Hello!

I am only six weeks since operation however my surgeon told me in the follow up that although six months was the initial time given for a reversal with the back log and the fact that I was rushed through I could be waiting for up to a year. There were patients like me that would queue jump which I totally agreed with as I did have everything done speedily.  He said that he’d want to do it before a year as it’s better for the Bowel. So I was thinking six months maximum but now accept twelve.months.  I’m not sure of your circumstances but thought this may be worth you taking into your thought process. Best wishes  Artsie 

Thanks Artsie. I will wait for as long as I have to, but my dilemma is should I have the op at all. I really don’t want to have it if the success rate is not good. 

Yes, I’ve heard that it can be challenging to get full functioning back, trouble is though I’m not sure how many positive accounts get written up.
Maybe more research and ask the professionals that know the rate of success. My surgeon has been completely honest with my treatment and outcomes before I had my ileostomy and has been straight talking about the reversal.

Maybe more conversations with your nurse and surgeon before making a final decision.

Good luck 

Best wishes

Artsie

Thanks again Artsie. 

Hi Emaggie,

I had a temporary ileostomy for a year before having the reversal a year ago.  It was something I wanted to have done but when the time came and I read the stories of people who had problems I wondered if I was going from something manageable to something worse.

It takes time to settle down but, for me, it has been worth it. I was out and about after a couple of weeks and for some months now I have been going to the loo morning and evening and, so far, have not been caught short anywhere.

I think that how you respond can sometimes be dictated by how much of your rectum you have left. I had a Lower Anterior Resection so some of the rectum had gone, where was your tumour?

The operation itself is fairly quick and I was only in for two nights. I am very glad I had it done, I wouldn't want to go back to a bag again.

Whatever you decide, I wish you well for the future,  John

Hi John.

How good to hear something positive! My tumour was in the right side of my large bowel, so I guess about half of it has now gone. I originally had a straight forward join but after two weeks I had excruciating pain and ended up with a loop ileostomy.

 If all is well after the X-ray on the 30th, I think I will go ahead with the reversal and hope for the best! 
Best wishes to you, and thank you for the reply.

Hi Emaggie,

I would have thought that where your tumour was you should make a very good recovery and get back to pre op normal, the people who seem to have problems are the ones with little rectum left.

Best of luck, John

Hi Emaggie, I had an ileostomy many years ago (like about 40!) as a result of acute Chron's Disease. I had all bar about 5 inches of my large bowel removed and I was able to have a reversal 12 months later. I had very loose bowel movements thereafter and needed the loo about 5 times a day. It became a way of life. I never had accidents, though did have very occasional 'near misses'. As I was only 19 at the time of the first op, I was way happier with managing these consequences than keeping the ileostomy, which I hated.

Ironically, perhaps, I developed cancer in the fistula caused be repeated perianal abscesses, which I think were related to the Chron's, and I now have an ileostomy again! Hoy ho!

I have no regrets about having the reversal back then. If I had a choice, I'd probably opt for it again. Regrettably, I don't this time.

All I would advise is that you get all the information you can and ask as many questions about the pros and cons that you can think of so that you can make a turly informed decision.

Good luck

Osboz

Hi Ozboz and thank you for your reply. It really helps to have other opinions. I am speaking to the nurse tomorrow and will write down the questions I need to ask.
I am sorry to hear about your new ileostomy. I am sure your previous experience will stand you in good stead! 
Good luck to you too. 

Hi Emaggie. I had my stoma in nov 16 after a low anterior resection and reversed in mar 18 after chemo. The first few months can be a little erratic but mine settled down quite quickly although they say that it can take up to 2 years. The surgeon told me that things would never go back to my old normal but I would get used to a new normal which would be similar to how my stoma worked - which was evenings for me. I use loperamide on a regular basis but everyone is different and although you might be going to the toilet several times a day initially, the rectum can gradually increase and your ‘storage’ levels will improve.

I would really recommend doing the sphincter exercises on pages 15 and 16 of this booklet as when the urge comes it can be better to try and hold it in rather than making a dash for the toilet!

bowelcancerorguk.s3.amazonaws.com/.../RegainingBowelControl_BowelCancerUK.pdf

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

Its a pretty small op and my surgeon liked to squeeze it in between the biggies. I would recommend a little grab bag for while you’re in hospital with spare knickers, wipes, cream and pads - the nurses used to laugh at me speed walking to the toilet with my bright orange sainsburys bag! My bottom got very sore in the early days so I used to use the big dry wipes that they give you in hospital then put them in a poo bag in the contaminated waste bin. I ordered some off Amazon and have them at home for emergencies - unfortunately not great for the environment but a lot kinder to your bottom in the early days.

Any regrets? No none whatsoever. Hope the meeting with the nurse goes well

Take care

Karen x