Pouch surgery

[shazz]

pouch surgery

It looks like it will be having j-pouch surgery in the not too distant future.
UC is totally out of control.
So met with my consultant today and it was the first thing he said!
So my questions are;
For those in the UK how long did it take for you to go from accepting surgery to actually going down for it?
How long until you felt able to go for a short walk?
How long till you felt like and were able to eat proper food again?

I know everyone is different and know that something may go wrong but just so I get an idea.

If you have any suggestions for my hospital bag please feel free to add them to the thread.

Thanks in advance Xxxxxxx

 

[Ian]

Hi Sharon, I don't have answers to your questions (I'm sure someone will come along soon though) but just wanted to say good luck. I'm glad you and they have come a decision on how to move forward and hopefully you'll be feeling better soon!

Have they determined that you definitely have UC then? I know you were scoped recently. Was anything said about those incolclusive biopsies from your T.I.? I very much hope this surgery will be the end of your experience with this disease and that you have a lifetime of wellness afterwards!

 

[shazz]

Thank you Ian.
They have now determined by scope and more biopsies that there is no Crohns in my T.I so that's why we are able to go ahead with the pouch surgery.
Have you got an appointment through yet?
Hope they will get you sorted soon as well.
Xxxxxxx

 

[Ian]

That's great, I'm happy for you! Did they determine what caused that scarring of the T.I then? I'm glad they don't think it's Crohns. That should hopefully mean they'll do your surgery in 2 steps rather than 3 which is good, the fewer times you go under the knife the better!

I had an appointment arranged for 3rd Feb ages ago. The doctor said he wanted to see me in Jan so would book and earlier one but nothing ever came through so I assume there wasn't room and he's sticking with my original appointment. So I'll see him in about 2 weeks.

x

 

[shazz]

They dont know what caused the scarring in my T.I which does worry me a bit but my consultant has said they will keep a really close eye on me after surgery and do other tests if needed before I have reconnective surgery. Which I thought was good.

Hope you get on ok at your appointment. Let me know what he says.

Xxxxxxx

 

[2thFairy]

I just found this thread as I wasn't sure if you had a J-pouch formation or not. Turns out you posted this on the day I was have my J-pouch surgery, so I never saw it. Well, cool....glad I have someone to compare notes with!

 

[shazz]

Yeah will be good to have another pouchie to compare things with.

Are you at stage 2 already then?

 

[2thFairy]

I've only had stage 1, but looking at reconnection here in a month or less (hopefully), as things seem to be healing correctly. I have a lot of pain in what tiny bit of the rectum that remains, but the surgeon reassures me that it will eventually go away. Even the tiny catheter they used to do a barium enema (to check for leaks in the pouch) hurt like hell!

I'm pretty nervous about reconnection. If things don't go well, I have no problem going back to a stoma, however.

 

[shazz]

I have only had stage 1.
Here they do it in 3 stages though.
Stage 1 you have your colon removed through key hole surgery and the stoma is formed.
Stage 2 you have the rectal stump completely removed and the pouch is made and a loop stoma is formed. This is open pelvic surgery.
Stage 3 the stoma is sewn shut and everything is re connected.

Sounds like you have had stages 1&2 done together already.

I am like you in that if someone said its not working or if i can't cope with the pouch having a bag wont even phase me. I really like Ozzie and will miss him when he is not there!

 

[2thFairy]

Yep...according to your plan, I have had stage 1 & 2 already. I have a belly full of adhesions from prior surgeries, so mine was all done as open abdominal surgery with a 16 inch scar---battle wounds..and proud of 'em!

We are some tough warriors with this disease, I tell ya!

 

[shazz]

Yeah we are!

My stomach already looks like a battlefield.

Had my op in february which they did key hole so its not too ba.
Had 2 emergency c-sections and a hysterectomy so that is where they will go in. Its quite good really cause each time they open me up they excise the old scar. Get a tummy tuck for free!
Silver lining!

 

[2thFairy]

Hahaha! This last surgery wasn't so bad for me from a pain standpoint (though I still had complications with the rest of the recovery). Apparently my skin is even more numb than I realized from all of the previous surgeries and I had little pain from the incisions themselves. With that being the case, I don't mind all the scars if it means less pain the next time around!

 

[shazz]

I know what you mean! I had my wheat bag really hot last night on my tummy and couldn't really feel it.
I had no pain at all from my key hole surgery wounds. It was quite nice really as it meant I could get up and moving easier.
Still didn't stop the mother of all pe's though!

 

[2thFairy]

Yeah, you've been through a doozie and then some! I had heart issues, some amount of heart failure, after mine that has slowly cleared up and things are pretty much back to normal in the last two weeks.