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Personal Stories

Share your experience of living with a digestive disorder – it can be therapeutic for you as well as others who suffer.

View more stories or share your own through our grassroots arm, the Digestive Health Alliance (DHA).

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 was seen by multiple physicians and was given many different anti-sickness medications and also had to undergo many investigations including: CT, MRI, Endoscopies, Ultrasound Scans and Gastric emptying scans. Eventually I received the diagnosis of a disease called Gastroparesis or also known as delayed emptying of the stomach. My stomach had now become paralyzed and I was not able to digest solid food. I have not really eaten any solid food since January of this year. When I do eat, I throw it up. I have been living on Jell-O, puddings and ice cream; which are the only types of food that seem to stay down.

I began treatment by a local GI physician who prescribed multiple medications to try and treat the disease and control the symptoms. Eventually after failure and no relief he needed to refer me to a more specific GI specialist that deals specifically with gastroparesis. During one of my hospitalizations in February 2011 I was transferred from Reading Hospital and Medical Center to Temple University Hospital. After many trials of other medications to treat the disease I still was not making progress, all treatments we tried had failed. The time had come to move forward with a more aggressive approach. It was then we discussed the possible surgical options and we decided on the placement of a gastric stimulator. In August of 2011 the doctor surgically implanted a gastric stimulator. Unfortunately I still am not having relief and making no progress. I am still unable to keep down food and now having problems keeping down the Jell-O's and puddings. I also, now have problems with severe abdominal distention and right upper quadrant pain as soon as I try to eat anything. The doctor has adjusted the setting on the stimulator multiple times.

I am desperate to find a physician that has treatment options for my gastroparesis and can also handle me as a patient who already has a gastric stimulator in place. I am a Registered Nurse. I have done plenty of homework calling and researching many hospitals in Pennsylvania which all seem to have a rare few physicians who do treat gastroparesis but do not deal with the gastric stimulator.

I am hoping you would have some possible answers or options for me. My suffering began fall of last year causing me to vomit excessive amounts in a day. This resulted in some of my hair falling out and weight loss.

I am extremely desperate to find a very qualified physician that can treat my disease and possibly get me back to health. I am missing out on so much of my life let alone my 9 year old daughters’ life, since I am always sick throwing up which causes much exhaustion not to mention all the pain that goes along with it all. I am not able to participate in many family activities. Thank you for reading my story and any help you can give will be greatly appreciated.

Name withheld by request

I have been suffering for the last month with gastroparesis. I have never heard of this condition until I was told that I had it. My story starts last summer when I told my primary that I was getting what was likened to as severe hunger pains. They did not stop me from eating or living my life. I was told to up my GERD medication which I did. Then I went to my gastroenterologist complaining of the same pain. Now it seemed to be getting more frequent. I was still able to eat. I am a 10 year type 2 diabetic. I admit this last summer I did not keep my numbers where they should of been.

Well in early October my doctor did a Gastric emptying test which came out normal. This was followed up by a colonoscopy which also came out normal. Then I woke up on Oct 19 sick as a dog vomiting (and I never vomit) I went to the ER where they were convinced I had a blockage. They kept me on IV for 3 days, did a CAT scan and stomach x-rays and sent me home, where I continued to vomit every 2 days. They then did a endoscopy and saw that I had food in my stomach even though I fasted for 10 hours. I have since be in the ER again to get fluids. I am now going to a local university hospital seeing a specialist who told me there is no cure. I just want the pain and the vomiting to stop. I have lost 26 pounds in a month so I am very weak. Anyone out there with any hope or thoughts they can share?

Name withheld by request

[Editor’s Note: You can find information about gastroparesis on this IFFGD web page.]

Mine seems to be unusual as I seem to have symptoms that are not mentioned with the disease gastroparesis.

I started to have uncontrollable diarrhea at about the age of 25. It ended me in the hospital where it was said to be a nervous stomach. I was going thru a lot in my life at the time so I accepted it, Over the years it would be good and then I again would have a long episode of it, sometimes lasting for many hours. It would come on me suddenly and my kids remember me being sick and unable to go places with them - I was a single parent with 2 kids.

Finally a doctor heard me and they did a test - don’t remember them telling me what I had - and put me on metoclopramide. NO explanation or anything. In part I blame myself as I also did not ask questions. The bottle said no more than 90 days, but no one took me off and it seemed to be helping.

I moved back to my home town after I retired and of course had to get a new Dr, He also said nothing about the use of metoclopramide. So I continued to take it. By this time I had been diagnosed with type 2 diabetes. I also had been diagnosed with nerve damage in my feet, before the diagnose of diabetes. After about 2 years I had to get a new family doctor, and kept the first one as my diabetes doctor, she also did not ask about the metoclopramide.

After being on it for about 12 years I started to have uncontrollable movement symptoms. I later learned that these side-effects are associated with metoclopramide. Even though I no longer take the drug, the side-effects have persisted.

I most likely will have this forever, I have not given up - have been looking up all my drugs, my illness, and anything dealing with this.

I feel my doctors let me down, not explaining anything, or questioning me on the length of any drug, but I too am to blame for not being more involved with my health. I am now.

Name withheld by request

[Editor’s Note: We place a lot of trust in our doctors, but that does not mean we should not ask questions. Assume that all drugs – including over-the-counter and herbal supplements – have potential side-effects. Ask your doctor what they might be and what can be done to reduce risk. Here is an article from IFFGD to help guide you: Avoiding Drug Adverse Effects.]

I am 26 yrs old and am baffled by how many GI disorders there really are. Mine started about 4 years ago when I had my son. I was having awful pains on the top right side of my stomach. I called my doctor and she said that it is common to have gallbladder spasms after having a child but she wanted to do some tests and make sure my gallbladder was working properly. So I went to the hospital and had a test injecting dye into my gallbladder. It revealed that my gallbladder was not functioning properly, so I had a surgery to remove it. The doctor also removed a cyst.When I awoke I was told he removed the cyst, but no one could tell me from where. They just assured me it was a small cyst and no big deal. I starting feeling a little bit better for about a week, then I had an awful pain in my top right side again. I began vomiting uncontrollably. I went to the ER and they said my enzymes were elevated so it was probably acute attack of pancreatitis and it would go away on it's own. Well as time went on I had more painful attacks and couldn’t eat anything. I finally went to a specialist. He performed lots of tests. The results he came up with was Sphincter of Oddi dysfunction and abnormal pancreatic ducts. He has placed two stents and I've only gotten worse. He has tried numerous medications and I’ve even had to give myself shots, but had a bad reaction to them. My doctor acts like there’s nothing left to do for me. I am young and have children and am suffering with the worst pain I’ve ever felt and pain meds no longer work because I’ve been on them for so long. I can't eat anything without getting sick and have lost over 40 lbs in the last 2 months. I am glad that there are other people who understand, but sorry that so many people don't get help. I am currently trying to find another doctor to tell me what I have and help me get better. Until then I am suffering with pain, constipation, diarrhea, depression and a doctor who has no answers.

Jenny

Like many of you, I have struggled with health problems for the past few years – but have struggled for the longest in just getting a diagnosis. During 2005, I began to feel terrible, and had unrelenting intense epigastric pain after eating. My internist ran some tests, and discovered that my gallbladder was working at 7%. Since it was not really functioning, it was recommended that I have it removed. I did, and felt better for a while. The symptoms returned about a month later, but were a lot worse. I was referred to another specialist 2 hours away, and was diagnosed with Sphincter of Oddi dysfunction and had a biliary sphincterotomy. However, I did not have any significant improvement after the surgery. My doctor at the tertiary facility pretty much gave up on me and finally referred me back to my internist and local GI doctor.

At that time, I was so sick that I could only eat soup and baby food – and even that was painful to eat. No one could figure out what was wrong. In 2007, a local GI doctor referred me to a nationally renowned facility, and I received a call from the facility stating that a doctor had reviewed my case and thought there was nothing they could do for me! I eventually got an appointment with another facility 14 hours away. I underwent a few tests, and was diagnosed with moderate idiopathic gastroparesis. The GI fellow that broke the news to me prescribed Reglan, told me to eat a balanced diet, read about the disease on the internet, and figure out what to eat by surfing the web. He then left the room, and my husband and I got into the car and drove 14 hours back home. Still frustrated, because I thought something else may be wrong, I drove back 14 hours for a follow-up appointment. I was told by the attending physician there that maybe I pulled a muscle, maybe I was just depressed, or just maybe I wanted attention. That made me angry. I thought at one point that maybe I was losing my mind, but I had physical symptoms of pain, vomiting, and nausea – and there is no way I could be making up all of that!

I finally did my own research and found a list of the top motility clinics in the US. I decided that I wanted to get to the bottom of this… I was tired of the run around… I wanted some real answers from doctors that deal with these problems daily. I finally made a phone call to one of the most comprehensive motility clinics in the US and got an appointment rather quickly. My husband and I traveled once again, hopeful for answers. It was determined that I have severe reflux (even though I don’t have heartburn or an erosive esophagus) as well as gastroparesis. All of the doctors that I had seen before did not really go into detail about gastroparesis – only that I should not be hurting like I do. They blew off my symptoms and thought I should feel normal. Their attitude towards this disease made me feel like I should be normal and eat whatever I want, etc… This has caused me to really “be in denial” that anything significant is wrong with me, which actually made my symptoms worse. This “new” doctor actually told me that my problem was pretty moderate – and there was a problem! He did not sweep my problems under the rug or try to downplay them. We are actively trying to manage this situation. He actually gave me some dietary advice to follow. I have had consultations with a dietician that knows about gastroparesis and how to manage it. At least now I feel like I have a toolbox of solutions to my problem. It took me 5 years to get there, but I feel like I have finally made it!

For those of you out there who have been rejected by the “best” and who have lost all hope for help… please do not give up. I am confident there are answers out there for you. It may take some time and effort to find all the answers, but you will find them. It may take a long time to find a doctor that understands functional GI disorders, but he or she is out there, and has dedicated his or her life to help you. My prayer for you is to not become discouraged in your journey towards seeking help, and that you may find wellness and healing.

[Editor’s Note: IFFGD maintains a resource guide of physicians who have told us of their interest in seeing and treating patients with functional GI and motility disorders. Contact us via email at iffgd@iffgd.org if you need help in locating a physician. Be sure to let us know your symptoms or diagnosis, and your city and state.]

 

Name withheld by request

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

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

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

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

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

 

Last modified on January 9, 2014 at 02:37:04 PM