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Living With An Ostomy

You Don't Have To Like Your Ostomy... But You Do Have To Learn To Live With It!

Having any type of surgery, especially one which alters your body such as ostomy surgery does, is traumatic. It is ok to be upset, grieve, get angry, scared, feel as though you're the only person in the world with this type of surgery - I dare you to find an ostomate who has not had those feelings. Yes, it will take time to adjust to your surgery, but from my experience, the more you learn about ostomies and ostomy surgery, and the more ostomates you can talk with before, during and after your surgery, the easier it becomes to accept your stoma. Go here for a list of those who are willing to email and "chat" with you about your surgery. Remember, you can live a full and fun life with an ostomy. The only thing that will stop you is your mind - not your ostomy! In fact, life will probably be 1000% (no, that's not a typo) better for you after your op.

The best tools an ostomate can have are a sense of humour and willingness to laugh at themselves - even when leaks and accidents happen in public. It may not seem so funny at the time but as long as you can look back later and think "oh well, at least it's not the worst thing that can happen to me" then you are fortunate indeed. This will lead to a very positive outlook on life. Remember, people will always react to your emotions. If they sense that you are unhappy or uneasy with your surgery, then they are going to act the same way. If, on the other hand, you have a positive and confident outlook on life and don't let your stoma bother you or control your life, then (in the majority of cases), other people are not going to worry about your stoma either. You own your stoma - not the other way round!

For the purposes of this document I am going to concentrate on life with an ileostomy because that is what I have, but generally it can be adapted to any type of ostomy surgery.


Three Blind Mice
"Actually, the farmer's wife got Lenny's bowel too; so he has to wear a colostomy bag."

What Is An Ileostomy?

An ileostomy is usually performed in the case of severe Ulcerative Colitis or Crohns Disease. It involves removal of the colon, and in some cases, the rectum, which have been affected by the ulcers or inflammation. It can also be a result of familial poyposis, hirschsprungs disease, a defect at birth or bowel cancer. For more information on the different types of ostomy surgery, go here.

You will have no control over when your ileostomy decides to "go" or pass gas. You can't feel it happening normally. The only way you know that your stoma is working is that your bag will feel start to feel full and you'll have to empty it. I usually empty mine approx 6 times a day but it varies from person to person.

The gas can be a bit of a problem, I won't lie to you about that. Altho, usually gas passes through my stoma without a sound, somehow Harriet, my stoma, just knows when I'm in a quiet meeting, etc and that is her signal to start singing out loud. A hand pressed over the stoma can muffle the sound a bit - if that doesn't work, there's always the excuse that I'm hungry and my stomach's growling!

Because of the shortened bowel length,food will pass through you much quicker than it does in "bowel intact" people. The time it takes could vary between 20 minutes to several hours following a meal depending on what you ate. It's always interesting to see what food gets digested during these times as food that is undigested can come out of you exactly the same way it looked when you ate it!

Normal stool from an ileostomy is of a paste like consistency but there are times when your stool will be watery, if for instance, you haven't been eating much due to illness. A lot of people like to thicken their stool up by eating bananas, etc. This is fine. Having a watery stool for a short time is fine too (as long as it doesn't go on for days! - in this case, see your doctor because it could indicate a blockage of some sort). Just remember to drink lots of fluids at all times, because ostomates tend to dehydrate a lot quicker than "bowel intact" people because the large bowel which absorbs fluids is no longer there to do it's job.

Don't be alarmed if straight after your op, your stool is watery and greenish in colour. Apparently, this is bile and is perfectly normal. With time, as you start to introduce solid foods back into your diet, your stool will go to it's normal brownish, pasty consistency.


Choosing The Right Appliance System

Ok, first and foremost, I want you to remember that there is no one appliance that is right for everybody. It will be a matter of trial and error in most cases, before you eventually settle on the sort of appliance that you will use. Some people prefer to use a one-piece appliance system and others swear by the two piece system. It is simply a matter of choice and do not let anyone try and tell you that their system is better than yours. Always ask for free samples before buying a new product. That way, if it doesn't suit your skin, you haven't wasted any money. Most manufacturers will willingly give you samples.

The majority of the appliances available today are odour-proof and light weight. Some are disposable and some are reusable depending on the system you choose to use. No one can tell that you are wearing an ostomy bag as it is not visible under your clothing (although I have noticed that some brands of bags tend to "rustle" a little).

Go here for pictures and descriptions of types of appliances available for each ostomy.


Changing Your Appliance

Here are some tips on changing your appliances. This is taken from the "Inflammatory Bowel Disease Centre". Once again, remember, this is only a guide and whether you follow the steps to the letter is up to you. In time, you will find your own routine which you will become comfortable with.

A. 2-Piece Appliance

Equipment Needed:

  • flange
  • pouch
  • paste (optional)
  • powder(optional)
  • wet/dry cloths
  • measuring guide
  • scissors/pen
  • plastic garbage bag
Steps:
  1. Assemble all equipment.
  2. Gently remove the appliance, pushing the skin away, not pulling the wafer off. Remove the flange and pouch as one piece. Save the closure clip. Dispose of the soiled appliance.
    Remove the excess stool or mucus from around the stoma with a dry cloth. Gently cleanse the stoma and surrounding skin with a wet, warm cloth. A mild soap may be used as long as the skin is rinsed well. Pat skin dry.
  3. Use a mirror to observe the stoma and skin. Apply protective powder to any sore or irritated skin areas. Remove excess powder with tissue.
  4. Use the measuring guide to determine stoma size. Some wafers ask you to leave approx 1/2 inch space between the opening and the stoma, others want you to cut the wafer to the exact size so read the instructions on the box carefully. Once the swelling of the stoma has subsided, measurement is generally not required and you can switch to pre-cut flangers if you wish.
  5. Trace the measurement on the back of the flange.
  6. Cut opening and remove centre white backing paper.
  7. Apply a ring of paste around cut opening on the back of flange (optional) and set aside or apply the paste directly to skin around the stoma.
  8. While in either a sitting or standing position, centre the flange over the stoma. Remove the remaining white backing paper and smooth out adhesive.
  9. Secure the pouch to the flange. Apply closure clip.


B. 1 Piece Appliance

Equipment Needed:

  • pouch
  • paste (optional)
  • powder (optional)
  • wet/dry cloths
  • measuring guide
  • scissors/pen
  • plastic garbage bag
Steps:
  1. Assemble all equipment.
  2. Gently remove the appliance pushing the skin away, not pulling the wafer. Save closure clip if using an open-ended drainable appliance. Dispose of the soiled appliance.
  3. Remove any excess stool or mucus from around the stoma with a dry cloth. Gently cleanse the stoma and surrounding skin with a wet, warm cloth. A mild soap may be used as long as the skin is rinsed well. Pat skin dry.
  4. Use a mirror to observe the stoma and skin. Apply protective powder to any sore or irritated skin areas. Remove excess powder with tissue.
  5. Use the measuring guide to determine stoma size. Some wafers ask you to leave approx 1/2 inch space between the opening and the stoma, others want you to cut the wafer to the exact size so read the instructions on the box carefully. Once the swelling of the stoma has subsided, measurement is generally not required and you can switch to pre-cut flangers if you wish.
  6. Trace the measurement on the back of the appliance.
  7. Cut opening and remove centre white backing paper.
  8. Apply a ring of paste around cut opening on the back of appliance (optional) and set aside or apply the paste directly to skin around the stoma.
  9. While in either a sitting or standing position, centre the appliance over the stoma. Remove the remaining white backing paper and smooth out adhesive.
  10. Apply closure clip if using all open-ended drainable appliance.


Remember:

  • Your stoma should be pinkish red in colour - I've heard it described as a "rose bud". If it changes colour at all, try making the hole in the flange a little bigger as it may be too small and restricting the blood flow. If the colour change persists, report it to your doctor or ET nurse.
  • Some people change their appliance once a week, some twice a week, some more frequently. The average wear time is approx 3 - 5 days. However, if you don't fit this pattern, DON'T WORRY. It's the usual story - everyone's different.
  • If your skin under the appliance becomes itchy or sore, change your appliance immediately. It usually means that you are leaking under the appliance If, however, the problem persists, see your ET nurse. It could be as simple a problem as you are allergic to the adhesive you're using or it could be something more.
To empty your appliance, I've found the easiest way for me is to sit well back on the toilet seat with my bag between my legs. Remove the clip and empty the contents into the bowl. You may want to put toilet paper into the bowl beforehand to prevent "back splash". When done, simply wipe the tip with toilet paper and put the clip back on and you're done - just be careful of those pubic hairs when putting the clip back on - ouch!!!!!!. Some people prefer to rinse the bag out with water but if you do this, please be careful as excess rinsing can cause the wafer to erode quicker.

Medications

  • Enteric coated medications are one of the biggest problems for ileostomates. The coating is designed so that the medication doesn't get absorbed until it reaches your intestines. Subsequently, this can be a problem for ostomates in that the medication won't get absorbed and quite frequently can come out into your bag fully intact. Always check with your doctor if s/he is going to prescribe this sort of medication for you.
  • Some antibiotics can cause yeast infections on the skin around the stoma.
  • If using diuretics, you may need to take in additional high potassium foods as dehydration can occur due to their use.
  • There will be no need for you to take laxatives. People with ileostomies can not get constipated.
  • Some people prefer to use stool thickening medications such as Lomotil or Imodium if they have a high ostomy output. These are fine but be careful not to overuse them.

Food

Food Oh yes, here comes the good part. If your ileostomy is due to UC, you will be pleased to know that however restricted your diet was before, you should now be able to eat almost anything you want to. It is for this reason, that some ileostomates tend to put on weight after their op - I know it happened in my case. If your ileostomy is due to CD, however, there may still be some of the same restrictions on you as there was before your operation unfortunately.

When first introducing new foods into your diet, it might be best to introduce them one at a time. Some foods can cause problems such as blockages in some people. Common problem foods seem to be : corn (esp popcorn), peas, nuts, fruit skins and seeds. Other people, on the other hand, find they have no problems at all with any foods. Please don't be afraid to try new foods because someone has told you it caused a blockage for them. Everyone is different in what they can tolerate. Always remember to chew your food really well - this will minimise the chance of a blockage in most cases.

As an ostomate, remember you will need extra salt in your diet to compensate for that which doesn't get absorbed by the large bowel anymore. I have known some ostomates who literally craved salt to the point where they would sprinkle some on their hand and lick it up. Well, now we know why.

As we ostomates tend to become dehydrated a lot easier than "bowel intact" people, it is very important that you drink at least 2 litres of water a day. For a quick dehydration fix, try Gatorade, Powerade or any of the "thirst quenching" drinks - they replace fluids and electolytes really quickly.


Gas

Now, the problem with all that food that you're now allowed to eat is that some of it can and will cause gas - quite a bit of gas in fact - and where does it end up? In the bag of course! The main problem I have with gas it at night time. I usually wake up in the morning with the Good Year blimp on my belly! Over time you will be able to work out for yourself which foods cause the most gas in you but for now, here's some starters:

  • carbonated drinks
  • chewing gum
  • onions
  • spicy foods
  • cabbage
  • cauliflower
  • broccoli
  • pizzas tend to do me in especially!
Of course, this doesn't mean that you necessarily have to avoid these foods completely. As long as you're prepared for the excess gas, go for it. Also smoking and drinking through straws can cause you to swallow huge amounts of air and in turn cause gas. Go here for an amusing article about a doctor whose life work is studying flatus.

Sometimes, if I have been over indulgent on the gassy foods just before bedtime the night before, there is so much gas that it causes the bag to burst and I end up in a nicemess! Hint: if that happens, the easiest thing is to have a shower to clean yourself off, put on a clean bag and change the bedsheets - a real fun activity at 4.00am in the morning when you're still half asleep! Moral of the story: DO NOT have gassy foods or drinks just before bedtime - you will probably pay for it. The good news is that most ostomates seem to be able to "train" themselves into waking up at night before the leak gets too messy. Biohazard

Odour

Ok, everybody, and I mean EVERYBODY's stool and gas smells. But we ostomates' outputs tend to smell worse than other people's. I don't mean in everyday living - today's bags and appliances are odourproof so as long as there are no leaks, there is no smell, BUT it's when you empty your bag that the ostomate's anxieties tend to start, esp if you are at a friend's place or at work! Yes, it does smell really bad but thankfully, there are some things you can do to combat it. There are any number of deodorisers, ones that you take orally, ones that you put in the toilet or ones that you put in your bag, available to us from ostomy suppliers. Take advantage of them.

Also try to avoid foods which are known to produce odour such as: fish, onions, eggs and beans. Capsicum (that's red and green peppers to my American friends) and yoghurt can help reduce odour.

Remember, if all else fails, just use the age old trick of striking a match in the toilet - works for me!!!


Blockages

A food blockage means literally that. Some people are lucky enough to have never have even one but then again, I know some people who have had several. Some bits of food have become stuck in your small intestine and are unable to make their way down through the intestine and out into your bag. Signs that you may have a blockage include: watery stools, fever and/or nausea, pain and/or cramps in the stomach area, your ileostomy has stopped working or it could work almost continuously.

Some home-remedies include: Relax (if you can through the pain!) - if you can tolerate wine, have a glass - it helps relax the intestinal muscles, massage your stomach, take a hot bath or shower - this will also help relax the muscles, take a dose of Milk of Magnesia, drink some hot tea. Some people find it beneficial to go down on all fours and position your self so that your bottom is stuck up in the air (an undignified position but apparently it does work ).

If none of the above work, then seek medical attention. Go to the doctor or to the ER department. A food blockage can become serious if left untreated.


Hernias

Hernias around the stoma area can be a problem for some people. The reason being that your stomach muscles have now been compromised - there is literally a hole right through the stomach wall and they are therefore weaker than usual. A hernia usually presents itself as a bulge at the side of your stoma and are quite painful to touch. The skin is often red over the area too. See your doctor immediately if you suspect you have one.

So, if you are into weight lifting or have to lift heavy items at work - do it carefully! A limit of 50 pounds is considered to be the norm for ostomates though is by no means set in concrete. When playing sports, etc, there are "Hernia belts" you can purchase from certain ostomy suppliers which can help minimise the risk of hernias.

Copyright 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007 Shaz's Ostomy Pages. All rights reserved.
If you would like to use any of the images in these pages, please email me to get permission. Thanks.

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