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Ulcerative Colitis
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Posted 3/12/2020 3:30 AM (GMT -5)
Yay! Hope you have a speedy recovery and continue to keep us updated smile smile
Posted 3/12/2020 6:13 AM (GMT -5)
If you’re going to cough/sneeze/laugh then hold a pillow over your stomach to support it.
Posted 3/12/2020 10:06 AM (GMT -5)
Just want to make sure you understand that the surgical pathology on your colon cannot definitively rule out Crohn's.
Posted 3/12/2020 11:51 AM (GMT -5)

noodlesnoodles said...
Just want to make sure you understand that the surgical pathology on your colon cannot definitively rule out Crohn's.

There are no guarantees; my pathology came back as UC, my 2 GIs and my surgeon (world-renown crohns surgeon) all said that I had UC but I developed chronic pouchitis/crohns. Other people have inconclusive diagnosises and still go ahead with the surgery and their pouches are fine.

I'd just discuss your options with your surgeon and try to make the best decision for yourself.

That's one of the nice things about the 3-step surgery because it gives you more information and time to make a decision about a j-pouch.
Posted 3/12/2020 12:10 PM (GMT -5)
Yeah I understand it’s not definitive. One step at a time. These gas pains and rectal spasms are for real though! Just got up for first walk and did a few short laps. Gingerly taking time to get out of bed. Feel like I could “poop” out some stuff but kinda afraid to with these spasms. My stoma is quite big, 1.75” it’s a bit harder to get appliance on not to mention all the surgical wounds and bandages in the seals way. One step at a time I suppose.
Posted 3/12/2020 1:17 PM (GMT -5)
Hi I actually had output out of my rectal stump please don't be surprised if it happens. It might be blood and mucus. Later mucus only. Don't be alarmed. This is normal. If you feel the need to poop then poop.

Your stoma will shrink with time. It's traumatized right now and very swollen. That's why you will take measurements each time you change your flange. They will give you all the supplies to start you of with.
Posted 3/12/2020 4:26 PM (GMT -5)
Thanks Andrina. I am already nervous about step 2 at this point, as I’ve heard it’s a much more painful procedure. But, I need to just focus on healing now. A lot of pressure to pee after the foley came out! Still trying.
Posted 3/12/2020 6:29 PM (GMT -5)
The first pee is difficult after each surgery. I usually find that if I just calmly sit there and try not to think about it, it will happen, but after step 1, it was a challenge for sure. My 2nd step wasn't as bad as the 1st.
Posted 3/12/2020 6:31 PM (GMT -5)
NSSG you mean step 2 wasn’t as bad recovery wise?
Posted 3/12/2020 9:18 PM (GMT -5)
It wasn't for me. I know a lot of people say it is worse, but I was healthier going into it and I think I generally did better. The bad part was the loop ileo. Mine was awful to deal with. My end was simple.
Posted 3/12/2020 9:59 PM (GMT -5)
The second surgery took a longer time than the colectomy itself. I don't remember much right after. But nothing too severe happened.

I needed the help from my ostomy nurse with the loop ileostomy and she was awesome and confident. I came to the appointment crying and left smiling because I knew it was going to be better. And it was. I was having leakage problems because I kept using the flat flanges, which have worked fine with the end ileostomy but I needed convex for the loop. Thankfully I didn't have it very long.
Posted 3/13/2020 11:27 AM (GMT -5)
Sevodreams, how are you doing today?
Posted 3/18/2020 6:27 AM (GMT -5)
Good luck with your surgery! I could be right behind you on that as I landed in hospital a week ago with a suspected bowel perforation or deep ulceration. They've scheduled a colonoscopy to take a look because the CT scan was inconclusive. I know that my gastro wants me to have surgery as she's been trying to persuade me since 2014! I think it might be game over for my colon. My only worry is that they won't have enough capacity in the NHS to operate if I need surgery during the coronavirus pandemic :-/
Posted 3/18/2020 11:15 PM (GMT -5)
I'm kinda worried because he hasn't posted anymore
Posted 4/9/2020 9:23 AM (GMT -5)
Sevodreams, it's been quite some time since you last checked in. When you can please come back & update us when you feel up to it.

I hope all is well with you.
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