Courageous Stories
Share your experience of living with a digestive disorder – it can be therapeutic for you as well as others who suffer. Share your story.
Searching
For many persons, a functional bowel 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, too, am writing in response to Anthony's story. You are not alone. I live in Alabama, and this is my nephew's story. He was born in 1994. He had constipation problems since birth. He never had a normal bowel movement. As he got older, we noticed a protruding belly. It was so bad that we nicknamed him Pooh, because his tummy looked like Winnie the Pooh's. My sister always complained to me that something just wasn't right. She continuously gave him laxatives and suppository medicine to try to help with the constipation. Finally, she had to end up getting prescription medication from his pediatrician.
At age 8, he became very ill. I told my sister to take him to my children's pediatrician who realized immediately that something wasn't right. He was sent a hospital in North Alabama and had to have immediate surgery. He went 8 years undiagnosed before we found it was Hirschsprung's disease!
He had surgery and no longer has constipation problems, but a new problem arose after surgery and has continued since his surgery. He has some incontinence problems. The surgeon said it would take a couple of years to get better, but he will be 15 in November. We all thought that once his first surgery was performed and he healed... everything would be okay. My wish is that pediatricians will have more knowledge about this disease and not just prescribe medicine to help with going to the bathroom.
[Editor’s note: A number of bowel problems can persist after surgical treatment for Hirschsprung’s disease. Here are some articles from IFFGD to help sort this out, including treatment approaches:
#830 – Defecation Disorders after Surgery for Hirschsprung's Disease Go »
#839 – Hirschsprung’s Disease in Children and Adults Go »
#840 – Bowel Problems in Adults After Surgical Treatment for Childhood Hirschsprung’s Disease Go » ]– Name withheld by request
July 21, 2009
I felt so touched by reading Kristen's 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
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 read the young man's story who was diagnosed with Hirschsprung's Disease at birth (below). 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
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