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Colectomy 27 Dec - advice/caution

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Posted 12/24/2018 7:34 PM (GMT 0)
I will be having all of my colon removed this Thurs. For all of you who have had a partial or full removal, I'd greatly appreciate any words of wisdom or caution you can share with me. I'm sure others in this forum would appreciate it too.

Thanks

JMR
X : = ☺
Posted 12/24/2018 7:36 PM (GMT 0)
No experience...but hope all goes smoothly. Please update when you're able.
q
Posted 12/24/2018 10:58 PM (GMT 0)
Good luck! I'd advise you to walk around after surgery as soon, long, and often as possible. It'll help you heal faster, avoid complications, and feel better.
Posted 12/24/2018 11:47 PM (GMT 0)
Jay i had 3 surgeries this year-Jan 9[colon removal]-Apr 9 and Aug 21.All went well,dehydration is of course a concern so drink,nibble on food in hospital and once u get home.Baby steps.Like IPoop said do your walking which will wake up your body from all anestesia. Seems anyone who has surgery can have minor side efects.,After my first[in hospital] i was having muscle spasms.Dr told me they cut through muscle to get to colon and muscle was having spasms.Dr gave me anti spasm meds and it took care of problem.I had pain med button after first 2 surgeries which will dispense pain meds through IV for u pnce u press button[once every 15 mins].You'll be fine.My year has gone very quickly.Are u having 2 or 3 surgeries???
Posted 12/25/2018 11:45 AM (GMT 0)
Two surgeries.

3timechamp - How do you feel now? Are you back to being as active as before surgery or do you still have a lot more healing? You already feel there has been a major boost in quality of life or is that still always off? Sorry for all the questions. I'm getting jittery. Maybe having pre-colon separation anxiety.

Thanks.
Posted 12/25/2018 2:12 PM (GMT 0)
Ask as many questions as u want. Quality of life is a total 360. My life revolved around my UC before surgery The last 6 months the prednisone kept the imflamation down just enough to where I could work But stool was spitting out. Barely anything formed so I knew it was time for surgery. Had UC for 32 years. I can do anything now without fear of having accident. Just went to hockey game in NYC on train. No anxiety. Amazing. You get your life back. I'm normal again. I developed a hernia on my surgical incision. I'm a contractor that works with my guys so maybe too much lifting???? Surgery will correct hernia. Better let my guys lift more then me. Overall it was great decision. Why do u need surgery???
Posted 12/25/2018 3:02 PM (GMT 0)
I've had UC for over a dozen years. Within that time, UC medication has resulted in kidney stones and Hodgkins lymphoma. Given this experience, I won't take any more meds and I have a fear of colon cancer, which I feel is not unfounded. Add on the many minor and major flares I've been having, I have had enough. I want control of my life and not to be enslaved by the porcelain god anymore.
From what you wrote, it seems that I've made the right choice to have the surgery. I anticipate complications, but from everything I've read, it all works out.
We'll see if I'm still whistling this tune on Friday.
Thanks
Posted 12/25/2018 4:52 PM (GMT 0)
Jay I could of tried Humira or Remi but they lower your immunity. I lost my spleen playing football when I was younger and spleen helps fight infection and immunity Now I just turned 60 and meds could of delayed surgery but getting colon removed later in life didn't appeal to me. After first surgery surgeon said colon looked really bad/inflamed/diseased whatever words u want to use. Then I knew I made the right choice. I wasn't to worried about life after surgery. To many people had positive results. It really is a very easy adjustment for me. I don't sit at home worrying will everything go right. I get up and move. Now did I move too much and now I have hernia??? Yea it's possible. Prob too much lifting/moving etc etc. Surgery in Jan for hernia. Have to be more careful Again you will be fine. U want to rest in hospital. Pain meds serve a purpose to help u relax and be comfortable/no pain. Now u will be told to walk/no marathons but little walking is good. Where r u having surgery???
Posted 12/25/2018 7:50 PM (GMT 0)
Order free samples of ostomy supplies while you’re in the hospital so they are home when you get released.

Ask for some magnum bags because you’re starting with a loop ileo. I liked a convex wafer (important for the loops), barrier sheets and protective strips. I wore a belt with my loop.

My favorite ostomy brand was coloplast.

I felt better after I woke up from my colectomy, my colon was poisoning me from the inside.
Posted 12/26/2018 3:46 AM (GMT 0)
Merry Christmas! Good luck with your surgery. I had my final surgery (3 step) last September. It’s been a rough and memorable year. So glad I did it though. Like others, I felt so much better after the first surgery. There’s a link in my signature line to my full story if want to know all the details. The bottom line is I got my life back. And while with a j-pouch is far from perfect, I feel a thousand times better then I did when my UC spiraled out of control. I would recommend making sure your surgeon has a great track record. I went to the best dude in my region and I am so happy I did. You only get one shot at this so you might as well stack the deck in your favor. Also, patience and a good attitude is critical. Good luck! You’re about to get your life back!
Posted 12/26/2018 4:34 AM (GMT 0)
Best of luck! It's not an easy procedure but, for me, I feel like I got through it as best I could. I had 3 steps so it may be a little different, the loop ileo is really a hassle, at least mine was. If you're having 2 steps, you will get through it all much quicker. I agree with Keith, getting samples is great, but also getting familiar with the appliances is good. Are you meeting with the nurse ahead to get marked? Mine gave me a kit with supplies. it freaked me out, but at the same time, it was good to see what I was actually dealing with before it happened. I don't want to sugarcoat it, it's not easy. Waking up from that first step was tough and I didn't feel "great". I felt liek I always did, with a lot of pain in my abdomen - and I've always felt quite bad, so it wasn't some life altering moment of "wow I feel fantastic". At the same time, the doctors and nurses were great. they asked how I was and managed my pain quickly. I had nerve blockers, which was necessary for me since i am allergic to pain killers. I am thankful the staff worked with me to make it all tolerable. Life after surgery has it's moments, but for the most part, it's so much easier. I am a lot happier and I Live a lot better in my opinion. So, I might use the toilet here and there at not the most convenient times, but at least I am not worried about drugs, doctors and a mess - it's more than I could have hoped for... My story is in my signature.
Posted 12/26/2018 6:14 PM (GMT 0)
Jay let us know how your doing.Dr and nurses are there to help-use/call them as needed.Let me know if they give you pain button? Good luck my friend.Hey visiting nurse ordered my supplies i needed for bag/wound.I had 2-3-4 visting nurses at start but asked the best one to be my main nurse and she was.It all went well

Post Edited (3timechamp) : 12/26/2018 11:32:40 AM (GMT-7)

Posted 12/26/2018 6:31 PM (GMT 0)
Thank you all for your words of encouragement, support, and guidance. I feel a lot more at ease and prepared.

Prep time now, so the rest of my day ain't gonna be fun. We're all seasoned people when it comes to the colon prep. It'll be a shame to rid of something that's so clean ; ]

More to come.

Thanks
Posted 12/26/2018 6:37 PM (GMT 0)
Drink it like champagne[only joking].Its the last time u will need to drink it[at least as far as my Dr orders].Jay where r u having surgery??? Im in New York,hospitals in Manhattan are good as far as colorectal surgery.
Posted 12/26/2018 7:07 PM (GMT 0)
The procedure is at John Hopkins. The surgeon has a really good reputation and patient rating.
Posted 12/26/2018 7:22 PM (GMT 0)
Baltimore i presume??? Great hospital with a great reputation.Your orders are to relax,rest,walk a little.Watch a Ravens or Redskin game on Sunday if your a fan.Be careful if you yell at TV if your team commits a bad play,no yelling while in recovery. You'll be fine,nurses will help u with bag.Bag becomes easy over time.Good luck and send us a post when u can
Posted 12/27/2018 1:24 AM (GMT 0)
If you cough, sneeze, or get up from bed then I recommend putting a small pillow over your surgical area(hold it) for support. Also for the car ride home.

Some people can give you good advice about waking up your bladder. It could be tricky.
Posted 12/27/2018 3:03 AM (GMT 0)
I had chapstick and hand cream with me in the hospital. It was so dry. I like to have a lot of water available to me too - once you're cleared for it. I found muscle relaxers to be helpful in addition to pain medication. I have allergies to pain meds so i needed zofran. If you feel nauseous, ask for something! Definitely speak up for yourself and don't wait. If something doesn't feel right, ask questions. It's very hard to sleep the first couple days because they are checking in on you constantly. Don't be scared to use the pain pump when you need it. Anytime i needed to get up, I would use it 10 minutes beforehand, until I didn't need it anymore. Being able to get up is the key to getting released. Let the nurse teach you how to get up without causing strain. One of mine showed me how to roll and sort of pull myself in a way that was much easier. You will do great. Good luck tomorrow. Update us asap.
Posted 12/27/2018 3:28 AM (GMT 0)
Somethings that I wasn’t prepared for:

1) Ileus — my digestive tract didn’t wake up right away from surgery, it took a couple days with some nausea and vomiting. This can be common for some people. It goes away with a lot of walking and time. Gum helps some people.

2) mucus out the back end. I didn’t realize that I’d have to go to the bathroom like once a day due to the rectum producing mucus. This is normal. Some days more than others.
Posted 12/27/2018 9:35 PM (GMT 0)
I’m about 5 weeks post takedown. I had my jpouch done in 2 steps. After my first step, things were good the first few days but then had illeus (intestines don’t wake up). Had to have an NG tube for about 24 hours. It wasn’t fun but it did make me feel better. Try to walk as much as possible. Watch your nurse change and empty your bag and start practicing when you’re ready.
I wish you the best!
This forum is a wealth of info not always found in the hospital!
Posted 12/28/2018 1:08 PM (GMT 0)
All went well. Needle went in my arm and in a blink of an eye, I woke up 5 hours later in the recovery room. Amazing how that works.

No issues or complications. My colon and bladder are up and functioning, and I have a wicked appetite. I may be able to eat pureed food for breakfast. I'm thinking the sausage, scrambled eggs, and waffle mix. Wonder if it would taste food in coffee?

Definitely not what I anticipated after only one day, but maybe I shouldn't be so optimistic.

Today I learn how to manage the bag and my new body baseline. Seems like it'll be an interesting journey.

Again, thank you all for your support and helping ease my anxiety.
Posted 12/28/2018 1:31 PM (GMT 0)
Be very careful eating. My small intestine worked and then ileus happened. It happend to me with two surgeries.

I’m happy that all went well.

Remember that you still have a good amount of anesthesia in your body the first 24-36 hours. Sometimes the 2nd day is harder than the 1st day after surgery.

Walk if you can
Posted 12/28/2018 3:18 PM (GMT 0)
Colon and bladder are up and functioning???? Colon was removed correct? Eat light. Very light. Take things slow

Post Edited (3timechamp) : 12/28/2018 10:14:13 AM (GMT-7)

Posted 12/28/2018 7:16 PM (GMT 0)
Sorry, I meant to say my digestive system, not my colon. Had solid food and everything is ok and hopefully remain so.
Posted 12/28/2018 8:27 PM (GMT 0)
Gotcha-Wow solid food already? i think i got it on 2nd day and i only ate mashed potatoes.Funny once i came out of anestesia i wanted to text family,friends etc but i couldn't focus enough.Just take things slow and u will be fine.Bag usually last from 3-7 days,have someone show u how it goes on/off before u leave hospital.It takes a few times for u to do it before u get comfortable with it Good luck
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