Courageous Stories

 

Share your experience of living with a digestive disorder – it can be therapeutic for you as well as others who suffer. Whether you or a family member has a disorder, we invite you to Share your Story.

Searching

For many persons, a functional GI or motility disorder involves a seemingly endless search for answers. Parts of life may be lost as adjustments are made in response to symptoms. It takes time, thought, and courage to keep sorting out and searching for ways to best manage the condition. 

Years ago, doctors diagnosed me with diarrhea, GERD, diverticulosis, and more, but no one really ever gave me follow-ups on what to do. Things I ‘shouldn't’ eat don't bother me, yet some foods that are supposed to be good for me, I can't eat. The majority of times, half-way through a meal I end up in the bathroom. I travel a lot, and it is so depressing to stop and have a meal, and then, having to wait around until I use the facilities. Either that, or get back on the road, and 10 minutes later have to fight to find a gas station. I am so sick of all this, and not one doctor will take me seriously.

– Name withheld by request
^{June 13, 2009}

I am 58 years old. About 2 1/2 years ago I began experiencing severe abdominal pain, mostly in the lower right side, with diarrhea. I started losing weight because my symptoms got worse when I ate. I had 3 colonoscopies, 3 upper endoscopies, swallowed a camera twice, and so many CT scans and MRIs that I lost count. All of my tests were normal. I am thankful that my providers knew me and never did tell me that nothing was wrong. For most of 2008 I lived by following a strict routine of taking a pain pill before I ate and following a very restricted diet. I would have flare ups of increased pain and diarrhea but I could usually manage to get them under control if I ate even less. Finally there was nothing I could eat without pain and diarrhea and the pain pills didn't work at all. I went to the gastroenterologist again out of desperation and he tentatively diagnosed me with eosinophilic gastroenteritis. I am on steroids and a very odd diet now and am doing better. I can't even begin to relate the impact that this has had on my life, but then I don't have to because you all understand.

– Name withheld by request
^{March 25, 2009}

Hello. I’m a 40 year old female and have had chronic constipation since childhood. I’ve done everything in my power to try and solve this problem, ranging from laxatives to a strict elimination diet  to high colonics to complimentary and alternative medicine. Been to half a dozen gastros in southwest as well as 2 colon rectal surgeons...all told me it was either ‘in my head,’ ‘not solvable,’ or ‘to eat more prunes.’ One colon rectal surgeon referred me to Mayo, AZ. I was diagnosed in 2004 with pelvic floor dyssynergia. Relieved to attain diagnosis, yet frustrated at the same time.

At Mayo, went through a dozen or so biofeedback sessions to ‘relearn’ how to defecate. Unfortunately this has not worked for me. Received botox shots into rectal muscles this past year.  Did not work.  I feel I have two options left:  sacral nerve stimulator or  colectomy (removal of colon with stoma).

At times I question if life is really supposed to be this unbelievably difficult. Honestly, the ONLY time I DO feel better is when I DO NOT eat and DO NOT get a menstrual period.

My immune system is also compromised.  My symptoms began in mid 1994 after a strange constellation of misdiagnoses: liver function problem; gallbladder stone(s); or mono.  Negative to all, with removal of gallbladder in early 1996.  Not been the same since this organ was removed!

Is there a Dr. House in the house? Not getting easier... Have not ruled out neurological problem for constipation based on family history of neuro problems.

In summary, as a single female, my future is unknown in multiple realms...financially, physically, emotionally, and of course socially. I am afraid and limited because of no emotional support system. IFFGD has been my saving grace during the horrible exhausting times.

– Name withheld by request
^{December 23, 2008}

I first started experiencing symptoms many years ago. I had constant heartburn, burning stomach aches, burning mouth; I always felt nauseous and I was constantly chewing on antacids, which did not help. Then I was no longer able to eat any foods or keep anything down. My doctor refused to listen to me and told me that young people do not have intestinal disorders and that I simply had an eating disorder since I was losing weight. However, the symptoms continued to control my life, I felt sick everyday, and I lost 20lbs. 

I finally changed doctors who gave me an upper GI and found out that I had GERD, among other gastrointestinal disorders. Medication made my life so much easier in the beginning, however I have had to switch medications often and I always have to be careful about what I eat, when I eat, and I still sleep with the head of my bed propped up. The good news is that I have a new specialist who actually listens and is helping me to find treatments that work with my lifestyle. The lesson I learned is to listen to my body and to always have a voice with my doctors, because no one knows your body better than you.

– Name withheld by request
^{April 19, 2008}

I felt so touched by Kristen’s August 3, 2007 story that I can't stop crying. I did not think there was another person feeling the same way I do.

I have been diagnosed with gastroparesis, and I am also lactose intolerant. My main problem, besides nausea when I eat, is that I feel so bloated that I tend to isolate myself from others. This is definitely affecting my marriage. I feel sick, uncomfortable, unwanted and hopeless. The medication I'm taking is not doing anything for me, and the other options are either not yet approved to be sold in US or have too many side effects.

The only thing that keeps me going is that I want to have beautiful kids with my loving husband one day. I love my hubby so much for understanding me and caring about me. Some day I will find the medication that will make me feel better.

– Name withheld by request
^{March 28, 2008}

I read the young man's story who was diagnosed with Hirschsprung's Disease at birth (below, under 'Perseverance'). I am a 56 year old female, who was diagnosed with this, along with a pelvic floor disorder two years ago. The specialist who finally diagnosed me told me that I have a relatively mild form of the disorder, but believe me, it is enough to make my life very complicated. From as far back as I can remember I could never have a bowel movement without a strong laxative. I always had bloody stools and by the time I was diagnosed, I had had 6 surgeries to repair damage to my colon and anus. I was left totally incontinent by the end of the final surgery. I found out that all the GI doctors and colorectal surgeons had been giving me the wrong advice my entire life.

I now have the mixed problem of not being able to go the bathroom or using laxatives and having to live in the bathroom for days on end. In the meantime the pain from bloating and the pelvic floor disorder is enough to make me dysfunctional the majority of the time. Is there anyone else out there who is dealing with severe constipation caused by a neurological defect, combined with a pelvic floor disorder, and complicated by fecal incontinence? If you have found help anywhere, I would love to hear from you. My doctor says the current surgeries have a very low success rate, but he is looking into an electrical stimulation implant.

[The role and current progress in our understanding for electrical pacing and stimulation in the GI tract is discussed in this 2007 Fact Sheet, No. 540 from IFFGD.]

– Name withheld by request
^{September 25, 2007}

All my life I lived on over the counter medicine for gas relief. You name it, I've tried it. Nothing worked. I wake up in the morning with a flat stomach. The minute a drink or food goes in my mouth, I look like I am pregnant! Even water bothers me. I love food, believe me! But I do not look forward to meals at all. I am constantly bloated and I feel like I always have gas. How do you explain to your lover that you don't want to be intimate because your stomach hurts and you are afraid of passing gas! How do you tell your friends you don't want to go to the beach today because your stomach looks too big for your bathing suit. How do you tell yourself you look good when you try on clothes at the store and cannot button the pants size you should fit into. I feel horrible all the time.

The one prescription drug that finally worked for me is suddenly no longer available. One doctor told me, "Sorry, nothing is going to work as good for you." Now what!

I have been to many doctors and many have treated me like I am an idiot. Nobody believes me. I am off again to see another doctor and I am not sure how this will go. I have been off medication for a few months now and I am tired of feeling sick all the time. I have not even found a diet to help me. I recently found this website and I was so excited to finally see something that showed encouragement and a desire to want to help people. I just hope someday we will be able to find relief!

– Kristen
^{August 3, 2007}

 

I am a 23 year old female living in New York City. I loved school, traveling, enjoying my friends, eating out, and enjoying my life until I developed symptoms of IBS about 2 years ago. My symptoms are sometimes so severe that my life has been interrupted by this disease as I am often afraid to leave my apartment for fear that I will have an episode. I constantly experience stomach pain, and I am always worried that I am going to feel sick. I have been to numerous GI doctors, had many blood tests, a sigmoidoscopy, and all with no findings except that I have severe IBS. I have yet to find a medicine that helps and all I want is my life back, to feel healthy and like myself again. I am comforted to learn that there is a large community of people that understand my symptoms. 

– Name withheld by request
_{^{June 18, 2007}}

At a loss

Functional gastrointestinal disorders are not caused by stress, but having them can certainly be stressful. While there is no cure for many of these disorders, symptoms can usually be improved when working with a knowledgeable doctor. Sadly, not all doctors understand these conditions, leaving their patients to find solutions on their own. IFFGD maintains a resource list of physicians interested in treating patients with these conditions. Contact us for information.

My life was so cool and there was a time when I used to say that I loved my life, but now its not the case. More than an year ago I joined a new job on the night shift, and then one day I started experiencing bad gas which made me very uncomfortable. Then I started passing semi solid stool every day. There will be lots of bad gas coming out every 5 minute (sometimes I don’t even know it’s happening) - it was so disgusting that I was unable to concentrate on work and I had to leave my job because of the poor performance. I consulted many doctors and tried many drugs but nothing helped. I stopped going out with friends, because of the fear that my friends should not come to know about my bad gas problem wherever I go the people around me used to react as if they have had a very bad smell and it still continues. Now I don’t go out much, I stay with my family at home because I have started developing this fear of going out.

I had all types of blood tests done and colonoscopy too, with no positive results. The doctor came up with the result that I have no problem and I am just simply creating all the problems and stressing myself, and suggested I should get married to get rid of these problems! He never believed me and sometimes he used to laugh which made me more stressful. I want have to have a successful career, so I don’t want to marry so soon.

Its been a year and a half with this problem, but I have not given up hope. I try to be positive and I have hope that one day I will become the way I was before. Right now I am consulting a gastro specialist so I am hoping for the best.

– Name withheld by request
^{June 27, 2008}

Perseverance

Hirschsprung’s disease is a condition that people are born with. It occurs in about 1 in 5,000 births and is treated with surgery. But as expressed in this courageous story, the interventions or amount of suffering experienced does not correlate with getting along in life.

I was born with Hirschsprung's disease in 1970, but it went untreated until I was 13 months old. I was born in rural southwest Virginia and this disease is so rare even today and at that time no doctor could diagnose it properly. My local doctor back in 1971 diagnosed the symptoms of vomiting and blood in the stool as a minor surgery. I ended up having to undergo emergency surgery and they used pull-through technique; half of my bowel was removed. After the surgery, I was in very critical condition and almost died. What should have been a 2 or 3 day surgery turned into a fight for life over a 3 week period. My parents never left my side – my mom didn't even go outside for 2 weeks straight! My dad could not afford a hotel so he slept in the hospital's janitor’s closet beside the boiler! They did everything they could to treat my disease. 

I am now 37 years old, and married with 2 healthy little girls. However, I have struggled all my life with this disease. Just recently I had a very bad pain for about 10 days in my left abdomen. The local doctor sent me to the ER, who performed an ultra sound, chest x-ray and took blood. All results were fine. I was given Vicodin and sent home. The next day, I was still hurting. I sought a second opinion and was given a CT scan, blood work, and a 24 hour urine test, and a small bowel x-ray which I'm still waiting for the results. 

I read literature from IFFGD and one of the symptoms of living with Hirschsprung's disease is that you could be hurting and common tests may show nothing. This has explained a lot that has happened to me over the course of my life. I have been in trouble with teachers and even my parents when I told them I was hurting and the doctors could not find anything wrong. So parents and teachers, please listen to your kids with this disease when they say they are hurting. Trust me, the pain is very real. 

I have never met anyone with Hirschsprung's disease and never even heard of anyone having it. If there is someone else out there, I would love to hear from another person that understands my pain and struggle. Thanks.

– Anthony Blair Smith
_{^{May 30, 2007}}  

I am sharing my story in response to Anthony's. I was born in 1971, but was not diagnosed with Hirschsprung's disease until I was 4 years old. I had a colostomy and the pull-through surgery. I suffered for many years with ‘accidents.’ My family was not supportive and punished me for these accidents.

I now have a very successful life, but suffer from intestinal pain and IBS. I don't go to the doctor anymore or take medicines. Whatever medicines I’ve taken either don't work me or make things worse. And rarely have I found a doctor that knows anything about Hirschsprung’s. I watch what I eat (low sugar, medium fiber diet) and drink lots of water. I am lactose intolerant and have other food allergies and always wondered if it was related to the disease. I do notice that when I get stressed, the pain and IBS flare up.

– Name withheld by request
_{^{December 31, 2008}}

Isolation

Most people feel alone with incontinence. But studies show that as many as 1 in 15 people suffer from the condition. It’s important to talk about it. 

I have been suffering with bowel incontinence for at least 15 years. I have gone from doctor to doctor with only sporadic relief of my symptoms. I have fewer good days, and many more bad days now. I can no longer work, travel, exercise, sleep or rarely leave my home. I have a family physician and two gastroenterologists currently. I hope to help others by letting you know you are not alone. I feel like I am the only person in the world who struggles this way.

– Name withheld by request
_{^{May 22, 2007}}

Just listen to me

People sometimes complain that their doctors "don’t listen" to them. It is essential to managing your disorder that you find a doctor who will listen, offer explanations, and work with you toward developing a treatment plan that helps. Your doctor may only see you for 15 minutes at an appointment, but you live with your body day in and day out – you are your own best witness as to what does and does not work for you.

If you feel your doctor is not listening, compile a list of questions and concerns, and ask for an appointment to discuss just those issues. If you still feel unanswered, consider finding another provider who will allow you to more actively participate in your own care.

I am 53 years of age and have experienced daily/weekly bouts of constipation, watery diarrhea, GERD, etc. Our oldest daughter also has the same problems. I am finally getting some answers after all these years. I tried using local doctors in Augusta, GA, but have not been very successful. I even told doctors at a nationally-known major medical center who could not understand my symptoms. Finally, I agreed to be evaluated by their gastro department with numerous tests.

Many gastroenterologist do not check for less common GI disorders. Also, the pancreas enzymes influence bowel function and some people might benefit from a check by an endocrinologist. Many of us are initially evaluated by the gastroenterologist and told everything is fine, when we know something is wrong. You may need to be evaluated at a major medical facility. Also do some research on the Internet about doctors and their specific interests within their field of study.

– Chris
_{^{January 19, 2008}}

Other Disorders

Many other disorders can affect the digestive tract. Some can have symptoms that may be similar to or overlap with gastrointestinal functional or motility disorders. These will have uniquely identifying features which differentiate them from functional GI or motility disorders. However, the impact these disorders have on a person’s life will be very recognizable to those who suffer from functional and motility disorders.

I have eosinophilic esophagitis and I remember the first day I had this problem. I was at a party and was eating broccoli and it got stuck. I panicked; I tried to drink something which made it worse. I was like ok freak thing. But it happened again and again not everyday though. Then the choking at night and continuously clearing my throat. I let it go because I was dealing with another problem,, pituitary adenoma, which is under control. I finally went to a gastro doc who did an endoscopy, and he found a Schatzki ring and an abundant amount of eosinophils in my esophagus. I had never heard of this stuff. But I read the symptoms and it all fits: diarrhea, constipation, feeling so bloated and full after eating just a little bit... The only thing that really kills me is the choking at night; it feels like someone took a needle and poked me in the corner of my throat and wakes me up out of a deep sleep. I am grateful it’s not a terminal illness.

– Name withheld by request
_{^{July 3, 2008}}