Hello everyone, I am hoping for some advice. I am booked to have my ileostomy reversed next week, it will be 11 months since my debulking op. There doesn't seem to be much in the way of advice other than to expect to have diarrhoea initially and to stick with the low fibre diet to start with, introducing other things slowly. Have any of you been through this? Do you have any advice for me? How long was it before you were eating normally, and did your bowels ever get back to "normal"?
I have had to halt my Niraparib tablets for 2 weeks before the op and it will be a minimum of 4 weeks afterwards, maybe longer if the wound is not healing well. I'm very nervous about being without this maintenance drug - has anyone had breaks from it and has it made any difference to their outcomes?
Many thanks for any insight you can give me.
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LovemyJackRussell
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Thank you for your post. Hopefully our members will be along soon to share their experiences. I just wanted to let you know that Colostomy UK have a booklet about reversals which you can read here: colostomyuk.org/wp-content/...
On this page they also mention that they have volunteers with experiences of reversals, who you can speak to: colostomyuk.org/information...
I hope this is useful. If there is anything we can help with please do get in touch, either by direct message through this forum, email support@ovacome.org.uk or call 0800 008 7054 Monday-Friday 10am-5pm.
Dear AnnaThank you for this. I had seen the booklet, but had missed that they can put you in touch with volunteers who have had the reversal (there is one story in the booklet, but a very different scenario from having OC) so I shall have a look at that section of their website.
I had my ileostomy reversed 8 months after debulking in 2021. My experience was really good. I had a2 night stay in hospital to ensure my bowels were working before I went home. I was allowed to continue taking letrozole throughout. I have a low fibre diet anyway so that wasn’t a problem, healing was good and recovery was about 6 weeks until I began to feel normal and I’ve had no problems since. I really hope you have a positive experience and send best wishes. Linda x
I had my ileostomy reversed approx 20 months affer initial surgery, so I was desperate to get back to fibrous foods! The surgery was fine, but make sure you get decent pain meds on discharge as I was just sent home with paracetamol, which didn't help with the initial pain of surgery. (Mine was another full incision, but I do know keyhole surgery is sometimes done).
My initial immediate diet was soups and easily digested foods, to give the bowel chance to heal. Can't remember when I returned to a full fibre diet, but it was weeks rather than months. You may already be eating smaller portions more frequently due to the ileostomy, and that will also help post surgery as your colon recovers. I seem to remember that bananas were good for snacks and helping to firm things up.
Unrelated to the surgery, I had a treatment break from Niraparib for a couple of weeks a couple of times without issue and I'm now coming up to 4 years NED after my 1st recurrence.
Thank you for this, Sally, it is very helpful to hear your experiences. I'm very pleased to hear that it took weeks rather than months to get back to a full fibre diet - I'm looking forward to having sprouts at Christmas! My surgeon hopes to be able to use the stoma site for the surgery but says he may have to re-open my debulking incision - I will see what I wake up with!
It sounds like your diet and your bowels have pretty much got back to normal?
I'm also very pleased to hear that you are 4 years NED (are you still on Niraparib?) - long may it last x
I was allowed to swap to Rucaparib as I couldn't tolerate Niraparib, but then that gave me other side effects and eventually reduced my kidney function, so I came off PARPs about 18 months ago, and so far, so good. I reckon I took PARPs for about 18 months before I had to discontinue. The PARPs were never an option for me at initial diagnosis in 2015, only available on recurrence in 2020.My bowels and diet settled post reversal, but unfortunately my recurrence also affected my sigmoid, so I ended up with a non reversible colostomy! But I have to admit, it's much less of a bother than the previous ileostomy ever was.
Hoping you get the keyhole op and relish those sprouts at Christmas. 😂
Hi there, I had my debulking operation in January this year and the surgeon also reversed my ileostomy at the same time, it all went really well, I was told to eat carefully to begin with, not too much fibre, they will give you advice and literature on all of this. You will have very loose stools and because you haven’t needed to wipe there for a while you will get a very sore bottom! I actually couldn’t believe how sore!make sure you have some Sudocreme at hand 😉I was told I would always have very loose poo and that has been the case, I control this by taking Loperamide and find 2 each morning and 2 at night keeps things manageable, I basically eat what I like and that includes a decent amount of fibre, in fact the fibre has firmed things up a bit, you will find your way, listen to your body and see what effects different foods have on you, I wasn’t on my immunotherapy so can’t comment but did have to stop Avastin and chemo while things healed, my ileostomy scar took a while to heal but I am so pleased I had it done, I am doing really well NED and markers going down, I live on a narrow boat and get lots of exercise, eat well and am living my life as normal, make sure you continue your pelvic floor exercises!!!Good luck with your operation it’s all going to be fine , if there’s anything specific you’d like to ask feel free, we’re all in this together, lots of love ❤️
Many thanks for all this, Skibot - I have the Sudocrem at the ready! I was wondering how you had a reversal at the same time as your debulking surgery - at what point did you end up with the ileostomy?
It's interesting to hear that you have to take loperamide daily, but also interesting that it is working for you. My main fear is not having control, especially when out and about - have you had any embarrassing moments?
Do you live in one place on your narrow boat or do you move around? We've had a few holidays and I love the slower pace of life and how you see the countryside from a totally different perspective - a great lifestyle for healing. Long may your remain NED x
Hi LJR, my OC was found following emergency surgery (almost died!) for a major bowel obstruction July 2023, one of the draw backs of boat life was getting to see a GP and I became progressively more poorly as we approached Wiltshire, finally got accepted by a fantastic GP and ended up in Great Western Hospital, 2 hours later I was in surgery!! they had to take a major portion of bowel away and give me an ileostomy, I was so lucky to be alive! then found out that it was OC 3c , referred to Imperial College who lead my treatment, started Chemotherapy in the September and then had debulking in January, fantastic team lead by Professor Fotopulis debulked me and reversed my ostomy AMAZING! My boat and family have been a sanctuary and I am very thankful on a daily basis for all the love and care I have been given, we constantly move on the narrow boat but generally on the Kennet and Avon as I need to be near Swindon for my three weekly Bevacizumab infusions which finish in December this year! then I’ll remain on Olaparib until March 2026, we are putting the boat into a marina for 3 months this winter and are going to Italy hopefully skiing, something we had to put off last year because of chemo! We are grabbing life by the scruff of its neck! Hope this hasn’t been too long a reply but serves to show how positive things can turn out, all the best for your operation and a swift recovery ❤️🩹
Not too long an answer at all, what an amazing story! Thank goodness you found a GP when needed, and only good things are said about Prof Fotopulis, you were very lucky. And yes, we have to grab life and make the most of it - we've just done a rail trip through France, Spain, Switzerland, Luxembourg & Belgium (I'm now a master at emptying the bag on a rattling train), and we will be skiing in Switzerland in January - I had to stay behind last year when my husband & offspring went. Enjoy Italy & hopefully the skiing!
I had a stoma (colostomy) fitted during my initial treatment in 2017 due to a bowel perforation. My debulking was in sep 2017 and I had my stoma reversed 2 years later. My bowels were a bit unreliable initially but soon settled. They’ve never been 100% normal since and I still have to be very careful what I eat and generally follow a low fibre diet with some exceptions. I’ve just had another adhesyolosis to remove scar tissue so like you I’m hoping to be able to eat some sprouts and Xmas pudding this year. Am I glad I had it reversed …. Absolutely yes. I manage it and am able to lead an active and fairly normal life albeit a bit diet restricted. I can’t comment on your maintenance drug as back in 2017 they weren’t prescribed until you had a recurrence. I’m wishing you well and hoping that all goes well, it will be over much quicker than you think.
Good morning. I had a colostomy reversal 3 months ago ( day of happiness!!!). In the beginning , first four days, there was a lot of noise and a bit of watery liquid for another day and then small loose poos. One thing I would say is that I tried to eat more normally than the low fibre diet and that helped to solidify things! It takes a while for your anus to get its muscle tone back . Poor thing is in shock. The most important thing for me is never ever let yourself get constipated. It’s terrifying and painful. Lactulose works for me. A little bit every night. Good luck with the operation. It’s not as bad as the original ileostomy and I found it quite cheering because it was a kind of normality and recovery. Best wishes xx
Dear Lilalila - many thanks for this!! I have wondered whether eating more normally is actually the best way to go, it has seemed a bit counter intuitive to stick with low fibre when you want your bowels to wake up - in a normal life we are always told to eat plenty of fibre. We shall see! Yes, getting constipated is a worry (as is not being able to control a runny result). Is Lactulose a drink? My daughter has ulcerative colitis and has daily Laxido Which I tried once but just couldn't get down it was revolting - I'd much rather have a tablet!
I actually had my op this morning and am just allowed sips of water at the moment - I am so looking forward to a healthy diet!!! Thanks again for the very positive answer xxx
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