May be shouldve been in hospital sooner...

Hope all goes well and you recover quickly.

Good luck with your surgery. I was really scared to have surgery. It came down to no meds were helping my flare and I couldn't live like that anymore. The day after surgery I felt great. Yes there was pain but I didn't feel "sick" anymore. It was the best decision I ever made regarding this disease. I had my second surgery in August and will have the final reconnection surgery in November. The only issue I had with my stoma is, they marked it too close to my belly button so the wafer needs to be cut around it. I have to change it every other day because this is the first spot it begins to peel up at since there is less there to work with. Other than that the bag is easy to deal with. Keep us updated on your surgery and recovery!!!

Good luck. I used to think about all the "what ifs" and I've learned to accept what happened. It took a long time, but in some ways, I feel like it's for the best. I wasn't so great at living with a chronic illness. it stressed me out wondering what would happen, if I would need more drugs, what if I was uninsured and couldn't pay for drugs/doctors, how would I support myself with all these ups and downs. I was missing out on life - always making excuses. I also worried about the long-term consequences of prednisone and other drugs. I am thankful to be done with all of that. Of course, there are trade-offs. Life without a colon can be challenging. I get up in the night to go. It's noisier... It's easy for me to accept the trade-offs because I was living so poorly with UC. I was in an 18 month flare up that rendered me nearly unable to eat, and I was not enjoying life. When I did eat, I was so restricted as to "what I could tolerate". Now I eat whatever, whenever i want.

It is daunting, but you will get through it, and get your life back. I eat mushrooms and coconut, but I am reconnected. It may just be temporary that you have to avoid those items. I hope so! I love mushrooms and coconut too.

Are you doing 2 steps or 3? Did you meet with the surgeon yet? Did you have an upper scope?

No theyve not mentioned upper endo.
Im just bleeding so fast st the mo theyre trying to get my hb up with transfusions to make me stronger for surgery.
I havent yet spoken to the surgeon who will actually be doing it yet but the other surgeon said i could either have a permanent ileostomy or they could do a temp one and rwverse it later. I dont know yet what i want!

Thanks quincy. Yeah i guess I'll just have to see how i feel about it once im used to it and take it from there!

Three steps can be good because you get to try out the end ileo. The loop is not really a good indication of what it's like to live with an ileo. The loop has very fast transit and you can get dehydrated easily, they also block easier... With my end ileo i could live very normally. It was quite nice, and it was fairly quick that i went from very, very ill to feeling okay.

The immediate aftermath of the first step is difficult though. The hospital managed my pain very well, but the first few days are very tough. You may be crampy and uncomfortable and you have to push yourself to get up and try to move around. Although you may find the end ileo easy to manage, you will still have your rectum at that point.

Some UCer suffer with proctitis in the rectum even though they are disconnected. it can be mild, or severe. For me, it was mild and meant going to the bathroom in the morning to release whatever was in the rectum. Other people i know had a harder time, they suffered with tenesmus and bloody discharge from the bum. It's all temporary though, that's what's important to remember.

I felt a lot of relief after meeting with the surgeon who was doing the procedure. I knew he was qualified, and he was confident he could help, and that my quality of life would be better. Here I am living my life again!

I did an MRE prior to surgery. I don't remember what the prep was, but I do remember when I showed up for the test they gave me a bunch of barium to drink. It was nasty and it made me have to poop. omg. What a terrible day that way. You're in the hospital so at least you won't have to go very far. I had to drive home. i was scared i would have an accident.

Feel free to ask me if you have any questions

I remember having those same fears about surgery. This forum was very helpful reigning in my fears and giving me realistic expectations. I just had my third step (takedown) a little over a week ago. Like a lot of people, I was too sick and had been on prednisone for too long to be considered for the two step surgery. Honestly, the day I woke up from that first surgery, my life started getting better. I was sore and beat up from the operation, but man, I wasn’t sick anymore. So now, that day (Feb 22) is my new birthday! Although, these surgeries are anything but a party, they have given me my life back.

Sounds like a good plan. Focus on healing and feeling better after this surgery. You'll have many months to decide whether you want to keep your end-ileo and appliance, or go the j-pouch route. The end ileo-you can definitely try before you buy it, a rare luxury to have ;-)

Good luck on your surgery tomorrow! Let us know how it went, once you feel well enough to do so!

Just finished 3rd/last surgery in August. Everything went well. Good luck

Ps my surgeon just said he does them open. Im ok with that. Its the nhs!