Having an EXTRALEVATOR ABDOMINOPERINEAL EXCISION OPERATION

Hello , and welcome to the online community. I haven’t got the personal experience that you’ve looking for but hope to point you in the direction of the groups that will. I will put a couple of links to groups below.

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer/discussions

https://community.macmillan.org.uk/cancer_experiences/ileostomy_and_colostomy_discussions/discussions

Just click on the link and it will take you to the discussions page, you can click on join the group and set how often you want to be notified of posts that come up, I find it’s more useful to log in and read the whole discussions than just the individual emails you will get. If you don’t find a recent discussion on the topic create a new one just like you’ve done here, a copy and paste of your one here is the quickest way. Completing your profile so people know if you are he patient or a carer/ friend can also help as there are other groups that may also be of help. 

is the community champion for the groups I’ve mentioned, and I’m sure will give you a warm welcome over there.

Best wishes

Hi @Winniebless yes I’ve had an ELAPE. Check out my profile...just tap my name and it’ll come up. I’m now irrigating and feeling really good so this is doable.

Thank you for sharing your progress post ELAPE. It has helped me mentally to prepare for what is to come. Not being able to sit for any length of time for almost three months shocked me. Do you have to lie sit or walk for most of the time? Trips to cinema theatre restaurants all out of the question in early stages then?

When did you start irrigation I hope this will be something that I can try. I’m 72 previously fit and healthy and devastated like you at the thought of a permanent Stoma. Does irrigation take a long time and is it each day you have to do it. 
Thanks again for posting your experience. Found it informative and helpful. 

Hello, @winniebless, as you say mental preparation and therefore staying super positive is a huge help so hang in there. In answer to sitting etc everyone is different. My surgeon said she’s had patients sitting and riding a bike within a month so don’t despair. Some people who’ve had this procedure or similar ie an APR have said a recliner is useful. Staying active up to the surgery is also a huge help.  

I’m still getting to grips with irrigation even though I started in April, again everyone is different and a lot of it is trial and error. It’s a huge leap forward though in terms of having some control over your bowel. 

Life is a good as it can be but it could be better. I am a person of little compromise when it comes to my new circumstances and continue to join the ends together. Sailing, Nordic Walking, Pilates and Swimming are all things I’ve restarted. Next on the list is Telemarking. Anything is possible, it just takes a bit more effort. 

If you’d like to send a friend request please do?

Best for now and take care. 

Hi Winnie,

I really must offer my sincere apologies for not picking up your question earlier.

I also give you my welcome to the online community.

Over in the Bowel (colon and rectal) cancer forum group we have 2 members who are very helpful by giving advice on an ELAPE operation and I am going to tag them into conversation they are Ewok and Pepsie  if you care to pop over to the above group we are at present discussing this and you'll be able join in or have a look at how it's going.

With regard to your permanent colostomy definitely the place for you to come is Ileostomy, colostomy, urostomy and any other stoma support group and ask any questions about your stoma management, its often helpful to ask questions before the operation to prepare you for afterwards, but questions about anything and I do mean anything will be answered and we have lots of hot tips on having a stoma.

I don't want you to worry about having a stoma, remember having a stoma is not the cause of the disease, its part of the cure and having a bag is 100% better than the alternative

If you need anymore help please give me a shout I'm usually in the 2 groups above but you can find me in others.

When is your surgery due, please keep in touch with us and keep informed on how everything is going and if you need a chat we're a very friendly crowd over in the 2 groups and you'll be made very welcome.

Our motto in both groups above

"There is no such thing as a silly or stupid question

Only the one never asked"

If you have one rolling around in your head, ask it, get it answered, put your mind at rest.

We are only a click away.

Ian