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. 

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 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}}

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 all the sophisticated equipment in the world will 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}}  

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}}