Decision making

Hi Hay and welcome to the group.

This must be a difficult decision for you, and I don’t envy you having to make it. I had no choice in having a permanent colostomy, so had no decision to make, but looking back if I’d had a choice to have a reversal I personally wouldn’t have done it. I’ve had my colostomy for more than 4 years and am very used to it, (plus I also have a urostomy so would still have that regardless) and wouldn’t want more surgery but I don’t have that option, so it’s not really relevant!

Ive seen in the group over time occasionally people have regretted the reversal, but by far more common are those who say they don’t regret it at all. I hope people who have made the decision for a temporary stoma will join in and describe their experiences of being back to normal life, and I’ll tag my friend Artsie who has been through all of this and might be able to help.

Sarah xx

Thank you Sarah x

Hello Hay,

I had rectal cancer and a loop ileostomy was performed prior to chemoradiotherapy. Following surgery to remove the cancer I woke to find I also had a colostomy. The surgeon had been unable to re-connect to my rectum, which is now redundant. The ileostomy does all the work and the colostomy allows a small quantity of mucus to discharge over 48 hours. I declined the offer of a ileostomy reversal because it wouldn't achieve much in my case and I have developed a routine for changing the pouches every 48 hours. In the early days it took a few weeks to establish which ostomy products gave the best results (leakage is probably the greatest fear) and I have not had a problem since. Just getting the confidence to go out socially is a major step and the support of the stoma nurses is absolutely essential with regard to getting your GP onside to prescribe exactly what you need. My GP practice is very supportive and the ostomy manufacturer/supplier is remarkable efficient with regard to ordering and delivery to my door. You should find that life will return to near-normal but, with a stoma, you should avoid straining the abdomen because the muscles have been weakened. Food and drink don't present a problem but I do avoid foods that are indigestible, e.g. nuts, tomato skins and undercooked vegetables. The choice is yours and if you have any queries or concerns just ask on these pages.

Dulac

Thank you Dulac

Hi Hay Thank you Sarah for tagging me. Sorry for late response 

Congrats on your amazing response to your treatment so far 

Well my diagnosis and treatment plan floored me and all I could concentrate on was getting the cancer in the bin. I was also close to blocking. So I gave permission for everything a colostomy or temporary illeostomy. They said chemo and radiotherapy wasn’t right for me 

I had a Lower Anterior Resection 
I woke with an Ileostomy and managed it well after a few weeks I stayed away, ate out ect
Later once my join was fit for reversal I was in a dilemma. I had a great quality of life even with the illostomy needing frequent emptying. Colostomy and ileostomy’s are different. My Ileostomy was emptied six times a day however it was no problem as I needed a wee anyway and once you’re in a system of sorting it life is great 

Thirteen months later I was offered a reversal and I thought long and hard. I came to the decision that if I didn’t try I wouldn’t know 

So I was reconnected (I prefer that description of the procedure as reversal sounds as if you’re going back to where you were) Sep 22.

I now have a new working rectum although it’s obviously smaller and has less storage

Twas a little demanding for a couple of weeks but now I’m okay 

I asked lots of questions about LARS and my team said that I would have support and I could have a colostomy formed if I found it unmanageable 

I hope this helps you  

best wishes 

Thank you Ann. X

Thank you Ann

Hi Hay

I had a 7cm tumour diagnosed 2 years ago that responded well to chemo radiation. I had my LAR operation in Nov 22 which went really well and I had an ileostomy. Although the ileostomy was an irritation, I found it didn't stop me doing most things but I was glad to have my reversal 3 months ago. All is going well so far for me and I wish you lots of luck with your journey. There's no reason why you can't be active, stoma or not xx