Tumour removal and having a temporary stoma

Hi 

Yes Oxaliplatin is a nasty drug, I am only just getting my taste back and like I said before still very tired. After doing a simple job need to rest for an hour. Fingers and feet not too bad.

Wishing you all the best with your surgery, hope you get the keyhole or robotic that you want. I feel the same quicker recovery.

Julie

Hello Bathboy

I had robotic surgery (LAR) after 5 weeks of chemo radiation to shrink tumour. I also had a temporary ileostomy. Having the stoma was very manageable and I returned to work 5 weeks after my surgery. I had my ileostomy reversal almost 2 weeks ago and am recovering really well. My bowel is working well already and I have been out for short walks and supermarket.   I was fairly fit and well before each of my surgeries and have followed all the advice and taken the time to recover well.  I feel very fortunate all has gone well so far with lots of support and good pain relief helped!! 

I wish you all the best. 

Catz

Always help and support here and there is a stoma group too…  

My stoma nurses were amazing, I called them anytime I needed help and advice.

Also I wasn’t given a choice of surgeries (not that I can remember) I put all my faith in my consultant and his team as I thought they know what was best for me and I just took all their advice and support and happy with the end result. 

Sorry if I seem a bit laced about it but I didn’t know anyone who had been through it and found googling it was not helpful. 

Hi Catz

Thanks very much for this, just the sort of insight I was hoping for. It's surprisingly difficult to get this sort of relevant first hand info, so it's much appreciated. It give me a lot of confidence that all will ultimately be well. I hope your recovery continues to go well and normal life will begin again soon!

One quick question - how long were you in hospital initially, and once you came out, how long before you were functioning more or less normally with the stoma?

Regards

Richard

Hi Richard…

I had my surgery on the Monday morning and was discharged on the Saturday,  I would have got home the Friday had it not been for my drain which they felt was still filling a little but I was ready to go home Friday. My stoma (ileostomy) worked straight away and the nurses had me up the day after surgery changing it which I’m glad they did as by day 3 I was doing it on my own in hospital and was confident with it all when I was discharged. The stoma nurses are a god send and will not let you go home without you feeling confident and feel supported and everything in place (supplies). I called them whenever I need help or advice and even went to see them when I had a problem and they always had a solution.

 When you go home you will need to take the time to get used to eating or not eating certain things… they gave me a leaflet with foods to eat and avoid. Within a week or so you will know what works for you and you may feel you csn get out and about confidently, I always took spare bags etc with me and not very often did I need to use them but if made me feel safe.

Small steps everyday will lead you to getting back to normal. I went back to work 5 weeks after surgery and i felt well, bit tired but it helped being in a routine again. I had spares at work and it wasn’t till recently (months after surgery) I had a couple of leaks but I was prepared and kinda knew straight away… I think I got a little relaxed but I worked out why they were happening and sorted it.

I’ve been very fortunate I had my surgery already  however I could have managed fine with my ileostomy for longer, it just became a part of me. I had a routine in the morning and it didn’t stop me from doing anything, I walked a lot and socialised, stayed away overnight from home and even went running recently before my reversal. 

Nobody knows you have a stoma bag (unless you tell them). 

Best wishes 

Catz

Did you know that over 120,000 people in the uk have either a temporary or permanent stoma.you really cant tell who they are.just a thought.

Kath

Ps.that was todays piece of useless(or useful) information

It’s astonishing really, isn’t it Kath? I knew this number, but I’ve never looked for the number for people with 2! 

Sarah xx

Hi Catz

This is all really useful, so thanks very much. I now feel I know enough to have a proper talk with the surgeon, and while it may not be something you would wish on anybody, in actual fact it is totally manageable. I'm still waiting for my appointment so very much trying to get on with all my normal activities while I'm chemo-free and feeling good!

Best wishes

Richard

Hi Richard, I had 5 weeks of chemo radiation which appeared to have removed the tumour. Like you I was recommended surgery and decided to have it. I choose robotic for faster recover and less scarring. I had robotic surgery (LAR) with TME. The final pathology was that the tumour had gone but 3 nodes still had cancer (although I had clear margins).

My surgery was on a Saturday and I was out of hospital, feeling great, without pain, the following Thursday. I didn't need to take any of the meds they gave me. The surgery scars are tiny. 

It's six weeks later now. I can eat exactly what I ate before (including steak and chips with a glass of wine!). My wife gives me a fruit smoothie every day, which has lots of seeds. I steer clear of popcorn and sweetcorn - that's it.  Go slow trying food out like nuts and seeds - lots of chewing.

Only my wife knows about the stoma and my life is normal in every way. My surgeon said he starts with robotic, but switches to keyhole or open if necessary. That's the ideal I think.  

I have to start 3 months of CAPOX new week which I am really scared of because of the stoma. My Oncon says if I can't tolerate the Capecitabine tablets, he'll switch me to the 2 day drip instead - but its for six months instead of 3.  

Everyone is different - but you under attack so I guess facing it head on is the best approach. Good Luck.

I had capox with an iliostomy.it didnt cause any problems re the stoma.

Kath