Ileostomy reversal issues 12 weeks on

FormerMember
FormerMember
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Hello everyone,

I have just joined the group. 

I hope everyone is doing okay and not feeling alone.  Im like everyone i guess looking for feedback or advice. 

Will try and not bore with a long message but after successful tumour removal after 25 rounds of radiotherapy,  chemo drugs and a few rounds of chemo (should probably add im 46) and spending 5 weeks in hospital.  

After 3 plus months with a stoma i had the reversal late October so im about 12 weeks from reversal.

Id tried to prepare myself for having to run to the toilet constantly. The internet full of such stories!

My bowels moved within a couple of days of the reversal.  And when i wenr home i did have some urgency. Cow pawt type movements without being to descriptive. Then it changed to more pelleting.

And very very occasionally more normal movements although thats rare.

Im finding now i can be constipated for 4 or 5 days. Red wine would solve that but not always and if i have it it can be brutal afterwards.

I know its early days. I clearly dont have a blockage but i can feel quite bloated and the stomach spasms are quite painful. Buscopan only does so much.

My gp has suggested laxido to try and nudge the bowel a kick start some normality. She thinks my bowel surgery will of healed ( the wound itself is still painful....more due to nerve damage of course)

And im aware it can take a year to find what will be the base line for what i should then expect is what my normal might be.

I have no support from my stoma nurses now.

I see people suggesting prune choice or flymo (spelling!?)

Im wondering if anyone has had any similar experiences with constipation then urgency? Any advice or tips be much appreciated.  I know each case is unique but id appreciate any advice.

Many thanks. 

  • Hi . Unfortunately it can take a good few months for a reversal to settle down (even up to 2 years apparently) and, as you say, everyone has different issues - my friend struggles with constipation whereas I struggle with loose stools. I’m therefore not the best person to advise on constipation other than to say that my friend swears by a glass of prune juice in the morning. 

    It sounds like things are maybe backing up a bit when you’re constipated and, once you’ve been to the toilet, then the floodgates open. You may find an immodium/loperamide helps at this point but don’t want to risk getting bunged up again. It’s a fine balance to find isn’t it? I seem to remember someone saying that they took liquid immodium so could then only have a small amount (like the equivalent of half a tablet) or maybe you could try the sane foods that worked with your stoma like wine gums, jelly babies, marshmallows etc.

    Ive attached a booklet from the Bowel Cancer UK site which covers eating well after surgery and a reversal so hope this helps?

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

    bowelcancerorguk.s3.amazonaws.com/.../EatingWell_BowelCancerUK.pdf

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • My mum is having same problem.....exactly....and I posted on here recently. She is trying lactulose....but just smaller amounts than prescribed. This whole thing is just mentally getting her down so much!! I think 12 weeks is still in the recovery time...my mum is 6 weeks post recovery and is struggling with how long it's taking to settle down. 

    Keep us updated.