Hey everyone, it's been a long while sence I've posted. I have a lot of catching up to do. I've been doing real good, it's been one year sence removal of colon and rectum. I now have a permanent illeostomy.
To those who have an illeostomy, how many time a day do you have to empty your bag? I usually have to six times a day, I am eating alot, hahaha. I was just wondering that if I was having diearreha would I know it? I worry about the crohns comming back.
Emptying about 4 - 6 times a day is average for most ostomates - as you say, it depends on how much you are eating. I usually empty as soon as I get up, before lunch, before leaving work in the evening then usually about twice before going to bed.
Diarrhoea for ileostomates is usually described as watery output filling the bag at least once an hour. You'll probably have this happen with the 'flu or various bugs. Just make sure you stay hydrated by drinking heaps more than usual to replace the fluids lost when this happens.I have had an ileostomy for 30 years now due to UC.
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I'm not a complete idiot - some parts of me are missing!
My name is Kim and I'm new to this site. I have a permanent illeostomy due to Crohn's. The way I can tell if I have diareah is the output is warmer in temperature than usual. Also I know you didn't ask this but if you have problems with the smell of your ostomy you can use regular mouthwash. Put a drop in your bag with each empty and that will also stop the bad smell. Try it it's a good and cheap way to stop the bad smell and it really works. It's not harmful to your stoma at all.
Kim
Just remember that God won't put anymore on you than you can handle.
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.
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.
Kim
Just remember that God won't put anymore on you than you can handle.
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.
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.
i'll be back eventually, hopefully with news of my recovery and not that i am gonna be gutted hashed and deboned....
I am just home from permanent ileostomy surgery. I have been getting used to things so have been emptying frequently while I figure it all out.
Harry I would also say that think about where you want your stoma. I'm alittle bummed because I think mine is higher than I would've wanted. I am a young 46 and the nurses who marked me were in their 50s. I'm sure I will get it worked out, but I feel sad about stoma position right now. If you come to the point of surgery I would be happy to answer any and all questions!
MargyPrednisone - 10 mg tapering
Remicade every 8 weeks
In a terrible flare since mid-May (first one in about 4 years, and I'm so bummed)
Hi everyone. I am new to this fabulous website. I joined a week ago and I have learned so much. I too am having ileostomy surgery on Aug 9. I have had UC for 34 yrs and it's time I get my life back. I have waited for this day for 34 yrs and now that it's getting closer, starting to get nervous. I know I will adjust with the "bag" cause it has to be 100% better to deal with than what we have to put up with with the UC. Mine is going to be permanant, removing the colon, rectum and anus. I still have an open wound from the rectal abscess that they "fixed" in Jan. It's not as painful but it still hurts and I hate the drainage from it and the smell. I am wondering if any of you that have had your anus removed, if you could tell me more about how that works after your surgery. Do you still get drainage from it? I am beginning to think it will always be there but not sure if removing my rectum and colon and anus will make a difference. How long did it take you to recover from the surgery? I know they will make sure I am pain free but what about the tubes, how long are they usually in you? I fear the most, the ng tube. I lay awake at nights thinking about it and how uncomfortable it must be. I gag easy and I have a feeling I will be upset until it is removed. Or else there will be something else that will take my mind off of it that will be worse. I would love to hear from any of you that have had the surgery. This is an awesome website and I am so happy to share stories with everyone. Happy days are here again. Thank you, Pat
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.
For Pat... I did not have an NG tube either. They were feeding me an iv diet through a central line that they put in and that was not too bad. The drain tube came out before I went home. When it was in, it made things a little inconvenient while sitting on the stool but not real uncomfortable. They removed everything for me too... anus rectum... all of it. I just have some folds of skin there. No drainage. It's still a little uncomfortable down there, but the surgeon asssures me it will get better. I'd be happy to answer any other questions too if you want to e-mail them.
Margytotal permanent ileostomy due to UC on July 13
I empty my bag about six times a day also. I have found that when I have diahrea it fills with almost clear fluid, maybe greenish or yellow from bile, every hour or so and I have cramps and it comes in a watery gush. Sorry to be so graphic! Ihave had to be supplemented twice by IV when I have gotten the flu because I simply can't keep up with the fluid intake. Fortunately I was able to go to the hospital 2 to 3 times a day as an outpatient. I anticipated this may even improve as my surgery was in March and as my surgeon says my small intestine will gradually adjust to its new role as small and large combined.
Crohn's Disease since 1993, colon removed March 10/2006 with possible J pouch surgery ahead.
It's ironic I am back on this board tonight, as my boyfriend is having diarrhea (he's healthy normally.) I'm really sorry he's sick, and at the same time, I'm glad it's him and not me (knock on wood.) I've had my ostomy for 2 and a half years and have never had diarrhea yet, thank god, and I'm not looking forward to it. I've taken some risky trips and been very lucky (Asia and India), where I only came back with a minor but that sorted itself out. (I was on flagyl prophylactically, daily.)
That thing about the probiotics and making the stool thicker and less frequent is interesting, would you please post more details about what you're taking?
Also, Margyt, I would love to hear how you're adjusting, and if you need any specifid support, I'd be happy to help, you can email me.Anita
UC age 10 - 1 yr
UC age 35 - 42 on and off
UP (Proctitis) age 42-46
sudden onset UC age 46 leading to colectomy 1/13/04 - proctectomy 7/8/04
WOW, It's good to hear from all of you!!! Sorry I haven't been here for a while, I'm going to college and I've been so busy, for those of you who dont know me, I am 36, married, have one son, and I had a temporary ileostomy for a year and then in may of 05 I had it done perment.
I have a lot of catching up to do, I want to know you all,
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.
this is crazyharry checking back in on this thread. here is my update:
i went holisitc and chinese herbal to solve my colonic inertia. i also changed my diet and started the maker's diet. within about 3 days my bowels started to work again (this was back in late july '06). i dont know if the chinese herbs, colostrum, mastica, fish oil, L-glutamine, probiotics are working, but the diet change sure did cos i started that about week before these other things i just listed. i was able to stop taking zelnorm with no ill effects. my bowels are working better than when i was on zelnorm, but not back to normal yet. so things were looking good for me and improving. i even felt well enough to start surfing again. and then i tear both ligaments in my left thumb in a freak surfing accident which required surgery. i get the cast off the day before thanksgiving (about 2.5 weeks) then i start physical therapy. ugh. then things being to degenerate the last 2 weeks. now i have severe constant rectal pain, especially with bowel movements, naseau, and my appetite is decreasing. great. sounds like i am having a flare up. i am taking vicodin for the rectal pain even knowing that it will consitpate me, but i am in so much pain there is nothing else i can do. remicade doesnt seem to be working anymore. looks like maybe the surgeon was correct - the perianal disease is far too advanced. i've been dealing with perianal disease/fistulas from cd in the rectum for almost as long as i've had cd (1993). so i guess maybe time has caught up with me. this is very discouraging cos it looked like i was maybe gonna get better. ugh. now i feel like i am back to where i was in june/july and now am considering ostomy surgery again. and cos it is for perianal disease (i now feel that i have cured my colonic inertia though diet and it is the perianal disease causing the colonic inertia symptoms) the rectum/anus has to be removed, not necessarily the colon. the colon comes out with the rectum to do the permanent ostomy. with no rectum, they cant do a pull through. super bummer. so now i am at rock bottom once again. i cant do the ostomy surgery for at least 2 months - i need to get the cast off first and get some physical therapy in for my thumb. such an dramatic surgery like ostomy surgery will leave me too weak to begin physical therapy and probably isnt good any way cos i had surgery for the thumb 3 weeks ago and my body is still traumatized from that! so i am just a total mess. i am now missing work again due to feeling ill and horrible and fatigued and in pain. so i need to tough this out for at least 2 months. hopefully i'll have a miracle in that time frame and begin to feel well again....
Martha