My world turned upside down

Hi jessamie1  What an awful time you've had ! I had a tumour removed from my rectum in December, I was warned beforehand that total removal of the rectum was possible if there was not enough 'good' colon to rejoin,but that wasn't done in the end. I have a stoma, which may or may not be temporary.. while in hospital, the chap in the bed opposite had this entire back passage removed and he seemed to find the whole process and recovery fairly tolerable.He was up and about within days and released, way before I was. I think the very thought of all the rear passage being removed sounds way more gruesome than what will be the reality. Best of luck x 

Hi, thanks for reply . The whole process is a lot to take in and trying to get my head around it all is so hard. I have another two weeks or so yet and the waiting is a nightmare. Any advice would be so helpful, I know everybody has a different story and experience but god this is doing my head in. I have a MRI scan tonight as I have a lesion on my liver so they have to check that out as well. It’s a nightmare it really is 

Debbie x  

Hi, 

Bless you,  I know that scary feeling. Mine was diagnosed 3rd August 2023, rectal cancer. I did the chemo and then radiothérapie and last April had the op to remove the tumor and a temporary stoma put in. It was very close to the sphincter,  so we weren't sure if it was going to be a permanent stoma!!! Which I had for 9 months and I copped with life really well. Had to buy new clothes to fit around it at the beginning  which was fun. You do learn to live with it, I could do more then than I can after the reversal, which is only 3 months ago. And I know this will get better but have said to my surgeon would I be better off with a permanent stoma. His reply is 'that's the last resort'.

Hope this makes sense to you, as I'm not the best person to articulate. 

Our moto with friends and family is, 'onwards and upwards' we really do have to be positive through this horrendous time.

Take care, Suzi

Hiya - so sorry to hear about your husband - and like you I’ve had the same diagnosis and I’m in next Monday for my op and today I’m starting to wobble - like you say life changing and huge op… I’m reaching out to reassure you that you are not alone going through this and I’m literally in same boat around same time….like you say it’s a lot to take on board and lots going through worse - sending hugs 

That’s interesting to hear as I’ve been going over this in my head ie last resort for permanent stoma as  I’m going straight to that op Monday as tumour early stages but so low they said only option is permanent stoma and everything out  and advised against the radiotherapy option - you say you were better with the stoma than after reversal ? Or am I reading that wrong 

Only had the reversal 12 weeks ago, so really just starting to see a small improvement,  but my surgeon keeps on telling me it can take up to 6 months and for some a year for things to go back to normal. I have asked him if a permanent stoma would be better and he says, as the last resort. But I could cope with the stoma and did for 9 months, just have to find out what diet suits you. So basically I am working through the reversal one day at a time, which can be quite challenging some days!!!

Hope all goes well for you, all is frightening but you will get used to the stoma.

Hope this helps, Suzi

Hi Suzi, I had a very low tumour in the rectum removed in Dec 24 and have a temporary stoma on the right side. It is planned sometime to have my operation reversed and stoma removed. I have heard a good few stories of people like me who have had the reversal then it's gone quite poorly, and they've asked to go back to a stoma! So very interested in how you are getting on, getting used to being 'normal' again!x

Hiya, some days are easier than others, have to stick to a strict diet to begin with, getting a little easier now, after 3 months. My doctor keeps on saying it can take up to a year, so a little more time to go. Yes it is hard and I really feel I can't go far from home, incase I need the loo. On the other hand a friend of mine had nearly exactly the same op as me and same time and he's doing really well. So everyone is different. Whether true or not, apparently men have a bigger rectum and can hold more poo than women. Also all the nerves that were cut, all take time to connect again. What an amazing machine we are. Excersise and diet are very important to our recovery. 

Hope I have been helpful, no it's not easy but I seriously try and stay positive. 

Suzi

Hi, what an awful time you have had, life can be so unfair and cruel. Am so sorry you are now dealing with this. I can totally see how daunted you must feel. My cancer was in the ascending colon so a different operation but there will be lots of people here with advice and support. Hope you get good results from the MRI, it is so just so horrible, the waiting for scans, etc. xx

Had results of scans and no spread to liver. Had confirmation on operation next Wednesday, count down now , getting nervous and feeling sick at thought of what it all entails  x