Have some question after meeting with the Ostomy Nurse!

I am in the home stretch.  I had the appt. with the Ostomy Nurse the day before yesterday.  The stoma is marked and in place.  Kind of freaking out at this point.  I keep reading all of the posts especially the positive ones. Very scared of the pain immediately following surgery.  I guess I will put my big girl panties on and suck it up.  I have been doing the, well.......maybe I am not in that much pain and maybe I could just keep trying the medications.  I do have a few questions though:

1.  I have read that the butt is more painful then the ostomy site.  How painful?  Is sex following the surgery going to be painful?  I know it will be a while before you can have it, but will it always be painful. 

2.  When I come home from the hospital, will I be able to prepare my own food, example:  microwave things, etc?

3.  How much sleeping do you do when you come home?  How far do you have to go with taking it easy?  Can you load the dishwasher, wipe down a counter or do you go with whatever does not hurt and exhaust you? 

Sorry if these questions sound stupid.

Everyone is very different as far as healing and energy levels after surgery are concerned. My surgery was about 11 weeks ago and I had my colon, anus and rectum removed, but was NOT sewn shut. I was VERY sick, weak, malnourished, underweight etc...before surgery. My surgeon said she often does sew shut the bum, but that it is a tough wound to heal from and she was worried it would be too much for me in my weakened state.

That said, I bounced back pretty quickly from all the rest of it. The pain after surgery wasn't bad at all and once I got back to my house I was bored to death after a couple days because I wasn't supposed to do much but didn't feel like sitting around either. I didn't sleep very much at all, but a lot more than I had been while sick with UC. I didn't take any naps but did sit and relax a good bit during the days. I was totally able to do some light cooking and easy house work like wiping down counters and such. You should NOT lift anything heavier than a gallon of milk for about 6 weeks and will always have to be careful about lifting anything too heavy. I also found bending down a bit difficult for a while. Mostly, just listen to your surgeon and your body and you will be just fine.

As far as sex goes, it was a little bit painful the first couple times after surgery, but not terrible. Just a sort of pressure and tightness, but we took it slow and everything was fine. I forgot to ask how long to wait before having sex and probably did it too soon....oh well!! :) This could be a different experience if you are getting sewn shut though...

Let us know if you have any other questions, and Good Luck!!

So full disclosure I did not have the anus removal or butt closure so my answers are a little different but hopefully still helpful...

With regard to sex, I waited four weeks after my rectum removal. It was definitely a bit of a challenge and isn't totally back to normal yet but I believe it will improve and if not be exactly the same it will reach an acceptable 'new normal'. Go slow, use lubrication, etc etc. I'm guessing the anal closure complicates matters a bit here so I'll defer to others with more personal experience.

You will almost definitely be able to microwave stuff yourself. I had trouble standing for long enough to actually cook anything (cook meaning do more preparation than just reheating). I ate a lot of sandwiches in the beginning (soft deli meats on soft white bread), yogurts, apple sauce, cottage cheese, etc. Probably by two weeks out I was able to boil water and cook/drain pasta myself.

I think I'm an anomaly because I never took naps. I did sleep 8+ hours every night though, which was a DREAM compared to pred insomnia and running to the bathroom every hour. Like everyone else I spent a lot of my waking hours lying on the couch watching TV or reading trashy novels (I recommend Valley of the Dolls if you haven't read it before ). I think it's fine to do simple chores around the house that don't require lifting but I would be wary of something like loading the dishwasher at first just because it would probably require bending down to fill the lower shelves.

Listen to your body, it will probably tell you what is and isn't OK. I remember a couple of weeks post-op I went for a walk on a different route and it ended up being about twice as long as my usual walks. By the time I got home the aching in my incision and The Area Formerly Known As My Rectum was acting up as though it were a week earlier in the healing process. I took some extra Tylenol and resolved to work up to longer walks more slowly. So no real harm done, just had to listen to my body. Another activity that I really like doing post-op is helping with grocery shopping. You can't really do it alone (unless you're only buying, like, one thing) but you can walk around the market, grab most things from the shelves/coolers, even push the cart yourself if you feel able. It feels nice to be productive and now that we're getting into summer it is nice and cool inside

They said I have to call the Friday before. She said it is scheduled for 11:30 and have to be there at 9:30 a.m. What time was yours scheduled for? Are you glad you did the surgery. I mean is the ostomy easy to get used to? I just know it has to be better then dealing with not being able to make plans and ending up in the ER only to find out it is just a bad flare coming on. I honestly think people think I don't like them because committing to a plan is pretty much non exsistant for me.

Liz, you always have great information to give and it makes me feel so much better talking to people who have lived through it.

My surgery was scheduled for 11:30 AM also, but due to complications with the procedure before mine, it didn't start until around 4:00 that afternoon and I didn't get to my hospital room until 1:30 AM that night. I am SO beyond happy that I did the surgery. I really didn't have much choice. My UC was drug refractory and quite literally killing me. I am sure the surgery saved my life. Everyone is different of course, but I had very little trouble getting used to my ostomy. It is a new way of life, but a small price to pay to have my life back!

And I agree, Liz is great! :)

3 and a half months after surgery, I'm still knackered and finding that the stoma is almost as much of a pain up the arse as the Crohn's. I realise that this isn't what you want to hear, but I wish a few people had told me how crap the stoma was before surgery.

I also am stuck with the stupid, ugly, awkward thing for life.

Hi Kim. I just had surgery on 3/12 and also had a lot of questions after seeing ostomy nurse. I had colostomy with rectum removed and anus packed and sewn by plastic surgeon. This took two surgeries. I am just beginning to sit and drive some. So I would guess you should be up and around a lot sooner. The stomach is still tender but did not hurt that bad at all other than getting in and out of bed the first few days. I wish you luck and a speedy recovery. By the way I am very new to this and need a lot of help getting used to this and feel like NiceCupOfTea somewhat still so if anyone can help please do!

Hubby had the same surgery....yes his butt area seemed to be tender for maybe 2 months or so....he got an inflatable waffle type cushion from the hospital that they added onto the hospital bill which insurance paid which helped when sitting. Do NOT use a donut type pillow to sit on.

He was on pain management so his situation is a bit different however stay ahead of the pain in the beginning and if the IV is not enough and you need something to supplement it, do speak up. There is no reason to be in unnecessary pain in the hospital. When released be sure you get something to help keep the edge off.

Of course him being a guy I waited on him....lol but I am sure you can do easy stuff. The different small frozen dinners...turkey with gravy and a small side of mashed potatoes was a regular for him in the beginning as his appetite wasn't big.

Protein is your friend....helps healing very much. Greek Yogurt if you eat it is high in protein and he would have one or two Slim Fast each day...15 grams of protein mixing the powder with 8oz of milk.

Good you saw the stoma nurse to be marked prior to. It will be a tad overwhelming in the beginning but I am sure we can all chime in and give you some help.

When you are discharged have a few pillows in the car to make the drive home as comfortable as possible for your tush and a smaller one to cushion the seat belt for your stomach area.

If you bring a cell phone or any personal items to the hospital be sure to put a label on them with your name and room # if something gets misplaced. Bring a few extra labels in case there is something to add a label to...like the cushion and they also ordered a walker for my husband to take home...really didn't need it...but it was his and charged to our ins.