Some questions

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Newone
Regular Member


Date Joined Apr 2011
Total Posts : 58
   Posted 4/30/2011 9:48 PM (GMT -6)   
I recently got an Ileostomy. Still on the road to recovery and learning about which foods are good and which arent. Also learning which feelings are good and which arent. Ive had my stoma since the 19th of April.

So do you have to eat super healthy on these things? I know certain foods cause certain issues. but like what about fast food. I miss chicken nuggets and cheeseburgers! And what about junk food. candies and chips and stuff. And what about drinking. I like drinking iced tea and some sugary stuff. Are those ok?

Also do you always have pressure in your tummy with an illeostomy? I notice i get a lot of pressure just when im about to go... and then sometimes it stays for awhile afterwards. Is that normal? Im probably still swollen from the surgery and i cant wait to be all healed up so i can start being normal but how long does it usually take? Right now im using the mouldable flanges with an adapter cuz my stomach was too sore when i changed it last to press the bag right on my tummy. But is it possible to put the bag right on the flange and stick the whole thing on or do you have to put pressure on the waxy stuff around your stoma for it to stick down? i like the adapter but it sticks out so far and since my output is liquid it hangs around in the adapter when im laying down or sleeping and im worried about my seal. I dont really know anything about a lot of the products out there and only have what the hospital gave me for extra supplies. so if anyone has any tips on good ones out there that would be cool. I have a lot of anxiety about it. Like im never going to get used to it and things are going to suck forvever so if anyone can shed light and make me feel better about it im all ears. Thank you everyone.

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 4/30/2011 10:14 PM (GMT -6)   
Welcome to the life of having an ostomy.

I had my surgery liike... 3 to 4 weeks ago.
As for the foods you can eat. My GI instructed me this: if it's BAD for you eat it! If it's healthy, avoid for about 6 weeks or so.
This means you can woof down all the mickey d's chicken nuggets and sweet teas you want ;)
junk food is good for you, just try not to eat chocolate for a couple weeks, makes the output watery.
Greasy pizza, burgers, all are good. Just try to stick to cheese pizza for a bit.
Cokes, dr pepper are ok to drink, gives you some sugars but might make your phospates go up

I've been living off of take out, pizza,buffalo chicken strips, dr peppers, lipton green tea, water, chips, you name it.

At first, since yours was pretty recent, I ate stuff like mashed potatoes, pizza rolls, small chicken nuggets you get from walmart, lunchables, soup, mac and cheese. Foods that are high in protein will help to heal up the wounds.

Ask your doctor about the Low Residue diet. They should've mentioned this to you. Take it easy on spicy, crazy foods for 4 weeks after surgery.
Low residue means no healthy foods. No corn, vegetables, fresh fruit, whole grains, things that are healthy for you are bad... it's like being a kid and eating what you want!

Your appetite may be slow for a couple weeks. mine was. At your point, it's more important to drink stuff to stay hydrated. slowly introduce your favorite foods!

Also, the pain thing. I had painkillers that did the trick. I experienced pain from when I was in the hospital till last week. So expect 2-3 weeks of soreness. Walking helps, a lot. Just don't overdo it because your legs will get sore. This was annoying for me. No pain no painkillers now.

As for the flange(the part that sticks to you) when you heal up more, you can use the paste just a small dab around the center. The output around the stoma is ok, doesn't affect the seal because it sits over the flange. Just make sure that when you cut it to size that it is a close to tight fit over the stoma. No leakages, no probs. Also, I would highly recommend some Skin Barrier wipes. This will make it not hurt so bad when you take the wafer off to change the bag. You can ask your doctor about these supplies.
I would also recommend Hollister products. I use them and prefer them over any i've tried so far.

I also have a belt that covers the ostomy pouch completely. It's made having the ileo much easier. The bag is completely hidden on a pouch in the belt. It sits flat. No one can tell that you have it :)
to empty the bag, you just unzip the pouch, the bag comes out, you empty it, and it zips back up. it's also waterproof so you can swim and shower without worry about your bag!! It holds the plastic part of the wafer in the pouch too, so it protects your ileo and makes it so that it doesn't move around. Which means you can keep the same pouch on longer!
http://www.stealthbelt.com
http://www.stealthbelt.com/FAQs.html
here's a video that shows it in action.
It cost around 100 USD, but for the price I have been more satisfied with it than any other belt i've seen or tried. It's very slim and flexible.

Any other questions?
No colon, still rollin'

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/30/2011 11:04 PM (GMT -6)   
i don't know how long it's been since your surgery, but like sigmachi said, the first 6 weeks, you need to be kind of careful with your diet, stay away from fresh fruits and veggies, stringy meats and anything that might give you bad gas, like spicy foods, or sodas.
also at first, the output is very watery, and there is lots of it and lots of gas.
that pressure feeling, i had it a lot at first. something that will help is to use something that will hold your bag to you, so that it isn't hanging down. i still sometimes have that feeling if i have really thick output. if you have it a logn time and nothing comes out that could be a blockage, but if you are having output don't worry.
after 6 weeks, start adding stuff slowly, like have a small bit of broccoli and see what happens, then try somethign spicy and see what happens. the thing about soda is it will give you gas, and it doesn't hydrate you, and you have to be very careful wtih that, drink WATER, that sugary stuff (juice too) doesn't help that much.
after about 3 or 4 months out you should be eating whatever. Im 4 years out, and today i ate (don't fall over this is crazy) some applesauce, jelly bread, popcorn, half a hotdog, half a hamburger, chips and dip, ice cream and cake, some ham and some mush. i usually only drink water, i did have a few sips of coke today though.
and you can still drink, once you get off the pain meds, and the gas lessens. but since we get dehydrated so easily,drink water too. like i usually have a drink and a glass of water, and drink both.
im not exactlly sure what you mean about your wafer problem, i just use the hollister new image, for now, and put the wafer on, pressit for a minute, snap the bag on, stand up, fix the bag the way i want it, use the hair dryer, and put on my sure seal. you do need to press on the wafer a bit, a hair dryer helps, but if your wound is still healing don't use that.
good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 4/30/2011 11:16 PM (GMT -6)   
summerstorm, when you drink alcohol, what do you typically drink? Anything to avoid or to consume?

Also, I've heard a lot about this sure seal stuff, what is it?
No colon, still rollin'

Newone
Regular Member


Date Joined Apr 2011
Total Posts : 58
   Posted 5/1/2011 1:34 AM (GMT -6)   
Thanks guys. Lately I haven't been experiencing a lot of output. When I was in the hospital I got morphine as a pain killer and it would slow my bowels a lot. But when the effect wore off my bowels would go crazy. Lots of watery output. The first night home was like that too. Had to wake up and dump my bag every 2 hours. That was brutal. But now i don't really have a lot. Mind you I don't have a tonne to eat lately. The antibiotics I'm on make me feel blah so I just try to drink lots of water. Last night I set my alarm to wake up and check my bag every 2-3 hours or so to make sure it doesn't overflow on me and I didn't have to empty it once. Is that bad? Sometimes I get a lot of gunk around my stoma. It looks so yucky and I don't know if that's ok or not. How do you clean it when it's like that? Can it ever get plugged like that on the outside? I try my very best to drink as much water as possible. Sometimes it really hard.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/1/2011 7:49 AM (GMT -6)   
Here is a post with an explanation of a sure seal that may help understand what they are.....

A Sure Seal....picture what a CD looks like. The seals are round like that and have a large center hole which does not interfere with the wafer opening for your stoma. It has paper on both sides. You remove the paper off one side and adhere it to the front of the wafer. You apply your wafer with the sure seal attached and then put on the pouch. (we use a 2 piece system) Then you remove slowly the other layer of paper...when you do this the very thin, clear, transparent seal attaches to your skin all around the outer perimiter of the wafer. It gives an extra seal all around the wafer. Many find these very useful for swimming, snorkeling, scuba diving, additional seal against leaks or at least if there is a leak it contains it and buys you a little time to go make a wafer change as you do not want to keep anything leaking on your skin for any longer than is absolutely necessary. They are meant to be worn for 5-7 days so if a person gets that kind of wear time as a rule then these would be ok to use.

My husband used them for a few different reasons a few times. We wanted to see how they worked and held up for future vacations, pool time, ocean time etc. But also he was having some leaking issues so we were wondering how they may help or not help. He has only used them 3 times but the fact we got the larger size that works better and we seem to be on our way to finding an appliance that is more reliable and more skin friendly I suspect we will possibly use these for vacation purposes. However we live in a hot climate and with the hot weather coming we could find that these might be more necessary to help with the wafer wear time with sweating, more showers, golf, swimming pools etc. We are still in an experimental stage trying to find the best thing for him.

The main discussion about the Sure Seals is removing them. They can be a challenge for some as they adhere so well...like a 2nd skin. Once you get it started to peel away from the skin then the adhesive remover wipes make removal easy at that point.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/1/2011 7:59 AM (GMT -6)   
Newone....when you have a moment and have some time and can sit without too much discomfort go through some of the threads here and have a pen and paper to jot down notes. That's what I did for my husband and myself as I just couldn't keep all the info in my head.

Go slowly for your first 6-8 weeks.

Water and protein are very important.

Water and fluids to keep hydrated....sipping is better than consuming a lot all at once.

Chew, Chew, Chew is so important. Will take you longer to eat but very important. Not too much you can't eat. Definite stuff to avoid like coconut, celery, items with skins, nuts chew very well.

Appetite may not be too good......but protein helps you get stronger and heal faster. If nothing else have a protein drink here and there. We like the slimfast chocolate shakes...with 8 oz of milk it has 15 grams of protein. The nurse told hubby to try to get at least 60-80 grams of protein daily in the beginning to accelerate the healing. Not easy to do.

Unfortunately you are only familiar with the equipment your hospital provided you with. If it works great. My husband had great results for almost 3 months and then his skin decided it did not like the adhesive. So we got samples from different companies to try. Currently we have one that seems to be a good one at least for now.

He also needed convexity and we also used the inner rings in addition to the convex wafer. After 3 months he had leaking consistently...he had put on about 8 lbs...we eliminated the Eakin Seal or Adapt Ring we were using each time and only using the convex wafer and that seems to have been the answer.

So like I said jot down the different hints from everyone and you will find something that works for you. A lot of great info and advice here from great people.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 5/1/2011 9:11 AM (GMT -6)   
Ah okay, Thanks for explaining that. I ordered some of thsoe but the ones I got are called adapt barrier rings. They're moldable and do pretty much the same thing. I just hate using the Adapt paste. It's a pain and I have a scab over where the skin healed up that makes it painful to change.
No colon, still rollin'

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 5/1/2011 1:03 PM (GMT -6)   
Newone, the mouldable flanges you are using can be snapped onto the bag and then the whole thing applied to the skin, it's what I do. To make sure the mouldable bit is stuck down I push it gently through the bag once it is on around the inside of the ring.

The pressure is normal where the bowel is swollen after the surgery, I used to feel it moving aling the bowel all the time for about 6 weeks after surgery and could actually trace it across my stomach with my finger and then say exactly when it was going to appear in the bag, not much of a party trick but I was impressed. That feeling went after 6 weeks and now very rarely get it.

Food and drink. I would avoid fizzy drinks for few weeks yet as the gas can be painful, eat the food you want to but avoid fruit and veggies for few weeks yet. Stick to protein rich foods and fast foods are fine, keep up with the fluid intake, doesn't have to be water if you're getting bored of it, try teas, milkshakes, squashes etc.

Output, it will gradually settle down but if you're not eating much at the moment then it will be more watery and possibly gassy. The gunky stuff around the stoma sounds normal and no it can't block it as such from the outside, just wipe it off gently when you change you bag/wafer as normal. The morphine in hospital will have slowed the output down and so now it the ileum is having to learn to do what the colon used to do and that takes a few months. So eventually it will take more liquid out of stool which is what the colon used to do.

Make sure you are eating, even if it is only small amounts at at time, like a small piece of cooked chicken or some white toast just to keeo things ticking over. Try aiming to have something small every few hours if you can't face proper meals yet. You could also look at protein drinks or powder that you make into a milkshake that you buy from healthfood shops.

If when you are eating normally you find your output is still watery then you could speak to your doctor as there are things you can use to thicken and slow it down.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 5/1/2011 1:07 PM (GMT -6)   
sigma chi, alcohol like anything else is individual to each person. I don;t have any problems with any type but some people find wine makes output worse, some find beer makes outptu worse. Only thing it to try it and see but I'd say try one type at a time and see what happens, so don't mix wine,beer, spirits until you know what reaction will be. Then if you're lucky like me it won't make any difference and can happily mix away and just wait for the hangover the next day.

Mind you as I have short bowel syndrome I don't retain alcohol long so takes a lot to get me drunk and can be sober again an hour later and best bit, no hangovers! There is always a positive in everything :)
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 5/1/2011 1:26 PM (GMT -6)   
Haha, thanks for the input! I think the first drink i'm going to have is a screwdriver. I turn 21 in a couple months so i'll hopefully be able to stomach what i used to drink by then ;)
No colon, still rollin'

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 5/1/2011 5:15 PM (GMT -6)   
I had my 21st 6 weeks after my ileo was first done and had a party and had a whale of a time. Drinking, dancing, eating well actually everything that I hadn't been able to do before. Have a great time.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/1/2011 7:27 PM (GMT -6)   
I drink vodka or rum or eat jello shots :-) I also like mikes hard lemonade.
I don't see why everyone ishaving such a hard time getting their sureseals off mine jus peels off when I pull my tape off
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/1/2011 7:38 PM (GMT -6)   
The icky looking stuff on your stoma is just stuff I don't really know exactly what but unless its sores or its bleeding don't worry and don't clean it its just gonna get poop on it!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!
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