Surgery 12/16/2011 Still in Hospital & Overwhelmed

I'm sorry she's had such a rough recovery. The same thing happened to me, and everything turned out fine.

I had a home health nurse stop by every day in the beginning and then every couple of days, and so on. Make sure to ask for home health care while in the hospital, and they will coordinate everything.

Praying things get better and that 2012 is a happy and healthy new year for your daughter!

Cecilia

I agree with the others on having the home health nurse. It's also good if there's a nurse associated w/your surgeon's office that you can call or email with questions.

Make sure to ask for a WOC nurse, and then insist on one if they don't send one. Some of the home health nurses are pretty ignorant about ostomies, and a WOC nurse is going to know a lot more about the wound (although all of them deal w/wounds).

If you have friends or family who can help out for the first few days with meals (for you too), chores, whatever so that you can catch up on your sleep that will help a lot. Everything is overwhelming when you're so sleep deprived! The hospital solves some problems, but causes others.

Hope things get better soon.

I had a JP drain at home for a week or so and it is really not that hard to take care of at all. They should teach you how to flush it at the hospital as well as how to empty it and record the amount of drainage, etc. I have no experience with a picc line, sorry.

Definitely ask about a home health nurse and ask them to get you someone experienced with ostomy care. Your hospital has social services just for setting up that sort of thing, so be sure to take advantage of it. Also make sure you get clear directions as to who to call for help during and after hours and what situations might require a call.

Best of luck to both of you. I know it seems impossible right now, but things will get better.

thankfully i didnt have as much complications as your daughter but i know when i was on steriods i became a diabetic andthey wanted me to take incline 3 times a day i thought and said to the doc ohhh when is the nurse coming by to give them to me. ??? they said you or your mom we booth laughed because im SO SCARED of shots and she is so silly and goofy i diddnt trust her. that was back in 2006. now 2011/2012 i am going through surgery like your daughter they did step 1&2 at the same time i had no idea how i thought how am i suppose to go home with this bag (even though i was ready to get the heck up out there) long story short we made it a couple of accidents here and there fyi make sure she doesnt sleep completly on her belly thats a nasty leak lol. but i know having a ournal just or my health has helped me so much i know there are pages with my tears on them from ustration but 1 hour later or day(s) later i re-read it and i think to myself that happened to me whoaaa i did a good job at handeling it even if i did cry and as i continued it i realized and became stronger about each hospitalization and doctor visit and now when things happen i let it be .... i have a thread about my UC its named : it was UC , it is an ostomy bag , it will be a j-pouch.
im 17 turning 18 by the way and i think this will hep your daughter a lot ill keep you all in my prayers sorry for such a long response. with all intentions toward healling and love -jackie

Being at home is wonderful but emotionally, lots of ups and downs. Laura is sometimes overwhelmed with how responsible she is for her own health, e.g. avoiding dehydration, keeping track of the new meds, reminding me to strip the JP drain, setting alarm to get up middle of night to empty bag, not being able to sleep on her comfortable side, etc. She still has more pain than she expected and sometimes it feels like UC pain, which scares her. She looks good and I see improvement every day, but she is still quite fatigued. I have to push her to walk even once/day.

The surgeon has her on a minimal residue diet for the next 2 weeks. No veggies, only fruits are banana and applesauce, and only chicken, fish, turkey, cheese, eggs and white starches. How will she get iron?

She has a question. Not sure if I should start a new post but here goes: By the 3rd day after bag change (one piece Hollister, clear bag), the stoma seems kind of swallowed up by the paste/wafer/poo remnants? Is that normal? Does that mean it is not okay to wait for day 4?

Thanks again for all the encouragement.

I never tried for more than four days at first. Her stoma is swollen and changing size a lot, plus you want to take a look at it, make sure the skin is OK, etc.

After the first little while, I have worn opaque bags, so I'm not even sure what's normal for how the stoma looks through the bag. I would say that if her skin is OK and her stoma is OK when you are changing things, then whatever you're thinking of as "swallowed up" probably isn't a problem.You could try waiting for day 4 if you want to, but change earlier if her skin seems to hurt (or if there's a leak).

Is she taking any kind of iron supplement? Protein shakes sometimes also have iron in them, and she needs extra protein. Egg yolks also have iron, and some simple fortified cereals (eg rice krispies) are fine too.

What have her blood counts been like? Has she been anemic? If she is having issues you might want to talk to her doctor. I disagree w/Alisandra on this point because iron deficiencies can delay wound healing. If she's very anemic, she may need iron infusions (not a big deal besides getting there) or the doctor might want to prescribe a supplement (just make sure it's not a time released pill).

She's been through a lot, so it's not surprising she's so tired, which is a big factor in how overwhelming everything is. It's good that you're pushing her to walk. Even a little bit makes a difference. But she's probably not even caught up on sleep from such a long hospitalization.

Hang in. Sounds like things are getting better....

I wouldn't worry about the stoma looking "swallowed up" unless she is having leaks. The paste will swell up around the stoma and it's not a problem unless it is blocking things off, etc.

Also, I never set an alarm to empty my pouch during the night. The weight of the bag once it needs emptied should wake her up. You might try it one night and see if she is able to sleep better or longer that way.

All your replies have been helpful and reassuring that others have had difficult recoveries and things do get better. Everyday is a little better but everyday comes with a few tears. 2nd bag change went a little easier but went on crooked and harder to empty. She had no idea how much there is to learn and be responsible for. She plans to start back to college when classes start in 1 week. She is only taking 2 classes {anat & phsiology and chemistry}. I hope she can manage being just 4 1/2 weeks post surgery. The drain seems harder to conceal than the bag so I guess its sweatpants and sweatshirts for awhile.

I hated having that drain as far as trying to conceal it with my clothes. I felt like there was a huge thing hanging off of me, which I guess was sort of accurate (though really it isn't that big). When is she supposed to get it out?

She will be getting another CT scan when she goes for her 2 week post-discharge follow-up appt with surgeon. They will determine at that time if it can come out. She is in much more pain today and very distressed. She gets colitis-like pain just before the ostomy is active and that has really discouraged her. Also new sharp pain intermittent pain on right side of abdomen. We have a call in to the nurse. Friends just came over and that perks her up, but feeling new pain is demoralizing. She is 3 1/2 weeks post surgery and still on 6 to 8 Vicodin per day. Is that typical?

So sad to hear about the wal-mart customer comment. We have come across many very lovely and caring people since she decided to have surgery and I get sad when I hear about rude and simple people who feel compelled to make unkind, insensitive comments. She really appreciates all your supportive and informative comments.