From the Editor - dysfunctional bowel symptoms

Transverse Myelitis Association
Volume 5 Issue 1
December 2002
Page 1

From the Editor
Sandy Siegel

There are many challenging issues a person with TM has to face on a regular basis; none is more difficult and demoralizing than bowel issues. I know, you would probably rather that I was writing about money.

I know that the dysfunctional bowel symptoms that accompany TM can create the most devastating impact on a person’s quality of life. I know this, because I have observed these impacts and I have listened to people talk about these issues on numerous occasions. Keeping in mind that I am not a medical professional, I would like to make a distinction between persons who have a difficult time having a bowel movement and those persons who have a difficult time controlling their bowels. My comments are going to focus more on those of you who have difficulty in controlling your bowels, because of the loss of sphincter function.

I think that the medical profession has many more tools in the treatment kit for those who suffer from the former as compared to the latter malady. It is high on my priority list to have an article published on bowel maintenance programs; those for children and those for adults. It is my suspicion that the programs are going to be pretty well defined with a variety of options for a person who experiences difficulty having a bowel movement. For those who have no control of their sphincter muscles, I suspect that the options are going to be fairly limited. As a purely anthropological observation, I believe the medical community has a concern that the TM patient is evacuating; and I think a bowel maintenance program may be considered successful if the bowel movement is accomplished with anything less intense than a couple of sticks of dynamite. I’m not sure that a person who is pooping all over the neighborhood is considered to be having a bowel problem. Why? Because they are getting it out. I could be wrong; it is merely an observation. I will be looking forward to reading about this bowel maintenance program.

My greatest concerns and compassion go to those of you who are unable to control your bowels, because you have no or little control of your sphincter muscles. Some of you are unable to feel when you are about to have a bowel movement; some of you can’t feel it until it is too late. Some of you can feel it, but have no way to control it. So, you have accidents in public and you pass gas in public. I’m sorry. I’m sorry, because I know how this issue has changed your lives. I see how it constrains your lives. I see how it has impacted the way you see yourself. And this all just makes me very sad.

There is not a single brilliant thing I have to say to any of you to improve upon this situation. I’m not a doctor, so there isn’t much I can tell you beyond my common sense application to all of life’s problems. But I do have lots of compassion and empathy, and your predicament does make me feel really horrible.

So, what are you supposed to do about this? Well, hopefully, I am totally wrong and the bowel maintenance program article that I get published in the near future is going to be jam packed full of great ideas for you. I would imagine that routine and a regiment is very important for you. Making sure that you eat a balanced diet that is high in fiber is probably a good idea; and making sure that you consume lots of water. If you have little control of your bowel movements, controlling the consistency of your stools is probably really important.

Okay, regiment makes a great deal of sense, but, for most people, anything requiring discipline about food is not going to be easy. During a doctor appointment not too long ago, my doctor suggested that I take off some weight. Actually, what the doctor told me was that my weight was perfect, if I thought I was going to grow to about 6’ 5”. I’m certain my doctor learned this approach to weight loss during medical school in his Bedside Manner 201 class. "If you want your patients to follow a weight loss prescription, the highest rates of success are experienced by those with whom you are the most obnoxious and sarcastic."

A medical doctor is not going to help me lose weight. If eating was about ingesting nourishment, my weight would not be a problem. My weight loss issues might be better handled by a team of highly trained and experienced psychologists.

I’m not sure what the rest of you are doing around the world; in America, we are doing really interesting things with food. Being regimented about food in America? We are super sizing it. We are camped out at all you can eat buffets. We are managing to put 5000 calories on a plate from a salad bar and feeling good about our healthy selections, because we are also using a low fat dressing. We are starving ourselves. We are binging and purging. We are living on diet pills and nutrition bars. We are wiring our mouths shut and having our stomachs stapled. We hold ourselves up to the most unrealistic models for appearance, become totally discouraged with the entire concept, and find solace in devouring the entire party-sized bag of peanut M&Ms while watching Richard Simmons sweat to bad disco music. So, just what consistency do you need for these stools to be? Hopefully, you’re having a better time of stool consistency in France. I’ve heard cheese is very binding.

It takes every ounce of discipline in my being to make it through Yom Kippur. Most of us are just not very disciplined about food. So, all of this routine and regimentation is going to be extremely difficult. But that is where some of the answers lie for people with TM and bowel problems.

If you have a nervous stomach, you may be in trouble, even with a regimented diet, and fiber and water and routine. And the water thing, by the way, is really important. I am on a medication that is constipating. I try to include plenty of fiber in my diet and I take a fiber supplement. On one occasion I did not drink enough water with my fiber supplement. Later that day, I spent an hour giving birth to three small stones. Not a pleasant experience. You need to drink lots of water; if you are taking fiber supplements, you need to drink even more than lots of water.

I also have a nervous stomach. I used to go on kaopectate intravenous during final exams week. I did this through fourteen years of college. I can’t even imagine how it would feel to have a nervous stomach and no sphincter control. You have a very difficult problem.

When you have a significant cause of stress in your life, you have some choices to make about the cause. You can start by looking at the circumstances that cause you stress and make some decisions about how you are going to change those in order to diminish or eliminate the stress. For those of you who have no sphincter control, there is only so much you are going to be able to do to change the circumstances. You can devote your life to forming the perfect stool; to developing a regimented diet and schedule that increases the probability that you are going to have a bowel movement at approximately the same time every day or every other day. But you are still going to have an occasional accident. The operative concept here is accident. You just don’t have control over all of the circumstances.

If you don’t control the circumstances, your other choice to reduce or eliminate stress concerns how you feel and think about the circumstances that cause you stress. It is this simple – really. If you want the stress and emotional discomfort to diminish, and you cannot control your sphincter muscle, you are left with having to change how you feel and think about having accidents and passing gas among spectators. I know, easy for me to say. But whether easy or difficult to accept, those are the choices.

I perceive all of life about TM as a caregiver. I don’t have TM. I started to learn about these issues very early on in Pauline’s experience with TM. We talk about everything. And we talk about her symptoms. Pauline complains to me. I listen. I tell her that I am sorry. We talk about pain and fatigue and we discuss strategies for managing these symptoms. We talk about all of her symptoms – and we talk about them a lot. We never ever talk about bowel problems and passing gas. Why? Cause there is just nothing to talk about. There is nothing she can do to change any of this. There is nothing I can do to change any of it. We just get on with life. My job in these situations is to keep life normal and moving forward. We make life normal as quickly as possible.

Making all of this normal is a big step in making this all less stressful for yourself. What else are you going to do? Allow me to suggest two things that you shouldn’t do. Don’t starve yourself. I know people who attempt control of uncontrolled bowel movements by starving themselves before a particular occasion. This is not a healthy approach. It is a dysfunctional method for many reasons, not the least of which is that it destroys any diet routine which is one of your better techniques for bowel maintenance. Some people stop going out in public where they might risk an accident. This is also not a healthy approach. In the end, this approach is only going to make you feel worse. You need to live your life, you need to continue to do the things that make you happy and bring meaning to your life. Isolating yourself from these things is not going to be satisfying over the long haul. Isolating yourself from people is not a good thing. Neither of these approaches is a satisfying or healthy resolution of the problem.

You should do what you can to help keep things normal. Bring a change of clothes, a few plastic baggies and a package of wipes when you go out. If you have an accident, try to expend your energy moving on as opposed to feeling bad about it. I can tell you that none of your friends or family are ever going to decide that they don’t want to spend time with you, because you have had or could have an accident. They are going to feel badly about it, but then they are going to take their cues from you. If you try to commit hari kari with the butter knife, they will likely attempt an intervention that will only elevate your discomfort. If you try a matter of fact let’s deal with it and move on approach, that is what they are going to do also. They are going to admire you. Believe me, they will. I would.

I’m not suggesting to you that this is a small thing. I would have a really hard time with this. But I hope and I pray that I would be able to get to a place where my bowels did not control my life. It might gain control over my body, but I would hope that I would maintain control over my mind.

During the first TMA Symposium in Seattle, I led a discussion among people with TM and caregivers about symptom management issues. During the course of the discussion, a woman raised the issue of passing gas without control and in public. She talked about her embarrassment and she asked what other people were doing about it. There were various suggestions made; most of the advice concerned foods that cause gas and avoiding them. A hand went up in the back of the room – a sage philosopher from the TM community wanted to speak on the subject. I moved to the back of the room and handed the microphone to Mr. Boyle. His advice on the subject of passing gas in public, “I don’t care.” There was an immediate burst of laughter around the room, including from me. And to know Gunny is to only make his response funnier. But it was the best advice anyone provided on any subject during that discussion. In fact, it is the sanest and most reasonable advice I have heard on this subject – ever.

The more you care, the worse you are going to feel. The more significance you place on this issue, the worse you are going to feel when it happens. And you have no control over when it is going to happen. The only aspect of this you have control over is how much significance you are going to ascribe to it and how you feel about it. Hey, let’s try to get some perspective on this. You aren’t stealing from the poor; you’re farting in public. If you pass gas in the middle of the grocery check out line, your family should say “excuse me” in unison as a demonstration of solidarity.

As difficult as these issues are for adults with TM, these issues are much more difficult for children and young adults. Being different among one’s peers is just really hard. Even being rebellious is defined by specific rules, including a uniform. You can’t just do your hair in any pastel that strikes your fancy or deform just any body part. My heart aches for the children and young adults who have to deal with the bowel issues. But their decisions are the same as those of adults.

Children need to make the same decisions about changing the circumstances to the extent they have control over those circumstances, and they need to also find ways to deal with how they think and feel about the bowel issues. On the circumstances side, they need to understand what aspect of these issues they control and how much of it they do not control. You should probably help them understand that there is likely a relationship between a healthy diet, some schedule and regiment about eating and the avoidance of unhealthy dieting and the increased probability that they will have fewer accidents. That might be compelling motivation for them to make healthy decisions about food and eating behavior. An exercise program would probably also be a very good idea; for children and for adults with TM.

On the thinking and feeling side of the bowel issues, you could help your children with strategies for when they do have an accident. A change of clothes is a good idea for them, as well. I think children will often take cues from their parents in situations that could cause stress. If you react to an accident as though it is a major production and loaded with angst, you might be influencing your child to think of it in this manner, as well. If you deal with it in a more matter-of-fact manner and help them just move back to the flow of life, they might be helped to experience these accidents in a less stressful way.

It won’t be easy for you. It sure would be difficult for me. But this is the situation, and you are all faced with limited options. Please work to find the healthy ones, the ones that will make these experiences as normal as possible. And that is also likely going to entail parents being good models for their children in the areas of nutrition and eating behavior.

Not having control of your bowels is a difficult challenge for many of you who have TM. I am asking you to please not make it any worse for yourself. You can’t control what your sphincter muscles are up to, but you do have some control over what your brain is up to. You are such a wonderful person and we love being with you. We don’t want you to isolate yourself from us. We can handle this situation – please don’t stay away from us, because you are embarrassed. We will help you move on. We won’t tell you not to feel badly – you’re allowed to feel badly. We’re just not going to encourage you to dwell on it. And my team of psychologists tells me that food is so much more than the basic building blocks of life. The emotional, social and recreational aspects of food should be celebrated – every culture does. Please don’t exclude yourself from this celebration.

Please take good care of yourselves and each other.

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