Stoma op booked!

 MiniM66  I love this!! I know it’s commonplace to name your stoma but I agree it should be celebrated further if it’s given you a better quality of life!

Nicola 

I LOVE this!!!!!!

Hi Irene,

I've been around on the forum three months less than you and so know how you have been struggling with the stenosis and the toileting ruling your life.  You must feel relief that you have made the decision to go ahead with the stoma operation.  Your consultant and team sound so supportive and kind and your family are all right behind you too.

So good to hear the positive posts from others who have a stoma this will reassure you its the right decision. You'll have to pick a name for your stoma too.

You've always been here to help everyone on this forum including myself and we will all be here to support you.

Sending a big virtual hug and lots of love

Carole xx

Yes I agree Irene yo have lots of good information .I had my first che.o cycle today it was a long day but feel OK so far I suppose the side effects will kick in later .my sto.a is called Stella take care and thanks again for all your support xx

Dear Irene,

Sending you positivity and strength. I hope your op goes well - let us know how you are. You have constantly been supportive to everyone on this forum with excellent advice.

Lace 23 xx 

Sending love , hugs and positivity xx️️

Hello Irene75359 

I know we have both been on here a while. I just popped a reply in another post about stenosis. I’m suffering really badly again and wondering what on earth to do. I did have some success using anal dilators with anaesthetic gel but what I hadn’t realised was that it would have to be an ongoing thing! Or likely all the time! 

Currently I am in agony with an anal fissure that I’ve had for 3 weeks. Had my mother staying last week so didn’t take my usual laxatives (as we were out and about) am now suffering the consequences! 

I know you’ve booked in for a stoma and am still battling with this. I’ve had a lifetime of constipation before my cancer diagnosis. But since my radiation it has left me with scarring/stenosis and sometimes loss control (or the opposite when my muscles just stay closed!) so taking softeners can just make me incontinent which just makes matters doubly hard! I’m one extreme to the other. Two days of each week is taken just staying in to sort this out with the other days sometimes fine sometimes I can’t leave without taking precautions which just seems very depressing. 

I just cannot get my head around a stoma and my oncologist isn’t particularly keen on this idea either but then she isn’t here when I’m trying to hold in screams at 2am when the pain is unbearable. 

Sorry all, rant over. Just feeling a bit at end of tether with this  has been doing so much better then it seems back to square 1 again… it’s just quite debilitating sometimes. I’m 54 and have two young daughters 13 and 11 so I need to be active and out every day on school runs and pick ups and all sorts so I can’t really go on as I am but I don’t know how or what decision to make! 

Would love any advice  

many thanks

PPR x 

Hello PPR

I have already done a post about my experience to date (all two days of it!) and feel so much for you; I haven't had an anal fissure but I know they are incredibly painful.

I had anal stretching done in December and the consultant told me any stretching would be conservative because my skin is so fragile.  But when he told me that because there was a lot of scar tissue that would contract again it would have to be a regular thing for the rest of my life, I found that mind-boggling, trying to imagine myself if I reach very old age stretching my anus daily!  In any event I was really unwell for a couple of days after the procedure (I think I had some sort of infection) and even after two days I was just as tight as before.

I had three more appointments with him and his registrar and whilst both of them told me that they didn't want to persuade me, they pointed out how my quality of life was suffering.  They were both so kind, gave me lots of time in answering all my questions and after the last appointment I went home and said to my husband that I was going ahead.  He said 'Thank God!'  He know only too well how my life revolved around Laxido twice daily and then having to cope with extreme urgency.  When you wrote that you didn't take laxatives because you had your mother visiting, this weekend just gone we spent with my daughter and I forgot my evening dose and paid for it the next day.  I didn't dare go out as I knew I had a lot to 'pass' and couldn't foresee where or when it would happen.  Even on a 'normal' day I wasn't getting out until 1 - 2.30pm because passing stools took so long, and I had started passing even more stools later in the afternoon.  Not much, but always accompanied by urgency and ongoing pain from piles.

Interestingly, when I had my regular follow-up appointment with one of the oncologists, she was quite shocked when I told her I was considering a stoma, I think she thought it was an extreme measure (rather like your oncologist).  But she wasn't walking in my shoes.  My daughters have long left home and I no longer have school runs or activities but I am now trying to imagine getting out at 9am in the morning - bliss.

Everything I have experienced this week is truly a walk in the park in comparison to all the treatment two years ago, hand on heart.  I mightn't always be as euphoric as I am right now but I am utterly determined that this is going to work for me.

You are really caught between a rock and a hard place right now - I hope you come to the right decision for you.  And if it helps in any way I am more than happy to share my ongoing experiences. 

Irene xx 

Hi I had a stoma a year ago and you just have a new routine I go walkingand am out on the country all day I empty it in the morning and then am fine the rest of the day you do habe to watch what you eat but you get used to it I do have a disabled key but never use it like I said it's a new routine but it doesn't stop you doing things just carry on as goal and if it prevents a lot of paints worth ig xx