Hello all. Never been the message board type, but why not start now?
This site has been great for me over the past two days. Wish I'd found it sooner.

In for Stage 1 tomorrow morning. Diagnosed back in 2007, Prednisone on and off since then. Had to stop Lialda due to elevated kidney function. Remicade and others not worth the risk due to my cancer history and lack of data for people in my situation. (I had leukemia, treated and in remission in 2006.)


Looking for any advice for tomorrow and the following weeks. Particularly interested in the "little things" the hospital staff doesn't tell you beforehand. What's one thing I should know?

And also, how soon before I can play golf again?

I'd have to say...

don't leave the hospital without changing your ostomy bag yourself a few times. Be comfortable changing it yourself before you leave.
I was up and about within one day after my surgery; and back to walking my dogs a week later (I was healthy going into surgery...big help). Most people need about 3-4 weeks before they get most of their strength back. Just listen to your body and take it easy.
The first step was the best for me. I went from being sick with UC to forgetting about my illness altogether in one day. It was the best feeling in the world.
I hope you have a textbook surgery and speedy recovery!

Get up and walk as often as possible after surgery. You are not going to feel like it, and you will be especially uncomfortable getting up and then in and out of bed. Ignore the discomfort.

This minimal exercise will facilitate the return of peristalsis. The sooner that peristalsis returns, the better. If your intestines shut down too long I can assure you, things can get highly unpleasant, and I can personally attest to this. I did not walk around enough and took too much pain meds and I paid the price.

They will tell you to get up and walk. Don't take that advice lightly.

Good luck!

Thanks to you both. I'll now return to flushing out my system. (Which is basically just like every other day!)

Just wanted to say good luck to you and I hope that all goes smoothly!

I hope that you notice an immediate difference to how you feel generally like I did - what an improvement.

Advice - Dont get frustrated and upset with the Ileostomy - you will figure it out soon enough! Also - use your pain meds!

Best wishes,

Clicky

When you are discharged ask the nurse for some supplies to bring home with you. They are the best quality and will save you some money and time.

Dehydration, especially now that it's summer. If you're getting a loop ileostomy, you may be chronically dehydrated. This will make you feel very tired. Also, it may take months before you start feeling energetic, so don't worry too much if you don't feel well straight away. Judge your progress by weeks or months, not days

Best of luck tomorrow. I hope everything goes smoothly for you.

Also take it easy with foods at first. Stuff I ate when I got home was cereal, yogurt, toast, applesauce, rice, ice cream, bananas.
After a week start trying out different stuff. Do not go over board though.
After three days out of the hospital I started to feel fine and thought that Steak N Shake was a good idea. I ate too much, plus I was dehydrated and my intestines were still somewhat swollen from surgery which caused a blockage and I had to go to the hospital for a couple of days.
Soon though you'll be back to eating what you want. I can eat Mexican, Chinese, stuff with beans, cheese, etc. Don't be surprised if you start craving odd stuff. If I'm cooking anything with butter, I will start eating the butter while I'm waiting. I also use a lot of salt on stuff and today I ate half of one of those cake frosting cups, lol.

The first couple of weeks you will probably not be able to do much besides walk. My abdomen was very sore and getting up out of bed was a challenge. There was also air in my stomach from surgery so when I rolled over I could feel it move. All this will go away.
I don't know about you, but before my surgery, the flare up I was in caused me to go from 180ish down to 128, so I was very weak afterward. So if you are healthy going into surgery you may be playing golf within a couple of weeks. It took me about 5 weeks to start to feel like my old self.

Oh and stay hydrated. Water is good but it doesn't have any potassium or other vitamins in it so Vitamin water, Gatorade, etc. If you can make sure that it doesn't have lots of sugar as that increases output.

quote:

After three days out of the hospital I started to feel fine and thought that Steak N Shake was a good idea. I ate too much, plus I was dehydrated and my intestines were still somewhat swollen from surgery which caused a blockage and I had to go to the hospital for a couple of days.

This is one of my biggest fears/anxieties/frustrations. I love my fast food, and can really only think of when I can go to In-N-Out again. I know I'll need to be patient.

frequentflyer,
I wondered the same thing about In-N-Out! I'd say give it at least a couple weeks :-) In between step one and two I had In-N-Out at least once or twice a week...it was good for packing on the pounds that I had lost :-)

All set to go today. Gown on. IV in. Stupid cap on.

My surgeon's first patient apparently turned out to be a much tougher case than expected, and the procedure was going to go all day.

Back at home and rescheduled for tomorrow. Still no solid foods. A wee bit cranky as a result.

Thanks again for the support. Will be excited to get back on here again.

This is by far the hardest part....the waiting! BTW....who is your surgeon and in what hospital are you going to have your surgery? My surgeon was Dr. Ng and my surgery was at Hoag. I'm sure you'll do fine. Sorry you have the extra day's wait! Take care!

What a nightmare! You got yourself all ready too! Hang in there!

I asked the nurse if they could give me something to relax me. Also they had to put in a 16 gauge IV.

Whatever they gave me all the UC pain, worry, and whatever else went poof. This is when I figured out I can use the warm air blower things that you can hook up to the gown to blow it up like a balloon and cover the holes to hold the air in.
I also don't remember going into the surgery room, just pre-op.

Im 4 weeks post-op step 1... and I eat pretty much anything. I was told to stay away from raw fruits and veggies.. but i dont really miss them anyway.

But one thing I was unaware of pre-surgery is that post op.. not sure about others.. but i had some drainage coming out my backside.. started with a little blood tint to it but it was mostly mucus... I still have to "squeeze" out a little mucus now and then which the doctor says to expect as your pouch is forming and producing the mucus.

Anyways.. Like others have said the waiting is the hardest..I just wanted to get in and go right to the table.. I remember going into the hospital to my room first.. then the OR prep area.. then got my IV put in.. and I was wheeled into the OR and the last thing I remember was seeing all the nurses in full scrubs and masks and I could see them counting all the tools they were going to use on me.. kind of intimidating and cool at the same time..

I layed down on the table and the next thing I remember is waking up in my room. I slightly remember hearing the nurses telling my mom and dad that the surgery went great but I would be out of it for quite a while..

I fully woke up to my friend and co-workers wife (who was the nursing supervisor) checking on me which was a nice comfort.

Don't worry too much everything will look up from here!!! keep us posted as soon as u can.

If possible and your hospital has WIFI have someone bring you a laptop.. it was an awesome comfort to have