Dysfunctional Bowel: Members Helping Members

After publishing the Editor's column on bowel issues in the last newsletter, I received letters and messages from a number of members who shared some personal advice about how they handle their own bowel issues. I wanted to share this information with our members, as I thought their suggestions were great. Thanks to those of you who took the time and effort to help others in our community. Your generosity and your care is very much appreciated!

December 26, 2002

Good article on dysfunctional bowel symptoms. I have used Imodium since 1983 and it has worked with the diarrhea and the stomach cramps. When I first started, it was a prescription. Then it went to an over-the-counter and now there are generic brands. Thanks for the article. It really hit home for the past 31 years.

December 27, 2002

I was sure glad about your article about bowel training. I thought I would tell you how I am handling this situation. I am on a training program. Every evening at 8 PM, we start getting ready to go to a commode. My aide transfers me and my husband uses a very small enema called enemeez. It works almost right away and may take up to ten minutes (this is for me - others may take longer). Also, for breakfast, I drink a chocolate drink with miralax in it and so the stools are soft and leave the body easily. Once in a while, I do have an accident, but we regulate the miralax and that seems to control them. I am sure there is not an easy way, but this works pretty good for me. Hope this will help someone.

January 02, 2003

I just finished reading the latest newsletter. I enjoyed all of it, but was really interested in your lead article concerning "accidents." I've had my share of them, and I'm sure I'll have more, but there are a few things that I do to help minimize them. In addition to your suggestions of carrying a change of clothing, wet wipes, and plastic baggies (which I do), I have what I call an emergency bag in my vehicle. It is actually just a small travel bag that is made to pack shaving supplies. Since it is small, it easily fits under the seat. In it I have a spare pair of underwear, packets of wet wipes, a partial roll of toilet paper, small sample size of powder, and plastic baggies. That way I always have it with me when I'm out somewhere.

However, the most important thing I travel with is a small porta-potty, which I bought in the sporting goods/camping section at Wal-mart. It is small and very lightweight. It is discreetly made, and most people wouldn't even know what it was. When I lift the top off, it has an insert which holds a roll of toilet paper. I've lined the inner bucket with plastic trash bags, so that if I have to use it, I can just lift out the trash bag. If there is no place to dispose of it, a package of dry powder chemicals, which came with the porta-potty, can be used.

We have a Honda Odyssey van, and the third seat just folds down so that the back section is completely level. I keep the potty there. If we have to have the third seat up, there is still plenty of room for the potty in the back luggage area. The Odyssey has a walk-thru aisle between the captain seats, and I can easily walk to the back of the van while still inside. If I'm in a rural area, especially if it is night time, I can just set the potty outside if I need to go. However, sometimes there has been too much traffic to do that, so we pull over, my husband steps out for a minute, and I proceed to the back of the van and use the potty. The van has dark tinted privacy glass all around so other motorist could not see in as they passed by. I carry a small travel size spray of Clorox or Lysol air freshener in my emergency bag, so I can freshen the van afterwards. I also carry the waterless antibiotic hand cleaner with me.

We live in a rural part of the country, and it is not always possible to find a public restroom. (And sometimes there is just not enough time to find one). I fall into the category of knowing that I'm about to have a bowel movement, but cannot hold it very long.

Having the van and porta-potty has brought so much peace of mind to me when I travel.
I just thought I would write and tell you what worked for me. Perhaps you can pass the porta-potty suggestion along to others. I realize that it would not work for everyone, but it is very helpful to me.

Thanks again for your hard work and dedication.
Warmest Regards

March 3, 2003

I just read your article about bowel incontinence and feel compelled to share my experiences on the subject. I'm 48 and have been dealing with TM since I turned 40. I'm an incomplete quad and rely on a power wheelchair for mobility. Aside from that, I'm completely self-sufficient. Since my diagnosis, one of the biggest issues I've had to deal with is the bowel situation. Sometimes I felt like working on the bowel issues was far more frustrating than being paralyzed and dealing with TM itself. That said, I'd like to share my story to further encourage the attitude you prescribed and let people know that there is hope.

When I started having accidents, the humiliation was pretty hard to deal with. I'm an Assistant Vice President in a very conservative industry, which sometimes includes making customer calls. I somewhat manage the situation by meeting with customers at my own office where I have a more controlled environment and friends to help when necessary. At first, I didn't think my co-workers would understand my situation which made me consider taking disability. Once I let the ones I knew the best in "on my dirty little secret," I found them to be exactly as you described, sympathetic, supportive and, to my surprise, extremely proud of me. I've developed a sense of humor about it all, and gone from being humiliated to being a "hero" and having some incredibly close friendships (nothing builds intimacy like having someone help with bowel accidents). I've discovered that most people are pretty compassionate, if they understand what you're going through and it's up to us to educate them. Otherwise, they have no way of knowing what our life involves.

Like your suggestion, I also carry an extra pair of clothes in my van in order to decrease the time and embarrassment an accident can create; however, I haven't needed them in over a year. I not only have trouble controlling my bowels, but I also deal with a nervous stomach and lactose intolerance, both of which exacerbate the problem and leave me with excruciating stomach aches. Over the past few years, I found a solution that has not only given me freedom from worry, but also far less pain.

You're right, a regimen and scheduled bowel evacuation are critical to leading a semi-normal life when it concerns dysfunctional bowels. I used to have a movement about every 7th day, which creates quite a backup and much less ability to control the outcome (no pun intended). After working with my doctors and much experimentation on my part, I finally found the perfect combination without adding more meds to my body.

First and foremost, I make sure that every day I allow at least an extra half hour to my preparation time. That gives me the time to relax after I eat breakfast (which I do by playing computer games) and take care of my morning "constitutional." I found this to be one of the most important steps. If I don't take the time to relax, things don't happen. I've added a liquid fiber supplement to my diet (at night) since its nearly impossible to get what you need from food. I avoid caffeine and any foods that are diuretics in order to maximize the benefit of drinking fluids and eliminate the unpredictability they can add to your body's systems. Since I'm lactose intolerant, I read the labels on everything I eat and avoid anything with milk in it. By doing all of these things, I'm probably more regular than most of my able-bodied friends and I feel so much better than I used to on a daily basis, both physically and emotionally. It sounds like a lot of work, but once you find what works for you and make it part of your routine, it ends up saving a great deal of time and embarrassment in your life. I've also found that being regular and avoiding foods that don't agree with you has helped cut down on gassy stomach, etc. problems.

I'm sharing this extremely personal information because, quite frankly, I'm very excited about it. Now every morning, instead of being bloated, uncomfortable and often in pain and nauseated, I feel like throwing a celebration party. It took me years to stumble across the right combination. I truly hope that you can share this with your readers and it not only offers some ideas but also affirms that the right attitude and regimen can make all of the difference.

Sincerely,
Regular in Seattle (-: