Hi all,
I'm a newbie to Macmillan so apologies if I've joined the wrong group for this post. I am 40 years old and reasonably fit.
In Feb'18 I was diagnosed with a T2 N0M0 adenocarcinoma in the rectum, right on the anal verge. I rejected the offer of surgery and instead opted for 3 x fractions of papillon plus 5 weeks of chemoradiotherapy. 20 months later I was informed that the tumour had come back. Not cool.
Out of options, I had an abdominoperineal resection 5 Dec'19, so just over a week ago today. The surgery went really well, according to my surgeon, and apart from the psychological impact, which probably does deserve a thread of its own - maybe later, I'm physically feeling pretty OK all things considered. I was discharged on 8th Dec.
My question concerns the perineal wound and the way it has been stitched together. I left the hospital still not having looked down there yet. The lack of mirrors in the shower room aside, I was still too mortified with what had happened to my body to regard my new derriere. What I couldn't avoid was the feeling that the buttocks had been pulled together. I assumed that this was surely a temporary safety measure, put in place to protect the sutures holding together the flesh deeper in the bottom crevice left around the void where my anus once was. In other words, going into surgery I imagined that the anus would be removed leaving a 2 pound coin sized hole, which would then be pulled together with stitches (or some other way), and i would still have a "butt crack" for want of a better term. However, I'm now not so sure. If this is not the case, then this was not made clear by my surgeon or my nurses. Perhaps they thought it was all clearly understood, and it would have been by them who deal with apr day in day out, but it wasn't to me. Can someone please share their experience/knowledge? If you have an APR are you never left with a "butt crack" (again, pardon my blunt language), or does it depend?
1) If this is just how it will be, I'm finding the area creates a bit of restriction. Not massively, but certain movements pull on the buttock join, when previously the two cheeks would simply part, given extra freedom of movement.
2) Furthermore, I feel like I have a permanent wedgie. Does any of this get better, and how long should I expect to feel like this?
3) Does it affect how one looks from behind when wearing trousers - I imagine the seat of the trousers will look odd with just one buttock? Will I ever feel comfortable in a traditional cut of trousers where the design anticipates two separate buttocks?
4) When can I expect to be able to bend over or, I don't know... do the splits!!... without fear of "tearing myself a new one"?
Sorry, these are arguably petty concerns given what I have been fighting, but I do just need some expectation management in place, otherwise I get anxious. The wound is not terribly sore. I can sit now for reasonably long periods, although I do favour lying down and my mother insists I use the valley cushion as much as possible. I have so far, touch wood, not suffered any wound infection.
Thanks in advance for any and all support you can offer.
Kind regards,
NMTB
Hi and a very warm welcome to the online community
I'm sorry to hear that your original choice of treatment didn't work and you've had to have surgery.
I didn't have this type of cancer or surgery so don't have any experiences to draw on to help you. However, I think it would be a good idea if you joined and posted your questions in the bowel cancer group as there you'll connect with lots of people who will have had this.
To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and ask questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.
When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
