Adjutment after colon surgery

Hi Mat C 

We’ve spoken before, but my surgery was different, so I’m not the best person to respond!

How best to adjust to a stoma? I’d say acceptance. I always accepted it, as I would not have survived without it, so it wasn’t difficult for me-I appreciate others might find it harder.

What’s it like not to have a rectum and anus? Well, I still have an anus, but have no rectum and it feels no different to having one for me. Once my discomfort from surgery eased, it felt no different to how it felt before.

Recovery took a long time for me, but I stress that I had a different, and more, major surgery. For me, the first time I really went out beyond going round the block or round the garden was about 3 months after my surgery, but this was during lockdown and covid…so a very different scenario.

I’ve off left answering in the hope that someone else would answer, and hopefully they will. I’d hope that someone like Katz51 who has been through the same surgery might be able to help with some advice.

Sarah xx

We spoke before and I suggested I was willing to answer any questions that you have.I am still open to any queries big or small.

Kath

Thanks Kath! My surgery was different so it it is difficult for me  to comment effectively.  I always think of you when I am thinking about your particular surgery!

Sarah xx

Hi Sarah, good to hear from you again, and thank you for guidance.  Other people have also said that acceptance is important in adjusting to the new way of things, and that having chosen what procedure I'm having will make it easier. I'm interested in finding out as much as I can, so thank you for your wisdom.

Mat

Do you know how you are having your op yet?I had mine by single port laparoscopy so very few stitches which made recovery quicker.

Stomas really are no trouble.(just a different way of doing things.if you see what I mean) and having a barbie bum doesnt bother me one bit.

All the best

Kath

Hi Mat C 

How the surgery is done will affect your recovery time-ie laparoscopic or open. I had open abdominal surgery with 25 staples to close my wound but yours might be done differently.

Sitting was uncomfortable for me as I healed, but that was internal as I was left with a rectal stump inside which is different to having a Barbie butt, and of course I’d had my vagina removed too, so there was a lot going on down there for me internally! I was much more comfortable lying down after surgery and it probably took me around 6 weeks to be comfortable sitting. 

The colon doesn’t have nerve endings so there was no pain for me specifically where the stoma was made on my abdomen-I could see the stitches but they were dissolving ones, so no pain there. If you were to look at me from the outside, there would be no sign in my nether regions that if anything done-the only sign is the stomas on my abdomen on either side of my belly button. I look exactly the same externally apart from that. 

I needed to take care when changing my bags because of my long abdominal wound with regards to infection being introduced when changing bags etc, but laparoscopic surgery is much easier to manage (I had my gall bladder removed last year laparoscopically with 4 incisions and that was much easier!).

You should take care lifting things as you can be at risk of a parastomal hernia beneath your stoma but I’ve not experienced that. I did try to be careful after my surgery. Tiredness was a huge issue for me after my op-you do need to take things easy and not expect too much too soon. Sometimes it can feel as if you’re taking one step forward and 2 steps back in the early days, so don’t be surprised if you need to sleep-your body has a lot of healing to do. 

Sarah xx

Hi Kath, thanks for getting in touch again. Hope you're doing OK. The surgeon told me they're going to try laparoscopic surgery to start, but it might not be possible to do it all that way due to scar tissue from previous surgery to take out my appendix, in which case he'll cut me open vertically.  Whatever they need to do is fine to be honest, that's for them to work out. My priority for the surgery is the successful removal of my bowel, rectum and anus, to reduce future cancer risk. The way I see it is that my part of the job begins when I wake up. Last year I had neurosurgery to remove some scarring on my brain and a non-malignant tumour. It all went well, and although recovery was tough, the most difficult and most painful part of it all was the constipation I had in the week following surgery, as a result of being given codeine for pain relief (which was ineffective anyway). It came as a real surprise to me that the hardest part of my brain surgery would be constipation! So based on your experience, I'd be glad to hear about anything I may not be able to predict, either immediately after surgery, or in the weeks to come. Thanks.

Mat

Thank you Sarah,

That's all good information for me to have and helps prepare me for what's coming for me. I know many things won't be easy after the surgery, so it's really useful to hear about first-hand experience and it helps me to psychologically prepare. I appreciate your help, thank you.

Mat