Bowel cancer treatment and side effects

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leighs

Stoma bag for rectal cancer?

Hi everyone.

Today I found out they want to take out my cancer via the TEMs procedure.

If they think the cancer is aggressive after biopsy, I may need more surgery.

I am in my 20s and really worried about having a permanent stoma. My tumour is 7cm from the anal verge. Has anyone had their tumour the same distance and had no stoma or a temporary one?

Leaguefan

Hi @leighs
To be honest I’m not sure what the anal verge is, top or bottom of the rectum.
If it’s at the lower end , like my tumour was, it was less than that and the surgeon said he wasn’t sure if he could remove the tumour and not have a stoma.
It turned out he could even though he had little to work with.
So I have no stoma and only a slight inconvenience with toilet habits, otherwise my life is fine.
Everyone is different so I won’t say that as it worked for me it will be the same for you, but the chances would be high.
Hope this is of help.

Regards
Keith aka Leaguefan

leighs

Hi @Leaguefan, thank you so much for your responses this has made me feel a lot better! I think it’s the lower end but I am not 100%. My initial doctor who diagnosed the cancer and did the colonoscopy said that I shouldn’t need a stoma, and if I did it would only be temporary but I had a bit of a blip and was assuming the worst! Did you have a temporary one or not one at all? Thank you again :)

Liz Blakelands

@leighs
Hi
My tumour was 6cm from the anal verge, (it is the lower spincter end). I had a temp ileostomy for a year. That was over 4 years ago and surgery techniques have improved, and continue to improve since then.

I was really devastated when I realised it was going to have a temporary ileostomy but the colorectal nurse say think of it as something that saves your life and it is for a year only. A stoma is very doable and there is a wealth of experience within the forum on all things stoma. A stoma is only used when it absolutely has to be done to allow the bowel to heal or because it cannot be joined.

Please don't worry about things that haven't happened. The best thing is to stay with what you know at the moment. you going to have TEM's removal of tumour which is the low impact way of doing it and without stoma. Eat well and exercise, get as fit as you can for the op, this all helps with recovery.

Good luck with the surgery
Liz :x::x:

leighs

@Liz Blakelands hi liz, thank you so much for replying. When I heard today they wanted to do TEMs, I was over the moon. However then I started panicking thinking what if it had started to spread and then I would need further treatment. I’m sorry to hear about what you have been through, but like you say it saves your life and it is only temporary. I’m worried about the affect this cancer is going to have on me. I don’t want to be spending the rest of my life worrying about this, and I am only a week in :( it’s exhausting the emotional rollercoaster!!

jay29

I had TEMS surgery in February 2022 and recovering well.Waiting on my first surveillance scan result.I have a temporary stoma and although takes a bit of getting used to it’s very manageable and saved my life so I see it as a friend.Hoping to get it reversed in near future.Get as fit and healthy as you can before operation as it will definitely aid your recovery.Best wishes

Leaguefan
Quote from @leighs:
Hi @Leaguefan, thank you so much for your responses this has made me feel a lot better! I think it’s the lower end but I am not 100%. My initial doctor who diagnosed the cancer and did the colonoscopy said that I shouldn’t need a stoma, and if I did it would only be temporary but I had a bit of a blip and was assuming the worst! Did you have a temporary one or not one at all? Thank you again

No , I was fortunate in that before the operation the surgeon did say it would be keyhole surgery and was told I probably going to get a stoma, either temporarily or not. He did say that the position was the problem but wouldn’t actually know until het got to the tumour.
It turned out that keyhole didn’t work so I was opened up but he managed to do the resection without having a stoma.

leighs

@jay29 thank you for responding! How did the TEMs procedure go if you don’t mind me asking, were they happy that they got all of the tumour? And yes going to reallt focus on becoming happy and health before u go in

jay29

The TEMS procedure went very well with no complications.I had a hysterectomy at same time so it took a good few months to recover but getting there.The physio will have you up and about as soon as they can to get you moving again.The surgeon was very happy with the surgery.I had chemo radiotherapy before surgery so it had reduced the size of the tumour significantly which pleased him for the surgery.I did not need any follow up treatment after surgery.Take care of yourself and make yourself a priority when you can.It’s so important to look after yourself after the surgery and rest when you need to rest.Your body will soon tell you to rest.

leighs

@jay29 thank you so much! What size was your tumour? I think they believe mine is small enough to remove it without any prior treatment 30mm, however I am scared that as they aren’t removing the lymph nodes they won’t know if it’s fully spread. As far as I’m aware, they will biopsy the polyp and some cells around to see if it’s high risk of returning, was that similar to yourself? And if it is high risk I would go in for further operation

leighs

@Leaguefan very happy you did not need a stoma in the end, it makes me feel a bit better as the doctor said my polyp is in a good position to be taken out! Hoping to hear back from my MRI and CT scan tomorrow or Tuesday!

bettyb1987

Hi @leighs hope you're okay. Such a worrying time waiting for all these decisions and subsequent treatment plans. I was 34 when diagnosed and had a TME (total mesorectal excision) as opposed to TEM but I have a temporary ileostomy, which I should have for 8 months. Feel free to read my profile and ask me any questions if you'd find this helpful! All my best, Betty :x::x::x:

Edit - I meant to add that mine was 6cm from anal verge! In my operation they took out about 20cm of my bowel :x::x::x:

leighs

@bettyb1987 thank you for responding, I am glad to hear things are working out for you now. I visited your profile and read your story. How are you finding the stoma bag knowing it’s temporary?:x::x:

bettyb1987

Hi @leighs no problem! 💕 So in my case I knew I would have a temporary stoma bag before my operation because of how low down my tumour was and to ensure it gave my join a chance to heal. So I saw that as a positive. My surgeon told me that to wake up with one was a positive because they had been able to get enough of my small bowel to loop out to give me the best chance of longterm recovery and to allow my anastomosis to heal. My grandma had bowel cancer in her 70s and had a colostomy bag (I have an ileostomy though) and I wonder whether because she had it, it calmed my nerves. She never once complained about her bag because in her case it literally saved her life. I think because I was "used to it" with her, the idea of a bag never bothered me. In fact I never even really thought about it before my operation which is really strange in hindsight! I just see it as a means to an end and that if my grandma could do it and cope with it in her 70s then so could I.

Now I'm in a routine with it it's totally manageable. I change it every 2-3 days, I know which products to get out in what order, and it's now so much quicker to get off and on again. In fact I can now kind of see why people keep them and don't get reversed. I was at a festival last weekend where my partner got sick (both ends!) and whilst he was trying to deal with the urgency of getting to the bathroom it made me realise that not once since May have I had to rush to find a toilet, or panic if one is occupied!

The one difference that's annoying is my diet. You can't eat any nuts, popcorn, mushrooms (weirdly) or high fibre foods like brown bread / rice. My diet the first 6 weeks was like a kids but gradually I'm starting to introduce more meats and soft veg.

For me, I'll likely be reversed at some point from mid December to early new year (according to my surgeon) who actually wanted to do it sooner but seeing as we are going on a holiday to America in November he suggested to delay it a bit because my ileostomy right now is a controllable situation. After it's reversed is when I'll find out the long lasting damage to my bowel and if I have LARS syndrome, which is the thing that worries me longterm.

In summary, please don't worry if you need a bag. It is totally manageable and you will be in fine company if you do need one - I've found fellow "ostomates" to be super helpful with advice and with sharing their own experiences - as are people on this forum.

I hope this helps!!
Lots of love 🌈
B
:x::x::x:

foster mum

@leighs , I’ve had mine for four years. I change it ever night, that’s my choice! It hasn’t stopped me doing anything from swimming, long haul flights, bowling and living! It really isn’t a problem once you settle into it, so if you do end up having one, don’t worry, good luck, Vivien :x: