Managing incontinence often means being prepared. Knowing what to do when it does happen can help prevent fear from consuming your life. For example, it helps to always have cleanup supplies and extra clothes on hand, and although difficult to accept, protective undergarments may be a good idea. Locate the restrooms in public places and make sure that you can get to them easily. Flexibility is important, too, since plans may need to be changed at the last minute. The following article gives one person's solutions to lifestyle changes that helped her to regain control.
(Author’s Note – Each of us living with bowel dysfunction must deal with situations in our own way. By sharing a personal account of living and dealing with fecal incontinence, I hope others may find new ways of accepting the daily challenges presented by bowel dysfunction.)
Warm summer days at the beach…holidays spent with family and friends…sunrise over the lake as you cast your line into the water…a weekend sightseeing trip with old friends…these and many other events can fill us with warm, happy memories or stir us with anticipation, as we plan and prepare. For those of us living with bowel dysfunction, another emotion is too often present – FEAR! Living with that fear changed me from an extremely active person with many interests to a prisoner in my own home. As I became increasingly afraid of venturing far from my bathroom, incontinence continued to rob me of many meaningful experiences. Slowly, with the love and support of my family, physicians, and friends, I began regaining the control over my life that bowel dysfunction (in my case, incontinence) had taken from me. Many difficulties are still present for me, and I deal with incontinence on a daily basis. But, when I started looking for ways of managing my bowel dysfunction, I gained confidence in my ability to take control of the situation. As I allowed myself the freedom to take risks, and the freedom to make mistakes along the way, I saw my life becoming fuller and happier once again.
The first step in venturing outside of my home, and regaining control of my life, consisted of keeping a journal. In my journal I recorded my daily foods (what, how much, and when I ate or drank), along with my daily bowel pattern. Since each individual may react differently to various foods, I used my journal to develop information specifically related to my body. This approach allowed me to develop a list of “safe” foods for managing my personal situation. Having this information gave me the freedom to eat out, or leave home, without constant fear of being embarrassed by incontinence. I save any experiences with new food for times when I will be at home and add these foods to my list for future reference.
The second step involved being prepared should an accident occur away from home. This preparation involved putting together items I find necessary or helpful into my “survival kit.” (Note: the following items are specific to my situation. You may want to consider variations to suit your own personal needs.)
Carry Case. Choose something you are comfortable with. Some suggestions are: camcorder/computer bag, briefcase, large purse, carry-on, sports bag, small duffel bag, back-pack. Whatever you select, be sure it is lightweight, has adequate space for your needs, and has several compartments.
Medication. Use of medication should be as directed by your physician. If you require several different medications, it will save space to use a small pill case with compartments. The case I use will hold a one-week supply of medication.
Lubricant. You will need to find the lubricant best suited to your situation. If you have questions it is advisable to consult your physician, pharmacist, or nurse. To save space, carry a partially used tube or travel size.
Gloves. Purchasing gloves that are the correct size for you is important. If your gloves are too large, they will be clumsy and interfere with efficient cleaning or bowel management. If too small, gloves will restrict finger movement during bowel management and may tear during clean up.
Finger Cots. Unlike gloves, these do not provide complete protection. However, they are smaller, fit easily into a wallet or small purse, and work well if digital stimulation or suppository insertion is required.
Protective Undergarment. Experiment with available items that are designed mainly for urinary incontinence, until you find one you feel comfortable wearing. Personal preference and comfort should be your main considerations.
Tissue. Any type may be carried. To save space, place several single sheets in your carry case rather than an entire box.
Cleansing Wipe. I prefer a pre-moistened, alcohol free baby wipe. I carry the 16 count 7.6” x 7.5” size, in a hard carry case. This gives me a compact size, with a wipe large enough to provide good cleansing. The hard case, with small quantity, helps keep moisture in the wipes until used. If wipes become dry they can be moistened with water, however, they do not give the same “fresh” cleansing. If you use a large number of wipes it may be cheaper to buy in larger quantities and refill your case from that supply.
Chux/Disposable Underpad. This is a waterproof, highly absorbent, disposable sheet. I prefer the 22.5” x 33.5” size for larger work space. This item is very helpful if you cannot use a restroom to clean up (or when beginning your bowel management program). It protects carpets or other areas from being soiled during cleansing.
Plastic Bags with Fasteners. I carry a few different size plastic bags that can be used to seal soiled garments until I get home. I also use the bags for disposal of soiled items. Your state or community environmental programs may have requirements or suggestions for disposing of your medical waste. You should contact them for any information you may need.
Change of Outerwear. Pants, slacks, skirt, or shorts should be a neutral color that can be worn with many items. Choose a lightweight material that folds to compact size and is wrinkle resistant. Sports or workout clothes are ideal. Make your selection something your are comfortable wearing, since you may be very self-conscious at the time you need to change your clothes.
Deodorizing Spray. Do NOT substitute perfume for this item. Choose a product that eliminates fetid odors, rather than trying to cover up the odor with a heavy perfume, which will generally result in an even stronger offensive odor. You may want to check with your local hospital, clinic, or pharmacy for products in your area. Test the product at home to see if it works for your situation. Keep in mind that you will want a small carry size.
Drinking Water. If I am going to be away from home for a long period of time I often carry a sports bottle with water or other liquids. Another suggestion would be to use only bottled water or liquids you have tested previously. Refer to your personal journal for items that may increase your chance of developing gas or diarrhea.
Food. Depending on the activity I am attending, I may bring small food items, like fruit or crackers. I have found this helpful when attending events that serve only foods that are generally a problem for me. I also find that eating only small amounts throughout the day will help me avoid the natural active reflexes and peristalsis (wave-like movement) of my bowel, after a meal.
I keep my “survival kit” packed at all times. In appropriate weather I just leave it in my car. If any item is used during the day, I simply replace it when I get home. I would like to be able to say that I have never had to make use of any of these items but, unfortunately, living with bowel dysfunction means facing the fact that accidents DO happen. I can say that, with the help of caring friends and family, I have found that it is possible to regain control and manage the challenges of living with bowel dysfunction.
There are resources available to help locate items that may allow you to regain control over your personal situation. In addition to IFFGD, a few suggestions are: your physician, clinic, nurse, pharmacist, and support groups. If you are embarrassed discussing this subject in person, try using the telephone to obtain information regarding items you have questions about or cannot locate. Once you start dealing with your situation, you will find it becomes easier to talk about and live with. Whatever means you choose to use with your personal situation, I wish you success. Keep in mind that, while bowel dysfunction may present daily challenges or obstacles to deal with, it does not have to rob you of a full and active life.
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Adapted from IFFGD Publication: Living with and Managing Fecal Incontinence and Regaining Control by Linda Pribek.