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Proctolectomy after pelvic radiation, anyone?  

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madrikh52
(@madrikh52)
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Joined: 11 months ago
Posts: 24
January 6, 2019 9:49 pm  

I haven't looked extensively on this forum, or others, but from the searching I have done I can only find proctolectomy experiences of people with IBD. I'm a 2 time colon cancer survivor with a permanent colostomy. 2 years ago- almost 4 years post treatment (radiation, chemo, surgery, then more chemo) I began having distressing rectal symptoms. My main symptoms are rectal spasms, fluid build-up and leaking. I also get sharp pains in my rectal area. 

I was scheduled to have my rectum removed in July of 2018 but basically chickened out. My surgeon, who I trust completely, is concerned about healing since all of my pelvic tissue has been exposed to radiation. Also, I already have significant sacral-coccyx pain because my 2nd cancer was a metastatic recurrence in the form of an egg-sized tumor just to the right of my tailbone. The theory is that I'm experiencing pain from scar tissue but no one really knows. So another concern my surgeon has is that further surgery to remove my rectum (even if approached abdominally) will cause more scar tissue resulting in more pain. However, even with these concerns, he is willing to do the surgery.

Currently, I must insert a vaginal dilator daily to put gentle pressure on my rectum to release the build up of fluid. This does decrease the spasms and leaking but is becoming less effective as time goes on. Also, my vaginal tissue is damaged from radiation, so there's concern about how long I can continue to use this method for partial symptom relief without causing further damage. 

I just finished 4 months of work with a pelvic floor Physical Therapist, and last week she told me she didn't believe PT was helping with my symptoms. 

All this to say, I'm pretty certain a proctolectomy is in my near future. I'm 53 and don't want to put it off too long because healing takes longer as we age.

Has anyone had this surgery post radiation? If so, I'd love your thoughts.

Thanks,

Marci


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VeganOstomy
(@veganostomy)
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Joined: 5 years ago
Posts: 1984
January 7, 2019 11:52 am  

I hope someone else is able to share their experience with this surgery after having radiation treatment.

Personally, I don't think I could have managed if I kept my rectum in - it would have been an ongoing source of frustration for me and it needed to come out.

Your concerns about scar tissue is valid, but I'm hoping your surgeon will continue to answer your questions and address these concerns to the best of their ability. 

Good luck!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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LK
 LK
(@dlkfiretruck)
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Joined: 1 year ago
Posts: 254
January 8, 2019 2:52 am  

Hello...I am 10 years (2009) with my ileostomy, now age 60, and still have my rectum. I have not had cancer or the treatment for it. I  am glad I still have my rectum as I also have a bladder disease that is treated thru it.  However, the remedy for the pain and spasms for that have been greatly helped by the O&B Suppositories. Opium and Belladonna. This past fall there was a shortage and I was able to find a  Pharmacist who does compounding. There, they made some called Opium and Morphine. It is like night and day the difference in the bladder as well as the rectal spasms which just about wore me out.  Most times unable to move when they happened and many would last a long time.  As far as discharge, I felt there was a lot in the first three to four years, but have found over time that it has pretty much subsided. I do not remember the last time I had one. When I see the amount of fluid my stoma makes, I have to wonder just how much more the rectum made. I am sure size had something to do with it, as well as unexpected fluids.  I truly hope you can get something from someone here. Make sure you click the correct spot that says to alert you of  "new replies" I am not computer literate, found that by accident! anyways, all the best to you as you continue to recover. Be well.

Linda

Linda


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