- Joined
- Dec 20, 2013
- Messages
- 35
Okay, *deep breath* hello, my name is Alexa, I am 24 years old, and here is the story of my chronic illness. I’m not sure where to start, except that maybe I’ll just say I came from a troubled background; dysfunctional family and all that. I developed anxiety and depression at some point (I suspect around the time I hit puberty). I wasn’t actually diagnosed with any mental illness until several years later, when I decided to see a psychiatrist and therapist myself, because my emotional symptoms were becoming too difficult to tolerate on my own. I was about 19 at this point. I was diagnosed with moderate depression, dysthymia, generalized anxiety disorder, panic disorder, and social anxiety with possibly PTSD. I don’t want to get into all the details, but let’s just say that certain relationships with people throughout my life, in addition to a genetic predisposition, allowed me to develop these disorders.
Taking a step backwards, when I was 15 I came down with a very serious case of mononucleosis. I was very sick for nearly a year and hospitalized for part of my illness, due to my inability to eat anything or keep down fluids. Everything was so swollen I could barely breathe. After I recovered from mono, I never really felt the same as before. I was always tired and never woke up feeling refreshed. My anxiety and depression worsened. It seemed like I was constantly coming down with sinus infections and my immune system was shot.
My first year of college (age 18) I began developing gastro intestinal symptoms. I started feeling nauseous all the time and vomiting on occasion. It was not the flu, and I knew that I wasn’t constantly getting food poisoning or anything. I avoided going to the doctor, because I felt this was something I could live with at the time, it was only about once a month. Eventually, it got to the point where I was constantly nauseous and vomiting at least 6 times a day. It was difficult for me to eat anything beyond very bland bread or potatoes. I often had severe headaches and migraines, which I did have to go to the emergency room for on occasion. I also struggled with very painful periods. I dropped a massive amount of weight (funny, one of the nurses asked me, “What’s your secret?!”) I was extremely fatigued all the time and it was difficult for me to accomplish anything. I missed quite a few days of work. They gave me a talk about it and I told them I would happily provide a doctor’s note, but they refused. They didn’t officially “fire” me as much as they just told me they didn’t need workers anymore throughout the summer. I missed many classes, had to drop out, retake them, or fail them. My grade point average suffered. Even with the help of disability services, I was unable to complete some of the tasks I needed to. I saw GI doctors for my issues and they did many tests (endoscopy, gastric emptying, blood tests, CT scan, etc.) They found nothing. They discovered inflammation, an elevated SED rate, and some anemia. They gave me some vitamins and diagnosed me with a “digestive motility disorder.” They referred me to all kinds of specialists: OBGYN, Ear Nose and Throat, Internal Medicine, Neurologist, etc. Nobody could really figure out what was wrong with me.
Somewhere along the line, someone gave me a prescription for Zofran and it must have helped, because my symptoms eventually began to become less severe. I was tired of all of the tests and doctor appointments, so I gave up trying to find a diagnosis and decided to just try and manage my symptoms myself. About 5 years had passed since my symptoms first started, when I went to my primary care physician for a routine physical she was astounded to find out that I was taking Zofran on a daily basis. She renewed it but asked me to make an appointment with my gastro because apparently it is unusual to take Zofran every day. I went to my gastro who said I should be taken off of it, because they do not know what the long term side effects of it are. I was hesitant to do this, because in the past if I had every stopped taking Zofran for a couple days (maybe I didn’t have time to run to the pharmacy or something) I would develop diarrhea. I assumed this was a side effect of withdrawing from Zofran or something, but my doctor told me it was not possible to withdraw from Zofran like that and suspected the diarrhea to be a symptom of something. He ran some blood tests and ordered yet another gastric emptying. I went off my Zofran and was told to call my doctor to see what happened. Of course, I developed diarrhea. Painful, watery, with oil like droplets in it and sometimes blood mixed in. My gastro ordered a 3 day stool collection which showed elevated levels of fat, suggesting fat malabsorption. Gastric emptying and blood tests came back normal and he decided “it was not a liver problem” and referred me to another gastro. I was very confused, I never thought I had a liver problem! Why had I been seeing this gastro for years who never bothered to tell me he only specialized in liver problems?
While I waited to see the new gastro, I decided to take matters into my own hands and try going off of gluten for 2 months, to see if there was improvement in my symptoms. During that time, I was still having diarrhea, but I believed my nausea and fatigue to be better. I started back on it again by eating some pizza and the first thing that happened was I threw up. I logged all of this and presented it to my doctor, along with a list of all of the symptoms I was having that I could possibly think of. I had already had the blood test for celiac’s disease, and it came back negative, but I know that you can still have it with a negative test, or at least gluten sensitivity. I thought maybe this was my problem.
I visited my new gastro and was surprised to learn he was a specialist in Crohn’s Disease and Ulcerative Colitis. They asked me if my previous doctor suspected I had that and I told them I had no idea. They ordered more blood tests, another endoscopy, and what I had been purposely avoiding for years: a colonoscopy. My blood tests showed that I had elevated levels of CRP, which they told me indicated inflammation somewhere in the body, and was not very helpful. I was terrified at the prospect of having a colonoscopy, but I knew that I had put it off for too long and should just get it over with. So, I did it. I was so nervous my heart rate was at 135 and they had to give me some anti-anxiety medication and fluids in addition to the regular sedation medication. It was just as terrible as I could have imagined, maybe even worse. I do not react like most people to the medication they give you to sedate you. My experience was nothing like the experiences of other people who have described theirs to me. I remember almost everything. It was painful and awkward. Everyone knows the prep is bad, but so was my colonoscopy. Immediately afterwards, my doctor told me they found something that indicated Crohn’s disease and showed me pictures of things in my bowels which I did not understand. They also explained to me that the inside of a normal person’s intestines is smooth and mine looked all lumpy, like cottage cheese. They discovered I had a small hiatal hernia and GERD (with inflammation and damage to my esophagus). They said they would evaluate the biopsies they had taken to confirm the Crohn’s diagnosis, and I had an appointment within the next few days to discuss the results with them. They also ordered an MRE which I completed the next day. I had to drink all sorts of nasty stuff and try not to throw it up.
The day finally came for my results. They told me I did not have celiacs, but it was still possible I could have a gluten sensitivity, but that was certainly not all that was wrong with me. All that damage couldn’t be caused by a gluten intolerance alone, they told me. My doctor explained the biopsies came back negative for Crohn’s, but they may have just taken them from places that didn’t have the disease. Apparently the MRE was also inconclusive, and I don’t know anything beyond that. So I asked the doctor, straight up, does he have a diagnosis for me? He said no. Some things point to Crohn’s and some things do not. I nearly started crying in the doctor’s office. I do not want to have Crohn’s, but after years of being ill, I just wanted a diagnosis. I am tired of people thinking my anxiety causes my symptoms and I wanted something solid to hold on to. I want to know what I am fighting. He gave me two options: 1. I could start on Crohn’s medication and call him in a month to let him know how I am doing. 2. I could do a pillcam to try to get a more clear diagnosis. I was too disregulated at this time to be able to make the decision for myself, so I told him to just choose. He started me on Pentasa about two weeks ago. He also instructed me to be on a gluten free diet, and then once they figured out what the larger problem was and I was feeling better, I could start re-introducing gluten to see if that would have a negative effect. He explained that there was a major problem which the gluten stuff would come secondary to, so they were taking out anything that could be causing symptoms. I saw a dietician since I am a vegetarian and had to be on a low fiber and gluten free diet in addition to that, leaving me very little things to eat. She was very helpful.
So I’ve been gluten free and on Pentasa for about 2 weeks now and I am not feeling any better. Still having diarrhea 2-8 times a day, still having nausea and vomiting, and still very fatigued. I have other random symptoms like canker sores, headaches, small itchy bumps, back pain, eye pain, etc. The weirdest part is even though it seems everything I eat immediately comes out, one way or the other, I have gained a lot of weight. I now weight more than I ever have in my life and it is extremely frustrating. I have been very carefully tracking everything I eat and all of the symptoms I have throughout the day, but I really feel helpless at this point. I think I am going to call my gastro tomorrow and request an appointment or something because waiting for a month with no diagnosis is killing me. I will do the pillcam if that will help diagnose, I don’t even care. They can do whatever to me I just want a damn diagnosis! I am very afraid that I will become so ill again that it will interfere with my job and I am applying to graduate school right now, which I really want to be able to handle. I also play roller derby and my illness has already been keeping me from going to practice and staying active. My social life is suffering because my friends, boyfriend, and family just do not seem to understand what I am going through. They are healthy and can’t understand why tasks that are seemingly so simple, like going to the mall, are so difficult for me.
I am sorry this is probably the longest thing you have ever read (and it still doesn’t include everything!), I just needed to tell somebody who would possibly understand and feel like I am not alone in the world. I apologize, because I know many of you have dealt with far worse and I probably shouldn’t be complaining, but this is my reality. If you actually took the time to read all of it, I truly appreciate it <3
Taking a step backwards, when I was 15 I came down with a very serious case of mononucleosis. I was very sick for nearly a year and hospitalized for part of my illness, due to my inability to eat anything or keep down fluids. Everything was so swollen I could barely breathe. After I recovered from mono, I never really felt the same as before. I was always tired and never woke up feeling refreshed. My anxiety and depression worsened. It seemed like I was constantly coming down with sinus infections and my immune system was shot.
My first year of college (age 18) I began developing gastro intestinal symptoms. I started feeling nauseous all the time and vomiting on occasion. It was not the flu, and I knew that I wasn’t constantly getting food poisoning or anything. I avoided going to the doctor, because I felt this was something I could live with at the time, it was only about once a month. Eventually, it got to the point where I was constantly nauseous and vomiting at least 6 times a day. It was difficult for me to eat anything beyond very bland bread or potatoes. I often had severe headaches and migraines, which I did have to go to the emergency room for on occasion. I also struggled with very painful periods. I dropped a massive amount of weight (funny, one of the nurses asked me, “What’s your secret?!”) I was extremely fatigued all the time and it was difficult for me to accomplish anything. I missed quite a few days of work. They gave me a talk about it and I told them I would happily provide a doctor’s note, but they refused. They didn’t officially “fire” me as much as they just told me they didn’t need workers anymore throughout the summer. I missed many classes, had to drop out, retake them, or fail them. My grade point average suffered. Even with the help of disability services, I was unable to complete some of the tasks I needed to. I saw GI doctors for my issues and they did many tests (endoscopy, gastric emptying, blood tests, CT scan, etc.) They found nothing. They discovered inflammation, an elevated SED rate, and some anemia. They gave me some vitamins and diagnosed me with a “digestive motility disorder.” They referred me to all kinds of specialists: OBGYN, Ear Nose and Throat, Internal Medicine, Neurologist, etc. Nobody could really figure out what was wrong with me.
Somewhere along the line, someone gave me a prescription for Zofran and it must have helped, because my symptoms eventually began to become less severe. I was tired of all of the tests and doctor appointments, so I gave up trying to find a diagnosis and decided to just try and manage my symptoms myself. About 5 years had passed since my symptoms first started, when I went to my primary care physician for a routine physical she was astounded to find out that I was taking Zofran on a daily basis. She renewed it but asked me to make an appointment with my gastro because apparently it is unusual to take Zofran every day. I went to my gastro who said I should be taken off of it, because they do not know what the long term side effects of it are. I was hesitant to do this, because in the past if I had every stopped taking Zofran for a couple days (maybe I didn’t have time to run to the pharmacy or something) I would develop diarrhea. I assumed this was a side effect of withdrawing from Zofran or something, but my doctor told me it was not possible to withdraw from Zofran like that and suspected the diarrhea to be a symptom of something. He ran some blood tests and ordered yet another gastric emptying. I went off my Zofran and was told to call my doctor to see what happened. Of course, I developed diarrhea. Painful, watery, with oil like droplets in it and sometimes blood mixed in. My gastro ordered a 3 day stool collection which showed elevated levels of fat, suggesting fat malabsorption. Gastric emptying and blood tests came back normal and he decided “it was not a liver problem” and referred me to another gastro. I was very confused, I never thought I had a liver problem! Why had I been seeing this gastro for years who never bothered to tell me he only specialized in liver problems?
While I waited to see the new gastro, I decided to take matters into my own hands and try going off of gluten for 2 months, to see if there was improvement in my symptoms. During that time, I was still having diarrhea, but I believed my nausea and fatigue to be better. I started back on it again by eating some pizza and the first thing that happened was I threw up. I logged all of this and presented it to my doctor, along with a list of all of the symptoms I was having that I could possibly think of. I had already had the blood test for celiac’s disease, and it came back negative, but I know that you can still have it with a negative test, or at least gluten sensitivity. I thought maybe this was my problem.
I visited my new gastro and was surprised to learn he was a specialist in Crohn’s Disease and Ulcerative Colitis. They asked me if my previous doctor suspected I had that and I told them I had no idea. They ordered more blood tests, another endoscopy, and what I had been purposely avoiding for years: a colonoscopy. My blood tests showed that I had elevated levels of CRP, which they told me indicated inflammation somewhere in the body, and was not very helpful. I was terrified at the prospect of having a colonoscopy, but I knew that I had put it off for too long and should just get it over with. So, I did it. I was so nervous my heart rate was at 135 and they had to give me some anti-anxiety medication and fluids in addition to the regular sedation medication. It was just as terrible as I could have imagined, maybe even worse. I do not react like most people to the medication they give you to sedate you. My experience was nothing like the experiences of other people who have described theirs to me. I remember almost everything. It was painful and awkward. Everyone knows the prep is bad, but so was my colonoscopy. Immediately afterwards, my doctor told me they found something that indicated Crohn’s disease and showed me pictures of things in my bowels which I did not understand. They also explained to me that the inside of a normal person’s intestines is smooth and mine looked all lumpy, like cottage cheese. They discovered I had a small hiatal hernia and GERD (with inflammation and damage to my esophagus). They said they would evaluate the biopsies they had taken to confirm the Crohn’s diagnosis, and I had an appointment within the next few days to discuss the results with them. They also ordered an MRE which I completed the next day. I had to drink all sorts of nasty stuff and try not to throw it up.
The day finally came for my results. They told me I did not have celiacs, but it was still possible I could have a gluten sensitivity, but that was certainly not all that was wrong with me. All that damage couldn’t be caused by a gluten intolerance alone, they told me. My doctor explained the biopsies came back negative for Crohn’s, but they may have just taken them from places that didn’t have the disease. Apparently the MRE was also inconclusive, and I don’t know anything beyond that. So I asked the doctor, straight up, does he have a diagnosis for me? He said no. Some things point to Crohn’s and some things do not. I nearly started crying in the doctor’s office. I do not want to have Crohn’s, but after years of being ill, I just wanted a diagnosis. I am tired of people thinking my anxiety causes my symptoms and I wanted something solid to hold on to. I want to know what I am fighting. He gave me two options: 1. I could start on Crohn’s medication and call him in a month to let him know how I am doing. 2. I could do a pillcam to try to get a more clear diagnosis. I was too disregulated at this time to be able to make the decision for myself, so I told him to just choose. He started me on Pentasa about two weeks ago. He also instructed me to be on a gluten free diet, and then once they figured out what the larger problem was and I was feeling better, I could start re-introducing gluten to see if that would have a negative effect. He explained that there was a major problem which the gluten stuff would come secondary to, so they were taking out anything that could be causing symptoms. I saw a dietician since I am a vegetarian and had to be on a low fiber and gluten free diet in addition to that, leaving me very little things to eat. She was very helpful.
So I’ve been gluten free and on Pentasa for about 2 weeks now and I am not feeling any better. Still having diarrhea 2-8 times a day, still having nausea and vomiting, and still very fatigued. I have other random symptoms like canker sores, headaches, small itchy bumps, back pain, eye pain, etc. The weirdest part is even though it seems everything I eat immediately comes out, one way or the other, I have gained a lot of weight. I now weight more than I ever have in my life and it is extremely frustrating. I have been very carefully tracking everything I eat and all of the symptoms I have throughout the day, but I really feel helpless at this point. I think I am going to call my gastro tomorrow and request an appointment or something because waiting for a month with no diagnosis is killing me. I will do the pillcam if that will help diagnose, I don’t even care. They can do whatever to me I just want a damn diagnosis! I am very afraid that I will become so ill again that it will interfere with my job and I am applying to graduate school right now, which I really want to be able to handle. I also play roller derby and my illness has already been keeping me from going to practice and staying active. My social life is suffering because my friends, boyfriend, and family just do not seem to understand what I am going through. They are healthy and can’t understand why tasks that are seemingly so simple, like going to the mall, are so difficult for me.
I am sorry this is probably the longest thing you have ever read (and it still doesn’t include everything!), I just needed to tell somebody who would possibly understand and feel like I am not alone in the world. I apologize, because I know many of you have dealt with far worse and I probably shouldn’t be complaining, but this is my reality. If you actually took the time to read all of it, I truly appreciate it <3
It was difficult to write, but I feel a catharsis afterwards. I will keep you posted with any updates.
