New saying (a belated) hello

FormerMember over 5 years ago

1 reply
117 subscribers
837 views

Hi all,

Late to the forum, I've got by OK so far but felt the need to talk to people finally, not my strong point!

I'm 46, fit healthy vegetarian, the last person you'd expect to be diagnosed with very low down stage 3 rectal cancer in March 2019. Did a capox course over that summer followed by radio in the autumn to shrink things down. This all worked a treat, the only issues I had were the cold sensitivity and super-tingly hands/feet from the capox. Just as well it was over the summer, if it had been winter the cold weather would have made my work (gardener/groundsman) pretty unbearable. But after treatment was told it had been a total success and (fingers crossed) all clear. Had an "ultra-low" resection in January this year, lost the last 20cm of rectum down as low as my surgeon could take it safely, and was given a temporary loop ileostomy to rest the join. Ideally this would have been reversed around 8wks but due to covid ended up 6 months, and I was reconnected on Monday. All in all I got on OK with my stoma, not to the point of naming it and being friends (I liked to call it "tick" or" leech") but things stayed stuck where they should etc. It was always pretty much silent most of the day, very active evenings/at night which was a bit disruptive.

Usually they like to keep you in after a reversal until you've produced something to show everything is working, my surgeon released me the next day, I think due to my relative youth and healthiness. Just as well, the 6 days I spent on the gastro/intestinal ward after the ileostomy were the worst of my life, only made bearable by self-service morphine.

So, last night around 2am I was surprised by the first bowel action in 6 months, like change-the-sheets surprised. Which was stupid of me obviously. Since then been very frequent/loose, to the point of not wanting to go back to sleep in case of another "accident". Half this written from the loo, put it that way. Going to give loperamide a go today/tonight, I know it's very very early days and things could take a long time to get anywhere near "normal", but my breezing through the rest of treatment may have given me a bit of false hope. Then again I have always hoped for the best and not dwelt on how bad things could be, my policy from the start was that I really shouldn't have cancer and I wasn't going to take it.

Anyway, long story, not really looking for much other than sharing experiences/tips/encouragement, we'll see what the nurse has to suggest when she rings later today.

Cheers, Geoff

Kareno62 over 5 years ago

Hi and a warm welcome to the board from me. I’m going to attach a couple of links before I forget!

https://community.macmillan.org.uk/cancer_experiences/ileostomy_and_colostomy_discussions/f/ileostomy_and_colostomy_discussions-forum/188680/part-2---the-faqs-of-having-a-stoma-reversal

https://bowelcancerorguk.s3.amazonaws.com/Publications/StomaReversal_BowelCancerUK.pdf

Yes things can be very erratic in the early days and can apparently continue to improve for up to 2 years. My stoma was also a night owl and my surgeon warned me that my bowels would behave similarly after my reversal. Things will never go back to how they used to be but you will get used to a new normal. As you have had a chunk of Bowel removed then your stools will reach their exit point more quickly and therefore will have had less time for the body to absorb the water from them hence the looseness. Imodium/loperamide can help with this as it slows the transit down. I was told I would probably be on them for life and even now (reversal was March 2018) I Take 2 before breakfast and 2 before tea.

It might be worth keeping a food diary for a couple of weeks just to see if certain foods cause a problem then you can cut those out and try reintroducing them at a later date. The usual culprits that thickened up the output of your stoma could also help?

Not sure if you’ve been practicing sphincter exercises? Basically you squeeze your anal muscles (as if trying to hold in wind) then release and repeat - the idea being that, if you feel the sudden urge to go, it can be ‘safer’ to try and hold it in until the urge passes rather than making a dash for it!

You will probably find that your bottom becomes very sore after all the toilet visits. Treat yourself to the softest toilet paper you can afford, wet wipes, sudocream. When things became really bad I resorted to using the dry wipes that I’d had for my stoma and disposed of them in the leftover poo bags. A top tip for protecting the bed sheets are puppy training sheets which can be picked up quite cheaply and popped underneath you. I’ve also heard of people wrapping one around themselves under their underwear for extra security.

Hopefully your nurse will have given you some more advice but hang in there and things will get better over time. There’s quite a few posts about reversals on the Colostomy and Ileostomy Support page if you just type it in the search box?

community.macmillan.org.uk/.../

Take care

Karen

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm