|
Please read the
View Guestbook | ||
Frequently Asked Questions About Life With An Ostomy
In this page I am going to attempt to answer some of the most common questions that I am asked in regards to my ostomy surgery. Please note that these are my answers only in regards to my life and other ostomates I have spoken to and someone else may have a completely different opinion on some subjects. If you do and want your answers listed here, just email me - I will give full credit to you for your answers.
Please remember that your Enterostomal Therapist (ET) can be a valuable source of information!
- How did you feel when you were first told that you were to have your ileostomy operation?
- Is joint pain/arthritis a part of life with IBD and can it be caused by the prednisone?
- Will I still be able to wear the same clothes that I used to before my ostomy operation?
- Are there any diet restrictions once you have an ostomy?
- How frequently do you have to empty your bag?
- How frequently do you have to change your bag?
- What about leaks?
- What type/brand of appliance will suit me best?
- Can you feel your stoma working and are you aware of it throughout the day?
- Does the stoma make a noise?
- Is there an odour problem associated with an ostomy?
- Will my stoma shrink/enlarge in size over the years?
- Will I still be able to go swimming?
- How much do appliances/supplies cost?
- Do I need to take an "Emergency Pack" with me wherever I go?
- Can I go to work/school with my ostomy?
- Will I have to take any medications after my ostomy operation?
- Who do I tell about my operation and how do I explain it?
- Can you still have children and a normal childbirth after surgery?
- I am concerned about my body image. Will my husband/wife, boyfriend/girlfriend still want me sexually after surgery?
- Can I sleep on my stomach after ostomy surgery?
- The whole thing just sounds too gross to me!
- How about travelling, esp in planes? Will plane travel affect my ostomy?
- How can I tell if I have a blockage?
- Are hernias around the stoma site a big problem?
- What is a stomal prolapse?
- Why do I get salt cravings?
- Does the stoma hurt?
- What does the stoma look like?
- Help! My stoma's bleeding!
Q. How did you feel when you were first told that you were to have your ileostomy operation?
A. Being as young as I was (10 years old), I can not remember exactly what my first reaction to it was but my parents tell me that one of my first questions was "Will I still be able to go swimming?" When told I could, I guess I more or less said "go for it!" I don't remember knowing all the specifics about the op - all I knew was that it was going to make me feel better - and that was enough for me! My parents did make the final decision for me after they agonised over it for quite a while and my mother says that one of her biggest fears was that one day in the future I would turn around and say to her "Why did you let them do this to me?" I never have. I am greatful every day for my ileostomy and the life it gave back to me.
Q. Is joint pain/arthritis a part of life with IBD and can it be caused by the prednisone?
A. I have searched and searched the web for any info on prednisone vs joint pain and have been unable to find any (if someone knows of any please let me know) HOWEVER I do know that the overwhelming majority of IBDers, esp those on pred, do report joint pains/arthritis as part of their IBD. I do have arthritis and have had for some years now but I am unable to answer truthfully that it was related to my IBD. My mother had arthritis from an early age and she didn't have IBD so chances were I was going to get it anyway. I have found that some of my joint pain does go away when I start taking Vitamin B tablets and some IBDers do get monthly injections of Vit B for arthritis and the lethargy they feel (some report being able to tell when another shot is due because their energy levels subside significantly). This is because most Vit B is apparently absorbed in the colon. When your colon is not working properly - or you don't have one at all - it severely limits your intake of this vitamin.
Q. Will I still be able to wear the same clothes that I used to before my ostomy operation?
A. The short answer is "Yes", depending on where your stoma is located. If it is located above the waist then you might have a problem going "topless" (just wear a Tshirt at the beach) and apparently some men experience problems with belts if the belt is situated right over the top of the stoma. If you choose to wear tight clothing, make sure that you empty your bag frequently as the slight bulge could show through your clothing.
Q. Are there any diet restrictions once you have an ostomy?
A. Watch out! Most people tend to put on weight once they have their ostomy due partly to the fact that they can eat so many things they never could before - I know it was certainly true in my case! As to what you can eat depends entirely on your metabolism. The best advice I can give is to slowly introduce different foods back into your diet and if you find one that adversely affects you, then don't eat it! I, myself, have not found anything yet that I cannot eat (and it shows!) although some people have been warned off hard to digest foods such as peanuts and corn as these foods may cause a blockage in the intestines. Some foods are known to cause severe odour problems such as onions, garlic, fish, some reduce odour eg capsicum and marshmallow and yet others are known to produce copious amounts of gas such as soft drinks. Only you can decide what foods are right for you through trial and error.
IMPORTANT: Ileostomates tend to get dehydrated easier than "bowel intact" people. Therefore, it is important that you keep your fluid intake up. At least 6 - 8 cups of water a day is recommended.
Q. How frequently do you have to empty your bag?
A. I usually empty mine 5 times a day - when I first get up, at around lunch time, when I get home from work, once in the evening and then right before I go to bed. I am not one of those people who find that they have to get up in the middle of the night to empty. Of course this can depend on what and how much I eat! One thing is for certain - it is definately a big improvement on the 15 - 20 times a day I used to go to the bathroom when I had UC!
Q. How frequently do you have to change your bag?
A. Now this question definately depends upon the wearer and the type of appliance they use. I use a Convatec one piece bag with a Stomahesive wafer and have done so since I had my op. I have tried other brands but they caused too many skin problems for me. I usually get about 1 weeks wear out of it before the wafer starts to erode and I have to change it.
Don't worry if you have to change your bag more frequently than I do - we're all different. The average wear time seems to be approx 3 - 5 days from what I can gather. If you find that you are changing your bag everyday, however, it might be an idea to contact your ET and see if they can come up with any suggestions on how to get longer wear time - it may be just a simple matter of changing brands to one that is more suitable to your skin type!
Remember, you are probably going to get less wear time during the summer months. Sweating and swimming can both contribute to the wafer eroding much faster than normal.
Q. What about leaks? A. I cannot lie to you - unfortunately, leaks will be a part of your life, Whether it be from faulty appliances, neglecting to put the appliance on properly or your bag just becoming to full to hold its contents, every ostomate experiences leakages at some times in their lives. Even though I have had my ileostomy for 21 years now, I still get the occasional leak, usually through my own fault - "the wafer should hold out for just one more day!" and, of course, it doesn't. Fortunately, my leakages usually happen at night whilst I'm asleep. I say "fortunately" because I consider this much less of an inconvenience (if you can call a leak an inconvenience) than to experience a major leak whilst at work or out with friends. A leak at any time can be messy!
When you first have your op, you will probably have frequent leaks as you try out all the different appliances (and there are many!) whilst finding the right one for you and your skin type. As time goes on, however, the leakages should become few and far between provided you have no major skin problems and your appliance is sticking right. I have found that people tend to recommend Eakin Cohesive Seals as a solution to frequent leakage problems.
Q.What type/brand of appliance will suit me best?
A. This is entirely up to the individual and their skin types. I have used one piece Convatec bags and Stomahesive wafers since my op with no problem. Other people prefer a 2 piece system and some people prefer to wear a special belt that keeps the bag in place. Some people find that after using a certain product for years that their skin suddenly becomes allergic to it and have to find another brand. Still others use special pastes and adhesive removers when applying their bag. There is no "BEST" brand of appliance for everyone - once again it is a matter of trial and error.
Q. Can you feel your stoma working and are you aware of it throughout the day?
A. At first you'll be very aware of it because it's new. As time goes on, you'll soon find yourself forgetting all about it. Usually I cannot feel my stoma when it expels its waste products (except sometimes when it passes gas - but then again, that is usually heard not felt). Except when I feel the bag getting full or I empty it, I usually forget that my stoma is even there!
Q. Does the stoma make a noise?
A. Yes it can do but usually only if passing gas and not even most of the time then. When gas passes through it can make a noise (much like a stomach gurgle). With an ileostomy, you cannot control when and how much output is expelled. I find that 99.9% of the time my stoma is quiet. I have also found out (unfortunately) that my stoma tends to be at it's loudest when I am very nervous or in a quiet room, eg at a meeting! The best way I have found to combat this (apart from not drinking soft drinks) is to place my hand over my stoma. This can muffle the sound quite a bit. However, I sometimes wonder whether we ostomates are too sensitive to the sounds our stomas make. When I think Harriet is so loud that everyone in the room must have heard it (and if I'm with friends I will ask) but usually no one but me is aware of the noise. Besides, people with bowels intact make noises too!
Q. Is there an odour problem associated with an ostomy?
A. As long as there is no leaks, there will be no odour. When you empty your bag, now that can be a problem! There are special deodourisers you can buy if you, your family, friends, workmates, etc find the odour particularly offensive, which depending on the type, you either pop a few drops in the bag or into the toilet and the odour is gone.
Q. Will my stoma shrink/enlarge in size over the years?
A. Most likely your stoma will be swollen when you first have your op and will slowly shrink with time until it reaches it's natural size. I have not heard of anyone's stoma enlarging or shrinking due to weight gain/loss.
Q.Will I still be able to go swimming?
A. A BIG "yes" to this one. I was in swimming only 2 weeks after my op. The only drawback I have found (if you can call it that) is that the water tends to wear away the wafer a lot quicker than normal and so I have to change my bag more frequently but apart from that - no problems! Of course, I can't wear a bikini (but you wouldn't want to see me in one anyway) but one piece suits are fine. If you buy one with a splash of colour across the stoma site or with a skirt, no one will ever know that an ostomy bag hides underneath.
A word of warning: Be careful when diving in - the force of the water can tear the wafer away from your skin. This has happened to me only once though many years ago and I was lucky in that I was at home in my parents' pool. A quick change and I was back in the pool, 15 minutes later.
If flying overseas, it's a good idea to carry a Travel Certificate with you which explains in 6 different languages what an ostomy is, just in case you get questioned at the airport.
<Q. How much do appliances/supplies cost?
A. I can only speak from my experiences of living in Australia. My supplies are free through the local Ostomy Association. I pay an annual membership fee of $25.00 and order all my supplies through the Association. I do know that people in other countries may not be so lucky and depending on their insurance, etc can spend quite a bit of money on their appliances.
Q. Do I need to take an "Emergency Pack" with me wherever I go?
A. When you first have your op - definately even if only for your own peace of mind! As time goes on and you become more comfortable with your ostomy, then it's up to you to decide whether you should take anything with you, although I have heard that the tape can be useful for taping up glasses frames or even mending a broken rear vision mirror on the car and you never know when you might need scissors, etc! I started off taking emergency supplies with me everywhere, however nowadays I usually only take spare bags, etc if I'm spending the night over at a friend's place or going on a trip. I do not bother to take anything to work, shopping, etc.
Q. Can I go to work/school with my ostomy?
A. Unless there are other factors involved, your ostomy should not stop you from doing anything you want to do. I went through all my years of high school and one year of uni with an ostomy and so far 12 years in the workforce with no problems. Unless you feel it absolutely necessary, I would not even tell your bosses at work about it - I feel it is none of their business as long as you do your work. Please do be wary though if your job entails lifting heavy loads because you will be more susceptible to hernias once you have an ostomy.
Q. Will I have to take any medications after my ostomy operation?
A. This depends entirely on why you had your op in the first place. I had mine due to UC and have not taken any meds related to it since the first few weeks following my op. Indeed, I have not had to see a doctor regarding my ileostomy since the year following my op!
Q.Who do I tell about my operation and how do I explain it?
A. Tell whoever you feel comfortable in telling. There is no need for everyone to know. For a long time (about 15 years) I was extremely uncomfortable about telling even friends about it - now I have no qualms. A lot of my friends and workmates do know about Harriet and they couldn't care less. Yes, it can be nerve-wracking wondering what the other person will think about it all but I think the trick is to let people get to know you as a person first before telling them. That way they will see that having an ostomy makes no difference whatsoever. Answer any questions they may have about it as honestly as you can - your attitude in regards to your surgery will make the world of difference as to how other people accept it. I usually start off by saying something like "ok, so your bowel is on the inside, mine is on the outside" or "yes, I do have guts - I've seen them!"
Q.Can you still have children and a normal childbirth after surgery?
A. I am most definately not speaking from experience here as I have no children, but yes, unless other factors come into play, there should be no reason as to why you can't have children. I have heard of several ostomates giving birth both the natural way and through a Cesarian Section. There are reports that J Pouch surgery can significantly affect fertility so it might be a good idea to delay this surgery until after you've had children.
Q. I am concerned about my body image. Will my husband/wife, boyfriend/girlfriend still want me sexually after surgery?
A. I am lucky in a way that I had my surgery so young - I have grown up with an ostomy and can't remember life without it. I think that children tend to accept this type of thing easier than adults can. I do not have a problem in regards to my stoma and body image, however I know that for those who have surgery later on in life this can be a major problem. In my opinion, if your partner loves you then they will love ALL of you. Having an ostomy should not affect your sex life - in fact, it will probably improve it when compared to life with IBD! You will definitely have more energy! Your stoma is just a little part of you and should not run your life. If you are really concerned about body image at these times there are companies who make sexy lingerie especially for us ostomates. Check these URL's out!
Q. Can I sleep on my stomach after ostomy surgery?
A. I can - but only for a short while before it becomes uncomfortable. There are others though, who have no problems at all.
Q. The whole thing just sounds too gross to me!
A. Yes, it can sound gross - especially to people who don't have an ostomy! Once you do have ostomy surgery though and as you become used to it and more comfortable with it, most people report that it is one of the best things that could ever happen to them - and that they'd wished they'd had it done sooner. We all wish that we didn't have to live with a stoma but I would rather live with it than consider the alternative! Without it I would not be alive today!
Q. How about travelling, esp in planes? Will plane travel affect my ostomy?
A. Since my op, I have been on several overseas trips, the most recent being a trip to America and the UK. No, the pressurised air in the plane doesn't affect your ostomy and using the toilets on the plane shouldn't present a problem for you either. Some people do find, however, that their bag "blows up" a little due to the pressurised air but it's not a big problem.
One thing I always do when going on trips is to pack twice the number of bags I think I'll need and then add one more (just in case). For some reason when I'm on holidays I seem to go through twice as many bags as I normally do - possibly because I go swimming a lot and the water can erode the wafer much quicker.
When flying, make sure you pack a couple of spare supplies in your hand luggage in case your main luggage goes astray - and no scissors - they will be confiscated! Instead, cut out everything you need before you leave. If you use tape, cut lengths of it and stick it onto a zip lock baggy so you can just peel it off as needed. Pre-cutting everything means you don't have to waste precious minutes of your holiday getting everything ready too.
If flying overseas, it's a good idea to carry a Travel Certificate with you which explains in 6 different languages what an ostomy is, just in case you get questioned at the airport.
Q. How can I tell if I have a blockage?
A. Blockages are caused by food particles which for some reason have become stuck in your intestines and are unable to pass out through your stoma. This is why you must make sure that you thoroughly chew all your food. Usually when you have a blockage there is very little or no output from your stoma. There will probably be some pain attached to it too, as well as nausea and/or a fever. If the blockage lasts for more than a few hours, seek medical attention.
Foods that can cause a blockage include: nuts, corn, celery or coconut. HOWEVER, they do not cause blockages in everyone. If you wish to try out these foods, add them to your diet in small doses and CHEW them well. You will soon learn what types of food are apt to cause a blockage in you.
Q. Are hernias around the stoma site a big problem?
A. Hernias around the stoma site are usually caused when an ostomate attempts to live heavy items (around 50 pounds seems to be the agreed limit for us although is, by no means, an absolute figure). Because the stomach muscles have been cut, they are now weaker than before and we are, therefore, more susceptible to hernias than other people. Luckily, they don't seem to happen that often. They manifest themselves as a large bulge around the stoma area. If you're sensible and don't lift heavy weights, then you shouldn't have a problem. Also, the longer you have had your ostomy, the more weights you should be able to lift as long as you work up to it gradually.
If you like working out in the gym, play active physical sport or you perform physical labour for your work, then it might be worthwhile investing in a support belt. These belts can help keep a hernia at bay. They can also provide comfort for those who do get a hernia by providing support around the hernia area.
If you suspect that you may have a hernia, please see your doctor as in some cases, surgical intervention may be necessary.
A. Imagine a sock that is folded (rolled) back in over itself. That is how your stoma is constructed with the outer layer being pulled back over the inner layer and sutured to the skin. Therefore, what you see of your stoma is actually the inside of your intestine. With a prolapse, the inner layer rolls out making the stoma become longer. The stoma may also lose the peristaltic motion (ie doesn't "move" any more). This is rare but can happen. If your stoma looks as though it's getting longer, see your doctor as a prolapse can only be cured by surgery, usually by shifting the stoma site. Wearing a support belt can help prevent it from getting longer and decrease the discomfort from it.
Q. Why do I get salt cravings?
A. Salt output in the ostomate is very high, apparently around 1 teaspoon per day, as compared to almost none in the faeces of a "bowel intact" person. Therefore, you may need to increase your salt intake slightly to make up for this loss. Your body will tell you how much salt you need via these "cravings".
A. No. Your intestine, and hence your stoma, has no nerve endings so you can't feel it at all! It's numb! Sometimes it can feel as though the stoma is hurting, but it can't! It's more likely to be the skin or muscles surrounding the stoma.
Q. What does the stoma look like?
A. Stomas are very rarely perfectly round in shape, so don't worry if yours is not as round as you think it should be. Have a look at the Stoma Picture Gallery. You'll understand there is no such thing as a perfect stoma.
A. The lining on your stoma is very much like the lining on the inside of your cheeks. There are many blood vessels there which are close to the surface. This is why it tends to bleed so easily when, for example, you accidently rub a towel across it. A small amount of bleeding is normal and nothing to be worried about. If, however, you have an excessive amount of bleeding from your stoma, then it's time for a trip to your doctor or ET.
If you would like to use any of the images in these pages, please email me to get permission. Thanks.
Hit Counter |