New to forum

Hi Alexander and a warm welcome to the board. I’m a good bit older than you, have no children and had my stoma reversed after 16 months so probably not in a position to answer many of your questions! However I would like to say that your feelings and doubts for the future are completely normal and the ‘moving on after cancer’ is often harder than people expect. So here’s a few suggestions to get you started

Ring the support desk on the number under my name for a chat. They cover all aspects of cancer and are also offering 6 free counselling sessions bupa if you feel that would help?

https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support?_ga=2.27252541.1056242198.1658586663-1086557477.1625558621

Post your questions about your stoma on the Ileostomy, colostomy and Stoma support board 

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

Have a read of this paper about dealing with life after cancer

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

There’s lots of information online from the various pouch suppliers about sport with a stoma. Ive not heard if taking a pill to stop any output. Have you considered irrigation as an option? Maybe something you could discuss with your stoma nurse?

Sorry about all the links but hopefully some of the other board members will be along shortly

Take care

Karen x

Hi, Alexander, please read the paper 'after treatment finishes' that Karen has flagged up, it is my goto!! Your family, friends or boss might find it helpful too. I didn't get a stoma, so can't help there, but wishing you well.

Welcome to the forum Alexander

I read a book once about a man who was an incredibly successful businessman who found himself with a blood cancer . Just as he was running out of treatment options he was offered a clinical trial that turned out to be the golden bullet and the cure for his type of cancer . He literally lived through finding the cure .

As you can imagine everyone was delighted for him and only focused on the cure . But part of the process had been the fear , procedures and invasive treatments . He mentioned in his book about taking time to process that part too , for him he found a counsellor and was able to work through some of it . 

I can’t remember the name now but remember that part and the reason I read it my mum had known him as a child before he emigrated. 
Even writing this here is part of that process for you .

So glad you did .

Court 

Hi Alexander,

I am 34 now and was diagnosed last year with stage 2 bowel cancer on 1/12/21. I had 35 days of oral chemo and radiotherapy and then surgery 7/6/22 resulting in a permanent stoma. I'm nearly 3 months post op. I'd be more than happy to chat to you about having a permanent stoma in your 30s.

I feel similar to you in that it is hard for people who haven't been through it to understand. 

I am slowly starting to exercise and have some underwear from Comfizz that holds the stoma bag tight to the body while working out. I haven't had any leaks or anything with my bag so I feel quite confident working out.

I went on holiday to Italy last month and didn't worry about the stoma really. I'm trying to get back to some sort of normality. I don't have children (my partner and I froze embryos before my treatment started so maybe one day) but I have quit my job since having cancer and am moving from Bristol to Devon for a slower pace of life with more outdoor adventure which is what makes me happy. 

Feel free to message me anytime. I know how you feel.

Hannah :)

Hi Alexander,I have only joined this group yesterday,I was diagnosed with bowel cancer 4 years ago..was operated on twice in 4 days..(the keyhole surgery was not successful)so I had to have a full operation and spent 15 days in hospital..when the last football World Cup was on..I have had a stoma ever since..My consultant tells me I could have it reversed..did not have it done for one reason or another..and covid..now he's says its time to make my mind up...I am scared of having it reversed..

I can 'Manage' my current situation I am literally in control of my bowel..and I am frightened that a reversal might leave me incontinent..and not be able to enjoy life as I currently do...I usually walk 2 miles a day  with wife and dog most days..I usually take 3 UK holidays a year..(UK because of dog not my stoma)...and I am a step grandad to 9 children (some are grown up now)..I was 65 at my diagnosis and would have carried on working..but I was unsure of what the future might hold for me ..so took retirement...haha I should  have stuck at it as I am now looking for suitable part time job..Good luck to you....and try to look on your stoma as a friend..and not the enemy...Oscar

Hi Karen,

I was able to have quite a few sessions with a psychologist pre and post operation, but to be honest it'll probably do me some good to speak with someone again. I still think that I haven't even wrapped my head around the diagnosis of cancer but then everything goes so fast, jumping from one appointment to another, and then life continues and brings it's own issues to the mix. 

I will post something in the stoma group.

I've seen this paper linked on another post when I was doing some browsing, I managed to quickly go through it but will read it again to let the words sink in.

I will continue to look into it. You see a lot of people on social media and even my surgeon say, you can do everything you used to do, but somethings still have me scratching my head over asking 'how?'. Plus, a lot of things don't feel the 'same', you can still do a lot of things by adapting how you do them, but I can't have my child sit on me without being conscious of the stoma bag and whether it would break or if it's filling up for example.

Thank you for being the first to reply.

Alexander.

Thank you Gemmary, I am going to read it again, and then probably a few more times after that.

Thank you Court, making the step to talk to people who gone through something like this was one I knew I had to make.

Hi Hannah, 1/12/21 was the date I had my operation, so we share a significant date that we probably won't forget.

I had the same with the oral chemo and radiotherapy, after the operation I had a few more months of chemo, I don't know if that's usual procedure, but they wanted to make sure. I will have scans around December time to see if it has completely gone or not I guess. I assume you will have similar scans around June next year?

Yeah I know what you mean with people. I think I was always under the wrong impression that people would have more understanding about it just because it is always being advertised, the charity shops or the fact that you hear about this horrific thing from an early age thinking it'll only happen when your older. Since diagnosis, you realise that it's a word that's mentioned a lot in our society but doesn't carry the gravitas of what it actually is. My father for example was never great with emotional stuff anyways, but he only asks me about the next appointment dates, something that can be ticked off on a calendar you know? Chemo, check. Radiotherapy, check. Operation, check, etc.

I use those waist bands as well, I also bought a belt that holds the stoma bag in a sideways direction. 

Well done on the holiday. I must admit I've been pretty nervous about that because you now have to plan ahead and make sure you have enough supplies and can't really be impulsive. I have had two short UK breaks in the last couple of months just to build up some confidence.

Was the job one that was hard to quit? For me, I feel like I've spent this long struggling to find a job (and not getting it) about something I'm passionate for and now I just feel...well I don't feel a lot about jobs and careers to tell you the truth. I'm still off sick with my current employer with a note from my doctor and I don't know when I have to start thinking that treatment time is over and I have to go back into being a cog for society. Doing something quiet has a bigger pull for me now than anything else, if you can actually change your environment to a more slower pace also, then that's a win-win.

Alexander.

Thank you Oscar, I hope that whatever decision you make it works out for you. The worry that your feeling is obviously something I won't be able to help with you much as I was told it'll be a permanent stoma and that's it. But I can guarantee that there are plenty of people on here who would have had the same option as you, and some would have chosen the reversal and some would have kept the stoma, try putting a post up asking for people's experiences, that should hopefully help you. I've only been on here a few days also, and you can see from this post how open people are to help, it's well worth trying. Best of luck.

Alexander.