11 Yrs Post Rectal Cancer Treatment: Still have chronic diarrhea: Help

I am trying to get an appt with an oncologist but Kaiser seems to be resisting.

I understand all to well. At 32 I was diagnosed with colorectal cancer and had my whole colon and 35-40% of my rectum removed(radiation and chemo both prior to and after surgery) . That was 5 years ago and I hope estly believe im losing ground regarding the severity and frequency of my diarrhea, not to mention the damaged nerves that cause any and all restrooms experiences to feel as tho I am ejecting pure sulfuric acid out my tear end. Daily I am prescribed 1000uL octriatide, 20mg lomotil and I still have to take upwards to 30+ immodium a day just so I don't have to literally live on the toilet, im seriously not kidding. , I was ph.d physical chemist, pharmaceutical research chemist, and lab manager prior to my diagnosis but this has destroyed any chance of holding down any job . I wish I could relate it to tigh rope walking but even that can learned with practice. My life has been utterly destroyed, chaos has replaced any and all routines, and I've given up on any future dreams...the icing on the cake..my fiance left me because I was bringing her down. I dont know if this brings any comfort but youre not alone in the misery....

there are specialty doctors that (unfortunately are few and far between), specialize in rectal control. sorry I cannot remember what they are called but someone on this site may know and help you. they work with biofeedback as well as diet and medication. I had a friend who went to one (too 3 mo. to get an appointment) and she said it really helped.
good luck. wishing you a brighter future.

Try eating a bit more fiber and see if it don’t help to bulk your stool up a little.

I found fiber makes it worse

@irenemargaret
You are right Fibre will make it worse.Low fibre diet alone can be bowel binding.The day before I have to go out I make it totally fibre free,easily digestible carbs like rice products. On the day of going out I take a normal saline enema,500 ml of the Sterile IV fluid is what I use.After that I take only clear fluids.Take a 2 mgs Loperamide.So far this has helped me.The bowel will not move even for 12- 24 hours.I am a rectal cancer person with a Descending colon J pouch.Rest of the days I load myself with fibre and pay a price for it with 20-30 bowel movements.High fibre diet is needed to prevent a recurrence

@premi I really would love to hear what everyone eats! I am having trouble eating anything lately, any suggestions would certainly be considered!

@irenemargaret
Hope you like what I eat
I am 100% vegetarian and 99% vegan ,very rare dairy products.I became vegan 8 years back after my Rectal cancer diagnosis
Though fibre is a challenge as that is what is best for gut health I consume all veggies properly cooked and made into my favourite dish .That way I eat very little of anything made of grains. If I need a grain based food it is rice ,barley and oats. Where ever dairy is needed I use home made nut milk and for sugars I use dates and figs
I do intermittent fasting also from 6 PM to 10 AM
Hope you have heard about the Acronym GBOMBS which stands for Greens,Beans,Onions,Mushrooms,Berries,Seeds.
These are my go to list.
I don’t take raw veggies and smoothies.
In spite of it the bowel movements are challenging but I have the energy to cope up with it.May be I am happy eating what I relish and staying in remission after stage 3B in spite of of refusing post op chemo is motivating me to eat like this. Of course thankful to HIM