Living with long-term bowel side effects post anal cancer treatment

Posted by gavid @gavid, Aug 15 8:46pm

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.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

gavid | @gavid | Aug 20 4:33pm

In reply to @leeb123 "I don't mean to sound brutal but, your quality of life could improve with a colostomy...." + (show)

Given all I have not tried... this feels like a last resort. Thank you

shelbym | @shelbym | Aug 23 11:34pm

@gavid I totally understand. I too, have the same issues from anal cancer! I have found some relief with a medicine called Colestipol. It has been a life changer! It was originally designed to lower cholesterol. I don’t know how well that worked but they did find that it works very well for diarrhea. Please ask for it.

I am now looking at getting an implant that send a low grade electrical stimulation to my anus. This is to help it work properly. Because even though the diarrhea is so much better, I still leak and sometimes more. It has affected my relationship with my husband, I have figured out (now that I’m on this medication) I can time our intimacy for late afternoons with no issues.

Contact your Mayo doc about this implant! Maybe it will help you too. Also get on Colestipol asap…you’ll thank me! ; )

Good luck!

slindsay6 | @slindsay6 | Aug 24 1:36pm

In reply to @gavid "Thank you so much. Just being able to talk about this and knowing I am not..." + (show)

I declined SNS initially. I researched and believe Medtronic stimulator was the best for me.
I did not want to under go surgery again, I’m so glad I did.This is not a cure all but it has made life so much easier. Thank you for sharing. We are not alone, I have learned so much by reaching out and sharing. All the best to you. Let me know how your situation progresses.

Camilla & Gregory | @bcamilla74 | Aug 24 10:36pm

My husband has had dumping syndrome since an accident in 2003, so we empathize.🙏

rioa21 | @rioa21 | Aug 25 7:25am

I understand completely what you’re going through. I was diagnosed with anal cancer. My treatment was 6 weeks of chemotherapy and 6 weeks of radiation. Half way through the radiation the diarrhea started. It was uncontrollable. I was told it was caused the sphincter muscle being damaged from the radiation. I was dealing with fecal incontinence. I spent all my days either in the bathroom or looking for one. Besides the diarrhea, I was in terrible pain from the radiation burns. A bidet and Aquaphor were my best friends. When my doctor told me that I would need a colostomy, I sobbed in his office. I thought it was the worse possible news. My osyomy will be 2 years old in October. It’s the best decision I’ve made. It’s given me back my life.
Is this something you should consider?

jimdiehl | @jimdiehl | Sep 7 12:19pm

I am a colorectal cancer survivor who completed a rectal/sigmoid resection and radiation therapy in 1986.
Like you, my bowel movements have not been normal since. But, I have found some ways to help me cope.
I would like to learn more about your experience
Did you have resection surgery in your lower (sigmoid/rectal) intestine?
Did you have radiation therapy in those same locations?
Do your bowel movements generally start out as solid stool, and then gradually turn soft, and finally complete runny, even all liquid often during the same sitting?
Your answers, if you are willing to provide them, may help me relate my situation to your and let you know of some successes I have had in trying to manage my bowel movements in the situations that you describe

cinwilcox | @cinwilcox | Sep 10 6:05pm

This may seem extreme, but a colostomy would solve your problem. You would be more independent and could travel whenever you wanted.

jimdiehl | @jimdiehl | Sep 15 11:16am

In reply to @cinwilcox "This may seem extreme, but a colostomy would solve your problem. You would be more independent..." + (show)

My step father lived with a colostomy for his last 30 years. I had a temporary colostomy for 90 days after my surgery. There are a lot of things I will try before I elect to return to a colostomy.
For example, wearing Depends full time would be preferable to me and I am not there yet. As a full time flight attendant, my lifestyle is constant travel and not being bathroom dependent when dealing with passengers or crew members. I have made progress over the last 10 years but am not where I want to be.

jimdiehl | @jimdiehl | Sep 15 11:20am

As a rectal cancer survivor with low anterior resection syndrome, I have found loperamide (imodium) helpful in stopping diarrhea. If you have not tried this, you may want to speak with your gastroenterologist or physician and determine whether you should try it.

rioa21 | @rioa21 | Sep 16 5:26am

My anal cancer was diagnosed in2022. I had radiation and chemo for 6 weeks. After the second week of radiation my bowels were not the same. I spent my days either looking for a bathroom or being in one. It was horrible. The radiation had killed my cancer and at the same time destroyed my sphincter muscle. The day my doctor told me I needed a colostomy bag, I sobbed right in his office. I thought it was the worse thing that could happen to me. Now almost 2 years later I am enjoying my life. I named my stoma Libby, because she liberated me from the bathroom.
Is a stoma something your doctor has recommended? It has literally given me back my quality of life. Maybe you should consider this an option?