Need help with diet after ileostomy reversal

I had my reversal on 8th March this year and was told if output was too loose to start introducing more fibre. I never had loose output but was going many times but with just little hard nuggets. Initially was in the loo for ages going through loads of Johnson’s baby wipes.

A friend of mine only ever had loose output but she liked her Chinese takeaways too much! I was still on low residue for a few weeks after the reversal (didn’t know how long I should  keep on it to be honest) and eating loads of marshmallows which I thought would bulk out the hard nuggets and make them softer. My husband said it was meant to bulk out loose poo to make it firmer poo so I may have got that wrong! 

Now that I have introduced more fibre - Bran flakes instead of Rice Krispies, wholemeal bread instead of white and more veg and fruit I am going to the loo less times a day (though still 7 or 8) but the poo is larger and softer and more like it was before I was diagnosed. I think you could start to try and introduce more fibre  but other people might have better advice. 

I still have lots of twinges in different places though and heavy full feeling above my hysterectomy scar where they went in to remove the rectal cancer but that is usually as the bladder gets very full. 

Hi Never2young

You sound to be doing pretty good to me and I'm sure things will start to improve. I say this because I am 8 weeks post ileostomy reversal and went through exactly the same thing although never got up to 40 times a day - I'm not surprised you were having regrets!

Unfortunately I was readmitted after a week with a leak so I was not sure how much of my loose output was normal and how much was due to the antibiotics but the nurses used to laugh at me running to the loo with my carrier bag containing wet wipes, dry wipes, clean underwear, big pads, little pads and soothing cream because I never knew what to expect when I got there!

Like you I had a low residue diet to start to with but now I eat pretty much anything and everything as I am desperately trying to put some weight back on. I am eating a lot of salad at the moment with coleslaw and potatoes and eating skins and seeds and everything. I'm having bits of fruit but made myself a lovely fresh fruit salad the other morning and felt a bit bloated after that so not had it since.

Now down to the graphic bit! For the first 3/4 weeks post op my output was totally liquid before 'improving' to small fluffy pieces. I am now passing small thin chipolata size pieces (sorry!) in varying quantities. My surgeon said my Bowel movements will never be the same again so I don't expect to ever reach a normal size stool but who knows?

Were you told about any exercises to do to strength your sphincter muscles? It helps you hold in the urge to go until you can get to a toilet although I find that 'holding it in' too often can cause a really bad burning sensation. I've attached a couple of links below to factsheets

www.beatingbowelcancer.org/.../BowelControlExercisesV5.0.pdf

www.beatingbowelcancer.org/.../Stoma-Reversal.pdf

I am currently experimenting with taking immodium as I eat my main meal at 7.30 (I know I shouldnt) and find that I seem to have an hour in the early hours of the morning when I'm having to get up a few times to open my bowels. The Imodium does seem to give larger firmer stools but worked fine one night but then not the next so it's work in progress!

My surgeon said that things can take up to 2 years to settle down but I think as long as you accept that things will never be like they were before surgery then you can learn to manage.

Don't forget you can also ring your stoma nurse - mine said they were still there for me even though I am his bag free.

Hope this helps - maybe no magic answers but hopefully reassures you that things are normal at this stage

Take care

Karen x

Ps no sore bum? Lucky you - I know why babies cry now and I've been close myself!

Hi Karen,

Well firstly, you made me laugh out loud with your humour but secondly, I was thrilled to hear I am probably doing quite well. Your output descriptions made me chuckle because I have had one "chipolata" visit to the loo which I was actually quite thrilled with (lol) but has only happened once. I think you are right that it will just never be as before, so provided I accept that I think I need to be brave and start eating things I have missed. You sound just like me. I missed colslaw, muesli, salad and fruit. Thanks to you, I am going to relax a bit and start having a few of these things without going mad. The last two days been loo only twice a day. Woo hoo and no leaks in about 5 days now. Feel like have good control now too! Hopefully surgeon will also say on 22nd that all things considered I have faired well and I should just crack on with life! Like you I find if I eat too late I pay for it so have been having main meal at lunch when I can or eating between 5.00-6.00pm and I go through the night now.

Big thank you for your cheerful detailed reply. I feel better.

Fay.xx

Hi and thanks for your reply. I think I have been going about eating totally wrong and avoiding fibre as much as possible thinking it would make matters worse! Will take your advice. Got brown bread and bran flakes in so will start tomorrow. 

Not sure how the whole marshmallows and jelly sweets works because it may have worked for us with a stoma but I have scoffed plenty and not changed my output now I am bagless.

Funny enough I struggle with the whole full bladder discomfort too but I did after the colostomy was reversed leaving me with the temporary ileostomy. As you say think it is surgery related. It took a long time to ease off last time (long after wound healed) but we will get there.

I admire your positive attitude and also intend to embrace my new start.

Many thanks, Fay

Really helpful to read people’s experiences. 

I anticipate reversal op August or September and interested if anyone has had an ileostomy ‘high up’ the canal?  Most seem to have had a resection around colon/ rectum 

My resection left me only 1.3m of small intestine - but apart from a smallish piece cut out I still have pretty complete lower ileum and all colon etc

I guess that should aid passing solids and extracting water post op? 

Currently I need 32 loperamide and 4 codeine daily to slow down the transit and allow ileum to do all it can in its limited state - and restricted to a litre of St Marks plus 500 cl of other fluid - and food closely monitored - can’t wait to be able to have a large glass of water!

Any experience welcomed please

Cheers 

Hi, 

I just had my reversal a week ago and wanted to thank you for your questions and the responses it illicited. It's very helpful.

I always thought I had a very good diet prior to diagnosis of colorectal cancer 10 months ago.  I mainly ate vegetarian high fibre foods, with occasional fish or chicken.   I had a lower anterior resection last May and loop ileostomy for 9 months (8 of which were very difficult with wobbly inverted stoma).  I didnt need chemo or radiotherapy which I believe can make quite a difference to recovery at this point.

After surgery I felt great for about 36 hours but as soon as I ate I began to experience the constant  explosive rushes to the loo, which were worst at night.  I passed barely anything but water for the next 2-3cdays but felt very bloated.  The low residue hospital diet basically consisted or jelly and ice cream (I'm not great with dairy because it makes me feel hugely bloated).  The hospital expected me to produce solid stools before I left, but after a frank conversation, it was agreed that I was highly unlikely to achieve that on such a watery diet.  

I'm now 3 days out of hospital and eating quite a varied diet, including fruit and veg. I found that increasing fibre (not a lot) produces the chipolatas so lovingly referred to here ..I was sooo proud of myself yesterday!  I have more prolonged periods of potting (for me sitting still for more than 10 minutes can be very long) than leaky dashes, which is better for me n my glowing rear end. 

My diet sheet includes broccoli, skinless peppers, mangetout, carrots as low residue options and I have included these daily.  Also Avocados, which have more fibre, but which seem to digest easily. 

So I'm eating a light bread / white starch based breakfast.  A medium fibre lunch, being my main meal of the day ( today I tried Jackfruit ..watch this space) and light low residue evening meal being a vegetable soup or omelette.

Things are improving but the downside of adding fibre are:

1.   Even chipolatas (a step up from slugs) are uncomfortable and slow to pass.  I tried adding a little prune juice today, which shifted things, but go easy on that stuff...its rocket fuel!

2. Increased gas ...but at least I'm learning to distinguish the difference between gas n watery stools, which is quite difficult.

3. I'm still exhausted and not brave enough to leave the house yet!

I hope that by sharing what we do with diet  we can try to see a pattern of what works, because I'm not convinced that a poor low residue diet helps much. Although I'm also aware that everyone's body's and treatment result in unique responses.  I hope it helps to feel safe and brave enough to give different things a go. 

I've got a question on ileostomy wounds next post if anyone knows anything about that? 

Lots of love n big hugs to everyone.

T.XXX

Hiya, 

Just thought it might be worth mentioning what my nurses told me about bowel function after reversal.  I was worried as I only have 1/3 or my rectum left and thought that I might not be able to function very well at all.  I was told that at this stage, the difficulties that are likely to arise are due to the fact the bowel hasn't worked for months.  It's a muscle that goes slack and needs a gentle work out to rebuild strength and function.  I found that reassuring.  Hope it helps to make sense of what you experience.

With love

T.xxx

Had my reversal jan last year - lymphoma - lost a good bit of ileum 

first 3 weeks horrendous- first constipated - then fluid! Up umpteen nights long...

it gets better- eat sensibly with suitable fibre / lots of fluids 

 a year later - back to weight (put on 2.5 stones - I was down to 8 stone - male 5 feet 10

so glad - final I hope - blood test check next month xxx