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After surgery do u have problem with stool while sleeping?

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Posted 12/16/2019 3:30 PM (GMT 0)
I agree with the others. The more j-pouches they've created, the better. That should be question #1 when you see a surgeon. smile
Posted 12/16/2019 3:36 PM (GMT 0)
Thank you! (sorry to highjack this thread, ha)
Posted 12/16/2019 4:02 PM (GMT 0)
You certainly do not want Dr Nick from the Simpson's (Any surgery $129.99!) haha. At some point, could not hurt to get a no-obligation surgery consult with a colorectal surgeon who's done a lot of j-pouches. It's a basic question and answer session with the pro. Ask what concerns you, and get answers. Good to have some questions and answers ready. Not sure you're at that point, but here's some questions NSSG came up with a while ago, that I added to the Resources sticky thread (good to get that noodle working):

- How many steps? 3 is typical, but sometimes less are needed.
- How many j-pouch procedures have you performed? You want someone who's done thousands.
- How will my pain be managed?
- Will fertility be impacted?
- What can I expect after the first step?
- What can I expect for long-term outcome?
- Am I a good candidate?
- Do I need additional tests to rule out Crohn's Disease?
- What is the likelihood of developing pouchitis or complications?
- What are the most common complications?
- How many days will I be in the hospital after each step?
- Will I need to prep?
- How long do patients typically wait between steps?
- Will it be laparoscopic?
- What types of scars can I expect and where? How will they look 6-months after all surgeries are completed?

Some questions you might ask the office staff rather than the surgeon himself. Anything insurance related, about access to supplies or ostomy nurse, or about follow up care so far as having a home nurse
Posted 12/16/2019 4:33 PM (GMT 0)
Thank you! I will print these out.
Posted 12/16/2019 6:09 PM (GMT 0)
The only downside with this thinking is, if everyone goes to a doc who's only done hundreds of jpouches, then once all those docs retire there will be no more jpouch surgeons.....you need to get experience somehow.

Mine had done around 150 or so in his life and I'm happy with my outcome.
Posted 12/17/2019 1:09 AM (GMT 0)
I Poop I used Rodney Dangerfield Dr. Dr Vinny Boom Bots. Strange Dr. (just kidding)
Posted 12/17/2019 1:26 AM (GMT 0)
I think the newer doctors work with the experienced ones and probably count assisting toward their #.
Posted 12/17/2019 4:56 AM (GMT 0)
Many of the surgeons work in pairs/teams especially at the teaching hospitals.

I remember the day of one or my surgeries my surgeon came out to talk to me in the waiting room. He had another patient on the table while he was visiting with me (his team was working on the other patient). He told me that the other patient‘s surgery was going to take a lot longer than expected and if I wanted to reschedule for another day.
Posted 12/19/2019 3:39 PM (GMT 0)
My surgeon told me all the suergeons in this area only do 1-3 jpouches a year. She said one guy might do 3-5 per year. I live near Indianapolis. So I don't know where you guys live where they've done thousands.
Posted 12/19/2019 3:58 PM (GMT 0)
I am in southern CA. Some of the members seem to be in the NYC area. Cleveland Clinic is probably the #1 in the country! People sometimes travel a bit to see the best.
Posted 12/19/2019 3:59 PM (GMT 0)
Hmm. That would kind of suck. I really have no support system (other than my cat, lol), so I'd be alone. And I can't leave my cat alone for very long and I hate big cities.
Posted 12/19/2019 4:21 PM (GMT 0)
I was told by local GI doctor that his choices would be Cleveland Clinic, Mayo Clinic, or Northwestern in Chicago when he decided I needed to be evaluated for surgery. I went to Cleveland had an awesome experience and would recommend to anyone. I live in SW Ohio so it's 3 1/2 hours one way to Cleveland, but when they know you are coming from a distance they work hard to schedule pre-tests and everything in one day. During each of my surgery recoveries every roommate I had was from somewhere else: Kentucky, West Virginia, other parts of Ohio. No one was from the Cleveland area. That tells you something, if you ask me.

It was a lot harder on my family, than it was me. We have a small farm so the logistics of taking care of livestock and everything was hard on my husband. But, I'd been in the hospital so much w/ flares by the time I had surgery, that I didn't need someone sitting with me everyday either.
Posted 12/19/2019 4:29 PM (GMT 0)
I think I'm only 3 or 4 hours from Cleveland so that wouldn't be too bad. But I don't think my dad or anyone would come with me if I was out-of-state, so I wouldn't have any of visitors at the hospital, but I guess I really don't need anyone. I'm used to being by myself.

You had to have roommates? Thank you all for the info.
Posted 12/20/2019 12:29 AM (GMT 0)
Chicago might be closer for you.

It depends on the hospital if you have a roommate or not. I went NYP Cornell and we had private rooms with a dedicated floor for colorectal/gastro surgeries, the nurses only took care of GI surgeries and specialized in it. They knew more about these surgeries than most GIs that I have met.

I feel so much better now that I had my colon removed. I was being poisoned by my diseased colon.
Posted 12/20/2019 12:36 AM (GMT 0)
I specifically asked for no visitors which didn’t go over too well with the family but I was there to heal and to be taken care of by professionals. I really didn’t need too much from anyone else. My sister lived about 15 blocks from the hospital so if I did need something then I could have always asked her but I really didn’t need anything.

All you really want to do when you’re recovering from surgery is sleep and sleep some more, and when you’re not sleeping then you’re up trying to walk around the hallways.
Posted 12/20/2019 12:53 AM (GMT 0)
Keith recommended New York Presbyterian/Cornell in Manhattan which is where i had mine.What Keith said helped in my decision.14th floor is only colorectal patients plus you get your own room with great nurses.Keith being i live on Long Island i never had anyone come see me for any of 3 surgeries[4 with hernia] but that was fine with me.Rest Rest and Walk
Posted 12/20/2019 2:48 AM (GMT 0)

Sara14 said...
And I can't leave my cat alone for very long and I hate big cities.

You’re not going to be site seeing in the city. It was a few years but I think all of my surgeries except for one required that I show up before 6AM.

While I was there I didn’t feel like I was in a big city, I was in a hospital.

Don’t let a city stop you from getting the quality of care that you need.
Posted 12/20/2019 2:52 AM (GMT 0)
I know I won't be sightseeing. But travelling in big cities is very stressful for me and being alone far from home is as well. I think having a surgeon who I've known for 5 years, who I trust and being close to home where I can have some friends and family nearby and not have the stress of being far from my cat and in a totally unknown hospital with strange doctors I dont know etc. are all completely valid concerns. Actually, I am not even close to even thinking about getting surgery and hopefully will never need it, so none of this even matters. My actual doctor has never even mentioned surgery to me. Surgery doesn't sound that great, sorry (look at the title of this post!). It's going to be a last resort option for me that I hope I never need.

And no, Chicago is not closer to me. And I would never drive there or want to get surgery there. I went to Mayo for a GI appt the first year I had UC and I hated it there. I used to live an hour from Mayo. I never went back. Huge hospital, felt like just a number, horrible bedside manner from a doctor who spent almost zero time with me, had to see an intern first who wanted to stick his finger up my ass for no reason (I refused; I had already had enough doctor's hands up my butt at that point...).

Post Edited (Sara14) : 12/20/2019 7:34:38 AM (GMT-7)

Posted 12/20/2019 3:35 AM (GMT 0)

Sara14 said...
Surgery doesn't sound that great, sorry (look at the title of this post!). It's going to be a last resort option for me that I hope I never need.

Sadly, surgery isn't great, and I hope no one has led anyone to believe it is. It is something you do because you're 100% out of options, or you want to be done with it all. No one does it for fun! I will say, I've not had any type of issues like the title of this post. I am sure many do, but you also have to remember, message boards are full of people who have questions and problems. Most people who have successful surgeries do not return to post - or they post a few times and disappear. With all of the negatives there are to surgery, there is the huge positive of being free of UC. I love not needing to go to the GI, not needing drugs or future scopes, I love not spending money on it all. Would I have done it if I didn't need to? NO WAY. Am I making the best of it? YES. Can I travel and eat whatever I want? YES. My life has done a 180. I still do not live how I would like to. In a perfect world, I wouldn't EVER POOP, but this is how it is for me. I don't poop my pants. I don't struggle to hold it, I don't RUN to the toilet. I don't let poop hold me back. I don't worry about accidents. I don't make excuses to do things... I live much better than a person with active UC. Not sure if it's better than a person in remission - but definitely cheaper and putting less drugs into my body, plus I eat whatever I want and I stay petite. There are some OK things. Don't let scare tactics define your views. Hopefully, you never have to worry about surgery, but if you do, you might be okay.
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