hope you find the right doctors to help you end this suffering. I hooe you were able to research this to find specialists who can give you the very best results. You are young and have many good years ahead!

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