WOW! CHRISTINE!
Glad you caught my attention by posting new thread with my name. TELL YOUR DOC EVERYTHING!!!!!!!!! Leave nothing out!
You are having an ileo for a disease; I had mine for a permanent injury to my colon and rectum AND 7 month injury to my small intestine. LONG STORY, but you can catch all the details on the other thread.
1. So disease wise and drug wise I have NO CLUE what to tell you. But ask and tell your doc all as he needs to know.
2. Stoma wise, the stoma nurses should mark you in two possible places on your stomach. They have you move, bend, twist, and so on so they get the correct place with no creases, folds, etc, because the surgeon can't tell all this while you're out cold on the table.
3. See if he can do it laporoscopically. It will make fewer adhesions.
4. You need to be sure he makes the stoma long enough so that it is like a little faucet that comes out of you and sends poop into the bag, not flat to your skin so the poop leaks down your skin. So he obviously has to do this correctly.
5. While you are in the hospital the stoma nurses will come in and fit you with all the gear. You of course will wake up from surgery with it. But they may try different sets and brands of wafers and bags on you.
6. BIG TIP, DO NOT BE RUSHED INTO EATING TOO MUCH TOO SOON. NO MATTER WHAT THEY ORDER FOR YOU. I ate too much too soon and had post-op ileus (asleep guts) for a month with an NG tube. BUt prior to my ileo surgery I had been so injured I was unable to eat for 7 months at all. I think they forgot this and so did I. So go easy with food.
7. See if you can get visiting nurse help after you get home as you need the confidence building after you get out of the hosptial.
8. You have to cut the hole in the wafer 1/16th to 1/8th inch larger than your stoma so it does not touch the stoma. I wear an Eakin seal under mine. THis is a very soft donut type thing that goes on you before you put on the wafer. It's OK if this touches the stoma. Also prior to all this they should give you All Care wipes to put a layer of shellack on your skin so the wafer tape does not bother you. Immediately post op they will likely cut the wafer for you and put this on all assembled as clicking a bag on a wafer put on you first would hurt as it takes a bit of pressure. It's like two tupper wear surfaces clicking into eachother, the ring on the bag clicks into the ring on the wafer.
When you remove the assembly every few days they give you Unisolve to loosen the adhesive. They teach you to then press your skin away from the wafer as you peel it off instead of pulling the wafer away from your skin. THis is very important.
9. At first your ouput will be really a lot and real watery. This will change over time. If it is ever going off like a fire hydrant and you are spewing out pure yellow liquid that is diarrhea. They would give you immodium. BUt just normal liquid poop is normal from an ileo.
10. At first transit is so fast if you eat red jello you will see red in your bag. Don't panic. Think of what you last ate if you see red in the bag.
11. If you touch the stoma while cleaning it, it may bleed a tiny amount. This is normal. At most one time I had like 3 drops of blood come out of the stoma and drop into the bag. Never happened again, but scared me.
12. Stay away from nuts, seeds, peels, popcorn, anything with roughage and chew, chew, chew. Drink 3 quarts of water a day and juices. Be careful of too much sugar it will make you go way toooooo much or that fake sugar, that is like a laxative to me.
13. I have gotten two food blockages on mashed potato and one on high fat cottage cheese. I have to eat real bland. BUt my doc is going to do a CT scan to rule out narrowings from adhesions or narrowing of the stoma. Pray I don't have either. But most ileostomates can eat a lot broader range than me. I eat yogurt, rice cereal, ice cream, baby food, scrambled egg. I know a new ileostomate who got a food blockage one week after surgery from a hamburger. So despite what you hear we cannot eat "anything we want" Some may dispute me, but why set yourself up for needing a lavage. (That is an emergency enema in your stoma that can only be done by very qualified personnel) Who wants to need one of those??
14. When you are home, keep grape juice and tea on hand. If you do get a food blockage and are not nauseaus or vomiting you can drink these and walk a LOT and the blockage can break up on its own. I cracked all three of my blockages this way but it took 10 hours. GOD!
15. Let's see, what other scary things can I tell you?........Only kidding. So since I got my ileo I have been on about
10 cruises one being a world cruise. I have passed out twice in hot climates as without the colon to reabsorb water and electrolytes back into your body you can dehydrate even while drinking water. Low sugar gator ade with salt added is good. Orange juice has potassium. You may also want to get checked for low vitamin B12 and lack of vitamin K. I get a B12 shot monthly and I'm starting on vitamin K shots. Vit K is produced by our colon flora which I no longer have and is essential for bones. B12 controls your whole nervous system so this is important. When they do the B12 test have them see if this is low and MMA (Methylmalonic acid) is high. If so, then you need B12 shots. The terminal ileum (end of small intestine) absorbs B12 from food but now it can't as it is sticking out of us. I think that is the reason lots of ileostomates need B12 in shot form; it's not just me.
16. Never take enteric coated or time released meds as they will not dissolve in time to benefit you, plus an enteric coated (hard red coating on pill) that can actually create a stomal blockage as it will not dissolve at all and will get stuck in your stoma as it tries to come out. Liquid meds and chewables are the best absorbed meds.
Well, that's all I can think of. And that is quite a lot I realize. Then you need to deal with all your meds and so on. Keep a notebook while you are in the hospital with meds, food, etc. IT is quite helpful.
I wish you all the best and a good recovery. If any more questions, I will check this thread named after me.
Sincerely, Rosemary
Post Edited (esoR) : 6/14/2010 8:34:00 PM (GMT-6)