What foods do you eat? Also, I don't have a large intestine, so that compounds the problem. What foods to stay away from that cause gas and how does the gas come out? Does the pouch expand out? I know NOTHING about this. Consult is Fri-13th, yeah!!!! I dread this, and also, is anyone experiencing acid..... I have a lot of anal acid that keeps me raw and in pain. Do you think or does anyone know if the acid will be like it is now with an ileo? Thanks to all.
Hi. I have an ileostomy. I only have about 3 feet of small bowel and nothing else. I say this because sometimes it depends on how much bowel you have and your disease. I do not eat anything that may get blocked. Do some research, talk to doctors and eat small frequent meals. It takes about a year for everything to settle down. Good luck.
I've had an ileostomy for 11 years. Rectum is removed....so no problems there. I eat whatever I want, even popcorn and nuts in moderation. I don't recommend either in the beginning. Foods such as carrots come out the same way they went in. Raw vegetables and greens make plenty of gas and should always be eaten in moderation as well. Beano is terrific to fight the gas, and yes, the bag does expand. Foods that will block you are anything with skin!!! Peel tomatoes always, dried beans (especially large butterbeans are killer). I blocked the first time on grapes!!! Second time on English peas, third time on pulled pork barbecue....I eat them still, but in moderation and I find eating potatoes helps me a lot. The starch seems to break food down or something. In the beginning, the stoma and opening are so small that blockage is almost a given at some time, so don't be so scared, okay? You'll know and they'll give you IV fluids until it passes. Once it happens, it (well in my case) it stretches the stoma or the channel leading to it...I haven't blocked in over 6 years.
I know you're afraid, with every reason to be. But I had much more trouble BEFORE my ostomy than afterwards. It will be okay, I promise. Once you get over the fear, and you will, you'll find what works best for you. For instance, I find that milk makes me very liquid and I avoid it if I'm going out, but have it if I'm prepared. Also, did they tell you that your stoma will move around???? Boy, that freaked me out!!! LOL
If there's anything you want to ask, please don't hesitate. There's no subject too personal, okay?
Good luck, speedy recovery, and the start of your new life...
I'm in total agreement with my friend Brown Eyed Girl. No food is off limits, but certain things like nuts, popcorn, and pulpy fruits and vegetables need to be well chewed and eaten in moderation, perhaps with water or something to wash it down. Just this evening, I was eating some balsamic glazed vegetables with dinner, and I could feel in my mouth that the tomato skin was kind of chewy, so I just spit it out before swallowing it. Over time, you'll develop a sixth sense about this. Before my ileostomy, there were so many things I couldn't eat anymore because they just went right through me. Eating salad after my ileostomy was one of my greatest pleasures. Hope this helps.
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Thank you so very much. I will still stay on this site but I also have a herniated disc so I can't stay on this computer, it really hurts my neck. Another problem, I'm a mess at 56, having a poor is me day...... It moves around, what do you mean? And do you have acid that makes the area raw or did you have. My rear and around my whole b___ is raw like a piece of meat, very painful. Thank you for your time.
Thank you very much, will have to wait until tomorrow to look, been on the computer too long, my neck is killing me, I had a new refill of black ink and now it doesn't work so will go to the site when I can print. Thanks again!!!
I've been dreading this and now even more, my friend says I see it as a death sentence,
Newlife getting an ileostomy is not a death sentence! Sorry, your friend is wrong. It's a different way of life. 500,000 people in the US have ostomies. It gives you life. It saved my life for sure. You should not be afraid. Yes, in the beginning, it will limit your activities while you heal. Once you have settled on the type of appliance you will need and how to prepare the attachment area, your life will be better. I feel based on the type of questions you are asking, you're trying to take on too much. You should be assigned a nurse that will help you deal with the appliance initially. Relax! Have faith that all will turn out right. Quiz your doctor, get answers, he owes that to you. I've had my ostomy for 7 years now and it's just a way of life. I'm pleased that it has given me an opportunity to be with my siblings a few more years without pain. Best wishes and stick with this site to find out more about living with an ostomy. Bob
Why do we give other people permission to affect our attitude? We're the ones in control.
Permanent ileostomy August 2005 due to ulcerative colitis.
Hey, I also have lost all my large intestine and some small bowel. I have had lots of little blockages, but I lie down in bed until it unblocks itself. And yes, it is painful. Mainly, liquid comes out, kind of yellow stuff. Then, bang, I feel great. So, I really eat what I like, but try to watch out for some things like onions, leafy foods, or I cut them up small and say a little prayer. I also use ileo gel sachets. I put one in the end of the pouch, it soaks up liquid. Sometimes it's food, sometimes I'm in pain for reasons I don't know. I mainly take risks. We are all different. I once ate stone fruit for a day - peaches, apricots - all with skin on and not one blocked up, so that was my experiment. Strawberries, nectarines, and was fine, but anytime I could get blocked, so food is a risk, I suppose. Hope all these posts are helpful. x
Hi Newlife....just a few thoughts with respect to having the ilio...
- Many people in here, rather than letting themselves slip into depression because they required an ilio, actually rejoiced because they no longer had to deal with an illness and after many years were able to enjoy life once again. It's 90% attitude and it's your choice. - Every person's ostomy experience is unique, don't get over-anxious about others' negative experiences. Most often, they never explain their complications such as being overweight, diabetes, failure to follow doctors' advice, etc. - There isn't much point in worrying about your diet at this point....you will have to eat soft foods that will digest easily in the first several months, but over time your small bowel adjusts and you will process a greater variety of foods .... just don't eat large, chunky anything... your ostomy nurse will give you good advice. - Gas...it will happen.... you just deal with it. Beano can help, avoiding gaseous foods, watch what and how much you eat if you feel it will interfere with a specific social occasion. - I have had a stoma for two years....it's NEVER moved....haven't a clue what that was about. - I use Coloplast 2-piece setup. You will learn how to set them up and you should NOT have acid coming in contact with your skin if it is done right....if you are overweight, it can create a challenge in keeping the seal tight...otherwise it should work out fine. - MOST IMPORTANT ..... have a surgeon that comes highly recommended for his work in colorectal surgery, NOT a general surgeon. All the best....you will adjust and do just fine!!!!
I too was raw before my surgery. I cannot express how different my life is now since my ileo. Sure, my life was great when I had no problems, but I did and I stayed as positive as I could through those flare-ups and still ended up in the hospital really sick. I am so thankful to my amazing surgeon and his team. A little shout out to Dr. Michael Ott. I had a few minor setbacks, can hardly remember them now. I don't want to jinx myself, but only one minor blockage, I drank white grape juice and tea while lying in bed with my hand on my stoma for comfort. I eat whatever I want, my only focus is health and weight and now have that under control and feel better than I have in about 10 years. I asked lots of questions to other ostomates about appliances and have stuck with Coloplast Sensura 2 piece, just recently moved to convex due to weight gain and now may move back as I have lost the stomach, but also figure why bother as long as it is working. You will find the system and brand that works best for you. The suppliers are amazing with samples and find a good stoma nurse and supplies store to help you. My supplies store in London is awesome and sooo helpful.
About being scared, of course you are. This is going to be a change and there may be some challenges on your road to recovery. Use this site as there are so many people here to chat and help.
When it gets tough, try to think about all the ostomates on here who say, "I am so happy to live my life now" "I eat way more now than I did when I was sick"
There are a lot of people who have no idea that I have an ileostomy, I wear a bathing suit, party, dance, it hasn't helped my singing though.
Good luck. Stay in touch.
PS just got a sample of the NA'Scent as this has been a concern for me and I LOVE it.
Having an ostomy is not at all a death sentence as everyone on this site will tell you. If it was, I wouldn't be writing this right now, I would have never learned to play the piano, never cooked tomato sauce on Sunday afternoons, never gotten married, or smiled the biggest, proudest smile as I watched my daughter dance on stage last weekend. We didn't choose it but it saved our lives. If God had given me a choice, I probably would have picked another sickness to deal with rather than Crohn's. (Maybe peanut allergies would have been easier - LOL). But it is human nature to adapt. And how lucky you are to have this great site to answer your questions and provide support.
After a short period of adjustment, I guarantee you (like most of us) will think, "Why didn't I do this earlier?
In answer to your question, I use the Sur-Fit 2-piece system and J J Micropore tape. That's it. I change my appliance about every 6 or 7 days. I don't use a belt although I keep one in my desk drawer just in case my appliance gets loose. Actually, I've only used it a few times. Tips? I have lots and I will try to compile a list at some point.
Hang in there and don't hesitate to ask ANYTHING! Good luck!
Everyone in here is so awesome... and great advice in every post... I've had my ileo since I was 10, and now at 44 I am still learning the hard way that even though I eat almost everything, there is much I need to slow down and chew better and eat in smaller quantities at a time with lots of drinking in-between... if I eat too much popcorn or peanuts I am in trouble... and if I go crazy with the mushrooms OMG they are like sponges in the gut and hard for me to pass... but as long as I chop them up into teeny pieces and don't eat so much at once I am fine. A friend of mine taught me how to make a great mushroom soup and I have been addicted to it ever since... but I need to be careful not to slam a whole bowl full in one sitting... everyone is different but just take it easy with questionable foods a little at a time... all will be ok, I promise.
I am reading all these different views about ostomies. I think it is great. It is different for everyone. I hate this ileostomy but I live with it. Some days are good, some are bad. The thing I find most amazing is you are not alone. I once went to a friend's for a get-together and this guy asked me if I have a special diet. I do not normally announce that I have an ileostomy, so I thought "what a weird question". Turns out he had a colostomy and had found out about me. So when you are standing in line at the grocery store or sitting at the beach, we are among you!
Thank you so very much, Bob!!! I will be assigned a nurse and I will ask my doctor at the Cleveland Clinic in FL as well. But for right now, I want to hear what happens in the trenches, if you will. A doctor can be a pediatrician but has no kids of his/her own, only book knowledge. That only goes so far with me. So I changed my son's doctor because he wasn't married, but because he didn't have kids.... He couldn't relate to a crying baby with an earache all night. When did he sit up with his own child who had the earache? All he learned was from a book. My doctor probably doesn't have an ileo, so the wonderful people on this site have experienced what things are like, what to watch out for, tips, etc. Also, the more I read from others, I come up with new questions for my doctor. So thank you so very, very much.
I think you're doing the right thing (i.e. gathering information). I have always wanted to be ahead of the game and tried to find out as much as I could beforehand. I can't relate to you being scared. I didn't have that opportunity as my surgery was done as an emergency. I think you're scared because you have limited information. That's understandable! Lean on your nurse and doctor for information. I can tell you my life is a lot better with no pain once I recovered from the surgery. That's the positive in all this. Best wishes and please keep us informed. Bob
I can echo what Wounded Doe said... I've had my ileostomy since age 10, am now 54... Must be very careful about how many nuts, how much popcorn, etc., but you will learn what works for you. Might start with the easy-to-digest stuff and add new things one at a time. I've never had a blockage. Re products, I like the Convatec Active Life bags by Squibb. Again, everyone's skin and activity level and body shapes are different... You'll need to be patient and try a variety till you hit on the best. Always have a spare with you, as well as a trash bag in which you can dispose of a used bag easily. What else? It's important to have one or two people from the beginning who are in your daily life and with whom you can be open... This is not to be carried around as a big secret... You are doing what you need to do and that is an act of courage, not something about which you should feel any shame or embarrassment. Also, it helps to give your ostomy a name... You will find that, inexplicably, it develops its own personality.
I'm a 65-year-old male. I had ileo in 2008. I strongly suggest you tell your doctor to set you up with a 4-inch bag wafer set, or you will live in a liquid mess if you leave the hospital with a smaller size. Learn to feel the area of the bag every once in a while for fullness. Do not let the bag get full of liquid or air, as the seal can come undone and the bag will fall down your leg onto the floor. The loose bag does not care if there is a room full of people. Also, learn the symptoms of dehydration: muscle cramps, dry throat and/or mouth, dry skin, dizziness, and more. I'm sorry if this scares you, but that's what happened to me because no medical people prepared me for my future life, and that's because they just don't know. They have never experienced it. It will take time to learn how your intestine empties and how it reacts to certain foods. The contents of your discharge will be essentially water and stomach acids, which can make the skin around the stoma raw and painful as the acids eat the wafer away around the stoma. As soon as you feel pain and/or discomfort in the stoma area, change the wafer and bag. By the way, the stoma itself will not normally cause you any pain. If it ever does, get a medical doctor to examine you at the earliest convenience. Also, the anus is gone. Everything comes out into the bag, including farts and bowel movement sounds. You can do this, so many have. Bless you, dear.
''As the acids eat the wafer away around the stoma,'' first off, the acid does not eat away the wafer. Secondly, if the wafer and gasket material are applied properly, wafers normally don't leak. However, if you're overweight, keeping the wafer tight to the skin can be a challenge depending on how you move around. You have to use some common sense in applying these things. Wafers need to be warmed up prior to applying the gasket material, and they need to be held firm to the skin for the first few hours or so when applied over the stoma. I get 5 to 7 days out of my Coloplast two-piece setup. In 2 years, I have no skin burns from acid. However, if the wafer begins to lift from the skin, which it will on the 5th to 7th day (generally), then it will begin to itch. Then it should be changed. Also, if leakage does occur, it will itch.
I thought over your response to my letter and realized that technically you're correct, the acids don't eat away the wafer, they dissolve the stomapaste (gasket material) between the wafer and the skin. Therefore, I stand corrected.
And yes, being overweight does create a sealing problem, hence the acid problem.
I commend you on your perfect wafer application. How about sharing it with the rest of us? For instance, how do you heat up the wafer, to what temperature, how exactly do you hold your wafer firm to your skin for hours and under what circumstances specifically.
Apparently, you're not overweight, so you can't possibly experience all the problems involved with all wafer attachment problems of everyone else.
Thank you so much for your Scotia input.
By the way, I'm French Canadian. Also, (I'm overweight)
Hi newlife56, I also have an ileo, been 4 years now, with little to no problems.. To answer this question, yes, it helps to stop any smell that the bag may have. I use M9 from Hollister and if you write or call the manufacturer, they will send you all types of free samples. Just call and ask for them, that's what I did, until I found what I liked. Best wishes, and don't get down over your ileo, just be glad you're healthy, and if someone cannot accept you for the way you are, then they are not worth knowing in the first place. God bless.
Hi balpeen.... I just happened to see your requests regarding my comments... First of all, I'm 6'2'' and 220 lbs, which makes me about 25 lbs overweight (according to some insurance weight tables I am familiar with... I have a paunch and the worst of it is right around my middle where the stoma lies). First, let's deal with stomach acid dissolving sealing paste... I use the 4' coloplast strips and I can assure you that stomach acid does NOT dissolve the paste.... Body heat will make it creep but dissolve it NO... Think about it... If it dissolved the paste, everyone would have constant burning and itching issues... Which is not the case. Problems usually occur in the way the materials are applied and lifestyle.... Sweating, high levels of activity, steam from bathing will all negatively affect the ability of the wafer to stay attached.
So this is how I prepare and apply my wafer using the two-piece coloplast system.
1. Cut the wafer hole to fit around the stoma, not tight and not loose... You want the paste to fill in around the stoma as it smooths out under the wafer once your body heat begins to activate it... It will creep into all the small spaces and make a seal.
2. Heat the cut wafer, I give it 12 seconds in the microwave... That might not be for everyone but it works well for me.
3. Prepare around the stoma... I use baby wipes... No soap... I shave the area if necessary using coloplast shaving powder... Wipe it clean then use a barrier spray. DON'T CUT THE SKIN.
4. Prepare the paste... My stoma slopes downward so I cut the hole in the wafer slightly egg-shaped... Just slightly so 25mm on the top half, 30 mm the bottom... Back to the paste... I use about 85% of the paste stick... I double it and then roll it between my palms to make a 3.5-inch strip... NOTE the strip is round but 3.5'' long. I then peel back the plastic covering on the bottom of the wafer and apply the paste around the stoma hole. Putting it close to the hole will allow it to fill in the gaps around the stoma as it heats and makes a nearly half-inch seal outwards from the stoma. 5. When you put the wafer in place around the stoma, do NOT touch the sticky underside of the wafer. 6. With the wafer in place, circle the stoma with your finger to make sure it is well seated against the skin. If the edges of the wafer buckle, tape them down. I use 3M transpor tape, which is great when you want to protect the wafer prior to showering. 7. Put on a pair of trousers... This will help concentrate body heat to the paste which, as it heats, will creep making a solid seal around the stoma. And that's it!!!!! Good luck... If you have questions, leave them here, I will check back!!!
Hi, I am new to this ostomy business also! It's been about 6 months and it does get easier! As for foods, I eat anything that I want - in moderation, of course. I got a blockage only one time so far and that was from whole kernel corn - so - suffice it to say I don't go there anymore!!
It was a big adjustment and still is, but I make a "grateful list" and it helps. One of the things I am most grateful for is that I am alive - it was emergency surgery because of Crohn's Disease and a ruptured colon. One of my favorite things is to ride my motorcycle and I thought that I would not be able to anymore - but I was wrong!! I ride all the time now - because I am not in pain anymore because of the Crohn's!!
Have had ileo since 1976 now; just have to tell what my doctor said to me when I asked what I could eat. He did say gassy stuff might be troublesome but other than that he said..."if it makes you sick, JUST DON'T EAT IT AGAIN".
Actually, only garlic bothers me at all. Thanks mostly to be free from UC. Good luck. Zack in Michigan.