Here's the thing ... three months after having my Stoma reversed, I have had weeks long glimmers of hope. But other than that I have to wear protection pants and eating normally can still cause a lot of problems. Someone please tell me this is normal. Please.
Hi Chocoblanc. Yes this is normal! Things will improve for up to a year so please don’t be too disheartened. I found I’d have a few good days which raised my hopes then would have some bad ones and feel gutted. I used to try and keep a food diary but wasn’t very good at it. Do you use immodium/loperamide? These can be taken 30 mins before your meals and can help slow things down. You could also ring your stoma nurses - mine told me I could still contact them even though I no longer had a stoma. I stayed on a low residue diet for a while after surgery which was better tolerated. The link below has a few tips which may help
Hope it starts to settle down a bit more for you
Thank you sooooo much - that is exactly what I needed to hear! You have made my week!
You’re welcome Chocoblanc. This was posted on the bowel cancer uk board a couple of days ago and I thought it was very interesting x
Karen, I can't tell you how much this has helped me. I thought the doctor in the video was adorable! Emotional, empathetic and reassuring. What really made an impression on me - and this is the first time in over a year of treatment that I have realised this - is the importance of seeking help longer term rather than suffering in silence. I feel so much better informed and reassured. Thank you my friend! Xoxox
Good morning! Hope you don't mind, just a few more questions! You mentioned you stayed on a low fibre diet for some time - roughly how long? I was told I could est notmslly after ONE WEEK! Big mistake. I just don't know now whether I should still be very careful orv if I should now be trying raw fruit and veg etc, more fibre, or still not? And did you go to see a gastro specialist or did you just work it out yourself? I know it is early days for me but I don't want to just sit around waiting if there is more I could be doing. Thanks!
Hi Chocoblanc. He’s lovely isn’t he? There seems so little information about after reversal issues. There’s a condition called LARS - low anterior resection syndrome - and theres a Facebook page for sufferers and some of them have an awful time with it. A lot are in USA and their physians don’t seem to recognise the problem and if course they need to pay or go through their medical insurance to get referred. I wondered if I might be suffering from it in the early days but my issues seemed minor compared to theirs.
My surgeon told me I could eat normally straight after the op so I tucked into a Cornish pasty with gravy! - big mistake - projectile vomiting then nil by mouth for 2 days etc. Anyway I think sometimes you’ve got to know your own body and do what you think is necessary. I think I stayed lowish low fibre for a couple of months then just ate normally. I found oranges initially gave me tummy ache but I’m fine with them now. I’ve stuck with white bread and I don’t really eat pulses anyway so that wasn’t a problem. Salads can make things a bit loose but I tend to be at home when I have those so near a toilet. We had a Chinese the other night and that set me off on several trips to the toilet at short notice so think I might stop those. Ive also has a couple of dodgy days this week - maybe the omelette my hubby made on Tuesday night? I would definately try introducing raw fruit and veg and if something has a bad effect then leave it but maybe try it again in a couple of months time.
Ive never seen a specialist about it. My surgeon told me that things can improve for up to 2 years but the guy on the video seemed to say 9 months didnt he? My surgeon also told me that I’d probably have to take immodium for life so I was taking 2 before breakfast and 2 before tea which seemed ok although I never seemed to fully ‘empty’ after going to the toilet (never trust a f**t!) I moved house a year ago into a different area and my new consultant gave be a quick internal, said I was constipated and to only take immodium on a special occasion like when going out?! So I tried that but was having far too many visits to the toilet so I’ve cut down to 1 a day before tea and a extra one if the runs start. I told the Colorectal nurse in a follow up phone call and she agreed that I knew my body best and to do what was necessary in my eyes.
Do you do the pelvic floor exercises? They’re on page 15 of this book. Sometimes it’s safer to hold the urge in than to dash for the toilet and can allow more liquid to be absorbed from the stool. I think also that the stool storage area of your bowel can stretch over time to allow you to retain more stools before you need to go?
Sorry about all the homework I keep giving you but stick with it and hopefully things will start to improve over time
Keep in touch and let me know how you’re doing
You could get referred back to see if rectal irrigation could help you.
Karen, thank you so much! You make me feel normal!! And you are right - it is a long guessing game with no fixed rules. How long ago did you have your resection? I'm assuming you had a Stoma? I just hope I can pass on my support to others like you have done to me. I think it is a lifesaver. Thank you again - isn't it nice to know that you haven't accumulated all this precious knowledge for nothing? Lots of love xoxo
Hi @Chocoblanc. I had my operation and ileostomy in Nov 16 and my reversal in March 18. I worry that my memory might not be as accurate as I think so up-to-date experience on the board is always welcome x
Hi Chocoblanc.I had my reversal operation almost 11months ago I'm eating better than ever as long as its not spicy A little and often Mornings are my bowls ( what's left of them ).active time .
Things are getting better and its having to get used to it but you will Today PJ day for me .I have a wee bump that gets bigger when I have to go .Its only the size of my palm..
Take it easy .Alaine
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