Post surgery advice request

Hi, I wonder if anyone could help with some advice please?
I'm due to have my proctocolectomy with perm ileostomy for Crohns in 2 weeks. Ive posted a couple of times in the last month or two about not being sure of my decision and the replies I had were very supportive so I'm hopeful you can help now.
Can anyone advise on how I should approach food/eating post op? Also what do I have to look forward to regards how the stoma will work?
Any advice you have on anything post op would be good as this is the first surgery I've had and although I've read all the info I've been given, it would be better to hear it from the experts i.e. those who have been there and done it.

I'm not a novice to Crohns just the surgery - i've had the disease for 10yrs and been on immunosuppressive meds for 9 of them hence the surgery now as I'm getting on a bit!!
Many thanks in advance.

I can only give you my experience, but everyone's is different.

I basically slept the first two days after the surgery. My parents stopped by to visit one day (they were staying nearby) and I basically feel asleep for quite awhile. I didn't have any huge pain problems, but I had some strange reactions to the morphine. I felt waaayyy overheated but had no fever. While you are in the hospital, you aren't allowed to eat until your "bowels" wake up. When you see stuff coming into your bag, then they have woken up. Then you get moved to liquids, then "soft" food. Google "Mayo" and "low residue diet" to see the types of food you will be able to eat. Be prepared to walk in the hospital. It prevents blood blots and helps your intestines wake up.

Once home, I was completely wiped out. I would need to take one, maybe two naps a day and would sleep solidly through the night. I planned to read lots of fun books, but I couldn't stand the thought. I basically just half zoned out in front of the TV when I wasn't sleeping.

You stoma output will likely be liquid for awhile. Then over the course of weeks/months it will begin to become more applesauce like. 9 months after, I'm at the point where I can eat almost anything (I might have a problem with broccoli). Some people find that foods still cause them problems in the way of blockages or gas.

It takes awhile to feel better. I certainly didn't wake up after surgery feeling great. But the week after I felt the same as the week before surgery (and that might be an indication that my general health was just sucky). It took a few months to feel better. Once you are home, you should try to eat high protein but still low residue. You should also walk as far as you feel comfortable, whether thats a block or half a mile.

I definitely feel tons better now than I did before. I don't really notice the stoma most of the time. Obviously I notice it when I empty it. In addition, I notice it when it starts to fill up and protrude from my stomach. It smells different than normal poop but probably no worse. The bad part is that instead of stinky poop once a day or two days, you have stinky poop several times a day. However, you can put hydrogen peroxide or special drops in your bag to help stinkiness. In a normal week, I change my bag twice a week.

Everyone has given you really good advice. I want to add that you will have a clear bag on when you wake up after surgery and it looks pretty scary. After you get home you can change to ones that aren't see through!
Don't be discouraged if you have leaks at first, it's a learning curve. Don't be surprised if it takes you a long time to change the bag, or even to empty at first, it will speed up.
As for your food, it is really a common sense thing. If something is hard to digest (cabbage, lettuce, apples, nuts, etc...) don't eat it right away. You probably need to wait about 6 to 8 weeks before you start eating those things, and then slowly. Be careful that you drink enough, you need to be very careful about dehydration right after surgery. I think most of us, me included, had to go back to the hospital shortly after surgery because we got dehydrated.
Also, don't be upset if you are super tired for a few weeks, or if you are achy and sore. That's normal. You should be off the rx pain pills in about a week or so though, and dont' be afraid to ask your dr if you feel like you are in too much pain.
One more thing, if a home health care nurse comes to your house after the surgery and they tell you things about the ostomy, take it with a grain of salt, they are very good nurses but not usually trained in stoma care. The one that came to my house told me I could let the gas out of the bag by poking a tiny hole in it with a safety pin.
I hope all goes well! Good luck!

You have been given lots of great advice. I am only 3 weeks out so have nothing to add. Good luck! Keep us posted.

I think everyone has covered practically everything...

Make friends with your WOCN or ET (ostomy specialist nurse) and take what other nurses tell you with a grain of salt. Most nurses think they're just fine at dealing with ostomies but they really only have the knowhow to deal with an ostomy so it'll stay on a patient who is literally just lying there in a hospital bed. I know a lot of what the non-WOCNs told me in the hospital turned out to be kind of wrong (stuff like: clean the area around the stoma with baby wipes [DON'T do that], use lots of powder everywhere [DON'T], etc).

Walking is key and so is using the breathing machine (incentive spirometer). I slacked off on the breathing machine after my second surgery because my pain was so bad (do not be afraid to press the button if you're given patient controlled analgesia [PCA]) and as a result I ended up with coughing fits... believe me, you DO NOT want to have a coughing fit days after abdominal surgery! Ack!

Be patient with yourself. Really good advice I got before my first surgery that has held true both times: At first you're going to be totally overwhelmed. You're supposed to be. Then in two weeks you're going to be doing a lot better, but you'll be hard on yourself because you expect to be doing EVEN better. And then in two months you really will see a big improvement. So just take it slow.

Really good advice from my surgeon: Don't be afraid of food. I know some people don't have an issue with this, but after my experience with UC and developing tons of food sensitivities (all gone now, thankfully) and generally just learning the association that food=pain it took a long time for me to be able to eat normally without fear. Chew like crazy and drink liquids with your meals and stay hydrated, but don't be afraid to branch out and eat something really delicious that makes you happy. Pizza with just cheese and sauce (no veggies or meat toppings) is on the low residue diet... just sayin'.

Scarytime, don't know if you're male or female, but if you're female, I recommend getting a device that lets you pee standing up. I used something called a pstyle, which is inexpensive and works very well. There are others too. They are marketed more for camping and such than for medical.

Sitting on the toilet spreads your butt cheeks and I found it really hard and bad for the wound at first. I emptied the pouch by going down on one knee, which was easier (good to get a foam pad to protect your knee).

Good luck!

I am one of the folks who had major issues w/the anus wound, so I know what a big deal it is, and I don't want to scare you w/the details of my story.... but I will say that even w/all the problems, most of the time I was still doing much, much better than I was before surgery when I was so, so sick.

There are a lot of people on this list who were uncomfortable for two weeks and then their butt wounds healed beautifully. Hopefully some will chime in.

Oh yes, I remember it as if it were yesterday!

I have ordered a pstyle so at least I have something if I can't sit down.

Thank you for the heads up on how its likely to be. I feel much more prepared and a little less scared. Well 2 weeks today the surgery will be over and I'll be starting the road to recovery