Has anybody regretted having a reversal?

Hi Martina

I wanted to offer you some moral support as I’m on the list for a reversal I can’t give you any advice on managing your issues. I’m sure some others will give you their support and advice. I’m sorry your operation has caused so much discomfort 
sending you a virtual hug 

Hi Martina3,

So sorry to hear your struggling and feeling so down.

I’m actually due to have my reversal tomorrow and an expecting a challenging time for a while. I few weeks ago I asked for advice on the forum re reversal and Karen062 posted this information, I don’t know if you’ve seen it, but hope it can help you a little.

(community.bowelcanceruk.org.uk/.../22519-ask-the-expert-video-q-a-regaining-bowel-control)

community.macmillan.org.uk/.../part-2---the-faqs-of-having-a-stoma-reversal

Hope things improve soon for you.
Best wishes,
Net77x

Net 77

Good luck with your reversal tomorrow. Do you have to prep before the op. I’m an Ileostomy wasn’t sure that any kind of prep would stop that. She’s a volcano 

Hope all goes well 

Net77. Good luck with your reversal tomorrow. Keep us posted. 
Sending you a hug x

Hi Ann,

Thank you so much for your good wishes.

No prep, so saved from the dreaded Moviprep (another benefit to having an ileostomy). I can eat up to 6 hours before operation & advised to drink a glass of water at 6:30am (have to be in for 7:30am, so early night for me).  Just want to get on with it now.

Will keep you posted of trials and tribulations

Thanks again.

Take Care

Net x

Aw. Good Luck. I will watch your progress with interest. I’m six months in and six months to go. 
Wishing all the best 

Hi, I had the same problem after my reversal.  None of the healthcare staff at the hospital would do anything to help. Eventually a stoma nurse told me about colonic irrigation.  Eventually I was precribed the kit.  Irrigating every evening isn't ideal but it's better than the pain and distress.  Some consultants prefer to wait a while before prescribing.   In my case it's diagnosed as Lower Anterior Resection Syndrome. 

Hi Lilith

I have been told that I am a very likely candidate for LARS and that I could not have the reversal. They were really informative and offered support and aftercare. Though I realise that the NHS are stretched. I want to try. They’ve said that they can reform a stoma if I can’t manage so I’ll give it a go. But I am very happy to wait. 

Hope you are having more freedom now

Hi Martina3 . I’m so sorry your struggling so much . I didn’t have a stoma but I do struggle with my bowel habits a lot . Lots of people in a Facebook group I’m in on have had reversals . A lot talk about irrigation really helps . Psyllium husk powder helps me a lot . It gives you more formed stools and stops you going so often . I was going around 7 times a day after my resection . A year and a half out and I’m down to 2 to 3 times a day . I really hope you find some relief , 

take care , Nelly X

Dear Martina3

I hope my story may help encourage you. My reversal was on 12 December 2020, and was something of an emergency as I’d suffered from severe prolapses. So it was something of Hobson’s choice. In the immediate aftermath, I was full of regret and experiences multiple daily calls to the throne room. 

Although it’s still not as regular as I’d prefer, things have settled down. I’d been told to expect improvement for at least 18 months, and possibly over two years, and the reassurance that there are lots of options should problems continue. Initially, I was taking large doses of Loperamide to gain some sort of control. And I’m definitely a LARS patient with just a few centimetres of rectum in place, so tried to trust, hard as it was at the time.

There was plenty of trial and error, different medications and doses. The current relative stability has been achieved by this regime. Pelvic floor exercises. One loperamide tablet (2mg) at night. One tablet of Ondansetron (4mg) every third day - down from one daily. One tablet of Nortriptyline (10mg) at night. One sachet of Normacol (7mg) after breakfast, and another after lunch. And a low fibre diet, avoiding the most insoluble fibres especially. If I do get a run of motions, I will take perhaps 3 loperamides to slow things down.   

Although Ondansetron is an anti emetic, it also acts as a constipation aid, alongside the loperamide. And the Normacol balances it by keeping up some measure of regularity. The Nortriptyline reduces phantom urges. 

Although I can go up to 4 days without a motion, a more normal number of calls to nature is 4 and never more than 8 which is loads better. And I can now say that I’m so grateful for the reversal, something I once never thought could be the case! And surprise needs to go are very much rarer - I can hold off most urges for as long as 60 minutes.

I hope your stoma nurses will be able you work out a package that can help you just as much. Please be patient. It will get better.