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Surgery Scheduled for this Friday

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Ulcerative Colitis
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Posted 1/9/2019 3:11 PM (GMT 0)
After 3 months on Xeljanz, my GI did a scope on me yesterday and the results were bad. The second I saw those pictures I knew there was no saving that anymore, just so much inflammation and so many polyps. I was able to get a consult that afternoon with the surgeon who my GI recommended and I have been researching and he agreed that I should have surgery as soon as possible. So, after years of pain and accidents and putting my life on hold, I'm finally getting this horrible colon out of me on Friday. It will be the first of three steps. New year, new digestive tract! Wish me luck!

Any advice on the things I should bring to the hospital with me? I've never stayed at a hospital before.
Posted 1/9/2019 3:53 PM (GMT 0)
Good luck!! I’m sure there will be rough spots (May they be few and quickly resolved), but how freaking awesome is it going to be to have your life back?!?? 🙂
Posted 1/9/2019 4:21 PM (GMT 0)
Yes! After failing so many meds, I'm excited to finally be doing something that will 100% change things.

Btw, I hope you are on the mend from your bout with Xeljanz. It turned out that my worsening symptoms weren't from the Xeljanz but was either a really bad cold or the flu which ended up irritating everything. Ugh, I won't miss a suppressed immune system.
Posted 1/9/2019 5:07 PM (GMT 0)
Cloudy 1 year ago today i had surgery #1,then #2 in April and #3 in August.I wasn't an emergency case but my last colonoscopy was a horror movie so i took the surgery plunge which both my Gastro and my Surgeon agreed was good choice.Your going to feel dehydrated so try to bring your favorite drink with you if possible,IV will help you after surgery its just once you get home you need to hydrate often.Colon absorbs most if not all liquid we intake so once its gone u need liquids.I don't worry about that anymore since i eat healthy and often as needed.So good list is liquids,pretzels[salt is good-u will be on clear liquid diet for 1-2 days].Where r u having surgery???
Posted 1/9/2019 6:16 PM (GMT 0)
Thanks for the advice, 3timechamp! I will be at Mt. Sinai.
Posted 1/9/2019 7:45 PM (GMT 0)
I brought my kindle/tablet/phone to pass the time. A few pair of pajama bottoms to wear. They are great when you get up to walk (at least I felt more comfortable having pj pants on while strolling the halls). I bring my own toiletries, toothbrush, toothpaste, deodorant, etc. The hospital will supply these if you don't bring them but I just prefer to have my own stuff there. I think that is all I brought with me. During my hosptial stay for my first surgery, my surgeon made sure I had a bottle of gatorade brought with every meal so I didn't get dehydrated. You can always buy the powdered stuff and bring that with you to mix. I felt better drinking that even though I had the IV for hydration. Good luck with your surgery!!
Posted 1/9/2019 7:47 PM (GMT 0)
Your life is about to get much better. It’s almost been a year since I had my first step surgery (1 of 3). Like you, my colon was in rough shape and my quality of life was literally in the toilet. My full story is in the link in my signature block. Long story short, I’m close to 4 months since my final surgery and life is good. Recovering from the surgeries are ROUGH, no sugarcoating it. But, honestly I felt so much better having my demon colon out of me. Here are my top four points of advice I would give myself if I had to do it again:
1. Stay Hydrated - most of my problems came from not drinking enough. This was mostly an issue after step 2 and 3 for some reason
2. When your ready to walk, do it. After a few days, I was going on 3 or 4 walks a day. These really helped with everything from healing to mental sanity.
3. Get a good support belt for your ostomy bag - I used a stealth belt and turned the bag sideways (worked great with a coloplast 2 piece system). THis worked the best for me, because any weight in the bag felt like it was pulling on my incision / stoma and was painful. The belt thing just held it close and I didn’t have to worry about tucking it into my pants or anything.
4. Be patient and positive - Realize this is a major surgery, It’s going to take some time, and there will be bumps along the way. Looking at it positively is going to make a night a day difference.

Surgery gave me my life back. I would do it again, no question.

Good Luck! You got this!!
Posted 1/9/2019 7:48 PM (GMT 0)
In Manhattan??? I had mine at New York Presbyterian. Plastic Surgeon has his office in hospital so I'll be there tomorrow. Your main goal is to relax. You should have a pain pump button with u. Stoma nurse will stop by to help with bag. Bag wasn't big issue. Once u get hang of it it's pretty easy. Keep posting how your doing
Posted 1/9/2019 8:02 PM (GMT 0)
Good luck, I bet you'll love the new UC-free-you, and enjoy finally putting UC within the rear-view-mirror. Let us know how it goes once you feel well enough to post!
Posted 1/10/2019 1:19 AM (GMT 0)
I had my surgeries done NYP Cornell. I haven’t been to Mount Sinai since 2008 but I’m having a pouchscope there tomorrow. My GI moved back to Mt Sinai from NYP last year.

Good luck. Get up and walk around as soon as you can. Order free ostomy supply samples from the manufacturers so you have them when you get home. I liked coloplast, they make the best accessories.

Bring some noise canceling headphones. I’m not sure about the surgery patient rooms at Mt Sinai.
Posted 1/12/2019 2:44 PM (GMT 0)
I had my surgery yesterday afternoon and everything went well. One of the doctors remarked that my ostomy was the best she's seen! I'm not in much pain at all yet. I have only had to push my pain button once when they switched my bed. On clear liquids now and we're going to try walking a little later. Honestly, I feel better than I have in 3 years. I'm so grateful.
Posted 1/12/2019 3:20 PM (GMT 0)
Glad everything is going well! Enjoy being UC free.
Posted 1/12/2019 4:26 PM (GMT 0)
Good news that all went well with surgery....
Wishing you a smooth recovery!
q
Posted 1/12/2019 8:56 PM (GMT 0)
Are you up and walking? Usually the 2nd day is the worst in terms of pain because the anesthesia wears off.

Walking helps the recovery. Hold a pillow over your abdomin to give yourself support when you stand up, sneeze, cough, or get in a car (under a seatbelt).

Order some free ostomy supplies so they are waiting for you when you get home. Get ostomy accessories.
Posted 1/12/2019 10:11 PM (GMT 0)
Cloudy take it nice and easy. Is your incision vertical in front of stomach or horizontal next to belly button??? Baby steps for awhile. It's going to take a good 7-10 days before u move around easily depending on size of incision. Take advantage of time in hospital for people to explain things and help u. Make sure they come in to set up visiting nurse. You won't be 100% for awhile so having nurse come by is a big plus
Posted 1/13/2019 1:04 AM (GMT 0)
I have taken 3 walks so far today. It's only painful getting in and out of bed but I've been refining my technique so hopefully that gets better and better.

My incision is horizontal next to my belly button. And yes, they have mentioned that I will have a visiting nurse when I get home.

Also just a silly vent but my roommate's dad brought a gyro in our room to eat for dinner and told her that he did it to make her a stronger person. What kind of jerk brings delicious smelling food to a room with people on liquid diets?!

Post Edited (partlycloudy) : 1/12/2019 6:09:04 PM (GMT-7)

Posted 1/13/2019 1:13 AM (GMT 0)
Great. Yea those hospital beds can be high off ground. I had vertical large incision-42 staples-OUCH. Was scary moving around at first. Like I said Baby Steps. Your the boss. You decide when u Walk,eat etc. Nurse gave me Melatonin to help me sleep in case u need it. Do u like football??? Playoffs are on. Helps pass the time. Good luck and post when your up to it
Posted 1/13/2019 1:16 AM (GMT 0)
Person in your room had Colorectal surgery also??? Yea bringing food up not great idea. Some people are clueless and afraid to ask what patient can have/wants??
Posted 1/13/2019 1:34 AM (GMT 0)
Yeah, I'm in the colorectal wing so she's in the middle of her jpouch surgeries too. She can only eat ice chips because juice and broth were making her nauseous. She even complained to her dad that the smell was making her feel nauseous. Apparently, her dad didn't care at all. Some people...
Posted 1/13/2019 2:14 AM (GMT 0)
Glad to hear your surgery went well. All good thoughts for a quick and uneventful recovery.

And may your roommate’s father step on all the Legos.
Posted 1/13/2019 2:15 AM (GMT 0)
Maybe Dad can stay in for some brain surgery
Posted 1/13/2019 5:46 AM (GMT 0)
You sound like you are handling it rather well, good for you. Its a long road but one with a quality of life at the end. I would take baby steps just to make sure everything heals inside. I had a difficult time getting in and out of bed without feeling like my incision was on fire. For me within a few weeks I was able to function well. Good luck with all the surgeries keep us posted.
Posted 1/14/2019 1:11 AM (GMT 0)
PC,

How are you feeling? Are you walking more?

I would have thrown a fit about that father in my room. It’s your room, if you have problems then contact the nurse. I don’t have patience when I am sick.

That’s pretty tough, having major surgery and having to share a room. Good luck. I stayed at Mt Sinai twice and each time I asked for new roommates.
Posted 1/14/2019 2:02 AM (GMT 0)
I'm glad you're doing well! Regarding the dad and the food.. sometimes watching someone you love go through this disease and the surgeries is very tough and people cope in all sorts of ways, blanking it out, excess eating, etc.

Post Edited (Virdent) : 1/13/2019 7:05:01 PM (GMT-7)

Posted 1/14/2019 3:22 AM (GMT 0)
Keith you had your initial colon removal at NewYorkPresbeterian???
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