New Journey: Anal cancer and questions about temporary colostomy

Hey, I’m just healing after going through the entire regime that you mention. First thing they did was a temporary ostomy. Then I did oral Chemo and Radiation. Next was intravenous chemo and oral chemo. Then came the major surgery.
My tumor was shrunk by 70% but it still required a colostomy. So they took a stomach muscle to fill in all the gaps that were left from surgical removal of the remaining cancer involved tissues and the colostomy.
They call it a flap.
I cannot imagine going through radiation/chemo still trying to use the rectum for elimination. The radiation really does a number on things down there. I was hoping for a reversal of the ostomy, right up to the bitter end. But now that it’s all over with, and I’m healing, I’d rather have an ostomy than be suffering from Crohn’s like symptoms and such as that.
I don’t know what your particular situation is, but the radiation treatment does a lot of damage where they’re trying to blow away the tumor! It gets very tender and sore and it lasts a long time. Just be prepared to become an Ostomate.

I had this cancer two years ago. I had the standard treatment of two chemo pills a day plus radiation for 28 days. I had absolutely no pain. However, the bowel movements were pretty uncontrollable and I had to wear panty liners and Depends. That eventually got back to normal. All the treatment left me with great fatigue which is ever so slowly getting better, even as I’m ever so quickly becoming almost 86! Take good care and I wish you the best.

I had this treatment for rectal cancer and like Yancy I did not have any pain. the only side effect was diarrhea and not every days. I seldom took an imodium pill for diarrhea and that helped. I did have some fatigue. I was able to continue to work full time
At the hand my tumor had disappeared.
Wish you the best

@ajones01251980, welcome. I added your discussion topic to the Ostomy & J-Pouch support group as well https://connect.mayoclinic.org/group/ostomy/

Here are a few discussions that may interest you:
- Preparing for upcoming colostomy surgery-any clues on what to expect?https://connect.mayoclinic.org/discussion/preparing-for-upcoming-colostomy-surgery-any-clues-on-what-to-expect/
- Preparing for a colostomy reversal: What tips would you share?https://connect.mayoclinic.org/discussion/preparing-for-a-reversal/

Also see the group search for other discussions related to anal cancer, like this one:
- Looking for Anal Cancer Support: Anyone else here with anal cancer?https://connect.mayoclinic.org/discussion/anal-cncer-support/

I hope you saw the helpful replies from fellow members like @girafe @yancy and @charlescarnohan.

@ajones01251980, have you started treatment? How are you doing?

@charlescarnohan
Thanks for the insights. I had rectal cancer treatment consisting of chemo and heavy doses of radiation 11 years ago. I have battled rectal issues ever since and now reached the point of a non functioning rectum and facing a colonoscopy. is an ostomy my only option? thanks.

I was not given options: Stage 3 SC: 6 weeks capecitabine + radiation. Week 3 began painful bowel, urination, explosive unpredictable diarrhea, weight loss, lethargy. Intermittent saline infusions. By the end of 5 weeks, pain of open vaginal and anal lesions so intense and body so weak, I discontinued treatment. Took 1 month to recover enough to walk around the block. Began slow healing, 4 mo post treatment - clear scan. Then began succession of painful interior+exterior herpes/shingles genital herpes, resistant to valacyclovir but have resolved. Have not regained 15 lost lbs. have tried pre + pro biotics, B12 injections. Trying Integrative Medicine specialist soon and Enclave BioActives “emma” supplements. I am 76. This was misdiagnosed as bleeding hemorrhoid by 3 Dr’s who did scan and labs - never did a physical digital exam.
I expected to go on about my life after recovery. No one counseled me during the treatment or prepared me for after effects. This site has been the single best source of information - and the realization that I must adapt instead of searching for a magic solution. As someone posted, “isn’t it amazing that our bodies are trying to find ways to work around the damage of radiation.” There has to be a better, less destructive way to treat this disease. There has to be a reason why this is increasing in younger adults, despite getting vaccinated in adolescence. Where are Merck’s efficacy numbers on 25+ years of this?

@asknot136, I hear your frustration in that you felt unprepared and uninformed about what to expect facing anal cancer and treatment. It's a rough road that's for sure. I'm glad that sharing here in Mayo Clinic Connect has been helpful in learning more about adaptation and managing the side effects of the disease and its treatment.

I can see that you are also worried about the increase in young people being diagnosed with anal, rectal, or colon cancer. At the risk of taking this discussion momentarily off-topic, here's some information I found.
- Not all colorectal cancers are HPV related. Most anal cancers are HPV related. https://blog.dana-farber.org/insight/2020/10/what-is-the-difference-between-rectal-and-anal-cancer/
- Anal cancer is rare in people younger than 35 and is found mainly in older adults. People age 75 and older have the highest rates. https://www.cancer.org/cancer/types/anal-cancer/what-is-key-statistics.html
- The HPV vaccine is up to 97% effective at preventing cancer-causing strains of human papillomavirus and related cell changes when given before a person is exposed to the virus. Timing matters. https://www.acog.org/womens-health/experts-and-stories/the-latest/what-i-tell-every-patient-about-the-hpv-vaccine
- Colorectal cancer is increasingly affecting younger adults — a concerning trend. Dr. Eric Dozois, a Mayo Clinic colon and rectal surgeon, says about 10% of patients diagnosed in 2026 will be under age 50, compared with 3% to 4% just 25 years ago. As the trend continues, Mayo Clinic surgical teams are using innovative, minimally invasive approaches to treat colon and rectal cancer — helping patients recover faster after surgery. https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-advancing-colorectal-cancer-care-through-innovation-and-screening/

Back on topic re managing side effects:
Integrative medicine can be helpful in managing long-terms effects of treatment. Mayo Clinic has an Integrative Medicine and Health program combines conventional Western medicine with evidence-based complementary therapies to improve overall well-being and manage chronic conditions. https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567

@asknot136, are you also living with a colostomy?

Thank you for reaching out. I’m grateful for all the insights and feedback from this site. My questions about the HPV vax, however, are not addressed by the ACOG Dr’s statement that it’s 97% effective. I would have loved to see some recent clinical evidence, particularly since my kids received the version over 2 decades ago. Still effective?
I found a lot of information about the 2 (of 13) cancer causing HPV strains #16 and #18 here:
https://www.everydayhealth.com/hpv/what-are-hpv-16-18/
( Also a rise in the incidence of anal cancer in older white non-HIV infected women).

I did not have a colostomy, but could a reversible have spared me the damage of radiation??

The damage of radiation would not have been helped by getting a reversible colostomy.
I was told early on that I would have a ‘temporary’ colostomy.
HAHA that never happened and I am now approaching surgery #6 .
I am married for over 40 years and HAD a sex life.
The radiation burnt my vagina shut completely. No one told me to expect this. I had to find out at home in bed in the dark with my husband.
Cancer sucks, no buts about it.
Soldier on….
I am also an OR nurse x 40 years and never would have thought I would have every complication in the book.
Heading out to Mayo Clinic in 3 weeks for the 6th surgery. Hoping for better quality of life after that. I am 69.

At this point in your recent post I would think a colostomy is in your future.
Stay tuned on this site as it is the most honest and true advise you’ll ever get.