- Joined
- Nov 22, 2012
- Messages
- 8
Hi everyone,
I have been debating joining this support group for months. Mainly because I was uncertain on how to accept, let alone ask for, help. But also because I have been undiagnosed for over 18 years and finally received confirmation this past Tuesday, November 20th.
My symptoms for Crohns have been going on throughout my whole life. As a baby my parents have told me that I was unable to hold down anything accept breast milk. As a child I was consinantly constipated, had acid reflux and random abdominal pain. Doctors dismissed my symptoms and instead insisted that I was mimicking adult behaviors. Yes, because every child wants to mimic an adult who has acid reflux.
At age 15 my symptoms worsened. I spent quarter of my time in the classroom, a quarter of my time in nurses offices and the rest at home in pain. My mother has always been my strongest advocate. After receiving no help from my pediatric GPs she took me to her general practitioner. He looked me over, weighed me, examined me quickly, and as I was sitting on the examination table, my mom standing beside me, he looked at my mother and said matter of factly, “She is lying. She just wants to get out of school.”
My mom grabbed me by the hand and we quickly left his office and never returned.
Shortly thereafter, I began to cough up and vomit blood. My stools would be black and my mom, having a professional history working in hospital instantly grew concerned. She did research and found a pediatric gastroenterologist.
Dr. Cynthia See was amazing. She didn’t make me feel like I was insane but was patient and understanding. It was refreshing. Everything other doctor had judged me and basically called me a liar. After a lactose test, which came back negative to lactose intolerance, she performed an endoscopy. She discovered that I had six ulcers, three bleeding, and inflammation of my stomach, duodenum, and lower esophagus. She faxed the results to the GP who said I was lying to get out of school. Dr. See was appalled at the man’s reaction to my pain.
She put me on PPI’s and had me go on a low acid diet. It worked… for a while.
At age 19 my symptoms came back worse than ever before. I had another scope. It turned out I was born with a partially formed lower esophagus sphincter. This meant that all the acid from my stomach had nothing stopping it from enter my esophagus. This also meant that all the years of acid erosion on my esophagus was causing sever damaged. I was diagnosed with pre Barret’s Esophagus, a disease which is the mutation of esophagus cells into stomach cells. When the mutation is complete the new stomach cells would produce acid that would effectively eat away at the unprotected esophagus and all organs nearby. They gave me two years to live if I didn’t have a laparoscopic Nissen fundoplication.
After research, I opted for surgery. April 14, 2006 I had the Nissen, they wrapped the fundo portion of my stomach around my esophagus and secured it to my diaphragm, a hiatal hernia repair and, because they discovered I had the onset of gastroparesis, they made the opening of my stomach and duodenum bigger.
It took six months to fully recover and then for a few years I was fine. Then I started gaining weight, I was depressed and fatigued all of the time. My GP did a blood test which confirmed I have Hoshimoto’s thyroiditis. I got that Hoshimotos under control but my constipation came back. I was bloated all of the time and my stomach would distend painfully. I went to three gastroenterologist. The first looked at my history and without any tests he diagnosed me with gastroparesis. He prescribed a medication that had a side effect that causes nerve damaged. As he handed me the prescription he said, “now if you start to twitch uncontrollably within an hour or so, stop taking it.” I didn’t take it.
The second doctor felt he didn’t need to see me and sent his nurse practioner to see me instead.
The third doctor was amazing. Dr. Gilbert Simoni immediately thought I had Crohn’s disease but wanted to rule other diseases out before he made a hard confirmation. That was in 2010. Since then I’ve had the following:
1. Gastric emptying test x2: This confirmed I have moderate gastroparesis that is only getting worse which means I have to stick to a liquid to soft foods for the rest of my life. No fiber either.
2. Colonoscopy: Mild inflammation and polyps.
3. Endoscopy: mild to moderate inflammation.
4. Pill endoscopy: revealed damaged to my small and large intestines from Celiac Disease.
5. MRI: ovarian cyst, not related to the stomach problems.
6. Hepatobilliary: low functioning gallbladder, but not bad enough to be removed.
7. Perscriped mild dose of antidepressants to ruly out IBS: I don’t have IBS.
8. Breath test X2: The tests were a year apart and each time revealed bad bacteria and I was prescribed Xifaxin, an antibiotic that attacks only bad bacteria in the digestive system.
In the summer of 2012 my pain and symptoms got worse. I was in abdominal pain ALL of the time. When I get the pain it feels I’ve swallowed razor blades and then salt water. It is debilitating, and no position can help. With the ulcers I could curl up in the fetal position and instantly feel better. Now, it doesn’t matter what I do. Usually when the pain starts I can’t even move. I have nausea constantly, no matter what I eat or don’t eat. The Nissen, thankfully, prevents me from throwing up. I don’t have diarrhea, though I get the feeling that I am going to have it all the time. I think I don’t get it because of the gastroparesis and swelling due to IBD. Because of the constant constipation and the inability to throw up everything just sort of gets stuck.
My doctor finally gave me pentasa and tramadol for the pain. It worked. At first I didn’t want to take the Tramadol because taking it would mean it was real. I don’t want this to be real. I want to be ok; To be normal. I finally gave in and feel better. I get flare ups in the evening for some reason, preventing me from sleeping. I honestly don’t know where to go. I feel stuck, trapped and unable to go on. My social life has suffered horrible. I can’t go out without fearing a flare up will come on. I can’t eat at restaurants like a normal person. I have to prepare every meal myself.
I have four diagnoses of incurable diseases, three of them autoimmune; Hoshimotos thyroiditis disease, Celiac Disease, Crohn’s disease and gastroparesis. Doctors help with symptoms but they don’t help with how to deal.
I would love help and advice.
Thank you for providing a place where I can tell me story.
-Natalie.
I have been debating joining this support group for months. Mainly because I was uncertain on how to accept, let alone ask for, help. But also because I have been undiagnosed for over 18 years and finally received confirmation this past Tuesday, November 20th.
My symptoms for Crohns have been going on throughout my whole life. As a baby my parents have told me that I was unable to hold down anything accept breast milk. As a child I was consinantly constipated, had acid reflux and random abdominal pain. Doctors dismissed my symptoms and instead insisted that I was mimicking adult behaviors. Yes, because every child wants to mimic an adult who has acid reflux.
At age 15 my symptoms worsened. I spent quarter of my time in the classroom, a quarter of my time in nurses offices and the rest at home in pain. My mother has always been my strongest advocate. After receiving no help from my pediatric GPs she took me to her general practitioner. He looked me over, weighed me, examined me quickly, and as I was sitting on the examination table, my mom standing beside me, he looked at my mother and said matter of factly, “She is lying. She just wants to get out of school.”
My mom grabbed me by the hand and we quickly left his office and never returned.
Shortly thereafter, I began to cough up and vomit blood. My stools would be black and my mom, having a professional history working in hospital instantly grew concerned. She did research and found a pediatric gastroenterologist.
Dr. Cynthia See was amazing. She didn’t make me feel like I was insane but was patient and understanding. It was refreshing. Everything other doctor had judged me and basically called me a liar. After a lactose test, which came back negative to lactose intolerance, she performed an endoscopy. She discovered that I had six ulcers, three bleeding, and inflammation of my stomach, duodenum, and lower esophagus. She faxed the results to the GP who said I was lying to get out of school. Dr. See was appalled at the man’s reaction to my pain.
She put me on PPI’s and had me go on a low acid diet. It worked… for a while.
At age 19 my symptoms came back worse than ever before. I had another scope. It turned out I was born with a partially formed lower esophagus sphincter. This meant that all the acid from my stomach had nothing stopping it from enter my esophagus. This also meant that all the years of acid erosion on my esophagus was causing sever damaged. I was diagnosed with pre Barret’s Esophagus, a disease which is the mutation of esophagus cells into stomach cells. When the mutation is complete the new stomach cells would produce acid that would effectively eat away at the unprotected esophagus and all organs nearby. They gave me two years to live if I didn’t have a laparoscopic Nissen fundoplication.
After research, I opted for surgery. April 14, 2006 I had the Nissen, they wrapped the fundo portion of my stomach around my esophagus and secured it to my diaphragm, a hiatal hernia repair and, because they discovered I had the onset of gastroparesis, they made the opening of my stomach and duodenum bigger.
It took six months to fully recover and then for a few years I was fine. Then I started gaining weight, I was depressed and fatigued all of the time. My GP did a blood test which confirmed I have Hoshimoto’s thyroiditis. I got that Hoshimotos under control but my constipation came back. I was bloated all of the time and my stomach would distend painfully. I went to three gastroenterologist. The first looked at my history and without any tests he diagnosed me with gastroparesis. He prescribed a medication that had a side effect that causes nerve damaged. As he handed me the prescription he said, “now if you start to twitch uncontrollably within an hour or so, stop taking it.” I didn’t take it.
The second doctor felt he didn’t need to see me and sent his nurse practioner to see me instead.
The third doctor was amazing. Dr. Gilbert Simoni immediately thought I had Crohn’s disease but wanted to rule other diseases out before he made a hard confirmation. That was in 2010. Since then I’ve had the following:
1. Gastric emptying test x2: This confirmed I have moderate gastroparesis that is only getting worse which means I have to stick to a liquid to soft foods for the rest of my life. No fiber either.
2. Colonoscopy: Mild inflammation and polyps.
3. Endoscopy: mild to moderate inflammation.
4. Pill endoscopy: revealed damaged to my small and large intestines from Celiac Disease.
5. MRI: ovarian cyst, not related to the stomach problems.
6. Hepatobilliary: low functioning gallbladder, but not bad enough to be removed.
7. Perscriped mild dose of antidepressants to ruly out IBS: I don’t have IBS.
8. Breath test X2: The tests were a year apart and each time revealed bad bacteria and I was prescribed Xifaxin, an antibiotic that attacks only bad bacteria in the digestive system.
In the summer of 2012 my pain and symptoms got worse. I was in abdominal pain ALL of the time. When I get the pain it feels I’ve swallowed razor blades and then salt water. It is debilitating, and no position can help. With the ulcers I could curl up in the fetal position and instantly feel better. Now, it doesn’t matter what I do. Usually when the pain starts I can’t even move. I have nausea constantly, no matter what I eat or don’t eat. The Nissen, thankfully, prevents me from throwing up. I don’t have diarrhea, though I get the feeling that I am going to have it all the time. I think I don’t get it because of the gastroparesis and swelling due to IBD. Because of the constant constipation and the inability to throw up everything just sort of gets stuck.
My doctor finally gave me pentasa and tramadol for the pain. It worked. At first I didn’t want to take the Tramadol because taking it would mean it was real. I don’t want this to be real. I want to be ok; To be normal. I finally gave in and feel better. I get flare ups in the evening for some reason, preventing me from sleeping. I honestly don’t know where to go. I feel stuck, trapped and unable to go on. My social life has suffered horrible. I can’t go out without fearing a flare up will come on. I can’t eat at restaurants like a normal person. I have to prepare every meal myself.
I have four diagnoses of incurable diseases, three of them autoimmune; Hoshimotos thyroiditis disease, Celiac Disease, Crohn’s disease and gastroparesis. Doctors help with symptoms but they don’t help with how to deal.
I would love help and advice.
Thank you for providing a place where I can tell me story.
-Natalie.
