LAR surgery experiences

Thank you so much for your advice, it is nice hearing from people who have been through something similar and get some advice from the road ahead. Is your Ileostomy perm or temporary? I’m having quite a down day today where I am just realising what is going to happen and the effect this cancer is going to have on me mentally and physically. I’m only in my 20s so I feel a little bitter that I’m having to make these major decisions and life altering surgeries before it’s even really begun. Thank you for your advice xx

Hi Leighsp

It's very tough, with you just being in your 20's.  Life is very unfair sometimes.

I was almost 64 when diagnosed so almost an OAP (although I don't feel like one most days).  Initially, just after diagnosis, I was told that I'd likely need a stoma and it would be reversible.  Then, about a fortnight before the op, when I was waiting for an appointment with a stoma nurse, I got a phone call out of the blue to say that my case had been discussed further and it looked like a stoma wouldn't be needed so no stoma nurse appointment - hurray!  However I woke up after the op with a stoma which the surgeon considered had only a 50/50  chance of reversal.  Earlier this summer I was offered a reversal at a different hospital 80 miles away, but, after checking out all the pro's and cons, being told that my bowel habits would definitely change as I had hardly any rectum left and considering how my life might be affected, I turned it down.  Keeping the stoma seemed like a safer bet to be honest.  It was a purely personal decision for me though, which I'm happy with, but which wouldn't be right for everybody.  We're all different.

I have a distant relative who's daughter had a stoma in her 20's (bowel disease, not cancer). She's in her late 30's now and has gone on to have 2 children, wears a bikini quite happily and lives life absolutely to the full.

It's normal to have down days as it's a scary and depressing time but hang on in there.  The most important thing is to get that cancer removed.  Once that's done it will be easier to face everything else. Come on to these forums and ask as many questions as you like.  Somebody will definitely have an answer for you.

You could also come and join us on the stoma forum too.

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum

Take care x

Thank you for sharing your story, this makes me feel a bit more positive! I’m terrified of the reversal but hearing positive stories makes it easier

Hi there Leighsp

Im post reversal and felt exactly the same as you especially as my stoma aka Whoopi gave me freedom from being shut in the toilet trying to poo. 
I was extremely falling towards keeping it then a chance came up quickly after 13 months and I’m one to have no regrets. In my head I had decided a year and I was not going to wait much longer. 
So I knew if I didn’t try then I would think back what if. Everything seemed to be against this happening then it did.

Its early days things are improving and I’ve been assured by my surgeon and can have a new stoma formed if it limits my fun in life. But at the moment in seeing huge improvements

Id just concentrate on what’s in front of you for now. It all becomes overwhelming when you can’t see around the corner and you try and make plans for it 

I was in education and I’m a planner. It gives me confidence 

Look up Blake Beckford  he battled colitis for 12 years  you should see the difference in him he is older hes 33 but a model!

Keep chatting. 
sending you a hug 

Hi, Gemmary, i Thought LAR always resulted in a temp Stoma, i have the same diagnosis as your self T3N1MO. My tuma is 4cm and 12cm from anal verge, How large was your tuma. I am currently receiving chemo and radiotherapy for 5 weeks, then 18 weeks of Chemo, with purpose to shrink the tuma before surgery. Hope fully i might be fortunate after my treatment to be given the same options as your self.

Hi thassos and a warm welcome to the board. This is quite an old post but I know Gemmary is still active on the board so will hopefully see it.

I was the same staging as you and had a 4cm tumour which was 9-10cm from the anal verge. The chemoradiotherapy shrank it by 75% so hopefully you’ll have a good result from your treatment too.

We’re all at different stages of treatment and recovery so if there’s anything that you want to know then please ask?

Take care

Karen x

Hi, Karen

A warm welcome to your reply.

75% is a brilliant response, did you have any side affects to your chemo, i was told there are minimal side affects with the tablet form treatment, however i understand this is bespoke to the individual. 

My oncologist advises there is a 30% of pathological complete response after my type of initial long period treatment, have you come across any one who has achieved this.

Did you receive  a temporary stoma like Gemmany, if so how long did you have it before reversal, and more importantly how are you now post cancer

Thassos 

Hi, thassos . LAR does not always end in a stoma, I did not get one, you are warned and marked just in case. It can depend on what they find, and the skill of the surgeon. I think my tumour was 7cm, a tennis ball. About 10cm in?? Can't remember this bit. As I was nearly blocked, they opted for surgery first. The biopsy cleared the nodes, but found vascular invasion hence my chemo afterwards. 

Good luck with the chemo radiation.

Hi Leighgsp,

Hope you are in good spirit today

Just wondering, because you have the option of the TEMS procedure, is this because the tuma is low down, and presumably small,

warm regards

Hi Gemmary,

Thank you for your reply, and more importantly i hope you are well.

Are you now back to where you were pre op in terms of bathroom habits and general health.

Warm regards