Total pelvic extenteration tomorrow

Hi Kontikitoo 

I’m glad you’re through surgery but sorry to hear you’re back in hospital.

I had this same fluid build up, called a pelvic collection, where everything pools in your pelvis. I had a CT scan while still in hospital which identified it. I had a foul smelling discharge which literally poured out of me when I stood up, 

The decision was made not to intervene, but to let it drain naturally, so I needed to have a nurse walking behind me when I was being helped to the shower whose job was simply to clean the floor as I went! 

This did continue for what seemed like a long time and the smell was horrific. Now, 4.5 years on, I still have some discharge so I still need to wear a pantry liner every day. It is not much, but still there. I mentioned it to my doctor quite recently but he wasn’t concerned and said it was normal to still have this. I was never warned about this at the time of my surgery so it’s a little bit of an unpleasant lasting after effect! But it’s a small price to pay to be alive. 

I had a small wound infection on my tummy where my incision looked a little open, but this cleared quickly with antibiotics and daily dressings. Did you end up with 2 stomas? 

I think that whole body pillow was the best investment I ever made, so I’m glad you’re finding it helpful. Hope you get some answers on the fluid build up-that was one of the worst things for me I think. 

Sarah xx

How rotten for you,I hope the hospital can do something to help.Sending a virtual hug.Love Jane xx

Hi Sarah,

Yeah that sounds like the same thing happening to me. I had my scan last night and it's definitely showing some pooling and like you they are not going to intervene as it's finding a way out naturally.

I haven't needed a nurse entourage yet but it can suddenly gush and I feel like I am constantly changing my pads to keep on top of it! Not pleasant at all and very stressful at times.

I wasn't aware it could be long term, but like you say it's a small price to pay! Fingers crossed it clears up soon.

Yes I do have two stomas. One is so close to my wound, it stresses me out changing it but I've figured out that by cutting my hole off centre it keeps it away from the wound edge. I'm still making the odd rookie mistake but overall they have been ok.

My wound opened almost the whole length so it was pretty gruesome looking to start with, but they have treated it with honey and it's really come on loads in the last few weeks. Pretty amazing really. Again I'll be happy when that's healed as it's one less thing to worry about.

As much as I knew what to expect, nothing prepares you for how it all feels emotionally and physically....it's certainly a big slog at times!

I'm just looking forward to being able to get back on my feet more and feeling 'normal' again.

x

Thanks Jane, they are definitely doing their best and I feel fortunate to have a good team here x

You sound like me.

After my TPE, I had a huge build up of fluid in my pelvis that was leaking out all available spots. They ended up placing a drain. 

The cause turned out to be a leak or fistula from the small bowel where they took a piece to create the urostomy. We've recently learned there's a second fistula from somewhere in the urine system that is also leaking into the pelvis. Sigh...

I'm still waiting for these to heal and may need a minor surgery to repair. I don't have a good ending to share since I am still "in progress" but I can completely relate to your situation.  

FWIW, even with the fistulas, I am feeling better everyday.  I even feel OK with a potential surgery after having had a complete meltdown when it was first suggested.  I was much too sick at that point to face it. But now that I feel better, the idea isn't so awful. 

Awww Susan, really sorry to hear that. It's a big enough surgery without all the added complications.

My leak is currently via my vagina, so fingers crossed it continues to drain on its own but who knows!

I knew there were lots  of likely complications you just hope you skip the worst ones.

I am feeling better in hospital and at least I'm not turning a lovely shade of grey / green at the moment from feeling so sick!

Lol, it's funny how different the doctor's approaches are. My fistulas were happily draining via my vagina and anus but they wanted to stop that. So the drain was put in. I still drain a bit on my own but most of it goes to the drain they inserted. The inserted drain is much more manageable.

I was naive about the likelihood of complications. But even if I'd known everything in advance, it wouldn't have changed anything. Surgery saved my life. 

I'm glad you are feeling better. I hope this continues to improve and you can go home soon. As Kermit the frog would say "it's not easy being green" lol. 

I've definitely been green a few times and it definitely wasn't easy