Hello

Hi JOHNP1874,It’s still early in your recovery and it’s understandable that you are feeling down.I had a different sort of surgery but I’m sure people who have had the same op will be along to support you.It is hard at the beginning but things should get better.You get more confident with time.Best wishes Jane 

Hi JOHNP1874 and welcome to our group.

You are absolutely fine to say exactly how you’re feeling as there will always be someone to understand. And we are not all positive Pollyannas all of the time which is also fine! 

Being only 6 weeks out of surgery you sound as if in some respects at least you are doing really well. But having a surgery like this changes so much in your life, both physically and mentally, and it’s ok to have sadness about what is different now. And you are part of a group here that really understands.

Tiredness can last quite a time-I had different surgery so have 2 stomas and I still get tired even 4.5 years down the line. I do what I can, but don’t feel guilty about having a lie down if I need to-I nodded off on the sofa yesterday afternoon too. I go to bed very early now but I’m also awake early, but I’ve learned to adapt to that quite well.

I tend not to go out because I’m disabled and it’s just too difficult, but it’s nice to sit in my garden and appreciate that on a warm day. Going out to our local doesn’t happen ever for us now, but to honest I don’t miss it. We focus on putting money aside for holidays abroad. It feels very daunting to think of going abroad with a stoma, but the thought is worse than the reality, so I hope it time you’ll be able to consider this. 

I go abroad often now, even as far as the Maldives and cope very well. It takes a bit of preparation, and you need to take a lot of supplies and spares but I have never let it stop me doing what I want. I’ve been on two trips abroad this year and have 3 holidays booked. It’s really good to have something to look forward to I think. 

This is tough, there is no doubt about that, but there is light at the end of the tunnel when it can in the early days feel quite overwhelming. Accepting where we are now with things and learning to adapt is a key part of this process, or it was for me. I have days when I can cry-yesterday for example! But days like today when I’ve been smiling, despite my colostomy bag deciding to explode! It’s all very natural in us humans with such a range of emotions! 

Will your stoma be permanent or will it be reversible? There will always be plenty of advice and support here either way for you. I hope you will find it helpful to be here and are able to find some of what we can tell you to be useful.

Sarah xx

Thanks for the replies. I’m seeing the colorectal nurse tomorrow. I will ask about flying. Did you take out extra insurance? 

Hopefully the stoma will be reversed. I will know after I see the consultant on August 7. I’m aware that it’s treated as cosmetic surgery so I may be on a long waiting list. 

I already had travel insurance, but told the company full details of my illness and treatments, and didn’t require extra insurance. For a time I had cover for everything EXCEPT my cancer but that has changed now due to the length of time since original diagnosis and surgery. I update my insurance company before every trip I make to make sure there are no surprises!

I’m not aware of any reason why there would be an issue with flying with any type of stoma, but hope your nurse can reassure you.

Sarah xx

HelloJOHNP1874 

At 6 weeks post-op I remember saying to my husband that I wished I'd never had the operation.  I was tired, feeling sorry for myself due to numerous leaks (I'd never seen a stoma nurse in person at that point due to covid and staffing issues) and just felt that every conversation included the words cancer and stoma!  However, slowly but surely, things started to improve. I finally found a stoma pouch that worked really well for me (no more leaks) and I went out walking every day, increasing the distance a bit every day and was soon back up to my normal range of 4+ miles.  That helped me clear my head and also boosted my confidence.  When folks asked how I was I just said really well thanks - and then changed the subject to something else.

We had been due to go abroad around 4 months after my op and my husband was desperate to get away as this holiday had already been postponed twice due to lockdowns.  Oh my, I really didn't want to go (hate flying at the best of times) and I even asked my stoma nurse to say that it was too soon and advise against it. She didn't though.  She told me to go for it!  Sorted me out with extra supplies and a travel certificate in case I got stopped at security and scanned. And it was fine.  Added the cancer diagnosis and ileostomy to my travel insurance, took double the amount of supplies so that all eventualities were covered, booked a plane seat near the toilet - just in case.  It was an uneventful 5 hour flight.

3 years on I do everything that I did before.  We go out for meals, we go on holiday.  I wear the same clothes as before, eat the same as before and, best of all, I mind my wee year-old granddaughter one day every week. Lots of cuddles and kisses there. 

Some things never change though.  I tend to get by on around 5 hours sleep a night (generally awake between 2 and 5am) but to be honest my sleep patterns have always been all over the place, long before this, so I'm very used to that.

It's still very early days for you but it will get better and your confidence will increase the more you do things, I promise.

Hello JOHNP1874,

Funny old emotions come into play. When I was diagnosed I thought I'd be dead in a few months. That was over three years ago and life is pretty good. My outlook changed and I am much more tolerant of others, which has to be a good thing.

Having both an ileostomy and a colostomy I can understand your irritation. I wear loose shirts daily and rarely tolerate a belt around my waist. However, on occasion where more formal dress is required then a Comfizz waistband serves very well to suppress the bulges under the shirt.and restore a smart appearance. But then I am in my 70s and old school!

Perhaps sleep issues apply to most of the population and I can nod off when sitting in an easy chair late afternoon after a days' toil around the house. For socialising the breakthrough was getting the procedure for pouch changing correct to eliminate the chance of a leak. Once this was achieved my confidence was fully restored and life is much the same as it was before the op.

Nonetheless, I was apprehensive about flying and the effect on managing two stomas. Not a problem provided you reduce your food and drink intake before boarding the plane. I sit and smile at those who have quaffed pints and a full English in the departure area and then desperately run for the lavatory when the seat belt light goes off. I wait until I reach the hotel before indulging in some appropriate refreshments.. An ileostomy pouch takes the urgency out of the situation, so there are advantages.

Early days yet, so bear with it. The novelty will soon wear off with your friends down the pub (who probably think you are a marvel and wouldn't be able to cope themselves: there but for the grace of God and all that).

Best

Dulac