Support For My Husband

Lots of things to drink because dehydration may be an issue. My surgeon always recommended things with electrolytes, like gatorade and pedialyte. Some people say that's not good because of all the sugar, but they do have low sugar gatorade and powerade.
Other than that, I can't think of anything at the moment, but I just wanted to say how awesome it is that you are researching this and being there for him

Wow - how lucky is he to have such a supportive and proactive spouse!!

I'll answer more later from my experience - also zero notice for ileo!   I have to tell you one thing asap: don't freak about the vile smell of the output at first!  It will change after several days and won't be so horrible - I had almost no odor at all!  The early stuff is just bile and it is like green pond scum in every way.  Just my experience.  I told my surgeon that is the ONE thing to tell patients with new ileos.  There is enough to deal with without wondering if how to cope with the smell.   Oh, and as others will surely tell you - the hospital supplies are crappola compared to what is out there.

Connie

liveandlearn made a great point about the green stuff, that is one thing i always tell people who are going in!
Also, the bag that he is wearing now, the clear thing, he can wear one that is opaque when he gets home, you wont need to make covers, unless you just want to. they just use the clear ones in the hostpial because they are cheap and they can see in them to see what the output looks like
I dont know what a radar key, but unless he has another health problem, you dont need to use a handicapped stall for an ostomy, its really easy to empty, he'll just have to get the hang of it.

For the matress, i already had one of thoes plastic ones, i had a pottytraining child, so those are needed,lol.
But i also snaked the pads from the hopstial, the ones that he is laying on now, they are waterproof and sturdy. When i camehome, i sewed a sheet on top, so they are soft, of course its always white, i cant change the cover, although ifyou are a good sewer (i only sew by hand) you could make a type of pillow case thing for them. And i sleep directly on it, that way if i have a leak, which once he gets the hang of it wont happen much, i just have to clean me and that pad.
he can use his right pocket, just has to be careful what he puts in it, lol. I personally started using my left pocket, cause i stuck some earrings in my right pocket one day and i was like, OMG that could have been a disaster!
He can just keep his spare kit in his car, or at his work in his locker/desk/cubby whatever.
Pants-once his stomach heals and the swelling goes down, about 4-6 weeks, he will be able to wear regular pants, unitl then sweat pants and such would be good.
-about your bathroom bin, i leave my extras in a cardboard box, but i make up six boxes (i use the pouch boxes) with the pouch ready, the wafer cut, each one has paste, tape, a sure seal and some rags in it. And they are ready, that way if i have a laek and need to change quick all i have to do is just grab it out!
As for food, the diet will be kind of restrictive at first, nothing hard to digest, ie fresh fruit, veggies, stringy meats, after that dont worry about it!

You are a good wife to do all this for him, and its good that he has this help

well i didnt think to ask, im just a thief! LOL!!!
actually what made me think of it was i had taken the one home from when i had my son to sit on in the car ride, its gross but i was bleeding SOOO much and it was an hour long ride, i was afraid it would get everywhre, and i sat on it for about a month after that, until my bleeding finally slowed down. So when i found out i was getting an ileo i was like, imma take those!

Oh something else i do to help with mess, i went to babies r us and bought the pads that babies sleep on, i dont like to sleep on them they are smaller, but when i change my bag i put it under me on the floor so that it will fall on there and i wont have to scrub the grout and the floor!

Thank you everyone, there is some really great advice here, thank you.

It was an emergency and his small intestine was so swollen (his stoma is currently 55mm - it looks like a tomato!) from 2 weeks of being blocked up that they couldn't consider a j-pouch then, however his rectum etc is all fine so it's something he could have in the future if he wants, it's great that he has that choice!

I'm in the UK so we get pretty much everything on prescription, and he no longer has to pay the prescription fee so it's all free basically, which is great. I'd seen the Hollister drops and will definitely order some, thank you for that advice Cecilia.

Once I get the certificate from his doctor I can ring up the different companies and create the account with them, and our stoma nurse will help us make the 'shopping list' so I should be able to have most things ready by the time he gets home. And we can even get swimming trunks on prescription, which will be great as he's lost so much weight and swimming is great therapy!

We've experienced the smell... it was foul!! Stunk out half the ICU & he's in a closed room!!! I got him some Oust which helped as the hospital air freshener is rubbish, I'm glad you posted that Connie or I'd be freaking out right now!!

He's had a really good couple of days, he managed to sit up by himself today, which is great because it means the catheter can come out tomorrow. His appetite has also returned with a vengeance and hopefully in the morning the doctor will let them take the NG tube out so he can have yoghurt or a milkshake. This is really typical of him - the doctors say it'll take a couple of weeks for his appetite to come back and it takes him 2 days! How soon were other people eating after the op?

I've got some stuff to keep me busy over the next few weeks at least - I need to cobble something together to fit round the seat belt in the car to keep the pressure off his stoma... I see a blue peter project coming on!! And he needs loose 'mooching round the house' shorts made too.

Thanks for all the advice, I will be back with questions and experiences.

We've decided to blog about this whole thing - the address is ileostomy.wordpress.com if you want to check it out.

Thanks, Ses

Ses,
Just checked out your blog and am happy to see that Andy is improving every day! You are an adorable couple, and I love the elephant you made for him!

It's a good thing he had surgery, because a full blockage is so dangerous. Glad to hear that he's a candidate for a j-pouch in the future. I'm praying that his recovery continues to be a smooth one!

Hugs,
Cecilia

P.S. - I was diagnosed with Crohn's only a year and a half into my marriage, and this experience has brought us so much closer than I could have ever imagined. His love and support "in sickness and in health" have only made me love him more! It has also strengthened my faith in God. So much good has come out of this experience that I wouldn't change a thing even if I could!

Hi, I'm sorry I never updated this... everything went really well, he came home, healing well and it was looking great.

Until they told us today that he has cancer.

They think they got it all out, but it's an aggressive little bugger so they can't be sure, so a few more healing and putting on weight weeks then chemotherapy. They hope that will zap it.

This is bloody terrifying!

Anyone else had colon cancer? What can we expect? The surgeon told us that most chemo drugs they use for colon cancer don't usually cause hair loss, that's nice I suppose!! He did say to think about freezing sperm though. Sucky.

Andy's amazing though, he's so positive and confident he's going to beat it. Or maybe we're both still totally shocked!

Thanks, Ses

summerstorm: hospital sent me home with pads but they can also be ordered through Edgepark if you get supplies from them. You change on the floor in the bathroom???? I just put one of the pads underneath me on the sofa and since I change first thing in the morning on the days I change, things are pretty calm. I've had no problems doing it that way in 4 years. However, when we have company I'm in the bathroom on the floor right with ya. Can't imagine stumbling into the kitchen for a cup of coffee and looing into the family room to be greeted by the sight of me in the middle of that routine! :)