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I hate my stomach. At painful moments of agony I have the most gruesome fantasies, like gutting myself with a knife and watching all my gut’s poisonous contents spill out in a festering steam. I dream of tearing my torso open in the style of seppuku, samurai suicide by disembowelment. I want to see my sinewy wriggly guts, and I want to see them clench, churn and burn just as I have felt them do so often inside of me. In the grip of pain my intestines feel as if they are pulsating wildly, spasmodically self imploding, and I want to see it, to know it is real, to justify my pain. The doctors certainly have not done that. I have undergone many different tests, the agony of a first colonoscopy at the age of 17, three different tests for celiac disease, allergy testing, an endoscopy, an ultrasound and a HIDA scan to rule out problems with my gallbladder and gallstones. I had a great deal of blood taken, six vials which caused me to pass out on the doctor’s cold white floor. I was tested for Lupus and Crohn’s Disease and all sorts of terrible diseases that I do not have. I have absolutely nothing wrong with me in the cold steel eyes of medical testing machinery. This is wonderful, great news. Yet, every day I am in pain, in shame, quarantined to my room, to the bathroom, rolling around on my side trying to search for some type of relief while hating the undignified mess of it all. I am a mess on the inside, a malfunctioning human being. I am broken, trapped with this and may always be.
I am skirting around the actual issue. Its truth is something I avoid at all cost. This ‘it’ is Irritable Bowel Syndrome with constipation. As I write that, it appears so minor, even laughable. I do not have cancer, tumors, or a degenerative disease. I just cannot poop. Perhaps at some point in my life I took the phrase, “girls don’t poop,” too seriously only to find out it is not dainty, just distressing. Along with the constipation is trapped gas, uncooperative intestines and over sensitive nerves.
Irritable Bowel Syndrome is the monolithic, yet harmless -a sentiment medical research on IBS reflects- monster of this medical age. At first, before it was a well known, physicians gawked at this disorder that had no organic cause, observing that their treatments were not productive. Doctors do not like failure, and as a result the IBS sufferer was often blamed. Patients were told they were overly stressed out, too sensitive, abnormal in unimportant ways- big old whiners. In the last decade this has drastically changed and many physicians are far more sensitive to the struggles of people with IBS. Now that IBS is the most frequent reason people see gastroenterologist in the United States and has been found to affect roughly 20% of U.S. citizens (two or three times as many women as men) it is being thoroughly researched . Reading these large numbers has become somewhat of a comfort to me. IBS creates a lot of shame and hiding, leading to the development of a monster complex, as if there were a grotesque creature leering behind our skin. The knowledge that many other people suffer from this, just as I do, is comforting and perhaps one day will help free us from shame.
People with and physicians who work with Irritable Bowel Syndrome have found that it is a stubborn disorder that refuses to be cured. Its treatment is full of contradictions that reduce the researching IBS sufferer into paralysis. There are many treatments to try and most of them will not be effective. Treatments are expensive, time consuming, and emotionally draining, so when a heavily invested treatment fails it is similar to being hit in the head with a pile of bricks, bricks laden with hopelessness, depression, poverty, and increased intestinal anguish. Traditional Western medicine’s failure has created an entryway for alternative medical approaches. Alternative medicine enthusiastically entered the field in order to save the IBS sufferers who had previously been wounded by traditional, allopathic medicine. Often allopathic doctors will recommend such alternatives when they feel that their help for a patient has hit a wall.
Irritable Bowel Syndrome is referred to as a functional bowel disorder (though personally, it renders me quite dysfunctional most of the time). It is a chronic condition, and people who have IBS experience abdominal pain, bowel dysfunction, and abdominal bloating in the absence of any structural abnormality within their bodies. This condition involves many factors of human anatomy including motility of the colon, visceral sensation (being consciously aware of sensations in one’s internal organs), the central nervous system’s processing of those visceral sensations, inflammation, and neurotransmitter imbalances, as well as outside factors like a person’s heredity and diet. It is not a disease, thus it is not life threatening, transmittable, nor does it have a cure. Medication does not significantly help IBS symptoms, and operations are only done in very rare and serious cases . The term syndrome symbolizes both the patient and the doctor’s yearning for something concrete, a diagnosis. It is also medical terminology for “We don’t know what is wrong with you or how to fix it.” In sum it stands as a medical mystery.
Irritable Bowel Syndrome encompasses a wide arrange of symptoms, but has three basic subgroups, IBS-C (with constipation), IBS-D (with diarrhea), or IBS-A (alternating between constipation and diarrhea). IBS-C is what my condition has been labeled. Irritable Bowel Syndrome has had many different names: there is the emotionally charged ‘nervous colon’ which alludes to a psychosomatic disorder, mucous colitis, spastic colitis, or, my personal favorite, spastic colon, which would be a great name for a punk rock band. This spastic nature refers to the pain and cramps felt by us IBS-C sufferers. Along with pain, we often experience intense bloating, constipation, and gas (though studies of shown that people with IBS do not have more gas than the average person, they just experience it differently). The comorbid illnesses, many of them non-colonic, add an extra sting to the punch: there is GERD (gastroesophageal reflux), nausea/vomiting, difficulty swallowing (dysphagia), difficulty finishing meals, flatulence, severe uterine pain during menstruation (dysmenorrhoea), painful sexual intercourse, urinary frequency, urgency, and hesitancy, incomplete emptying of bladder, back pain, frequent headache, poor sleep, constant tiredness, bad breath and unpleasant taste, and itching . When a person is constantly juggling this downpour of symptoms work, school, relationships, and mental health take a severe blow.
The diagnostic criteria physicians utilize in labeling IBS-C are chronic constipation, changes in the consistency and frequency of stool, and abdominal pain and discomfort, which is generally relieved when a person has a bowel movement. Usually doctors intuitively diagnosis a person who describes these symptoms, but numerous types of medical testing is often performed to rule out any serious condition, such as Crohn’s disease, ulcers, or Irritable Bowel Disorder. The fright-invoking exclusion based testing consists of a series of endoscopic (a medical instrument used to look inside the body), barium enema (a special x-ray of the large intestine), and other imaging examinations. An older article in the British Medical Journal stated, on the topic of exclusion based testing for IBS, “While extensive investigation may sometimes be necessary in difficult cases, this is not recommended. It may be demoralizing for the patient, with each investigation that is requested reinforcing the fear of organic disease and each negative result undermining confidence in the doctors ability to diagnose the source of pain.” This quote is juxtaposed with a photograph of an anonymous patient’s butt, with a doctor’s hand completely inserted into the anus. Demoralizing? Just a little. This quote also demonstrates the medical façade of concrete knowledge a physician often dons in the presence of a patient. It is difficult for both the patient and the doctor to navigate the unknown and exclusion based testing offers patients very little hope of relief. Either patients have a much more serious condition or they have a condition that doctors can do nothing about. A recent article published by the British Medical Journal states that diagnosis by exclusion is outdated, and not necessary. Yet I, and I am sure many other IBS-C patients, have been recently subjected to several types of medical testing. A doctor’s liability is at stake. If they somehow misdiagnose a patient, and the patient’s condition is much more serious and life threatening then previously though, they could be subject to many lawsuits, so bring on the testing.
IBS-C is partially believed to be an issue of the motility of a person’s colon. Motility refers to the speed of contractions in the muscles of the intestinal system. People who suffer from IBS-C and constipation in general, have a longer transit time, meaning it takes much longer for the food they eat to pass through the small intestine and into the colon. This long transit time causes the person’s stool to become small, hard little pellets that are very difficult to pass (think rabbit feces). A confusing and seemingly contradictory part of constipation is that there are fewer mass contractions that help with defecation but there are also more contractions in the sigmoid segment of the colon (lower colon) that are non-propulsive and may interfere with the flow of stool . These contractions or spasms also create pain in the constipated person. The sigmoid segment stores stool, and in the constipated individual, it refuses to let go.
Medical research on IBS does not show how this disorder actually manifests in real people, outside of the designated patient role, and how it distinctly shapes our lives. Like most things medical, the personal is taken out. In order to understand the full picture of living with IBS, the human needs to be present. Let me insert myself into the picture. My colon, with its malfunctioning motility, my dear, uniquely deranged colon, calls for me to perform an elaborate morning ritual in order to have a bowel movement. A typical morning: I am nervous of fecal failure that will badly damage the rest of the day. I have to go so badly. I have felt this all of last night. All of this morning. Yet there is blocked movement, a cessation of progress, of life. I am once again stuck in the morning. Sometimes I spend several hours stuck in the morning anxiously hoping my body will acquiesce today. I see my roommates go on with their day, go out to breakfast, go to exercise, go on an early nature expedition, and all the while I just wait.
I wake up at least two hours before I would normally need to. I eat breakfast first thing, which helps stimulate the gastrocolic reflex, the urge to have a bowel movement after eating. I prepare a mug of tea, two or three black tea bags, in order to prod my gastrocolic reflux into action. I beg for peristalsis (contractions of the intestine that push out fecal matter) to work its magic. This mug of tea is more like a bucket carrying an ocean, and it is hard to believe that I carried it around Europe in my backpack, hoping for mornings of relief while traveling, only to be made fun of by Europeans for my jumbo sized drink. And I can’t blame them- it appears ridiculous in its supersize fashion. What an American thing to do! I laughed along nervously, but secretly harbored hurt feelings. I fumed, if only they knew why, how embarrassing it is to ask, how much of a hassle carrying a humongous tea cup while traveling was, how horrible the disorder that calls for such a thing is, and how hard it is to have a bowel movement in a hostel with fifteen other traveling students and one bathroom. But I tried to laugh it off, why should I get hurt over something that is genuinely funny at first glance? I have gotten pretty good at laughing at myself.
I sit with my gargantuan sized mug of tea, preferably at home since I am rarely successful anywhere else. If I am fortunate enough, I sit at a desk with a chair, and even more fortunate if I have a computer with the internet to distract me absentmindedly. If I attempt to complete school work or anything resembling productivity I become too stressed out, causing my intestines to knot. I must have a particular posture, forced relaxation, and deep breathes. There is a fragile combination of relaxation, concentration, and a particular and predictable environment that are crucial to this procedure. And timing is very important, which makes school dreadful at times, the earlier the more difficult. I can only have a bowel movement at certain times, and it is very difficult to train my bowels to work at those times, my intestines simply resent it. When I had to wake up at 7 AM I never had a bowel movement, and I suffered for the rest of the day because of it. When I sleep over at someone’s house or sleep in very late I am almost always guaranteed failure. This whole process takes on average around an hour and a half, but often it is longer. Sometimes I have to drink another mug containing one more ocean of strong black tea, repeat process. In all of these actions I seek relief, an offering to the god of the enteric system. A successful bowel movement does not ensure me a pain free day, but it does plant the seed for a potentially active and happy one.
Even if I do have a bowel movement, I am not excused from pain. If I am taking a laxative, and am able to go, I celebrate, but then have to lie down because of the incredible burning sensation vibrating throughout my stomach. It burns like someone poured acid down my throat and the acid is incinerating my intestines, forcing them to perform the act that they usually vehemently refuse. It burns and stings, and my stomach bloats up, terribly angry at me, and if I am desperate enough I will take a medication that will sooth this burning, but ultimately cause increased constipation for the next few days. So there is pain when I am constipated, pain when I am not, relentless pain that follows no logic, a mercenary force sent by, well, if only I knew.
Some medical research suggests that my pain may be caused by abnormal burst of motor activity in the colon. Though these bursts of motor activity have been observed in patient’s reporting abdominal pain, the relation between motor disturbances and pain are not clear. The pain we feel is visceral, meaning felt inside the body’s organs. Researchers have suggested that visceral pain is caused by hypersensitivity present in people with IBS . Visceral hypersensitivity may be why we IBS sufferers experience pain in our abdomen, where a patient without IBS, but performing the same bowel processes, does not. The physician can see nothing unusual or abnormal about the colon of a person with IBS. The hypersensitivity that I, and people with IBS experience, turns what is an automatic body function, a function working behind the scenes, into something experienced. We experience the whole digestive process, feel it every step of the way.
Hypersensitivity is a physical sensation but it also alludes to the emotional factors that are often associated with IBS, and have in the past been believed to be the sole cause. IBS belonged strictly to the realm of the psychosomatic where disorders caused by the mind and emotions dwell. Creating a separate category, psychosomatic medicine, was an easy way to deal with Western medicine’s tendency to strictly work with the body, and to direct people with “mind issues” to psychologists. The mind body connection has made its way back into allopathic Western medicine, but physicians still seem unsure as to what to do with it. That is why many people with IBS have been directed towards therapy, meditation, and stress-reducing skill training. Emotions play a large part in igniting symptoms within people with IBS and stress reduction can be very beneficial in managing our emotions, but our psychology is not the sole cause for our illness. It seems like an easy scapegoat for physicians who cannot figure out what to do for us doomed IBSers, and use the “it’s all in your head” excuse.
I understand that the mind and body are one, something the modern Western medicine is finally accepting. Western medicine is infatuated with specialization. Doctors specialize in target areas, involving very specific systems and organs. It may be for this reason that the gastroenterologists I have been seen by are baffled by my disorder, lost as to what to do, and so easily blame my pain on stress or anxiety, telling me to relax. Anxiety and depression play a very big role in how I feel physically, but there have been plenty of days when I have felt happy and carefree but experienced an IBS flare up, regardless. After I experience a flare up without any emotional and environmental factors to attribute it to, I become anxious, angry, and depressed. Anxious because I cannot fulfill what the day calls for me to do, angry because I have done everything to my knowledge to stay healthy, and depressed because I see my pain as eternal, something that I will have to deal with forever. That last sentiment is exhausting, and that is usually when thoughts of disembowelment flood my mind.
The treatments and guidelines for IBS are endless, and finding the right treatment is also exhausting and can be very difficult. For example, physicians often recommend food elimination diets. These diets start off with a few very bland foods, and slowly the dieter adds one food at a time. One additional food is added for around two weeks and then the results are assessed. The problem is that a reaction to food is unpredictable and could take a few days, even a week, or it could happen at one time and then not at others. There are so many other factors in IBS such as stressful life events that could be taking place, a woman’s menstrual period, combinations of different foods, really anything can interfere. It is a flawed system and such a demanding process that any mention of a food elimination diets repulses me, since I have tried and failed time and again. The results of exclusion based testing are proven to be inconclusive. One study reported that while some IBS-D and IBS-A patients responded well to an exclusion based diet, the IBS-C group repeatedly failed to reap any benefits . After several weeks of an exclusion based diet, and of its subsequent failure, I often feel spiteful, and prepared to eat all of the foods previously forbidden.
An arduous almanac of information is required to paint a picture of what IBS patients are told to do and not to do. Some doctors suggest that their IBS patients eat many vegetables and some fruits because of the fiber they contain, while others warn their patients to precede with caution, since these foods will cause painful gas and bloating. Fiber in general is highly lauded as the savior to the constipated, and this may significantly help someone who suffers from occasional constipation, but not necessarily IBS. Fiber can be very dangerous territory for a person with IBS, and it is recommended that one gradually increase their fiber intake. Other sources of fiber include whole meal, bran, and whole grains. The guidelines for what a person with IBS should avoid eating depicts a grey and puritanical culinary style life. We are told to avoid: caffeine, chocolate, alcohol, milk products, carbonated drinks, high-starch foods, greasy foods, and many different grains. Ten foods that are most frequently reported as causing IBS symptoms, and that we should thus stay away from, are cabbage, onion, peas, beans, hot spices, deep-fried food, pizza, coffee, cream, and smoked food . Why not let me just retreat to a cave and stare at a wall for eternity, or better yet, lick the rot off the cave walls? Perhaps it will provide fiber! What you should eat, and what you should avoid, all of these do’s and don’ts rain down like biblical commandments, and as a result, transgressing these rules can make one feel guilty.
Also in the almanac of IBS recommendations are exercise, eating small and frequent meals, probiotic supplements, ginger and peppermint products, some antidepressants since serotonin receptors may influence a broad range of gastrointestinal functions , a variety of different laxatives, which also come with the warning of dependency, and some medications that are specifically aimed at helping people with IBS.
My experience navigating through this disarray of treatments has been unsuccessful and hellish. I was tested for food sensitivities in 2006, (the blood test that caused me to pass out) and it reported that I am (or was, I really do not know if this stands true anymore) allergic to sweet potato, rye, oat, tramine, FD&C Blue #2, Potassium Nitrite, cranberry, nutmeg, and pecan. It reported that I am moderately allergic to carrot, lettuce, mushroom, barley, lecithin (which is in soy), solanine, aspartame, phenylethylamine, polysorbate 80, tyramine (found in turkey), plum, grape, mango, turkey, lamb, tuna, cocoa, mustard, parsley, cashew, lima bean, and blue cheese. I tried the exclusion based diet which was based on the test’s results for a few weeks and it did not significantly improve my symptoms. Plus I was extremely sick of quinoa and chicken.
I have tried to avoid the foods that may make my symptoms worse but it hurts being told you cannot be with whom you love. I love coffee, and it helps me fight the fatigue that this illness often causes. I have to drink a large amount of caffeine every morning in order to have a bowel movement. I have a sweet tooth, and passionately love chocolate. I can handle staying away from greasy good and alcohol, but saying goodbye to coffee and chocolate forever would be devastating. The bland foods that normally sooth my stomach are often labeled as bad and unhealthy. To be healthy I eat in a way that these nutritionist gurus’s would deem unhealthy. As a person who struggles with the need for outside confirmation of good behavior, in addition to the ideology in our society that equates healthiness with holiness, I begin to feel rotten inside and out.
As I read the recommendation to eat a lot of fiber I become increasingly irritated, since a lot of fiber causes me intense bloating and pain. Eating a salad, something I once enjoyed, often leaves me with sharp and stabbing gas pains and a bloating that leaves me debilitated. I love vegetables, and would eat them more often if they did not cause me pain, so reading over and over that I should eat a lot of vegetables makes me angry. It is as if eating healthy vegetables makes you virtuous, and as a result I feel guilty, like I am bad person, since I cannot. As I read over these recommendations that I have read over a thousand times it becomes more insulting and insinuating, and I steam with rage as a result.
I exercise, but it often leaves me incapacitated for the rest of the day. My stomach reacts angrily and bloats up into a hard, solid mass, like a boulder. It hurts to wear tight clothing, especially a bra, which is very inconvenient for my breasts, being the size they are. I put on a huge t-shirt, some loose pajama pants, and prop myself up with pillows to dwell in my bed for the rest of the evening, trying to stay positive in my achievement of exercise and not to steep in an ooze of self pity.
I try and avoid most laxatives, as they say I should, so that my bowel does not become anymore lazy than it already is. The only laxative I take is a stool softener, which I take a lot of daily and it seems to help. I am on an antidepressant that is said to sometimes help with IBS-C symptoms, yet oddly enough, one of the side effects is constipation. And, lastly, I have tried Zelnorm and Amitiza, the only prescription drugs on the market for IBS-C.
As I researched this disorder, and assessed myself through this medical lens, it became harder and harder to swallow the information and guidelines that I irrationally felt was shouting at me, condemning me for not doing more, working harder, being better. I felt like I was being ripped apart. Instead of reading about something I have, I started to read what I had become. What I have become does not make sense, even to the most knowledgeable of physicians. It is illogical from the start, holding onto the ###### I create, embracing all the toxins and waste and refusing to let it go. I am that grotesque and comical picture of an anonymous butt on the British Medical Journal’s article on IBS, a butt being invaded by a doctor’s hand. It is hard not to feel shame. I laughed at this picture originally, yet when I worked on my research in the library, and saw the article face up, I became shameful. Ashamed of what I have, of what I am researching, of what I try to forget, and of what I hoped no one noticed. All of the articles with the large boldfaced title of Irritable Bowel Syndrome made me cringe, and when I printed them out at the library I would put the fronts of the articles in the middle, so that all that showed was the white blank of the last page. It is one more form of hiding. People recommend that I come out of hiding, but I wonder, what good will that do? So that everyone will know that I can’t poop, that I am in pain, that I am full of ###### and gas, all of the symptoms written within these articles? I’d really rather they not know. The dignity that I have tried to maintain while encompassed in this cesspool seemed to have little chance of coming out of this hideous journey whole.
By examining this beast of mine, I have let out an uncontrollable anger that has blown apart my mind, my life, the control I believed I once had. If this anger is a cause or a result of my disorder, I do not know. Writing about, researching, shoving my face in my disorder has rendered me insane. These fiery, stinging, irritating emotions are brewed somewhere and then gush down, finding a comfortable nest in my belly where they terrorize my body. They laugh when I cry, and refuse to leave. To be free of this ideological notion of health sounds blissful, but when I physically feel awful all of the time, it’s hard to let go of the feeling that I am sick. I am a sick person, yet the type that can be easily dismissed. Actually, I am always the first to do so. I tell myself, “It’s not actually pain, just aggravation, just discomfort. “ “These emotions are a reaction to something physical, and I am choosing to experience them” “Plenty of people feel pain yet accomplish so much, why am I such a lazy, piece of ######?” “Why can’t I face the biggest thing in my life? Be brave enough to explore it and conquer it.” As I read over this, another question pops into my head, “Why am I constantly attacking myself?” It is like kicking someone who is already wounded and on the ground. Perhaps it is why my body is attacking me.
This essay was extremely difficult for me to write. It induced such strong emotions and bodily reactions that I thought there was no way I could continue. I began to cry every time I started my research, uncontrollable, body shaking, pathetic and forever exhausting sobs. I had already been struggling with this illness, but writing this paper drove me further into misery, depression, more sickness, and more pain. It was as if the pain in my stomach transformed itself into a jagged dagger that cut me up, driving further into my flesh the more I read. Halfway through I wanted to give up, the rage that was doubling and tripling its self could not be good for my health. It is hard for me to express in words how painful this disorder is, both emotionally and physically, and every time I tried to express this, it came out as a mockery of my actual experience. The more I read the less hope I had for recovery and the clearer it became that no one truly understands my disorder.
In the midst of the confusing array of information there was one beacon of hope. In a very recent study at the Technische Universitaet Muenchen (TUM), researchers have discovered mini-inflammations in the mucosa of the gut, which upset the sensitive balance of the bowel and are accompanied by sensitization of the enteric system . This is the first evidence of physical causes of IBS and that it is not merely all in our heads. Even more exciting is that these researchers found something that seemed to help the IBS symptoms. In this study, participants with IBS had significantly less symptoms after taking an antihistamine known for its immune-stabilizing effect in the treatment of allergic reactions such as hay fever . This physical evidence paves the way for more research, and gives me hope.
Through writing this paper I hoped to conquer my IBS demon, but instead I just got more familiar with him. My emotional reaction to the research and writing this paper shows that not only have I had trouble expelling my poop, but also my bottled up anger, resentment, and sadness about my illness. Perhaps it was beneficial for me to let all of it out. All that I can cling to, to reassure myself of, is that researchers are learning more about my disorder and that the possibilities of lessening or even ridding myself of IBS are on the horizon. Also, the suffering that I have to endure makes me more prepared to understand and help those who are suffering, and I know many are suffering much more than I am. It is easy to fall into a pit of despair and hopelessness while battling IBS, but giving into this spiral of negativity only knots my intestines further. The best I can do right now is to come to some sort of peace with myself, nurture my body that is ailing while looking to the future for hope, and living in the best way that I can.
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