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Total Proctocolectomy Yesterday!!!

So yesterday was the day I had my surgery and got Agnes, my ileostomy stoma!
The surgery went well and i spent the night in the recovery room. He reopened all of my previous mid line scars to smooth them out and make them look nice so there's an 8 inch incision there.
Today I just feel VERY sore and tired. I will feel much better tomorrow when they take this darn NG tube out, my arch nemesis!!! Also tomorrow I will get to meet with ET nurse again and start learning the ins and outs of Agnes, lol!
Thank you so much everyone for your support, I feel so lucky to have all of you to talk to!
Hooray!! So glad things went well and you are doing okay.

Welcome Agnes! :bigwave:

Here's sending you good energy that tomorrow will be even better. Get some good rest, if that's at all possible. :)


:ghug: Be patient with yourself as you go through the healing process.

Take it very easy and slow. May your healing and recovery go smoothly!
Glad to hear you back in the land of the conscious. Just rest and let the pain meds do their job. Hopefully the pain will get less each day. You and Agnes can become well acquainted and learn how to care for each other. Good luck, and look forward to your updates.
I'm so glad everything went well for you. Just take it easy and rest, rest, rest. Hopefully it will get less and less each day. Good luck and keep us updated on your progress xx
:wink: Welcome to the world Agnes! You need to behave! Hoping for a smooth recovery---go sloooooowwww and rest up. Everything will fall into place and you will have your own customized routine. We are all thinking of you and wish you the best! Enjoy the pain meds-LOL. :D Dana
Congrats to you! Sounds like you are adapting quite well. Pleases let us know of any questions you may have. Speedy recovery!
How are you doing, JennaRae? By this time, you may have run into some problems with dehydration or ileus, but hopefully not. Thinking of you!!!!!!!
Wow, you're posting a day after the Op! I remember being flat out and not in the mood for very much at all.

Good luck with the recovery. Take it day-by-day. Occasional set-backs are the norm. Hopefully you will be back on your feet soon. :)
Thanks so much everyone!!!
I am home now and doing much better. I'm sorry I didn't post for a while I was VERY tired and frustrated. I got my drainage tubes removed yesterday and feel tons better! The only complaint I have now really is the pain from my rear end stitches. They come out next Thursday.

I am feeling great though. Just trying to get into a routine and still learning how to take care of Agnes, which she says hello to Angus by the way, lol!

Figuring out the best way to shower has been my biggest issue which sounds strange to say. I have figured out the appliances and which one i like and what not so that's not a problem.

I appreciate all of your posts so much. They made me feel so great and more confident about the while thing!!!


Thank you for posting! So very happy you are home!

I too had trouble showering. I was full of staples and bandages. Never mind the fact I was not exactly steady on my feet either. The nurses tried to assure me, but I wasnt assured!

But I discovered Tegaderm tape. And I just wrapped it over my bandages. The nurses should have some of it if you ask for it. Hopefully that will help.
Very glad you are home and feeling much better:) hope it keeps getting better and better for you. My appt to speak to surgeon has been from 26th nov to 19 th nov then get put on waiting list for this next op-_- xx
Terriernut, thanks for the tip! It's gotten much easier although afterwards it feels like I just ran a marathon!
Cheer bear, I hope you get to see a surgeon soon 😔 I'm sorry it's taking so long. Keep me updated.

I tossed and turned too much lastnight and my butt was SO sore this morning. I cannot wait to get these stitches taken out!!!
I do have a question about sleeping with the bag though. When I lay on my left, stomas on right, is it ok for all the stool to be basically sitting on my stoma for hours while I'm sleeping? The way the bag lays sometimes, that's how it flows.
JennaRae thanks and I will do reading all those posts about it has made me so scared of everything :( hope it's all getting there with you and when do you get stitches taken out? How long do you have them? I thought they would have taken them out before they release you... xx


"I do have a question about sleeping with the bag though. When I lay on my left, stomas on right, is it ok for all the stool to be basically sitting on my stoma for hours while I'm sleeping? The way the bag lays sometimes, that's how it flows. "

Yup, it's fine! After all its an intestine. Let that shit go where it wants darlin....after all it will anyway, no need to stress!

Your stoma will be shrinking alot, so make sure you check your size every time you change. If you dont you will have skin problems and leaks.

Glad your home, i really think you heal so much better in the comfort of your own home than in hospital. Take it easy and get plenty of rest. Lots of hugs your way x
Cheer bear I get them taken out on Thursday. They leave them in for a while because its a high stress area and if you reopen it your in for a world of hurt!
I am SO happy with my decision to do this surgery. Even though the recovery is tough I feel SO SO SO much better! It is scary when you read about it but for me know even in this short time it's been so worth it.

Terriernut, your absolutely right I never thought of it that way. It's usually covered in shit anyways! And it's crazy how much it's already shrunk. It's been getting a bit tender around the stoma so I've been keeping a good eye on it.

Madferrit, thank you! Love your picture, Red is my fav! Lol
Is the recovery hard coz they removed it all at once do you think? Or is it just hard either way whether they remove it all at once or in two stages? I hope it's not as hard as I'm expecting. Hope it's going to be worth it for me.. Hope Thursday goes ok and keep us posted xx
It's not as hard as I was anticipating. My midline incision feels great. It's just th rear end that is taking a while to heal. It's definitely going to take a lot if patience and rest but its worth it in the end.
I think the rear sutures are the worst. You need to rest but your butt hurts so much you can't sit on it for too long.

Cheerbear you will do well. Even though I am still having some issues with wounds it is still way better than the abscesses and fistulas I had.

Have you heard when your op is yet?


Staff member
Glad to hear you're recovering Jenna rae, sounds like you've had a tough time but well on the way to recovery now. All the best.
At least yours have held, Jenna. :thumleft:

Mine tore open because there was so much damaged tissue down there. Blood everywhere because it had pooled up behind the sutures. :yfaint:

They decided, because the hole was so big, to leave it open and let it grow in from the back.
Oh my goodness!!! I am so sorry you had to go through that. My mom keeps telling me, it can always be worse, and she couldn't be more right!
Thanks, Jenna. I'm fine now although, after 13 years, the scarring is still tight and I have difficulty sitting on a very flat, hard surface for any length of time (I take a cushion to funerals!:p). I also need a very wide, well-padded seat with a sheepskin cover on my bike.
I've read on another post that hurts to get them staples/stitches out why is this? It didn't hurt getting them taken out of my stomach last time. My appt to see surgeon has been changed from 26th nov to 19th now to see surgeon:( I don't know what questions to ask him.. So scared and they not doing it yet. x
Hiya Rachel, some people have dissolvable stitches but I am not sure how good an idea that is with a perianal wound. Mine had to be removed and yes it wasn't nice, but it was quick and the results so worth it. Not long till you see your surgeon is it xxx
Susan2 I'm so glad to hear that your better!

CheerBear I have no idea! I've had stitches in other areas too that didn't hurt. I can only assume that it's because it's so sensitive. I'm glad to hear they moved your appointment up. It is very scary but it will be ok.
What I did was look through these forums on proctocolectomy's and wrote down whatever ?'s came to mind like:
How they do the surgery
How long it will take
Recovery time
Chances of hernia and prolapse
Will it affect my sexual function
What complications could there be afterwards
When will you meet your stoma nurse
Those are the only ones I can think of off hand right now
Keep me updated!!!
Hi Kaz I hope they do give me dissolvable stitches but in the same breathe I don't want anything to go wrong. I'm no good with pain! :( It's not long no:( then I get put on waiting list-.- i think he must be on holiday that day so had to bring it forward. xx JennaRae thanks for that hope your getting there how long since you had yours? I've already got my stoma so they don't need to do that part of it xx
All my sutures were dissolvable. Both midline and perineal. Only problem was that the surface stitches healed quicker than the internal ones and then I developed Seroma collections turned into infections and that's about where it all went pear shaped. I have been told that regardless of how they close the perineal wound that there is increased chances of problems especially if you have active fistulising perineal disease. Unfortunately I did, and it is still causing problems. Have to have a sinogram due to a new set of recurring problems with a new section of the bum wound discharging blood and pus intermittently.

Best you can do is be patient and take each day as it comes, sometimes moving ahead in leaps and bounds, other days one step forward and two back but one thing for sure I feel a lot better than I did when I couldn't eat without massive pain and I spent most of the day and night on the toilet. Hard to believe but I think my bum was more of a painful mess then than it is now, and I know that when it is healed it will be a much better model than the old one.
All the best
Hi Janette, sorry to hear you are still having problems. It is common to have complications though, as you said, but it is great not having the pain and running the loo issues. Hopefully it won't be too long before you are all healed. I always think that it is a good thing to have this op out of the way - even if healing is sometimes slow and difficult. Leaving the disease in there could have been so much worse. Good luck with the tests, hope things improve for you. Lots of love, Kaz xxx
Thanks Kaz,
I thoroughly agree. Just patiently waiting for the new improved rest of my life. Taking the time with the hiccups to rethink a few things and to slow down and smell the roses. Lets face it, it is a huge op both mentally and physically, so in some respects the slowed physical healing is giving me some quiet time to focus on the mental healing. All good. I have always been glass half full kind of person, and there is no way I am going to let 'miss piggy' ( Stoma) change this.
Janette xx
Sorry to hear you are having loads of probs hope things get better for you soon. Let us know how you get on. Is it as major as the last one? I don't have patience lol but I will need to have much patience but I had to be patient after the last one coz it took me three months before I could do anything for myself I presume this one will be similar xx