Life with bowel cancer

bronwenmegan

Cold feet about a reversal!

Hi all, this is my first post and I’ve only decided to write one as I’m having a case of cold feet about a reversal on my temporary ileostomy at the end of this month.

I had an op back in December 2016 and most of my rectum was removed. My lovely surgeon did put in a bit of extra storage space and I was extremely fortunate not to need chemo or radiotherapy. At the time I was so pleased that I did have a temporary ileostomy and that one day I would have a full system.

I felt in the first 6 months that my stomach was adjusting to its shortened pipe work and after a year I was more like my old self. Now I’m almost living as I was before, lifting heavier things in my garden and Allotment, obviously being sensible! I am careful about what I eat, but though more boring, it’s not impossible.

I suppose I would just like to know what are the positives of being reconnected to the rest of my bowel, as some of the things that I’ve read, do make me have a little panic!

Thanks for reading my post, Sue

bronwenmegan
Quote from @Baxter2:
Hi @bronwenmegan and a very warm welcome to the forum!

I don't have experience of a stoma so I'm not in a position to offer any insight or advice one way or another. I'm sure there will be others along soon to say hello and share their thoughts on this.

Sending all my very best wishes,

K💙💜💛💚❤️

Thanks @Baxter2 for your best wishes :x:

bronwenmegan
Quote from @Gingerbird:
I had my stoma reversed after a year, and now I have it back after a recurrence two years later. It was the bit I hated the most about my second op, quite apart from the 50 staples down my front....
I would certainly have it reversed - after an initial spell of dashing to the loo at a moment's notice, which I just considered to be par for the course and part of the recovery, I started to feel 'normal' again.... I guess for me, the stoma is a constant reminder that something isn't, or hasn't been, right with me, so I wanted it gone asap....
Saying that, it is entirely up to you, and there are many many people who have to live with a permanent stoma, so its obviously entirely do-able!

Many thanks @Gingerbird for letting me know about your experience, so hard that you had it back again and it must be something that we all fear will happen to us. I hope that you are making a speedy recovery. You have given me hope about a reversal though and I hope that when you and your 50 staples grow to love each other, you can get another reversal :x::x:

springer michelle

I am the same as lizalou. I had a reversal and everythings as good as it used to be. And the op is really not bad.

Chas

Hello @bronwenmegan I had my reversal done 12 months ago, operation was simpler than first and recovery quicker. My year has been total recovery time, first few weeks difficult but then became much more easy. Now I don’t have many problems, use loperamide when I have to. Reversal best thing for me life is great and free. Hugs :x::x:

Seashells

I'm due to have a reversal soon @bronwenmegan and I totally understand your cold feet. What if I have no or little control? what if I have a recurrence which means I have to have another stoma? I worry but at the same time I find the bag is a constant reminder I have cancer and my stoma is right on my waist which means I can't wear any of my usual clothes. This has been the biggest pain. I've bought extra long tops to hide the bag but spend all my time in elasticated waist trousers or leggings which just feel a bit scruffy. That alone is enough to make me opt for the reversal. Hope yours goes well and will look forward to hearing how you get on. :x:

HappyAtom

@bronwenmegan - another successful reversal here. Although I got used to the bag, it was awesome to be able to sleep without fear of squishing it or leaking, my sleep quality improved dramatically once it had gone. I still occasionally got sore, despite my careful ministrations. Spurty Gerty misbehaved when I needed her to be quiet - during bag changes and farting during important meetings. My op was straightforward, I went on a short holiday to the Gold Coast around three weeks after. I only had two days of “not trusting a fart”, otherwise normal service has been resumed.

There is a Facebook group but to be honest I would stay out of it - most people there have horror stories but most of those have other co-morbidities, you’ll get a much more balanced view here, people stick around to share positive stories.

sweetcheeks

Morning @bronwenmegan , Geoff’s 6 months post reversal, feel free to read our posts , he had his reversal as day surgery,
Geoff hated his stoma , as it was a constant reminder he had been ill , no matter how difficult it has been , he says he has not regretted his decision ( apart from the very first few days!!! But I won’t remind him or repeat his comments 😊😊)
Good luck
Tracey
:x::x::x:

bronwenmegan
Quote from @springer michelle:
I am the same as lizalou. I had a reversal and everythings as good as it used to be. And the op is really not bad.

Thanks for letting me know about your successful reversal, sorry I didn’t reply sooner, had a birthday last week and thought I’d try and forget about it all! I’m having it done on the first of June :x::x:

bronwenmegan
Quote from @Chas:
Hello @bronwenmegan I had my reversal done 12 months ago, operation was simpler than first and recovery quicker. My year has been total recovery time, first few weeks difficult but then became much more easy. Now I don’t have many problems, use loperamide when I have to. Reversal best thing for me life is great and free. Hugs

Thanks @Chas, you are giving me lots of hope for the future, not looking forward to it, but I will stay positive in the knowledge that it will all hopefully be good for me too :x::x:

bronwenmegan
Quote from @Seashells:
I'm due to have a reversal soon @bronwenmegan and I totally understand your cold feet. What if I have no or little control? what if I have a recurrence which means I have to have another stoma? I worry but at the same time I find the bag is a constant reminder I have cancer and my stoma is right on my waist which means I can't wear any of my usual clothes. This has been the biggest pain. I've bought extra long tops to hide the bag but spend all my time in elasticated waist trousers or leggings which just feel a bit scruffy. That alone is enough to make me opt for the reversal. Hope yours goes well and will look forward to hearing how you get on.

Hi @Seashells, I am going for it, as long as there’s a bed I’m booked to have it done on the 1st June! I think I’m feeling much more positive as everyone here has been so kind in reassuring me. Don’t know if my stoma is lower down than yours, but I’ve found M&S Roma fit jeans have been quite comfortable, I picked them up on EBay and opted for a bigger size. I’ll let you know how I get on, hopefully it will be okay :x::x:

bronwenmegan
Quote from @HappyAtom:
@bronwenmegan - another successful reversal here. Although I got used to the bag, it was awesome to be able to sleep without fear of squishing it or leaking, my sleep quality improved dramatically once it had gone. I still occasionally got sore, despite my careful ministrations. Spurty Gerty misbehaved when I needed her to be quiet - during bag changes and farting during important meetings. My op was straightforward, I went on a short holiday to the Gold Coast around three weeks after. I only had two days of “not trusting a fart”, otherwise normal service has been resumed.

There is a Facebook group but to be honest I would stay out of it - most people there have horror stories but most of those have other co-morbidities, you’ll get a much more balanced view here, people stick around to share positive stories.

Many thanks @HappyAtom for your thoughts on my plight! I will avoid the Facebook group, as I know what you mean and there’s definitely good vibes from the lovely people who have replied to me here. I am feeling in a better place about the reversal thing, though I’m sure that next week before I go in, I’ll probably be a bit wobbly again! All that you said about Spurty Gerty has been true of Gladys too and hopefully she’ll be happier back where she belongs :x::x:

bronwenmegan
Quote from @sweetcheeks:
Morning @bronwenmegan , Geoff’s 6 months post reversal, feel free to read our posts , he had his reversal as day surgery,
Geoff hated his stoma , as it was a constant reminder he had been ill , no matter how difficult it has been , he says he has not regretted his decision ( apart from the very first few days!!! But I won’t remind him or repeat his comments 😊😊)
Good luck
Tracey

Thanks @sweetcheeks , so glad that Geoff is happy with his reversal and I will bear in mind that it could be tough going in the beginning. I think you and everyone have been great sharing your experiences and hopefully my reversal will also be successful too :x::x:

HappyAtom

@bronwenmegan good luck for the 1June and hope you have a speedy recovery. My only reminder is a $2 (about the size of what I remember a 10p to be 😀) sized purple scar where spurty was. As my bikini days are over, that’s no great hardship.

bronwenmegan

Thank you @HappyAtom , my days of bikini wearing has long gone too 😂. As the day draws nearer, I’m getting a bit wobbly, but I’m at the point that I just want it over! I know I’m being selfish but I wouldn’t mind if the weather changed, fancy being in hospital when it’s sunny 😎

KatieR

My mind is boggled at what part of this conversation has a Facebook page. ? ?
Cath :x::x:

Terrish

@bronwenmegan - I had my reversal in 2016 and haven't ever regretted it for one second. First few weeks took some adjusting, but I've never had an accident, never had loss of control and love not having a sodding stoma :)

I am careful with my diet - I decided to go gluten free/low which has helped my control - I suspect I had IBS for years. Two scrambled eggs for breakfast work for me. Just been camping at the beach for a long weekend, been skiing, and do everything as before.

bronwenmegan

Many thanks @Terrish , it’s great to hear that you also had a successful reversal. Everyone who has replied to me has been very positive and I think I’m feeling braver now! Only one day of freedom before I go in on Thursday ( as long as there’s a bed) Then just like Humpty I get put back together again on Friday. Like you I had bouts of IBS when I was working and hopefully less stress now might help, but I will be careful with my diet. Once again thanks for your advice 🙂

Terrish

Good luck @bronwenmegan - I think people who have issues afterwards tend to need help and post a lot. People who don't have a problem tend to go off and live their lives happily ever after!

It feels rather unBritish to shout from the rooftops that my stoma reversal works perfectly well thank you world, but actually it does.

Don't overeat the first few days - there was a surprising lack of coordination between the catering dept and the surgeon when I had mine. I chose an omelette from he menu and was completely bunged up for 3 days :)

Then I tried lactulose to remedy that, which had too drastic an effect and was my only accident of the entire procedure. So take it easy, introduce foods gradually, be prepared for your bowels to go on strike initially (what, work again? thought we'd retired!) and yes you will have a few undignified dashes to the loo, but you will find what works for you and what doesn't.

I noticed a sudden improvement after 6 months, which is what they say happens. Before then I would go to the loo before going anywhere as a just in case, after that I found I rarely bother. And of course come on here and ask away.

bronwenmegan

Well I’m back to near normal plumbing! The first 10 days was tricky, but then I remembered that I had wondered before my big op if I was lactose intolerant! Guess what, i am!

Thank you @Terrish for telling me about the eggs for breakfast, every time I cook myself eggs you are in my thoughts 🙂

Now when I go to my Allotment I can pick my beans to eat, not just give away. Am still a little cautious about what I eat and am introducing different foods all the time, it’s not as if I could eat and drink everything before my op! I just think that maybe I understand my digestive system a little better after these 18 months.

So @Seashells it was well worth doing, I’m not saying that I’m having bm’s like I had before my rectum was removed, but it is so much better than I was expecting and I’m still excited to be able to sit on the toilet for a reason!

Tell Geoff @sweetcheeks that during the first 10 days I bore in mind that things were going to improve and it kept me on track.

And yes @HappyAtom , it’s so nice to go to bed and not fear a leak!

That’s my update seven weeks later, so glad that I posted my worries on here, you’ve all helped me loads :x::x: