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

@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.

@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!

@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?

I just found this site and am blown away at the responses. Blown away because it never really occurred to me that so many others are dealing with the same issues as I am. I was diagnosed in October 2013 with anal cancer. I underwent 8 weeks of radiation and chemo, side by side (chemo was oral other than the first treatment). I remain cancer free (at least there. I was diagnosed with lung cancer last Dec and had surgery in February). The bowel issues have been ongoing since 2013. I try to manage them with all the same things other writers note. Fibre, Imodium, when to eat, knowing I need access in the mornings to a bathroom immediately, watching what I eat or drink when out, especially early in the day. One doctor told me to 'strengthen' the anal sphincter muscle. Made no difference. Incontinence has been an issue. It does govern my life and what I do for a good part of the day. It's not that easy to 'share' with people. When I travel I pretty much don't eat until I know we are stopped for a length of time and I have access to a washroom. No doctor yet has any reasonable answer for this. I take Imodium pretty much every day. It helps. Most days I remember how fortunate I am to be here. And some days are just plain frustrating and discouraging. I keep trying different combos of meds and foods.

@jimdiehl
I have a colostomy and would 100% rather deal with it rather than incontinence! This is
definitely a personal preference situation. Though I can reasonably guess none of us would choose any of these issues!

I just want to let you know you are certainly not alone. I was sitting on the porcelain throne wondering if I was the only person who still has life affecting bowel issues 10 years after chemo radiation treatment. It isnt as bad as it was 9 years ago, but I still try hard not to schedule anything before noon - or at least 11 am. I do wonder if anyone else spends a lot of time on the toilet when they might be "done" for the moment because they know as soon as they get cleaned up and ready to do something... they will have to go through it again. Across the holidays I must have eaten too many things that upset the precarious balance I can sometimes maintain. I have to remind myself that I am lucky - at least I am cancer-free...
Hoping you find relief -

Thank you so much for sharing your experience. Like you, I also dealt with similar bowel issues before treatment, but the urgency and frequency definitely became much worse afterward. Both my gastroenterologist and colorectal surgeon have recommended things like Citrucel and a handful of other options. They help a little, but only to a very small degree.

Unfortunately, I have not had anything close to a regular schedule in years. On top of that, anything that affects my anxiety or mood immediately shows up in my stomach. It feels like a vicious cycle. The discomfort and embarrassment feed the anxiety, and then the anxiety makes the symptoms worse, so you are stuck in a loop.

I tried probiotics for a while, but the cost really added up and I was not seeing much difference, so I stopped. These days I eat relatively well. I have cut out eating out almost entirely and try to avoid processed foods, but I still deal with constant gas and very loose watery bowel movements. On the days they are a little more formed, still nothing close to solid but closer, I will end up going three or four times within a couple of hours because I never feel like I am completely empty.

Most days, I dread the gas I cannot control, knowing it may eventually soil my underwear. For a while wiping only made things worse, so I switched to a bidet, but that also backfired. It felt like water was getting in and then slowly leaking out afterward. I cannot believe I am even saying all of this, because I have been holding it in for so many years. It feels gross, it makes you feel raw and exposed. And if I am oversharing, I apologize, but it has been bottled up for so long that letting it out almost feels like a release.

I am a man and I have tried cutting a woman's pad to make it fit. I have tried tampons. Adult diapers are far too bulky to go out in public. I have not worn a light colored pair of pants in almost a decade. At times it just feels insurmountable.