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Living with long-term bowel side effects post anal cancer treatment
I’m an anal cancer survivor (2014–2017) still struggling with severe bowel side effects years later. I’ve tried HBOT, biofeedback, and diet changes, but incontinence continues to affect my daily life and relationships. I’m looking for support, advice, or simply to connect with others who understand.
I am literally in tears. I have needed this for so long. I dealt with anal squamous cell carcinoma from 2014 to 2017. I did one round of chemotherapy, and I can’t remember how many rounds of radiation. I had the full support of my family and fantastic doctors, so I don’t have any complaints, but my life has never been the same. Until today, I had never found a place where I could ask questions (other than to my physician).
It has been 8 years since my last radiation, and I haven’t had a regular bowel movement since. It is always runny. My relationship has essentially been diminished into a roommate situation, because how can it be anything more when I basically have no control of my bowel movements? I can’t eat while I am out of the house unless I have a plan for how to get to the bathroom, and the bathroom must be available — so that rules out most public places. Going to the home of family and friends is embarrassing.
I have undergone several summers of 40 HBOT treatments, I have done two rounds of biofeedback therapy, and I have increased fiber intake. I have my regular colonoscopies done to make sure all remains clear, although the prep for the one last year felt like I was dying. But last night something that has never happened before, happened — I had a runny bowel movement in my sleep. I tried cleaning everything, but I had already moved myself to the couch to be closer to the bathroom... and now the couch is ruined. Everything else is washable, but it doesn’t matter how much I’ve cleaned it, the smell won’t go away, and I am mortified.
I frankly think my partner should find a life with someone else, someone who can provide them intimacy, who can go places with them, who can lead a normal life. It really is exhausting, and today I finally searched high and low until I found this group. And here I am, venting.
I don’t know what help I need. I don’t know what else to do. I have read about SNS but I am afraid of doing something that may interfere with future HBOT or MRIs.
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I have more frequent diarrhea, abdominal spasms, gas, and fatigue since I had rectal cancer surgery 9 years ago along with radiation and chemo. I've done fiber, probiotics, Imodium, diet modifications and only had minimal success. I welcome any suggestions to improve my symptoms. I plan to see my colon rectal surgeon for follow up. I made to see a team of doctors that specialize in treating RE- Any recommendations are welcome !
kskutnik
I am sorry what you are going through right now! I am a colon cancer survivor and I suffer with chronic diarrhea, spasms, gas, and fatigue x 8 years. I don't have all the answers but I think you should align yourself with a GI and colon rectal specialist at a large hospital system that has an excellent rating. I plan to meet with my colon surgeon to get more advice and then I may go to a health system to get their opinions on how to treat the diarrhea and spasms. It's a hard road but forge on and work with doctors who have experience in your condition. Don't give up! There are good doctors out there but you have to look for them. Talk to your family and friends about your challenges. Meet with a counselor if you are really struggling! There is nothing wrong with doing that! Keep fighting! You got this! I'm choosing to keep fighting!
@papajeff1 I’m sorry for your struggles. Look up
Metronidazole. There is also a late stage anal cancer (non chemo) pill made by Takeda.
@samclembeau This is hugely helpful. Exactly what has baffled internist and oncologist. Had shingles in teens (2 different vax as well). Never had anything like this genital outbreak- began 3 mo after end of treatment.
@asknot136 have you ever had herpes in the past radiation can cause a return. Mine are now ongoing and I take valacyclovir daily to control them (they are on my spine where the radiation beam went in) I hate taking drugs, but every time I quit I get a flair up.
If you never had herpes, but had chicken pox, you may want to read the following about shingles...
Radiation can wake up your chickenpox virus: Radiation therapy weakens the local immune system. This can cause your old chickenpox virus to reactivate and travel down the nerves to the skin. [1] (https://tcr.amegroups.org/article/view/13959/14174), [2] (https://tcdermatology.com/herpes-zoster/)
It causes shingles, not herpes: When the chickenpox virus wakes up, it causes shingles (herpes zoster). [1] (https://www.wsderm.com/can-i-still-get-shingles-herpes-zoster-if-i-had-chicken-pox/), [2] (https://tcdermatology.com/herpes-zoster/)It can look like genital herpes: If you receive radiation to your pelvis, hips, or lower back, the shingles rash can appear on your groin, buttocks, or genitals. Because shingles creates fluid-filled blisters that look almost exactly like genital herpes, it is very easily misidentified by eye. [1] (https://pmc.ncbi.nlm.nih.gov/articles/PMC11738103/), [2] (https://www.clinicbarcelona.org/en/news/herpes-zoster-when-the-chickenpox-virus-reactivates-after-lying-dormant), [3] (https://www.intechopen.com/chapters/64844)
@asknot136 I have taken Metro., but I thought it was for Yeast overgrowth. Maybe I'm confused! I have radiation enteritis from chemo./internal/external rad. in 2002 from Cervical Cancer. In 2020 I wad diagnosed with Adenoid Cystic Carcinoma in my trachea. That metastasized into my lungs & in Dec. of this year the doctors found Colon Cancer that is not related to anything previous except they think it is a side effect from my very 1st radiation.
I'm taking Capecitabine orally now & Herceptin infusions. I'm not having any type of outbreaks, but I cut way back on my dosage because of diarrhea & weight loss.
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1 ReactionHas anyone been treated with metronidazole for bowel bacterial infections or been diagnosed with radiation enteritis? Anyone having recurring outbreaks of genital herpes lesions post SCC radiation + capecitabine?
This is an awful condition to live with. In the 2 days I have been reading posts here, I have learned more than any of my Dr,s told me. And 3 of them initially diagnosed my stage 3 SCC as a bleeding hemorhoid w/out ever doing a physical exam.
One thing I’m finding is that the resulting after effects may not go away - and we will have to live with them. That means finding more info about diet, exercise, new medications, and finding new ways to control what we can.
Where are the new treatments and drugs for this, and why is it happening to younger people - many who were VACCINATED to prevent HPV viruses?
You are not alone, my dear. Stay connected.
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1 Reaction@asknot136 it’s nice to put in to words.
Most of our friends and family just can’t know what we are going through as we try to live a normal life.
Hugs, prayers and a day at a time-
I feel your pain and discomfort. I had colorectal cancer treatment in 2015 consisting of 2 rounds of chemotherapy and extensive radiation- every single day for 6 weeks and I have been paying the price ever since. While they burned away the tumor (for which I am thankful and still alive, though struggling mightely.) they also damaged my sphincter muscle in my rectum and now am dealing with rectal incontinence and facing a lower anterior resection with a permanent colostomy as my last hope. Needless to say I am miserable. Any other suggestions for relief? Jnc