Still haven't healed from radiation after 18 months

mp327 said:

StruTanToot

Welcome back.  I'm sorry you are experiencing the issues you have described.  The narrow stools could be caused by stenosis of the anal canal.  Just like for women in the vaginal canal, radiation can do the same in the anal canal.  The pain and bleeding you are experiencing could be due to several things, including internal hemorrhoids, radiation proctitis or an anal fissure that won't heal.  Radiation causes the skin to become very fragile and friable, so it takes only the slight amount of irritation to experience problems.  I hope your exam will be done with no or only minor discomfort and that the cause of these symptoms can be easily identified and resolved. 

I think for a lot of us, things will never be the same post-treatment for this disease, but as long as we stay NED, most issues are tolerable.  I hope this will be the case for you.  Please let us know how it goes.

Welcome back
Yes I had many issues with the anus being sore and bleeding. Charmin number one, no others! Never leave anything hanging around the area. Even if you have diarrhea it's best to wash it off. The skin is so delicate. Nuts have kept me regular of late and water. But too frequent stools can cause as much trouble as less frequent. I always have pain. Like delivering a baby every time.

It's a rough road, but I keep plugging along, hoping to feel better someday.

You are not alone!

i can relate

i just had bleeding and pain this am ... i am almost 5 years post tx..... i do hurt when they do DRE's and proctosigmoidoscopy but i just stand it.... at MD anderson , they do not do these under anesthesia.....last check up was in March and i nearly jumped off the table and tried to contain my yell.....but my pain has gotten better during Bm's.... my stool finally is larger ( about the 4 year post tx time).....but about once per month i can tell that the BM is tearing the tissue... even tho i keep my stools soft.....anything can tear the tissue no matter how small.... i just know that this is my normal now..... i hope this will not be anyone else's..... MDA says permanent radiation damage.... nothing can be done.... i also put Balneol on my anus each morning when i first get up to help the slide with BM....Balneol is in most drug stores or can be ordered.... it is a lotion type to help..... sephie

StruTanToot said:

Thank you all for your help,

Thank you all for your help, encouragement, and feedback. I just wish we all could heal fully, but I'm here and will keep fighting. 

Have a wonderful weekend.

StruTanToot

That's really all any of us can do--just keep on keeping on.  Some things will never be the same, but life is still good!  I hope you have a nice weekend too!

I'm at three years, nearly,

I'm at three years, nearly, post tx.  I feel soooo much better!  Yes, I still bleed and pass mucus and I sometimes don't run fast enough if you know what I mean!  I use baby wipes instead of TP and carry extra undies in my glove box, LOL!  Nuropathy in my feet....they burn like crazy sometimes.... 

however I remember the three weeks after treatment, two of which I spent in isolation for no immune system, third degree burns on my "every thing", so depressed and sick I really didn't WANT to go on....  Depression, pain, nausea, PAIN, PAIN...y'all know...so now is soooo much better even with the side effects and the "new me" as we say.  Not so much pain or depression...  I love being alive..I wasn't sure I ever would.

just keep putting one foot in front of the other..

sephie said:

i can relate

i just had bleeding and pain this am ... i am almost 5 years post tx..... i do hurt when they do DRE's and proctosigmoidoscopy but i just stand it.... at MD anderson , they do not do these under anesthesia.....last check up was in March and i nearly jumped off the table and tried to contain my yell.....but my pain has gotten better during Bm's.... my stool finally is larger ( about the 4 year post tx time).....but about once per month i can tell that the BM is tearing the tissue... even tho i keep my stools soft.....anything can tear the tissue no matter how small.... i just know that this is my normal now..... i hope this will not be anyone else's..... MDA says permanent radiation damage.... nothing can be done.... i also put Balneol on my anus each morning when i first get up to help the slide with BM....Balneol is in most drug stores or can be ordered.... it is a lotion type to help..... sephie

I can relate...

 

I too am 5 years out from diagnosis. Treatment took me 10 weeks and if I could have run away I would have, but you just can't hide from my family.  I also have permanent chronic radiation proctitis and am finally accepting the fact that I have to take stool softeners and lactulose and milk of magnesia, yes all three, every day for the rest of my life, I am 57. When I don't I suffer with pain, colonic stenosis, constipation, bleeding and in the hospital 2-3 times a year. I am my own worst enemy because I always find a reason to not take them...had somewhere to go in the a.m. and couldn't be tied to the toilet all day. Even taking all 3 did not insure a BM but it usually insured bloating and gas, so that would cause me to not want to go out around people. The immediate urge to go and the inability to stop it if necessary due to lack of muscle control and the soft stool having a mind of its own. So, no having this after 18 months is 'normal' and it could be permanent. When my father passed away in FL where I had rushed to be by his side I ended up in a hospital down there because I didn't bother with the laxatives because I wanted to be with him. I was scolded in the ER as putting myself in a life threatening position because my colon just stopped working and the stool was stuck in there and colon was distended. Usually the nerves in the bowels are more sensitive to stretch or movement and this can lead to more pain. The inflammation ran the whole gambit of my gastro-track and I was in pain but they withheld opiate medication because it would compound the constipation so they basically let me suffer with excruciating pain. Surgery was discussed but they released me with the promise I would return to TX and see my own doctor immediately. It took a 2 days of Golytely to clear my system enough for a colonoscopy. It left me in pain and fatigued and let's not forget depressed and anxious. This was probably the worse hospitalization for me as my father had just passed (he too had stage-2 anal cancer at the same time as me and he had the added problem of having prostate cancer 10 years earlier, he was my rock through my journey) so I hope you take my advice (I often don't) and take the softeners/laxatives to prevent pushing, tearing, bleeding and pain. It is a long-term side effect that started when I was about 18 months out of treatment so your timing is normal but make sure you mention it to your doctors. Bonam sanitatem! Bene tibi!

OMG.  It was 4 years for me

OMG.  It was 4 years for me before I felt better after all the radiation.  I still cannot wear underwear as it chafes my skin so bad that I bleed so I am now and always will be a commando girl.  I always carry a squirt bottle of water in my purse for bm's as I still cannot handle toilet paper.  I still get a sore butt like you would not believe from the runny stools after eating fibre and soy sauce kills my digestive system.  I am now almost 8 years out and have accepted this as my new 'normal' and I'm ok with that.

stillbill said:

anal pain

I also have finished treatment 30 days ago. My anus feels like an exposed nerve. Went to colorectal dr. Yesterday and flinched away when he tried a digital exam. He seemed perturbed that he couldn't finish his exam and told me that I need to realize that my tissue in that area would never be like it was and made an appointment for 30 days from now. This exam/discussion left me frustrated, no suggestions on what I could do to make it better to heal. 

Stillbill

 

Most docs wait three months before performing an exam.  

Help for narrow painful stools

The stool is caustic to sore skin tissue and if it's soft or loose it will continue to hurt.  A barrier helps keep the stool away from the skin.  There are many out there but some sting.  My suggestion is Desitin generously coated and then put a small folded up tissue in your crack.  You get used to the feeling.  Don't wipe harshly after going to the bathroom.  Having a generous amount of barrier helps with wiping because you won't irritate the anus as much.  Re-apply.

I take 2 Citrucel tablets when I wake up and before bed to help with the forming of the stool and also Align probiotic.

Hope that helps!