Ostomy FAQ

Frequently Asked Questions (and Answers) about Ostomies

Mention the word “ostomy” to most people and you’ll likely get either a blank stare or a confused look back. Because of this, ostomies are often very misunderstood, even by people who are very in tune to the inflammatory bowel disease/gastrointestinal world (I know I was one of them). So I have attempted to put together a list of Frequently Asked Questions when it comes to all things ostomy.

This is based on my experience with an ileostomy, since I don’t have a colostomy or urostomy and am not as familiar with how they work, even though a lot of the information is relevant to all three types.

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What is an ostomy? An ostomy is a non-natural opening in your body by which a person releases waste. (Read: What is an ostomy?)

What’s the difference between an ileostomy, colostomy and urostomy? The type of ostomy is dependent on what part of the digestive tract is used to make the stoma. An ileostomy uses the small intestine, a colostomy uses the large intestine and a urostomy uses the ureter and part of the small intestine. (Read: Ileostomy, colostomy, urostomy: What’s the difference?)

What is surgery to get an ostomy like? There is no major prep for surgery other than not eating for 24-hours beforehand. The surgery itself is called a colectomy (can be partial or full) and usually takes around 4-5 hours. The procedure can be done laparoscopically or the surgeon may make an incision. They will remove the colon (or part of it), create a stoma, and close off the rectum/anus. They may leave a piece for future reconnection or they may remove the entire thing.

What is the recovery period? Having your colon/part of your colon or bladder removed is a major surgery, so be prepared to give your body plenty of time to heal. You will spend at least 3 days in the hospital, possibly up to a week or even more. They will want to make sure that your ostomy is fully functioning. Most doctors say 6-8 weeks for recovery. This will depend a lot on the surgery, whether it was laparoscopic or open. Even then, it really takes about 6 months to feel totally normal again (but I believe this is true of most major surgeries.) And that doesn’t mean you will be feeling bad, but maybe just not feeling 100%.

Will I still be able to do the same things I do now? Yes, you will! Having an ostomy will not keep you from taking part in any of the activities you currently enjoy. There may be certain activities are times when you may need to do something a little differently, or perhaps less frequently. (Think: sit ups, certain stretches, etc.)

What does the bag feel like? When you first get the bag, it will feel very foreign, but after a few weeks you will stop noticing it so much. You usually can’t feel it until it gets filled up and heavy or if it starts pulling away from the skin. Because of the acid in your poop, the area around the stoma may get irritated, which can be painful. Also frequent bag changes may lead to irritated skin.

What does the pooping feel like? You really can’t feel it. I know it seems like you should, but you likely won’t notice it until your bag gets heavy since there are not feeling sensors in your intestine. The only times I usually notice it being active is if I am laying on my stomach or if it is has gotten under the wafer and started to leak.

What about leaks? To be honest, leaks are going to happen at one point or another, but they don’t have to totally wreck your day. The key is to learn to recognize the signs of an impending leak and to be prepared for when it does happen. Signs such as itching around the stoma or a feeling of the bag pulling away from the skin may indicate that a leak is beginning. Keep supplies handy so you can swap out the bag if need be. (Read: Out of the Bag: Dealing with Leaks)

Will others be able to smell it? Most likely no. You may smell it a lot right at first because it’s new, but other people aren’t going to notice it. You may still catch a whiff of it every now and again, but it’s usually never enough for another person to nice, much less associate with you. The one exception may be in the case of a leak.

What about passing gas? You will still pass gas and, unfortunately if you have an ileostomy, you are not going to be able to control when it happens. However, in my experience, most times it will simply fill the bag up with air. Very rarely do I deal with any “fart” noises. The exception is in the first few weeks after surgery, when your body is adjusting you will likely have a lot more gas that you will later on. Be aware of the possibility of this causing leaks when you’re asleep. (Read: Out of the Bag: Passing gas)

Can I still have sex? Yes, you can. Having an ostomy really doesn’t change anything about having sex, except that you do need to be aware of the bag so it doesn’t get pulled on or anything like that. Wearing an ostomy wrap or maternity band is a great option for keeping the bag out of the way. (Read: Out of the Bag: Sex with Ostomy)

Will I still be able to get pregnant? You can still get pregnant with an ostomy. While having surgery in your stomach-area and the following scar tissue could make conceiving a baby more difficult, there is no reason you should not be able to get pregnant and carry that baby to term. Although, you will need to discuss with your surgeon the best option as far as vaginal or c-section birth. (Read: Can you still get pregnant with an ostomy?)

How often do I have to empty it? It really depends on the type of ostomy. For an ileostomy, you will likely need to empty around 5-8 times per day. If you have a colostomy, especially one that’s continent, you may only need to once per day. (Read: A day in the life of an ostomate)

How often do I have to change the bag? Again, this is going to be very different for different people. Most people get between 3-7 days on each bag, but there are some who need to change more frequently. Be sure to try different bag brands and figure out what works best for you.

How big is the bag? The bags do vary in size somewhat, by on average, they are approximately 8-inches long and 6-inches wide. They do not stick very far off of the body. The bags can be folded or rolled up, too, making them a little shorter. There are also smaller bag options, however, these need to be emptied much more often. You also can get a small closed-ended pouch that will need to be changed regularly.

Will the bag be visible to others? Not if you don’t want it to be. It hides easily under most clothes. As someone with an ostomy, you will likely be hyper-aware of it being there and feel like everyone can see it, but in my experience, no one ever notices it.

Can I still wear the same clothes? Absolutely! I have said before that I have not thrown own one article of clothing since getting my ostomy and that’s the truth. You can still wear whatever you want, but you may consider an additional accessory such as a maternity band to give you more support. (Read: Out of the Bag: What to wear with an ostomy & No, I’m not pregnant)

Can I get the bag wet? Yes, you can feel free to shower, bathe and swim with your ostomy bag. Even prolonged time in the water will not usually cause the bag to peel away from the skin. But it is a good idea to dry it well afterwards. (Read: Out of the Bag: Showering & bathing)

What can I eat with an ostomy? This is going to be dependent on the person, but for the most part, you can eat whatever you want. The bigger issue is just paying attention to what you eat, limiting the amounts of certain foods (such as nuts, seeds, leafy greens, raw vegetables, beans) and being sure to chew your food very well. Also drink lots of water! (Read: Watching what I eat & Hydration is cool)

What about blockages? Unfortunately, blockages are likely to happen at one point or another. The tell-tale signs are nausea, pain in the stomach and watery output. Some at-home remedies include drinking lots of water, maybe even using a little laxative (But be careful with this! Taking too much can lead to even bigger problems! Talk to your doctor.), taking a warm bath, massaging your stomach or putting a heating pad on it. If it gets too bad, you do need to consider going to the emergency room to be checked out. (Read: My first major blockage & Intestinal blockages during pregnancy)

Will getting an ostomy change my life? Yes and no. Yes, it does change the way you operate on a daily basis. Yes, you will have to take it into consideration in many of the decisions you make. But no, you will not have to drastically change your life. No, your life is not over. You can still do all of the things you want to do and be whomever you want to be. And finally, yes, living with an ostomy has the potential to change your life for the better and to give you back some of what was taken away.

Is there anything I missed? Any questions to add or answers to expand? Submit them in the comments below!

20 thoughts on “Ostomy FAQ

  1. Angela

    Thank you for this list of FAQs. I am facing a possible colectomy so this was very helpful. I have bookmarked it to come back and read the links if necessary. (I’m still hoping my meds start working better so I can avoid or at least delay surgery.)

    Reply
    1. Stephanie Hughes Post author

      I hope you are able to avoid the surgery, too. But if you do end up having one, please feel free to reach out.

      Reply
  2. Furrykids Papp

    Hi Stephanie,

    I love your site! Thank you so much for all of the great information! I was hesitant to ever get a facebook account but I thought it would be good for this type of information and now I am glad I did! I was diagnosed with Crohns/colitis in Feb. 2013, was on prednisone, asacol and humira but unfortunately nothing worked! My GI was adamant that I have a colectomy so I went for a second opinion at a large well-known hospital about 90 minutes from home. I am grateful it is this close but still far when you have to keep going to the restroom!

    Reply
  3. Furrykids Papp

    Sorry, message was cut off – this may get cut off too.
    Continued: Anyways, they really didn’t try any new meds but doubled my dose of humira, etc. I ended up having a diverting ileostomy in Aug. 2014 just to bypass the colon in an attempt to help it heal. Unfortunately things got worse and I ended up going the route of a total colectomy with a permanent ostomy! Just had my surgery on Dec. 5th, 2014! I am into my 5th week of the recovery process and am getting stronger every day! Hardest part of the surgery for me was the pain from them sewing things up down below. It has definitely gotten better but I still can’t sit straight up for any length of time! Did you or anyone else have that done and if so, do you remember how long your pain lasted and things healed up!

    Sorry for the long drawn out message

    Reply
  4. Furrykids Papp

    Thank you again for all of the great info! So glad your surgery was successful in giving you back your life!

    Dianne

    Reply
  5. Diane

    My stoma is barely flush with my tummy when I am laying down. When I sit or stand it becomes a “cave”. Sunken in. Nothing sticks out like a normal stoma should….. therefore getting the appliances to stick is nearly impossible. VERY FRUSTRATING!!!!!! Any advice??????? My dr said she couldn’t do it better because of my weight/fat. Don’t know if this is actually true or not. I am 5’1″ and weighed about 230 when I had the surgery.

    Reply
    1. Stephanie Hughes Post author

      I’m so sorry, Diane. That is so frustrating. Have you tried all of the different types of bags? The convex one in all of the different brands? Sometimes the paste or rings can help, too. I don’t have a magic formula, but often it’s finding the right bag and right accessories that fit you.

      Reply
    2. AAA

      Diane-
      I hope you’ve found a solution by now, but if not ask your ostomy nurse, surgeon or supply provider about convex wafers and an ostomy belt. I use Hollister products and when my home care nurse changed me to a convex wafer it made all the difference. No more leaks! I too have an “innie” colostomy.

      I honestly don’t think it had anything to do with height/weight, maybe more location of your stoma compared to what was removed (that’s my guess though). My home care nurse also uses skin prep on me as I’m tape sensitive and it also seems to help with adhesion! It’s all trial and error that’s for sure!

      If you have any skin creases that cause little valleys around the stoma that can cause leaks too- stoma paste can be used to help fill those areas too. I’m still learn win with my home care nurse since I still have an open wound from my surgery but will likely be on my own in the next 2-3 weeks when my wound is healed. And those are just a few products she’s been trying to find the right mix! The Hollister website has some great videos and resources in general about their products and ostomies in general. Check it out.

      1st surgery 1/22/15 for 10-12″ sigmoid colon removal (laparoscopic surgery) due to years of bouts with diverticulitis. 4 days in hospital, after a few days home I started having severe pain. Went to ER on 1/30 early morning. They wanted to send me home. Kept saying they saw nothing wrong. Even my surgical team wanted to release me and they left me sitting in the ER unattended for about 3 hours. I then started to freeze to death, and begged someone to take my temp… It was 103.5 and rising. Surgeon finally agreed to admit me. At around 2am on 2/2/15 I was rushed into emergency surgery as I had gone septic from a leak from the first surgery and my abdomen was filling with waste. 5 days in ICU And over 20 days in the hospital I was released to go home on 2/20/15. The 2nd surgery removed 4 additional inches of colon, created a larger mid-line incision and they added a temporary colostomy. I’ve been at home with a wound vac on my midline the whole time and it was removed on 3/18 now using aqua cel dressing to heal the rest of the way. I will say adjusting to and ostomy has been harder than dealing with the wound. The real test will be when my wound is healed and I’m on my own with my ostomy! I pay close attention each visit and hope life will be more normal once the wound is healed. Wafer placement is complicated because of close proximity to my wound. The wafer tape area has to be trimmed each time so I’m VERY paranoid of leaks and I had one every time until she switched me to a convex wafer! Sorry for the long winded background but wanted to explain where I’m coming from as I’m a newbie. I’m 37, 5’1″ typically about 115lbs., but lost a lot of weight from second surgery and extended hospital stay. Take down/reversal for my ostomy is likely in June 2015 pending my overalls recovery.

      I hope this helps!!

      Reply
  6. Furrykids Papp

    Hi – found out today I have to have surgery on my proctectomy wound because it’s not healing and it is draining. Just had my total colectomy on 12/5 :(! They may have to put a drain in! I was just starting to be able to sit from prior surgery, ughhh! Has anyone had this done?

    Thanks,
    Dianne

    Reply
  7. photogram1

    So…. please tell me how you empty your bag at work. There is someone where I work that empties down the bathroom sink! There are splash marks.. on the sink, an even on the wall around sink…and odor! I am not sure is this is healthy for the rest of us who use this as a hand washing sink… we do not know who has the colonoscopy, and it really doesn’t matter, however, we have tried talking to our “boss” about this and we get no where. I just want to know that this is not a health risk for the rest of us… and since the person is anon… how will they ever know the rest of us feel this is unacceptable and disgusting!! It is not the bag.. the procedure.. or even the person… just their nasty way of not cleaning up after themselves… please advise the best way to handle in your opinion…

    Reply
  8. Christine

    Thank you so much for all your information & more importantly your honesty. I wish I could feel the way you do. I’ve had my ileostomy since 10/1/10 – on an off – 11 surgeries in a three year period. It’s been permanent for 2 years now. It’s all I think about & dictates every aspect of my life. I spend hours in the bathroom emptying at night. My crohn’s is also active right now. My dr is looking to start infusions of entyvio. Fingers crossed. I just wanted to say thanks & I really admire your honesty. I hope one day I can feel the same way.

    Reply
    1. Cheryl

      Christine, you have to calm down, take yoga or meditation classes, crohns and digestive problems are caused by negative thoughts, obsessive thoughts, worry etc, I used to be like that for 22 years of the worst side of crohns, then 12 years ago my bowel burst in 2 places, nearly died, icu, etc etc and I started classes and researching happiness and becoming calm, accepting, positive thoughts etc and the moral of the story is for 11 years I’ve been pain free, happy, joyful, have faith that things always work out for the better etc, but seriously it starts with your thoughts and your illieostomy dictating your life is not good.

      Reply
  9. Alex

    Hi there. I think this is such a great, well-rounded blog with loads of helpful information! Your attitude about it and personality seem unshaken, so kudos to you. If you want, you can check out my attempt at a similar project you have here. I’ve been living with a temporary ileostomy since December and have a third surgery in about two weeks bc of ulcerative colitis. Feel free to let me know what you think! dearintestines.com

    Reply
  10. Kristy

    Thank you for such an informative FAQs!!! I’m facing the possibility of having this also, but just doing some last tests to ensure that surgery is my last and only option.
    I must admit that I’m scare thinking about having this huge change, but after reading your story, it has put my mind at ease. I would do anything to avoid going through the pain that happens almost weekly and to get my quality of life back!
    Thank you for sharing your advice!!!

    Reply
  11. Mary

    How long does it take for the pain and discomfort in the stomach area go away. I have been out of the hospital for 11 days. I had part of my colon removed ant my ovary which was also in the infected area.

    Reply
  12. s. Lillie

    I have had a colostomy for 29 years, developed a small hernia around stoma which created a lot of gas.I didn’t want to leave the house, just wanted to stay home away from people. Talked to an E.T. Nurse, she suggested I try Organic Kefir Probiotic Lowfat Milk, which I did, (about 1/2 cup a day), I drink it first thing in the morning before I eat breakfast and seems to help really well. Maybe this will help others.

    Reply
  13. LonnyPaxston

    I recently received a illiostomy and I’ve been told the cancer has reached my lymphnoids. I’m a 53 yr old man whose been for the most part alone for my whole life. So dealing with this has been hard enough much less without the support of family. I’ve been trying but this week I’ve been in more pain and I noticed the skin around my somma is turning dark grey. What does this mean. I went to the emergency rm but they never so much as looked at it. When I ask them to change my bag the nurse there told me they were out of them. Tucson university medical center. Thank you LonnyPaxston.

    Reply
  14. PATEL

    My wife has total colectomy on 29th march, till she is in hospital, Vomiting and no output /shit from stoma. Please any one can help me.

    Reply
  15. Lylia Bascom

    I am new to my colostomy and have a question regarding pain. I have been having a lot of pain in the area near my navel. I am unable to sleep on my side or bend over much because of the pain. My stomach also seems more distended than it has been. This pain started about a week ago. My first thought was a hernia but there is not a prominent bulge. Any ideas?

    Reply

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