First Major Surgery

You just be there. 

It was mine too. 

I don't remember needing anything. 

If he's having his colon removed like I did it's a jolt. That's for sure.  Slippers is all I can think of so he can walk if they let him. Personally I didn't need anything right off the bat but morphine. 

If he is having it removed he will be hooked up to bags for both. So he won't be able to get up anyway. That's how mine was. I didn't come out with an appliance on after surgery. I was hooked to a large bag on a cart. Along with miscellaneous other tubes and lines. 

Richard. 

I came out with the bag after my surgery.  I wasn't really shocked by it.  But it does take time to get used to.  I had an ostomy nurse come to the house for a few weeks until I was comfortable changing the bag.  There should be a nurse at the hospital to assist in the beginning.  I think by the second or third day I was able to walk around with assistance.  I went in on a Monday and was discharged on Friday.  Elastic pants/sweatpants worked well for me.  I was pretty out of it for the first two days from what I remember.

You might want to bring chapstick because it can get pretty dry in the rooms.  I really didn't bring a lot with me.  I think I might have had my I Pad.

Bring something to keep yourself occupied if/when he’s just sleeping. A good book, perhaps?

Thanks everyone.  I will keep you guys posted.  

The Ileostomy bag is a big adjustment. The hospital should have a ostomy nurse, but I think a visiting nurse is a good idea. I could never get a good seal on my ostomy bag like the nurses did, and that is really critical.

You being there will be very important. I had the operation when I was in my 20s. I was still living with my parents at the time. They drove 1.5 hours from Connecticut to New York City to be with me every day. The surgery was even more major back in 1992, due to the laparoscopic option not existing at the time. I had a lot of post surgical complications, but survived them. I can’t even begin to say how much it meant for my parents and other loved ones to be with me every day. 

Smartphones did not exist back in 1992, and the internet had not yet been invented. I remember we watched a lot of TV and what was on TV mostly when I had my surgery was news coverage of the Rodney King riots in Los Angeles.

I was also lucky that I had a roommate who was a good guy and an attorney like myself. I was just getting started and he had just retired and sadly was dying of leukemia, but I spent the last two weeks of his life with him as he shared his retirement dreams with me, as well as looking back on his career. I still think about him to this day.

I was also fortunate that the surgery was done in Mount Sinai in NYC, which at the time was a colectomy and J Pouch factory.  I had the chance to speak to many other patients on my floor, some of whom were at stage 2, so I knew what to expect. 

Things have improved so much in 2018 from what I had done in 1992, so I am sure your husband will do well. I am now coming up on 26 years with my J Pouch, and the surgery was a real game changer for me in battling IBD, which I have done since age 9.

best wishes-

I’ll echo a point CT made: your being there is profoundly important and valuable. I was very fortunate that my wife was able to spend each hospital day with me. Although I was “well prepared” for the procedure, I was also frightened, uncomfortable, angry, and in poor control of myself and (especially) my environment and circumstances. I have no doubt that I was difficult to be around, and she nevertheless provided an anchor when everything else seemed untethered. It was about 16 years ago and I’m feeling strong emotions as I write this. You are the gift.

Scott F posted:

I’ll echo a point CT made: your being there is profoundly important and valuable. I was very fortunate that my wife was able to spend each hospital day with me. Although I was “well prepared” for the procedure, I was also frightened, uncomfortable, angry, and in poor control of myself and (especially) my environment and circumstances. I have no doubt that I was difficult to be around, and she nevertheless provided an anchor when everything else seemed untethered. It was about 16 years ago and I’m feeling strong emotions as I write this. You are the gift.

Hi Scott

We will be married 30 years in May.  Wow!  I am filled with emotion from your last comment!!!  He has always been my rock.  Now it is me who has to be his rock.  

Scott is right. 

My wife was there everyday. Every night. Without her I don't know what I would have done. It was bad enough but not having someone at your side or just there means so much. I still thank her for being there and who she is. Not  many would do what she did to help. 

I was at my lower point in my life. So many things went wrong. No one's fault. And it won't happen with your husband.  

She showed up dog tired and did things the nurse should have done  with no complaints. 

I feel the way Scott does.  Without her I wouldn't be me.

"you are the gift" 

I was fortunate that my wife could be with me for the full 21 days I was in the hospital for BCIR surgery.  There was a pull-out bed for her in the room.  It was important for her to go out for long  walks and shopping, but she was always back to walk with me in the hallway and to have meals provided by the hospital in my room.  I was so thankful she was there and put up with me when I was in pain.

I couldn't have slept without earplugs and eyepads.  Simple items, but hospitals can get crazy noisy, especially if there will be a roommate.  (I didn't get enough drugs to put me out after the first day).   Also take him a sweater or robe for when he starts walking the halls.  Where I was, it was always chilly and the gowns were no where near warm enough for hall-walking.  

Also, I'd suggest a note pad and pen to be sure to track whatever the drs./nurses tell you, and to take down any other notes regarding how things are going for your husband.  

We were 3 hrs. from home, my husband got a hotel room a block or 2 away from the hospital;  we agreed he wouldn't be staying overnight -  I was usually "out" for the night, and there really wasn't enough room where I was.   He'd come early enough for the doctors' rounds, and stay for the day. 

We also asked the nurses for a big, comfortable easy chair, which they accommodated us with and helped with his comfort during the day.  You must take care of yourself as well!

I hope it all goes well for you both, and will send positive thoughts your way.

Yes. Ear plugs. I used those. Forgot!

I was also in the hospital 3 consecutive times. 15-18 days each. 

On my last venture they offered an air filled mattress. Omgoodness. Made a world of difference. Pillows. I had four pillows. One on each side and two for my head. I was in a long time. Nurses though I was crazy. But inwas a comfortable crazy. 

Richard.