I had the reconnection surgery on October 20th, after almost a year of all treatments for rectal cancer. They told me it would be 3 days in hospital, turned into very painful ten days, due to ileus (bloating, nothing passing), but I'm writing because of the excruciating different pain now in my rectum. I'm at home recuperating now for 7 days, and it has been the worst time of the whole year (starting with the terror of dx; six weeks of daily chemo and radiation; healing; ileostomy surgery end of March; four months of chemo, now this).
It feels like 1000 flaming knives inside my rectum, and my surgeon seems to think that tylenol should do it (doesn't help at all). He only says it's "unfortunate." I'm not looking for meds, but maybe some sharing of this, if it's happened to others also; it is a real bummer for me, especially since I had no idea in advance that this part would be so very bad. I have a totally new "appreciation" now of how enduring severe pain can make one want to escape forever.
My hunch is that the damage done by the radiation down there has "fired up" again, and that is one reason the soreness is so rough.
Thanks for listening.
I had my ileostomy reversal in July of last year (0. I understand about the pain. My doc told me that some may be permanent, just because of all the trauna to that area. For me, it is much better now. I use baby wipes to keep the irritation down (a trick I learned during radiation). Hope this helps, and best of luck to you! This part has actually been the hardest for me.
Thanks Sarah - it is really helpful to read that you also find this one of the more difficult parts of all this;
lots of weeks since I wrote that on November 7 and as you say, it has improved over time; it was hard to believe the docs were so unhelpful during those first eight weeks about, until it calmed down some. It is still so painful, at times however, and I cannot figure out if any diet makes any difference at all. Meds don't help esp. cause I wont take any strong enough to knock me out.
It's worse in the evening, some better days, some not, like last night, so today I am going to try and stay on cereal (fiber and milk) and soups to see what happens tonight. That seemed to help some in the past, yet not sure. The wipes are sometimes good for me, yet they don't really get to this, because this burning is on the inside, not the outside (I use some balmex regularly tho).
I eat a fairly simple diet usually, for years anyway, chicken or fish, no heavy spices, decaf only, veggies and fruits, and there has got to be some correlation, I think, because this is always razor-pain only toward the end of a day (mid afternoon to start, then really bad by 9 or 10 pm).
Putting all this out here in case you or others have more suggestions. Thanks again.
I am sorry you are going through this. I didn't have much pain after my reconnect, so I am afraid I can't help.
10/01/07 - Removal of Colon Cancer Tumor & Temporary Colostomy
11-07-07 to 04-09-08 FOLFOX and Avastin. 04-28-08 Colostomy Reversal
June 2009 3 Tumors in the Peritoneal tissue- FOLFIRI and ERBITUX.
11-25-09 Tumors inactive(Oct). Finish FOLFIRI, continue ERBITUX
Jan 2010-May 2010 FOLFIRI and ERBITUX.
June 2010 Cancer in Liver. Nov 2010 - Oxyplatinum, Avastin and IROX
Age Diagnosed 40. Current Age:44
I had no problem after reconnection, however during radiation it burned to the point I wanted to die now! My oncologist suggested Preparation H to relieve the burning. It worked for me. I think I went through about 10 gallons worth. Hope this suggestion helps. Bob.
I had internal burning during radiation too - it was horrible - my radiologist gave me a suppository that had steroids in it...it was really helpful.
I am also wondering if you could have a fissure? Have they checked?
Can't remember the suppository name but you should keep insisting they try you on different internal stuff.
Rectal Cancer diagnosed Valentines Day 2008 - stage 3
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Chemotherapy 5 months (Xeloda) finished Christmas 2008
Local recurrence found May 2011
Permanent colostomy and salvage APR surgery June 3rd 2011
Stage 3C - 4 of 12 lymph nodes involved
Finished 12 treatments of FOLFOX 6 - January 17th 2012 - Happy Dance!
March 2012 - clean CAT Scan
August 2012 - Cancer moves to stage 4
CAT shows cancer cells implanted in pelvis/abdomen
September - PET shows lung lesion 1.4 x 1 cm
October - begin sessions of Folfiri.3 - Avastin, Irotecan, 5fu
February 2013 - tumors shrinking, continuing biweekly chemo
April 2013 finished all 12 Folfiri treatments, scan shows only lung lesions
May - October Blessed chemo break!
October 2013, scan shows more growth in pelvis and lungs
Continue with biweekly Folfiri.3 - Avastin, Irotecan, leucovorin, 5fu
April 2014 CAT scan shows tumors in liver
June 2014 More tumor growth, stop Irinotecan cocktail after two years
June 2014 Begin Regorafenib (Stivarga)
I am due for the reconnection surgery in mid December 2009 (after finishing chemo). I recall that the last few weeks of radiation were unbearable down there, but that all went away about two weeks after radiation stopped. Since my surgery (have temp ilieostomy), I have had non-stop rectal pain that my surgeon at first said I shouldn't have had, then said it's normal and should go away. Wish he could make up his mind.