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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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@salsify I have these issues 35 yrs after radiation. I take immodium which was working. But now I take more and more and nothing is working. Good luck to find a solution
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1 Reaction@doxiemimi10, welcome. You're so right that is it a personal preference. I think the unknown is scary too. It helps to hear from people who are living well with an ostomy. How long have you had a colostomy? What do you wish you had known then that you know now?
@colleenjoan5, welcome. What did the doctor suggest for strengthening the anal sphincter muscle? Did you work with a physical therapist to do that?
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1 ReactionI have struggled with incontinence and mucus discharge for the last 13 years following my treatment for anal cancer. Currently I’m facing a prolapsed colon. I am supposed to
Have surgery to correct it, however, I’m terrified about the recovery. Has anyone had a similar situation?
Is a colostomy the answer?
I am so depressed that my
Life has been forever changed for the last 13 years. I can’t walk my dogs, go for a walk or the gym and am always ending up
In the restroom because my discharge is so disgusting. I constantly feel like I have a wet butt and I’m
Disgusted with myself.
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2 Reactions@colleenyoung The unknown can be very scary. Sometimes it feels safer to deal with the “devil” we know.
I’m new to the colostomy life having received it during a, thought to be, easy outpatient procedure. I’m the patient why waivers are signed. What could go wrong, mostly did.
I’m 2.5 months out from surgery. It’s been quite the bumpy ride. The odds are high I will not be having a reversal (due to radiation of the sphincter muscle being involved).
Incontinence would be one of the main issues (per my surgeon) so I guess I’ve given this some thought. However I absolutely understand how scary the thought of an ostomy is as well. None of these choices are any I thought I would ever have to make. My heart goes out to my fellow sojourners!
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2 Reactions@doxiemimi10
I’m so sorry that you were the patient where what could go wrong did. I have struggled with maybe having an easier time with my life if I had a colostomy, however, you seem to have given me pause. I’m just not sure what’s better- giving up on living or getting a bag. I know what I deal with now and not sure if a colostomy would be an answer. Thanks for sharing.
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1 Reaction@walkerlsroche I hope I haven’t discouraged you! I’m coping pretty well (most days 😉 with my new side-kick. I have my moments but I truly feel this is manageable. Sending you so much empathy as you make these difficult decisions.
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1 Reaction@doxiemimi10
Thank you. I’m just not sure!
As I read these posts I am reminded of all I’ve been through. Three years ago I was diagnosed with anal cancer. I had chemo and radiation. The radiation left my skin very damaged. It destroyed my sphincter muscle and left me with fecal incontinence. My days were spent in the bathroom or looking for one. The day my doctor suggested a colostomy, I sobbed uncontrollably in his office. I couldn’t believe it was happening to me. Two years later I am living my life to its fullest. Colostomy and all. I named her Libby because she liberated me from the bathroom! It was a big adjustment…lots to learn and many decisions to make. There’s no need for anyone to suffer with incontinence. Please speak with your doctor and consider this as an option.
@colleenyoung Thanks for the welcome. The oncologist suggested 'tightening the sphincter' as one would if you were trying to not have a BM. Really, like doing Kegle's in some ways. No physio. It didn't make any difference. When I am in the situation where I have to really go to the bathroom (diarrhea), nothing is stopping that.
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