hi tonia. i just got word from my surgeon that i need a permanent ileostomy. my colon and rectum has to come out. i also have CD. i am expecting to go in for surgery in a week or so. what can i expect post op? anything to look out for? things to avoid? potential problems i should be aware of? any stories you can share or advice you have would be great. i know i need to have this done, but i am numb and totally beside myself, even though my doc said i should be med and symptom free after the surgery and in a few months get my life back.
Hello Crazy Harry,
Sorry to hear that you have to have surgery, but trust me it will be ok. I've had the same surgery you are about to have, and I was like you I hid from my doctor for about 2 months to avoid having the surgery. I had a flare up and ended up in the hospital that's how she ended up doing the surgery. It's not as bad as you may think. It will greatly improve you quality of life I promise. I never went more than 2 months without getting sick and ending up in the hospital. Since the surgery I haven't been sick in 14 months. The " BAG " take getting use to but after you see how good you feel I'm sure you will get use to it fast. When the ostomy nurse come in to mark your spot on your stomache where the bag will go make sure you tell them to put it as far from your navel going downward as possible if not you will have to where your pants almost to your chest. Because you have to where your pants above your bag. Or if you want to be sure of the fit ask your nurse to actually put the bag on your stomache so you can know how far up you will have to wear your pants. SMILE it will be ok. If you need any further advice my e-mail address is listed please feel free to write anytime.
TJane: I think the criteria for diahrrea is having to empty every hour or so. Whether it's a virus that is going around or something you ate, watch out for dehydration.
Crazy Harry: Getting the doc's recommendation for an ostomy is a terrifying time. Do your research and be a VERY proactive patient. It really will be okay, especially since you have time to research and prepare.
Hope both of you are participating on the United Ostomy Association of America website. Check the UOAA Discussion Board, as well as Ostomyland forums, etc. Lot of folks out there with valuable information/experience to share.
thanks for every thing everyone.
i am gonna postpone surgery for a while here. i am gonna do some radical stuff to my diet and do the probiotics/chinese herb thing. hopefully something will come out of this. i want to be one of those miracle people you read and hear about. might as well exhaust every avenue before i do something permanent. i thought i was doing ok on my meds until the colonic inertia thing and now bad perianal disease from the crohn's disease.
thanks a lot everyone. this is all really good stuff for me to know. the last thing i need is to regret something just cos i didnt know. you can bet that if/when i do go in i'll be picking all of your brains for more of this valuable knowledge. i wish the doctors would tell you stuff like this.
Wow! Glad I read these responses! I'm a new ileostomate, post op 2 weeks, and still trying to get used to it. I've had CD for 15 years, and this resection/rectal fistula repair with temporary ostomy was my first surgery. But my large intestine and rectum was more diseased than my surgeon thought, so I may have to go back for a second surgery, a proctocolectomy with permanent ostomy, in a couple months.
I agree with placement of the stoma! Mine is higher than what I'd like, but I didn't know better when the stoma nurse marked it. I was wearing low rise pants at the time and she still marked it by my belly button, so now the top sticks out under my shirts. Mine seems to fill up every 2-3 hours, semi-solid and stinky! I'm gonna try the mouthwash trick and see if that helps. And I know it's still early in recovery. I've only been home from the hospital a week. Thank God for Percocet! It still hurts to laugh, though. It still hurts to do darn nearly everything.
Are there any good books out there that can help me with this transition? And does anyone have an opinion about the one piece vs. two piece system? I'm using the two piece system right now, but I'm wondering if the one piece would lie flatter on my abs and not stick out as much, so I wouldn't feel so self conscious about going out in public.
I try not to be a vain person, but seeing that bag at times makes me feel...ugly. I know in time I will adjust. And it's better than the alternative, flaring all the time and having so much diarrhea and pain. But still, I look at healthy people and want to scream to them to not take their healthy bodies for granted.
MJD: Sorry about your stoma placement! Glad it is temporary - if you need a permanent one, you'll certainly know better how to deal with the marking procedure.
I use a drainable ConvaTec convex two pc for my colostomy. Tried one pc and tried closed end and didn't like either. Call suppliers for samples and keep trying till you find what works for you - it's all personal choice.
Don't know if there's a useful book out there, but search for the other ostomy discussion forums and indexes on line. Lots of valuable info and great folks with a wealth of experience.
My ET nurse always refers to "the appliance." How to apply the appliance, remove the appliance, new appliances from the appliance manufacturers, etc, etc, etc.
Sounds more like a Maytag, Whirlpool, General Electric conversation than a ConvaTec, Hollister, EHOB one, lol.