My first post on this particular forum, and I would love to hear your honest views.
I was treated for anal cancer, treatment ended two years ago and to date scans are all clear. Pelvic radiotherapy has left me with anal stenosis (not to mention continual upset bowels), and I saw a colorectal consultant who offered anal stretching but said it would be something I would have to carry on doing as the scar tissue would most likely shrink the anus again. This has been difficult as immediately after the procedure, I had picked up an infection and then my piles became really engorged and it was too painful to do. My routine is two Laxidos daily and prune juice every morning and I am not safe to leave the house until early afternoon when I feel 'cleared out'. At that appointment, he broached the subject of a stoma, and said it can be life-changing (for the better) for someone like me. I have a lot of confidence in this consultant and he was very sympathetic to my problems. However when I told the young oncologist after one of my routine scans, she looked shocked and said that is a very big step to take.
But my routine is so limiting. I lose three or four hours every day waiting, and last night my husband and I had a long talk and he mentioned that we can only arrange certain holidays that doesn't involve early starts for day trips etc. He wasn't complaining, but I think somewhat regretful.
So; living with a stoma. I have read some posts that talk about continually having to empty the bag, even during the night, developing hernias and other problems. But my husband rightly pointed out that people (no criticism intended) tend to post about their problems not how easy life is. Like me posting about my problems right now!
I would be most grateful to hear your opinions, the good and the bad.
Thank you.
Irene
Hi Irene75359 and welcome to our group.
We’ve chatted before on the anal group so I know how much your issues are currently impacting on your life, and how awful this is for you. Which kind of stoma are you considering? There is a big difference between an ileostomy and a colostomy, so I can only speak about my experience with a permanent colostomy.
With my colostomy there is no constant emptying of the bag. I wear a closed bag, as opposed to a drainable bag, and my output (poo) tends to be quite firm. I empty the bag when there’s something there, just so it feels more comfortable to wear and this keeps my surrounding skin in better condition. This might not be as much as every day. I changed my bag after my shower yesterday and there was nothing in it for example. The output from an ileostomy is more fluid, so typically would have to be emptied more often, but people wear drainable bags which mean just emptying into the loo without changing the bag each time.
I never have to get up in the night to empty or change my bag and in 4 years have never suffered from a hernia-I was always careful with lifting in the early days to try and avoid this.
I’ve got used to “patterns” of activity with the stoma over time, but can eat anything I want. I know some things are likely to make my bag fill quickly but sometimes there’s nothing quite like a fresh croissant and butter! I’m aware of this and so I’m ready for action! Maybe twice a week I’ll have what feels like a big “clear out” and then everything will go quiet. On those days my output will be looser and I may change my bag twice. Changing the bag and cleaning round the stoma becomes second nature very quickly and it really takes just a couple of minutes for me.
I have on occasion suffered from diarrhoea, just like anyone can be prone to, and this would involve more changing, but it’s rare. I find my urostomy much more of a nuisance, as without a bladder there is nowhere inside for urine to be stored and it’s working all the time. The colostomy is very much dependent on what you are eating but is really very easy to manage.
For me, there is no downside to my colostomy, and it was actually my choice to have it. The colorectal surgeon said my bowel could be saved as it was not affected by cancer, whereas my cancer had spread over my bladder so it did have to go. He was shocked when I asked him to remove it, but my thinking at the time was that it was one less place for the cancer to go to, I was having one bag so might as well have two, and I might increase my chances of success if I had everything out.
I would seriously consider it in your position. You would gain an element of control over your life (although you can’t of course have control over the stoma itself and when it “goes”). I travel abroad, can change a bag quickly in a plane loo or any other loo. People are not aware I have any ostomies unless I choose to tell them, I wear the same clothes as I always did, don’t bother with stoma specialist underwear, can go swimming and do everything I used to do before. A stoma in itself isn’t painful in any way, though I usually get some signs it’s about to produce something, just like the average person would have an urge to have a poo!
It could change your life hugely for the better from your current situation.
Sarah xx
Morning Irene
I’m so glad you saw such an understanding doctor yesterday, who really listened and explained everything from the medical viewpoint.
She’s right, for me anyway, that you don’t really think about the stoma. I only really give it a thought when it needs changing but otherwise don’t really notice it. Quality of life is really important, and I can’t imagine what you have to go through every day. I can get up, get ready and get on with my day but your life and your husband’s life is ruled by your loo needs.
Being an end colostomy for me, I have had my rectum removed, but not my anus, so I am left with a charmingly named rectal stump inside. Everything on the outside looks as it always did as everything was removed from the inside abdominally, so I’ve not got a Barbie butt!
I hope your scans go well next week-I have never been able to have scans without a huge amount of anxiety, so I know that scanxiety feeling! And I hope you’re able to make a decision that you’ll be happy with. Always feel free to ask any questions in the group now you’re with us.
Sarah xx
