I have a long list of illnesses (see it here). In 1995 when I was fifteen, I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Thursday, November 22, 2012

About The Bag

  UC = ulcerative colitis        ileo = short for ileostomy        ostomate = a person who is living with an ostomy  
  ostomy = an artificial opening for the elimination of bodily wastes (includes ileostomy, colostomy, urostomy, jejunostomy, etc.)  
  tail = the skinnier, bottom part of the ostomy bag where the output drains from when emptying.  
  takedown = surgery in which the ileostomy is reversed and j-pouch is hooked up for use.  

I've spent a lot of time talking about the disease, the surgery, and the recovery, but I haven't really delved into what it's like to live with an ostomy bag day in and day out, so I figured I'd dedicate a post to listing off all the little things I've observed, noticed, and learned about living with an ostomy so that those who are going to go through it one day know what to expect.  I've only been living with my ileostomy for seven weeks now, so some other people who have been living with theirs for longer may be a better resource for all things bag-related, but here is what I've come up with so far... the good, the bad, and the ugly.

PROS
  • First and foremost is returned health; for many people an ostomy has given us our lives back and saved us from disease, which means no more cramping, pain, malnourishment, chronic dehydration, bleeding, running to the bathroom 15-20+ times a day, hardcore drugs, side-effects, risk of rectal/colon cancer, etc.
  • You have the freedom of emptying when it's convenient, which comes with the ability to leave the house, socialize, work, run errands, camp, hike, and do all sorts of other sporty activities without worrying about when you're going to use the loo.
  • It is possible to "go" without having to drop trou, which can come in handy during emergency-type bathroom situations (camping, kayaking, rock-climbing, stuck in traffic, broken toilet, porta-potty, bed-ridden, etc).  When it normally might be inconvenient to take down your pants and cop a squat, you can just empty into a ziplock or old yogurt container or whatever, or you can buy non-drainable pouches and just replace the whole pouch.
  • You have the freedom of eating almost anything.  (Just avoid foods that could cause blockages).
  • There is no urgency or cramping associated with bathroom use, and constipation is a non-issue.
  • Males retain the ability to urinate standing up, whereas previously with a disease or later after takedown while adjusting to a J-pouch, urination may trigger incontinence.
  • You are able to pass gas (out your stoma) without accidentally passing anything else (out your bum), which could happen both with disease or with a J-pouch.
  • Your "farts" don't smell... until you open the bag to empty it.
  • There are many supply/appliance options available so that if you are having trouble with the stoma site and bag itself, there are always other things to try until you find something that works.
  • No more colonoscopy bowel prep; just a 24-hour liquid diet for any scopes or procedures... though I believe this is true of any colostomy procedure and continues to be the case after takedown.  (See my link Dave Barry: A Journey Into My Colon under my "Just For Laughs" section to the right if you don't know what I'm talking about when I refer to bowel prep.)
CONS
  • Emptying the bag and cleaning the tail 4-8 times per day can be a hassle.  It can be time consuming as it takes several minutes in the bathroom each time, often getting a tiny bit of output on the hands in the process.
  • 1-2 of those times are at night, which interrupts sleep (though nighttime restroom use will also be an issue after takedown with a functioning J-pouch).
  • Changing the bag twice a week is a hassle.
  • Your bag can fill with air which can make it appear and feel more full, requiring you to either empty or "burp" the bag.
  • The risk of a blockage is terrifying since I've heard they are extremely painful and can last from hours to days.  (Fortunately, I have never experienced one myself.)
  • Finding the right individualized combination of supplies that work can be a complicated and frustrating trial-and-error process.
  • Irritation and ulceration (open sores) form around the stoma if output seeps or leaks under the wafer and comes in contact with the skin, which is very common and can be quite painful.  In fact, frustration over unsuccessful attempts to treat and prevent this has almost brought me to tears more than once.
  • Appearance and yuk factor can be difficult to get used to for both yourself and others, including during intimacy.
  • The feeling of air or output passing out of the stoma can be distracting (though I'm sure after enough time of living with an ostomy, one would stop even noticing this).
  • The little burps and fart noises the stoma makes can be distracting or embarrassing, especially when it happens at the most inopportune times.
  • Clothing/wardrobe can be a concern; certain clothes can be less comfortable or require more frequent bag-emptying, especially for women's tighter styles... not to even mention swimsuit season.
  • The feel of the bag hanging and flopping around and plastic of the bag on your skin all the time can be annoying.
  • Living with adhesive tape, appliances, and gummy adhesive residue on your tummy all day every day can get itchy, uncomfortable, and old.
  • The bag sometimes crinkles and makes noise when you walk or move around.
  • Emptying the bag can be quite stinky unless you use some preventative measure (oral pepto tabs once a day or either hydrogen peroxide or deodorizer drops in the bag at every change), which can be embarrassing if in a public restroom or a guest at someone's house.
  • There is always a fear/risk of a major leak or blowout, which would result in gross output everywhere.
  • When travelling I have to bring a whole extra bag of stuff to carry all the supplies I will need for bag maintenance while away.
  • The need to take a set of extra emergency supplies wherever you go just in case of a major leak can be a hassle.  (Personally, I just keep a set in the car and call it good.)
  • Ostomy supplies can be extremely expensive if not covered by insurance.  Fortunately, mine are 100% covered.  (Everything else surgery-related has been as well.  Go Blue Shield!)
  • The output sticks to the side of the toilet bowl (at least in my case) requiring me to clean the toilet frequently.  (Although a messy toilet was also the case with UC.)

HELPFUL TIPS AND OBSERVATIONS

Cleanliness:
  • After emptying your bag and then squeezing and swiping out the bulk of the output from the tail with a bit of toilet paper, you can use a baby wipe to swipe/clean out the tail the rest of the way.  It is quicker, more effective, and uses less TP.
  • After you empty your bag, if you want extra cleanliness you can use a small squirt bottle to squirt water into the bag, swish it around to rinse out the bag, and then let it drain out.  It is a safe way to clean out the bag and the stoma area between changes (though it is not really necessary) and can save on toilet paper from constantly wiping out the tail.
  • Showering can be done with or without the bag attached (like during bag changes), but if you go bagless and there is ulceration around the stoma, the water will sting like a bitch.
  • Nail polish remover can help get the adhesive residue off your skin more easily.
What ileostomy?
(6 weeks out)
Wearing It:
  • It's common to tuck the bag into your underwear so it's not hanging down and flopping around.
  • If your stoma is right at your pants-line, in the beginning it will be uncomfortable to wear jeans or tight pants, but eventually this will change.  Right around the six-week mark is the first time I found I could wear skinny jeans buttoned up and still be pretty comfortable.
  • A belly band (like what pregnant women wear over their pants) worn underneath clothing can help hide the look of the bag as well as provide an extra layer of support.  In the beginning when pants can be uncomfortable, you can wear a belly band over unbuttoned pants when going out in public (especially females), and it is not noticeable at all and looks just fine.
  • If you don't want to spend the money on special underwear, belts, or bands, simply wearing two layers of underwear can provide a layer of comfort between the bag and the skin while also providing a place to tuck the bag so it's not hanging down and flopping around.
Supplies & Maintenance:
  • Call all the main ostomy supply companies, talk to their on-staff stoma nurses to explain your specific situation, and have them send you samples they recommend so you can try out different combos that might work for you.
  • The Eakin ring is moldable and can
    fit around any stoma size
  • Moldable wafers can be beneficial while your stoma is shrinking since they can fit a variety of sizes, or for more stable stomas that stick out further.  However, since they are meant to hug your stoma, if you have a loop ileo that moves around and retracts flat against your tummy frequently, that can break the seal which can allow output to seep under and come in contact with your skin.  (Big NO-NO!)  

  • Eakin Seals used in combination with a convex-shaped pre-cut or cut-to-fit (or even moldable) wafer can keep a seal that stays in place better around moving, retracting stomas.  My ulceration was completely gone within two bag changes using an Eakin Seal.  Wearing an ostomy belt (just a thin white elastic band that attaches to the bag) can also help keep things in place if leaking or seepage is an issue or during more intensive activities.

Friar's = Magic?
Make sure the ingredients are correct.
  • There are many ostomates on the Healing Well website who say that this stuff called Friar's Balsam works like magic to both prevent and treat irritation and ulceration without having to use any other powders, wipes, or seals, but you have to get the right type.  However, it is only available online and can be very difficult to find.  I ordered some from this website, and it is the right stuff (see photos).  Unfortunately, it did not work like magic for me.  If I don't use an Eakin ring, the ulceration comes back from output seeping under the wafer, so now I still use the Friar's under the Eakin to help heal any ulceration and irritation.  I think my stoma is just finicky.
  • Many are fans of one-piece systems, but I use a two-piece system because I can get a close look at how close of a seal I've got between my wafer and stoma, making sure there is no skin exposed before I attach the bag.
  • Emptying the bag more frequently can be more comfortable (the fuller it gets, the heavier and bulkier it is) as well as pull less on the adhesive seal, helping to prevent leaks.
  • The more frequently you change your bag, the less irritation and ulceration will result.  I was told every 4-5 days is common, but I've found every 2-3 days to be more effective for me.  However, now that I have found the Eakin ring to help prevent ulceration, I may be able to go longer.
Food:
Fruit cups = a safe way to eat fruit
  • In order to prevent any blockages, make sure you avoid certain foods during the first six weeks after surgery and then *slowly* and *carefully* reintroduce them.  OR if you're like me and terrified of a blockage, you can just stay away from these foods until your takedown.  Foods to avoid: anything fibrous (veggies, fruit skins, pineapple, coconut, etc.); anything hard and difficult to break down and digest (nuts, seeds, etc.); anything with a visible husk or membrane (whole grains, whole oranges, etc.).  
  • Little fruit cups meant for children are a safe and easy way to eat fruit since they have no seeds, skin, membranes, etc.  I get the all-natural kind that are stored in their own juices (instead of high-fructose corn syrup).
  • Odwalla Superfood and/or V-8 can also help provide some of the fruit/veggie nutrition you miss from avoiding whole fruits and vegetables in the beginning.
  • Food comes out looking and smelling a lot more like how it started.  You can usually tell which meal it is you are emptying out of your bag.  For example, little spices and seasonings come out in-tact, and eating a box of Red Vines can make you think you're bleeding to death before you remember that the bright red stuff coming out is just the candy coloring.  Applesauce comes out looking EXACTLY as it did going in, only it more than triples in volume.
Handy Tips:
  • Eating a few tablespoons of peanut butter can stop output for two hours, about thirty-five minutes after you eat it.  (Handy for bag changes, swimming, or intimate encounters.)  I just eat a toaster waffle or piece of toast loaded with it.
  • When the bag starts filling with air, you can "burp" it: hold the tail higher than the stoma and squeeze the output down and away from the tail; then unclip the bag and carefully press the air out, and replace the clip.  There is a way to do it from the top if you have a two-piece system, but I'm always afraid this method is too risky and could cause a mess, so I've never tried it.
  • Pills are okay to take and will get absorbed just fine as long as they are not extended release or covered in a strong, protective coating.
  • Some people are too nervous to sleep in certain positions, worried about squashing their stoma or their body weight on the bag causing a leak, but I have slept in every position many times (even on my stomach) with absolutely no problem.  It does not interfere with the function of the stoma, and I've never had a leak.  (Just make sure you wear clothes over the bag, especially with a two-piece system, so that the bag doesn't get caught up as you toss and turn and change positions.)
  • Don't let a cat jump on your lap unless you are carefully guarding your bag, as cat claws seem to be perfect tools for puncturing the bag and causing leaks.

THICKENING OUTPUT
Although output can range from thin and runny to thick and bulky within the course of a day, the thin, runny output is not what we're aiming for.  In fact, it can be problematic for a few reasons.  It gets under the seal of the adhesive wafer more easily, which makes it more likely to cause seepage or leaking.  If it is too runny too often, it can also mean things are going through your system too fast, risking malnourishment and/or dehydration.  So here are a few ways to thicken output:
Bread, banana, and applesauce:
three components of the BRAT diet.
  • Eat thickening foods (they call it the "BRAT" diet): banana, rice, applesauce, toast (or bread).  I found that my morning whey protein shakes run right through me as liquid, which means it may not be absorbing properly.  If I add a full banana, it thickens things up, slows down digestion, and keeps me feeling fuller for longer.  Hard cheese and peanut butter can also slow things down.
  • Avoid foods that can cause thin, runny output or speed up motility, like sugar, caffeine, and alcohol.
  • Don't drink much water during your meal.  It is important to hydrate, but space the majority of your fluids out twenty minutes before or after your meal.  (Although the first week or two after surgery while things are still very swollen, it is a good idea to sip lots of water with your food in order to keep things easier to digest and flowing smoothly.)
  • Add soluble fiber supplements to your diet; some prefer Metamucil while others prefer Benefiber.  These will gel up and come out as a thick, cohesive output that slides right out of the bag and is easy to clean.  The Metamucil wafers are tasty and easy to take with you as a snack.  Just make sure to time it at least two hours from any medications since it can affect absorption.

REDUCING GAS
Gas is not dangerous at all, but it can be uncomfortable, noisy, and can fill your bag with air, and during the first two or three weeks while swelling is still high, it can be very painful.  So keep in mind that the same things that produce gas before an ostomy will likely still cause gas.  If you're trying to reduce gas production, here are a few suggestions:
  • Avoid foods that can cause gas, like cauliflower, cabbage, beans, sprouts, broccoli, beer, and other carbonated beverages.  
  • Eat yogurt or take probiotic supplements.
  • Don't chew gum or drink through straws.
  • Take Bean-O with meals to prevent gas, and/or take Gas-X once you have gas to help it pass more quickly.  (These work better for some people than others.)

Unfortunately, since I have not been approved for exercise during the time between my two surgeries, I cannot comment on how it is to work out or play sports with a bag.  However, I hear people do this all the time just fine; I imagine it would just take a little extra planning.  What I have noticed is that when I move around too much (like fast walking), my appliances can sometimes get a little itchy or uncomfortable, but I suppose one would get used to this over time.

Although many people are very happy living with their ostomies, and some ostomates might even feel offended by my saying this, in my opinion living with an ostomy is honestly quite a hassle.  However, like I have said before, I greatly appreciate it for what it's done for me, because it has given me my life back; it is surely better than living with the advanced stage of the disease I had, and having it in place while my "new pluming" heals is giving me a better chance at a successful J-pouch.  I definitely wouldn't WANT to live with an ostomy forever, but it is certainly doable if I didn't have much of a choice.

P.S. - Everything listed above is just what I've noticed myself or learned from online message boards.  Any people who are more experienced ostomates are welcome to chime in on the comments section of this blog to correct or add to these lists!  


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7 comments:

  1. Fantastic Post and you put so much effort into it.

    One question though, being a teacher, that had to be extremly difficult when you are teaching because you have to be there. I mean, I work in Business so if I need to use the bathroom, I can just get up and go.

    How did you manage that with UC, and now with a J-Pouch?

    Rocket

    ReplyDelete
    Replies
    1. That is a good question, Rocket. Yes, at times it was difficult. One thing that helped is that for some reason our GI tracts tend to be less active when we're out and about during the day. My slowest time of the day was always during work hours anyway, so most of my BM's would occur early in the morning before work or later in the evening. In addition, even though I would be going 15-20x per day, I never really had a problem with incontinence. It was often uncomfortable or painful to hold it in, but usually I could wait until I had a break between classes. However, when things got really bad, sometimes I would be in a lot of pain in front of my students, and they knew I was sick. (I was honest with them.) And I was very forthcoming with my principal, who was very understanding and told me if I had to go, then just go. There were several times when I was on my way out of my classroom and would catch the hall monitor or another teacher on prep who were happy to watch my class for a minute as I ran to the restroom. I think there were only two times I left my class unattended, and my students were very mature about it since they knew what was going on. I teach at an alternative high school, and usually even the worst kids will show sensitivity when you're honest about a life-issue like that.

      Right now I have an ileostomy bag and am on medical leave, so it is a non-issue, but after my takedown when I return to work, in the beginning I expect it to be similar but with way less pain, LOL. From what I hear, even with the frequency of the adapting j-pouch, there is typically no pain or urgency involved when you have to go, so people can usually hold it for a little while until it's convenient to use the restroom. I'll request not to return to work until I can go at least an hour between BM's since my classes are an hour long.

      Delete
  2. Ronnie,

    Thank you so much for explaining that. I have a J-Pouch since 1994 and I love History, especially the Civil War. I always wanted to be a Reenactor but due to UC and then J-Pouch, I cannot do it. Because I cannot be a reenactor, that is what prompted my question to you. If I could, I would be a history teacher because that is what I love to do. My BM are too unpredictable. Mornings are better for me.


    Rocket

    ReplyDelete
  3. Thanks for sharing these valuable information. I had once read about this problem on internet but never thought about it in so much detail. People could find too many problems even after the operation. They can use the Ostomy Lingerie as they are mainly designed for people with Ostomy. Hope so that life even after the operation is good.

    ReplyDelete
  4. Thanks for the post. People who are facing problem in wearing cloths of their choice due to their Ostomy pouch attached to their stomach may take the help from the specially designed Ostomy cloths like the Ostomy swimwear, Ostomy belt, Ostomy Lingerie so that it can support the bag and you can carry your dress without any problem.

    ReplyDelete
  5. Thanks for the post. Hope so that this will help lots of people. People may also take help from the Ostomy Lingerie as it is specially designed for the Ostomates so as to make their life more easy.

    ReplyDelete

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