Moving on from bowel cancer

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tigerduff

Stoma reversal

Hello All

I am a newbie to this forum:)!
Just under a year ago, i had a tumour removed from the lower part of my rectum following early diagnosis. Due to the location of the tumour most of my rectum was rebuilt. I then had an 8x3 week course of chemo that finished in June this year.
I have recently had a face to face meeting with my consultant to discuss reversing my temporary stoma and his comments have left me in a dilemma! He explained very frankly that a reversal was very likely to cause me considerable bowel movement disruption in the short term (3 months) and that it would be very unlikely for my situation to ever get back to normal in the long term.
I have looked on line at various sites for guidance but much of the information is written in such medical technical detail that it is virtually impossible to draw a conclusion.
I am currently living an almost normal life with my stoma but, ideally, i was hoping it could be reversed, not knowing the possible consequences.
So, I would really appreciate it if anyone in their 60's, or maybe younger, who had a low rectum tumour and had the reversal, could advise if the decision provided a positive or negative result. Please also advise how many months it was after the original operation
that you had the reversal.
I am fully aware that each individual and circumstances are different but it would help to hear from people who might have had a similar situation to mine.
Thank you for your time and best wishes and good luck to you all.

Regards
Tigerduff

Mavis

Hi. I’m now 8 weeks post op following ileostomy reversal. I had an ultra low anterior resection in April. Things are good. First 2 weeks were a bit tricky, but things started to get better and now it’s very manageable. Still have the occasional adhoc visit to the loo but nothing to worry about. Returned to work last week and have several parties and weekends away so let’s hope it continues

tigerduff

Hello JC, Louise, Amanda and Mavis

JC, I hope your reversal goes well and you have a good outcome. Hearing stories like Mavis and Louise's certainly helps. Having had what is regarded as a major operation, followed by chemo and 12 months of your life disrupted, the last thing anyone would want with a reversal is a further 6-12 months of problems.
Amanda, I truly feel for you. It really is a tough decision especially if, like me, you are coping well with the bag.

JC36

@louise28 i pestered the surgeons secretary as everyone suggested - so I’m grateful I have a date. Thank you for your advice. I feel more nervous about this op. But your experience is really reassuring and gives me hope :x:

Amanda Sandham
Quote from @JC36:
@louise28 i pestered the surgeons secretary as everyone suggested - so I’m grateful I have a date. Thank you for your advice. I feel more nervous about this op. But your experience is really reassuring and gives me hope

I've thought about pestering so at least I'd know when I was going in. However, on looking at last year's diary, I realise that this time last year I was pestering about my initial operation. I went in on 16th December and was in over Christmas with no visitors and in a room by myself. I really don't want to miss Christmas this year as it's the only time the whole family get together and after COVID restrictions I think we need something to look forward to. I'm now decided that I won't push for my reversal until the new year. God luck with your operation, let us know how you get on :x:

1234annie

Hiya, I'm 40 and I've had my ileostomy 20 months after I had recurrance. I have decided right now I don't want anymore surgery. I've not even been offered a reversal as I had my op at the height of covid in March 2020. The last time I enquired I was categorically told they weren't doing any reversals at present and to ask at my next review which is this month. I'm scared my bowel will be lazy after 20 months and I'll be incontinence. I'm also worried that if there are any dormant cancer cells will an op kick things off 🤷‍♂️ I don't know!
Annie :x: :x:

tigerduff

Hello Annie
Hopefully, you should be able to get the correct advice about the risks of the reversal after 20 months. You are still young so a lot depends on how you have adapted to life with the bag and if you are comfortable keeping it moving forward.
I am considerably older so I have a different perspective but I also have the same concerns about the incontinence in the short and long term and the impact this has on your day to day life.
All the best.
Tigerduff
:x:

JEBL
Quote from @louise28:
Hi @ElEff best of luck. I think it just shlws so much of tbis kind of thing cant be reduced to stats or numbers. I am young and relativdly active and fit. I think this helped and i was cautious about food at first.

It's reassuring you scored high but haven't had too many issues.
When you say you were cautious about food at first - did you follow any particular advice? Not sure what is best for hubby to eats in the early days? I've asked for a dietitian appointment but haven't heard back and based on past experience I am not expecting to!

louise28

hi @JEBL i was told by the surgeon after the op when he came to see me. They did mention it at pre-op too I think. I didn't have to do bowel prep before op, only fast from midnight so I wasn't too hungry right afterwards. I was given jelly and icecream for first day or two until my bowel started to produce wind....then as the wind became more regular (meaning it hand't gone to sleep) i was allowed broth and possibly a piece of toast. By the third day the surgeon said I could have chicken and small amounts of veg or salad...... When I got out of hospital after 3 nights I kept up the same for about 2 weeks, very low fibre.... I had tiny portions of weetabix each day because I felt I was getting more bunged up and having to strain! But generally i just ate white bread, egg, chicken, salmon and tiny bits of polenta, rice etc. Those two weeks after being discharged were the hardest in that I found i would go a lot and sometimes only tiny poos. Or I had quite bad diarreah some nights and that was just exhausting so lots of energy drinks and i had a few squares of white chocolate.... and some jellies, sweets etc

In all honesty, i was only the first few weeks that were hard. I was also tired from surgery I think and the wound was open at first so I had to be careful. I gradually added things like apple and sometimes i had smoothies too, small bits of veg and a side salad here and there. It's hard to know how your body will react but I'm about 9 months on and doing fine. In all honesty I dont go mad with salads or muesli, things I used to love, but I find I can eat a fair bit of veg, side salads, and weetabix etc, fruit, without any major issues. I've travelled a few times now and also dont find i have to adjust much for days out either. No issues so far!

:x::x:

JEBL

Thank you!

I am glad to hear you are managing so well.
Not being able to eat salads & fruit and veg just feels all wrong - I am dreading it 😢 and it’s not even my body!

Quote from @louise28:
hi @JEBL i was told by the surgeon after the op when he came to see me. They did mention it at pre-op too I think. I didn't have to do bowel prep before op, only fast from midnight so I wasn't too hungry right afterwards. I was given jelly and icecream for first day or two until my bowel started to produce wind....then as the wind became more regular (meaning it hand't gone to sleep) i was allowed broth and possibly a piece of toast. By the third day the surgeon said I could have chicken and small amounts of veg or salad...... When I got out of hospital after 3 nights I kept up the same for about 2 weeks, very low fibre.... I had tiny portions of weetabix each day because I felt I was getting more bunged up and having to strain! But generally i just ate white bread, egg, chicken, salmon and tiny bits of polenta, rice etc. Those two weeks after being discharged were the hardest in that I found i would go a lot and sometimes only tiny poos. Or I had quite bad diarreah some nights and that was just exhausting so lots of energy drinks and i had a few squares of white chocolate.... and some jellies, sweets etc

In all honesty, i was only the first few weeks that were hard. I was also tired from surgery I think and the wound was open at first so I had to be careful. I gradually added things like apple and sometimes i had smoothies too, small bits of veg and a side salad here and there. It's hard to know how your body will react but I'm about 9 months on and doing fine. In all honesty I dont go mad with salads or muesli, things I used to love, but I find I can eat a fair bit of veg, side salads, and weetabix etc, fruit, without any major issues. I've travelled a few times now and also dont find i have to adjust much for days out either. No issues so far!

louise28

Hi @JEBL you can eat all those things, honestly. It was really just the first few weeks (barely 2) and I had the odd bit of carrot and broccoli during that time, increasing steadily for the rest of it. It's really a short period and it's best to let the bowel recover. :x:

JEBL

@louise28 thank you! I need to get off google!

Mark McC

Hi

I’m a newbie as well and finding this a great forum to appreciate that I’m not alone in my situation.

I had a lower anterior resection of the bowel in March 2021, had a stoma bag for eight months before an ileostomy reversal late November 2021. I know it’s only early days for me so I am erratic in the motions department, so am still finding my way with planning ahead for excursions, and tactical use of loperamide, although I don’t want to take it daily. I know things will take a while to settle down but that it’s unlikely to be as it was before, and that at times is difficult to really accept. However, I think it will become more manageable once my mindset fully adjusts and am glad I had the stoma reversed.

JC36

Hi @Mark McC welcome to the forum. I also had my reversal in November. I feel your pain. I seem to be all or nothing. I won’t go for two days and then it’s constant. I’m trying to live my best life on my poo free days but I know poo-mageddon is just around the corner 🙈

Mark McC

@JC36 couldn’t agree more. Keeping busy keeps my mind off it. Stay strong though I’m sure we’ll get through this.

Jane39

Welcome @Mark McC
Great to hear that you are finding the forum helpful.
Best Wishes
Jane :x:

jellyhead

Hello, yes I had my reversal August this year after having an ileostmy because of bowel cancer, I had a stoma for two years ! Hated every day ! Had numerous problems blockages ,leaks ending up in A&E several times! Reversal the best thing I've ever done! So pleased to get rid of bag! Also had a hernia that was sooooo
painfull! Very had work for the first couple of months but I've never regretted having the reversal! Yes motions are a bit erratic sometimes but so worth having it done! Lesley :x:

Siona

Hi @Mark McC just wanted to welcome you to the forum. It certainly helps to find we are not alone it this. It gets better over time :x::x:

kitti

Hi, I had my ileostomy over 3 years, I had made peace with it and it didn't stop me but my surgeon wanted to reverse me. I actually wanted a permenant colostomy but it was agreed we would try reversal first, so had my reversal in Aug 2021 and I'm still struggling. It's likely I have LARS syndrome but never the less Im giving it a year to hopefully settle to the best it can be. I did not only have LARS surgery but pelvic radio too which is a risk factor for LARS syndrome. My team suspected my recovery would be tough and it has been, I find the unpredictable urgency difficult at best and impossible at worst. I am however starting with the use of meds and to have a few toilet free hours, it's amazing and what I'm aiming to expand on. :x:

Lucy118

@kitti, you’ve really had a tough time but I’m so very pleased that things are at last improving for you. I didn’t have it nearly as bad as you, but I would say that mine has continued to improve over 14 months, so I’m sure yours will continue to improve too :x::x::x:

jax

Hi @tigerduff,

I had a LAR in Feb last year with almost all of my rectum removed. Temporary illeostomy and a reversal in May … so 3 months later. I was very lucky it was done so quickly.

I did lots of pelvic floor exercises in the weeks before hand and still do them. Initially Bowel movements were erratic. I didn’t go out without a nappy on. And was very careful to continue a low residue diet. But I have gradually introduced foods … sometimes with more success than others… going back to them a few weeks later and finding a better effect.

I am now 9 months post reversal and life is very manageable. I eat pretty much whatever I want. I even had some very ripe French cheeses recently. joy! I tend to have most Bowel movements in the evening which doesn’t bother me. I only take laporemide if I am going out for a dinner, away for the weekend or travelling long distances. I do have some pain occasionally … a sort of cramping in my Bowel low down but it’s manageable.

I do not miss that bag at all!! And so glad I had the reversal.

I suggested to my husband that we shoukd try and go to Japan after all.

Life is good.