Prolapsed stoma

Hi Speedbird 

Oh my goodness, this sounds horrendous for you to try and manage, but I’m sorry I don’t have any experience of what you’re going through to give you any advice. I just wanted to say hello and welcome to the group.

I have my stomas because of having a total pelvic exenteration after my cervical cancer recurred, but my colostomy is flush with my skin so has never protruded at all.

It seems an awful long time to wait to see a nurse, but I’m aware from my own family situation right now of the terrible delays in the nhs. Do you think there would be a possibility of further surgery to repair the prolapse? I’m wondering why you would be seeing a nurse rather than going straight back to your consultant/surgeon to get help?

You’ve been through such a lot since your original diagnosis, you deserve to be have this dealt with and not be left waiting like this for help. 

Sarah xx

Hi Sarah

Thank you for replying. It's taken me over a year and a half to finally "psyche" myself up to join a forum, and it's already making me less alone, so I really appreciate you responding.

My goodness, it also sounds like you've been through the mill, to say the least. I've only briefly read a few posts elsewhere in the Macmillan online community and I am in awe of what other people have gone through and continue to manage and live with.

In answer to your question of further surgery for the prolapse, there are three reasons why I've not yet explored this possibility. Firstly, there's a slight complication in that I'm currently having an infusion of Avastin (Bevacizumab) every three weeks and this treatment is due to finish in mid-September and I have only got two more cycles remaining (I will have been on this treatment for one year in total). One of the side effects of this drug is that it lowers platelets and I would not be able to have surgery unless I stop taking Avastin and wait for at least 6 weeks before having surgery. It's also tricky because if I do have to pause treatment, I've been told by my clinical nurse specialist that it could affect funding, so a pause in treatment might mean I'll be losing out on finishing the treatment. I haven't fully explored this avenue because I'm hanging on, hoping that I can just wait long enough for me to finish Avastin in mid-September (which is only 5 weeks away).

Secondly, because I have had a defunctioning loop colostomy, I can in theory have a stoma reversal now that I've been cancer-free for a year. The last time I saw the consultant oncologist I asked if I could be booked in to see a colorectal consultant, but was told that it would be better to wait until I've finished with Avastin before any consultation could take place. So, this is another reason why I'm "hanging on" regarding the prolapse because I could in theory be having a stoma reversal in the not too distant future.

Thirdly, I have booked and paid for a two and a half week trip to Japan which starts on 25 September. This is a massive commitment for me. I have been lucky in that a couple of friends of mine who live in Japan have offered to meet me in Japan so that we can travel together. Before I got the cancer diagnosis, I had done quite a lot of solo travelling, but having had the operations and two rounds of chemo, and having to manage a stoma has all knocked my self-confidence and has made me feel anxious about travelling on my own. So this is another reason why I am really hoping that my stoma does not get any worse than it is already so that I can go on this trip.

However, Sarah, you have asked a valid question - why see a nurse instead of a colorectal consultant/surgeon? I will call my clinical nurse specialist first thing tomorrow and ask if they think this might be a better option. Thanks again for your input.

XXX

Hi Speedbird 

Thank you for explaining everything-I didn’t realise you were still in treatment. I have friends on Avastin so am aware of the potential issues around it re funding etc. I didn’t realise either that you could also be in line for a reversal so I can see how those factors change things or at least mean putting things on hold for the moment. And your trip to Japan! My daughter will be on her honeymoon there for most of September and it does sound like that will be an amazing trip. I can understand why you don’t want to miss it. I’ve not travelled by myself overseas for years-I’ve always been with family or friends so I think you’re brave to go alone. I don’t think I could nowadays! But you’ll have the company of your friends while you’re there which I’m sure will be lovely for you.

It’s a good idea to speak to your CNS and see if she can give any ideas, maybe about getting the ball rolling for discussions after your trip. Things take a long time to arrange at the moment, so it might be good to make yourself known now and that you will need to have discussions on your return from Japan.

I’m sorry I couldn’t help more with the prolapse issue, but I’m glad you’ve psyched yourself up to join the community now-it’s a good source of advice and support in so many ways and I find it does help to be able to talk to others who can understand. 

Sarah xx