Hi all,
new on here so bear with me if I babble.
I’m a stage 4 anal cancer survivor. I had a reversal colostomy in 23, due to constant lack of bowel control and up to 30 Imodium a day I am seriously considering going back to the bag. This holds negatives for me as well as positives I have a large hernia that I saw my oncologist about being repaired from the old reversal site. The reversal took a loooooooong time to heal and I had a large hole around 8cm across and 7cm deep for about a yr as due to the previous chemo etc I didn’t heal well.
The question is DO I? Go back to the bag! I know it isn’t a cure all but it is a cure of running to the loo or accidents in the night or not getting to the loo in time due to no internal/external sphincter control from the tumours. But there’s also the risks of leaking bags. I’m sure things have changed in the bag dept from a few yrs ago and I always used the half moon tape things around my bag to help, but I have the problem of not wanting to “go” in my bag when I’m out I find it embarrassing and I feel it smells. I know the little pouch pearls were coming out back then and I have seen advertised little tape things that alert you to spillages I don’t know If these are on prescription.
I always used the company via the hospital and didn’t really have any issues. Bags beige or black. Removal spray, wipes, blue bags. So on.
WHERE DO YOU PUT YOUR FILLED BAGS?
straight in the bin?
DO YOU TAKE THEM OUT EVEN AT NIGHT?
Where do YOU CHANGE YOUR BAG? Bedroom or bathroom
I live in a 2 bed flat with my adult son, he wouldn’t go to a bag. But says it’s up to me. And he can’t advise even though he knows I have accidents and can’t wait etc, with only one loo in the house it’s hard on him sometimes as I’m there for ages with ibs also,
I hated the wind passing uncontrollably but I pass wind now uncontrollably.
I hate the lack of control filling the bag and took IMMODIUM when going out bag or no bag.
My fear is as I age I’m now 53. My control will naturally get even worse currently I’d say for bowel control my level is 0/10 so a bag is no different but I’m worried I’m glamorising it! -
ALSO I HAVE A LARGE HERNIA & SCAR FROM THE REVERSAL, I’m supposed to be getting it repaired with mesh. I was 23 stone now 18 and need to lose more to stop the risk but the hernia sticks out like an alien !
DO NOT THINK I’D COPE WITH Illesostomy AND WORRY WHERE THEY WOULD PUT THE NEW COLOSTOMY!
has anyone had a colostomy after a reversal?
WOULD THEY REPAIR THE HERNIA FIRST AND THEN DO A NEW BAG PLACE WOULD I HAVE TO HAVE A ILLEOSTOMY INSTEAD? ON THE OTHER SIDE I DONT WANT THAT
PLEASE CAN ANYONE ADVISE OR OFFER ANY SUPPORT OR KNOWLEDGE I REALLY DON’T KNOW WHAT TO DO
I’M FROM STAFFORDSHIRE NEAR DERBYSHIRE IF THAT MAKES ANY DIFFERENCE TO ANYONE FOR HOSPITAL KNOWLEDGE ETC
Hi Ellie73123 and welcome to MacMillan and the stoma support group.
Please don’t worry about babbling here-we can discuss anything and everything, and thank you for sharing your story so far.
Some of your questions might be best asked to your consultant/surgeon, for example dealing with your hernia and the siting of a possible new stoma. Others in the group will hopefully be able to share their own experiences and help support you if we can.
I was hoping that someone who has been through something similar might have seen you post and been able to reply, and I didn’t want your post not to receive at least a reply and welcome.
I am not in the same situation, as although I have 2 stomas, my colostomy is permanent and will never be reversed and my urostomy is obviously permanent as I have had my bladder removed. I have no experience of an ileostomy and have luckily never developed a parastomal hernia under either of my stomas.
It’s clear from your post that both the hernia and your current situation are really having a negative impact on your life so I can appreciate you questioning the best way to deal with your issues. You mentioned speaking to your oncologist about a hernia repair, but have you spoken to a surgeon? They would be the best person to advise on exactly how the repair could be done, and explain what would be possible in terms of having a colostomy again and if that would be possible.
I don’t think personally I would be able to cope with needing so many Imodium on a daily basis, and the risk of accidents confining me to the house. I use closed bags for my colostomy which are very neat, and change them very regularly. I’m disabled so find it easier to change my bag in my bedroom as I cannot stand for long enough in the bathroom. I put the bag in the disposal bag and bag it in a scented small bin liner for disposal in the bin outside. I have never done this during the night-I can’t get outside on my own, but even if I could, I wouldn’t do a trip outside in the dark!
The output from my colostomy is much firmer than it would be from an ileostomy, depending on what I’m eating, and there is very little smell-only while I’m changing. With any stoma there is no control we have over when the bag will fill. But there are lots of different deodorising products on the market for the bags and the loo itself, though I haven’t felt the need to use any myself(except a spray which I use in the actual loo which is very effective).
Well done on losing so much weight-I know it’s not easy, so that’s a great achievement. The more you can lose, the less risk there will be for the general anaesthetic in surgery. Losing 5 stone is amazing!
Ultimately this will be a very personal decision, and you will need to decide what’s best for you and what you can cope with. But I’d recommend the first step would be speaking to your surgeon to go through all the detail about what is possible in your case, and what things might look like in the future for you.
Sarah xx
