My life with an ileostomy

In case you haven't read my profile I'm heartoobig. I've had an ileostomy since October 2011. I'm not computer savvy in fact I'm using a kindle fire which I got after the operation. What I'm getting at is that I went into my operation without much knowledge of what I was getting into. I hope I'm not going to come across as I feel sorry for myself. I've read on here stories from other people with ileostomy and these guys can eat almost anything and have a good life and I'm jealous. I have a terrible problem with gas ALL the time. I have tried every product there is to get rid of it but nothing helps. So my diet is so limited, I've tried eating a few bites of vegetables now and then but my bag gets to the point where it's going to blow (and has blown). I LOVE VEGETABLES and I miss them SO much and my health has declined alot. It's not just that, I don't like my life with this thing! Honestly if I had known how my life was going to be like before not having my colon, I'd just let the cancer take me.

Hi Heartoobig, What a challenge you have been facing each day with the gas build up in the pouch. That would really frustrate me. I used to have some ballooning but now I use a pouch with a filter. The only problem with that is I need to change the pouch every day because the filter gets clogged (usually after one day) and will not work. Have you tried a pouch with a filter? Your supply company will most likely give you a few samples free of charge. There is also a product EZ vent. I hear it works well too with letting out the gas. I do stay away from almost all raw veggies. I eat the fresh cooked ones only.... and I really cook them. In the past, before UC, I always had issues with raw broccoli and zuchini. I drink V8 juice which has lots of vitamins from time to time. Have you tried V8? I like tomato juice too. I don't know if either would create gas. Life with an ileostomy does present its challenges, I won't deny it one bit. I was so sick in 2012 that I had no choice but to have surgery or I was going to die. But we are still here, made it and living another day. It is not perfect but....I like to think that maybe one day soon, some brillant scientist will come up with another alternative for ostomates. We never know what the future holds. It keeps me anticipating another day living life with my ostomy. Take care and keep posting. I hope that the gas issue resolves and you are able to eat all of the veggies you enjoy once again. LH

OMG, I have never heard someone say the same thing I have thought since I got colon cancer in 2011. Now I wish so much I had let the cancer take me!

I too have felt the same after my colostomy went wrong. I was given an ileostomy. If I'd known before the surgery (emergency) that I'd end up with what I have now, I would have said leave me.

I have had my ileostomy since April 2013 and have not only come to terms with it but feel very lucky. I have had the gas issues, but they settled out, and now when I eat a bite of coleslaw or cooked red cabbage, I just say, "Well, the taste was worth it." I would try eating a number of marshmallows - I keep bags on hand, and they really make a difference, as well as mashed/baked potatoes every day if you can. I eat red meat and some fish. I cannot digest carrots for whatever reason; it does not matter how I cook them. I love homemade pickles, and they work fine. You have to eat all the time -- and I keep candy on hand for the calories. I have FAP and other digestion issues, but these all work -- also, milk works very well for me, and I never touch alternatives - use whole milk - do not eat high fiber or enriched grains -- they work against you. I lost the prerequisite 35 lbs and am fine now - I like the new me and am very thankful that the challenges are easy compared to losing a limb or whatever...

How to Get Back to Fitness After Ostomy Surgery with Ryan | Hollister

I am so sorry for those of you who feel that you would have preferred to die rather than have the ostomy. I have had mine over 40 years and compared to a life of living in the bathroom and hospital, my ostomy gave me the opportunity of living a full and productive life. I do remember having problems with gas and fistulas for the first few years, but it eventually settled down and I usually have to remember that I need to change it once per week. I do need to watch my roughage intake but gas is usually not a problem. Has anyone ever thought of using beano to eliminate the gas or asking a doctor for something to control it? All the best to all of you.

Hello Heartoobig, I have been using the Osto EZ Vent for a couple of years. Be sure to read the instructions. You attach it to the top of the bag, and carefully poke a hole in the plastic under the vent with a toothpick, and every time your bag fills with gas, you open the cap of the vent and let it out. Just be sure that the vent is properly attached, and that the toothpick doesn't pierce anything except the plastic directly under the vent. It really works well. If the hole gets plugged, just carefully poke it again. I get mine through Edgepark, and it is covered by my insurance. Good luck, Sandi

That sounds like a wonderful idea -- I use the disposable bags and they have vents that just don't work all that great. I will ask when I order again so I can eat more of my old favorites. I have learned to manage just fine with the bags I have, but there would be even better!

Hello, I have the exact same problem. I found out I have Celiac Disease since having life emergency surgery in 2009. It's tough living with this. I hate it too. Since eating gluten-free, my pouch doesn't blow up anymore unless I eat the wrong food. It got so bad I suspected something wasn't right. I got tested by having blood work done. You must eat regular gluten food for at least two weeks to have a positive result. If you are eating gluten-free, the test comes out negative. I had to repeat the test twice. If I want to eat vegetables, I eat zucchini and cauliflower in small amounts. I have come to terms with this as I cannot have the reversal due to kidney disease. I have tried all the gas products and nothing helped. I change my pouch 3 times a week and change the wafer every 5/6 days. In the summer, though, every 4/5 days. My friend uses Hollister without a filter and changes her pouch every day and a half. She said that helps cut down on the gas. I had too much cauliflower today and I am paying for it. I have noticed over the years certain foods give me more gas than normal. Eating gluten-free has really helped.

Coloplast also makes a new pouching system that is supposed to reduce gas. I sometimes wear them when I go out to golf. I am not sure if I really like them because of the material. I do like the fact that you can bring up the pouch as it has Velcro which holds it up. SenSura Mio 12262 flex ostomy 2-piece Easiclose wide outlet with inspection window, grey in color.

I get my ostomy supplies from www.edgepark.com. They have the following product: Osto-EZ-Vent, Bag of 10 EA, Item # KMEZVENT. It goes in your pouch at the top by puncturing and sealing, and it won't plug up like the filtered bags, which I gave up on because one can't change the pouch every day. If you are on Medicare, they will contact your doctor to get a prescription, then they will be free after you've met your insurance deductible. I'm not happy having to have a pouch either, and I've had it since 2008, but it's not the worst of my challenges in that I have had 4 major strokes and I have peripheral neuropathy from my toes to my shoulders and down both arms and hands. I look at it as well; at least I have my loved ones, and one day I'll be with my Savior in Heaven for eternity, and all this will be long forgotten.

Osto-EZ-Vent Bag of 10 EA Item # KMEZVENT

I have never had cancer but I was dying a slow death due to ulcerative colitis until my ileostomy surgery 37 years ago. I had excessive gas the first year but then my system adjusted to life without a colon. For me the ileostomy was life saving and life enhancing. It sounds like the issue is your digestive system that the medical community should be able to come up with a plan that would minimize the gas. It will get better but you will have to find the right doctor and a WOCN nurse to help with appliance adherence.

Have you ever tried Beano? It's advertised to prevent gas. Why not try it and let us know if it works?

Yes, I recommended trying Beano as well. Another one might be GasX. I just saw an ad for that. Maybe one of those will help.

What have you tried so far? There are many options, from food sensitivities to lacking enzymes to digest certain foods. If it is only vegetables that you are having problems with, I would try HCL/pepsin, amylase, alpha-galactosidase (in Beano), etc. Dysbiosis is another thing that could cause excessive gas (in that case, high-quality probiotics with Saccharomyces boulardii and Lactobacillus rhamnosus). You can use a natural antimicrobial first to kill off pathogenic/gas-forming bacteria first like oregano oil or garlic. It could also be leaky gut, which has a host of problems (and solutions like 5 grams of glutamine amino acid per day plus some of the above). These are pretty in-depth topics, but I wanted to give you some ideas to further research. If you haven't heard of these ideas... keep searching and trying things :) Mainstream medical care is amazing at giving quantity of life; however, it is not great at giving quality of life. These conservative care type options have given me quality.