- Joined
- Jun 3, 2014
- Messages
- 42
Hi All,
Great to meet you! This forum looks like a great place full of information, which I am so happy to know more about.
I am newly diagnosed with what my GI feels certain is Crohn's Disease, but it could be UC. We are waiting on biopsy results to confirm which, but she truly believes it is Crohn's.
How this ALL started: Boy, this all was a big surprise for me-again.
My whole life it seems I have had the rug ripped out from under me concerning my health.
I was not the healthiest kid growing up-always had infections, minor surgeries etc. but nothing super major. When I was 19, I found myself married, being cheated on, and attempted suicide. I was found by police and ambulance, stomach pumped and sent against my will for a state psychiatric hospital stay. It was not fun, but it saved my life. It was at that time I found out I had Bipolar I and struggled for 5 years in and out of hospitals until I got stable and on the right meds. At this point, I was a 24yr old divorcee, but I was getting my life back. I haven't been to the hospital in 9 years and have been pretty stable on meds too
When I was 25, I met a wonderful man who was to become my husband. He knew I had a mental illness, and loved me despite that. We had a long engagement and courtship because I was not ready, and he waited for me. It was around the time of our wedding I started to get sick physically. I chalked it up to stress from wedding planning. But 2 weeks before our wedding, I had a blood clot found in my leg and had to go to ER. I was able to get that fixed before our wedding but I was still pretty sick with chest pain, mysterious and painful sores on my legs, blue fingers, etc. After we got married, my husband lost his job and we had to make a hasty and unplanned moved to Texas (from California) because my family would be able to help us more. I needed to get a job, which I did, but I was still sick. 6 months after we arrived, I had to quit my job because I was always so sick. My husband was able to get a job to support both of us at that time (TYJ) and good health insurance. I was still have a bunch of odd health issues that lingered so I finally went to a really good general doctor and she immediately suspected I had Lupus. She did a bunch of tests and sent me to a dermatologist (for sore skin biopsy on my legs) and a rheumatologist. After a lot of testing, almost a year later, it was proven that I did indeed have Lupus. It was a long time and hard to diagnose and suffer, but I stuck with it and was feeling so much better. I was put on Immunosuppressant drugs and pretty much went into remission for a long time! It was great.
At the ending of 2013, My husband got fired from his job and was very, very depressed. I had to hurry up and get a job so my husband could get depression help and so we could continue to pay bills, which I did not mind at all.
The Lord blessed me quickly with a really great job that I made a lot of money at only working part time selling insurance over the phone. It was a stressful job in many ways because I had to pass the state insurance exam to keep my job. But, I was able to pass the first try and excel!
However, I started getting really dizzy feeling. I noticed I had an ear infection a few weeks before and went to urgent care. They gave me the usual dosing of antibiotics and I went on my way. Fast forward 2 weeks later, I was having vertigo so bad I had a medical emergency at work because I could no longer stand or walk. I was throwing up from being so dizzy a lot and could not drive a car or walk. And, because I was the only one who had a job, I still had to try to work!! I propped myself up in a chair at work everyday and did the best I could. My husband drove me everywhere too.
After several doctors appointments and some very invasive and scary testing, it was determined that I do not have just and ear infection or BPPV/Labrynthitis, but that I have the beginning stages of Meniere's Disease (an inner ear disease that there is no cure for or treatment for that mostly elderly people get and it takes your hearing when the disease burns out). My grandfather has Meniere's Disease and lost hearing in both ears, so apparently it is hereditary. I found out I had damage in my inner left ear that cannot be fixed and I only had 40% hearing left in that ear. I had to go through Vestibular Rehabilitation Therapy to relearn to walk with a cane and learn balance again to accommodate the damage and hearing loss in my left ear. I still get the dizzies but was feeling a lot better.
After all that, I was still trying to work. I passed my exam and now I was to work in the call center taking calls and selling insurance over the phone at a major company. But, I started getting sick in my trash can a lot and had to use the bathroom a lot. I figured it was from being dizzy though so I did the best I could. A few weeks later, the stomach bug or whatever symptoms did not seem to go away. I went to see my regular doctor and he said that I needed to go to the ER because I was severely dehydrated.
I go to the ER that day and they did not do much. They took a bunch of blood work and gave me IV fluids. They said I had a bad stomach bug, but I told them I never heard of a stomach bug lasting over 2 weeks. They shrugged at me. They also told me I had no infection in my blood work, but gave me antibiotics in my IV and sent me home with Flagyl and Cipro (very specific antibiotics for stomach/colon issues). I asked why and they would not answer me. I took them anyway in hopes it would make me better, but they did not.
2 weeks later, I went back to my regular doctor and told him what happened at ER and that I was still throwing up a lot and had diarrhea 8-14 times a day with lots of cramping and my bowel movements were odd looking with blood in it. He said that I needed to go see a GI and have a colonoscopy immediately. He called the GI clinic of the hospital and I was put as a top priority. I was put there in February, but my appointment was not till May!!
My husband was starting to feel a little better and , luckily, found another decent job with decent insurance so I could stop working-which I hated to have to quit but I was so sick all the time. I was now trying to get into a GI ANYWHERE I could!! They are very hard to get into and I was told by several doctors' offices and insurance company that it is my age (I am 32) that is making it hard for me to get into a GI. In the meantime, I am still really sick all the time. I can't eat, can't sleep, all my meds are off because they are all not absorbing in me. So, out of desperation, I called an old primary care doctor and begged her to get me into ANY GI she knows. I told her all that happened and she got me into a wonderful GI the next day. The Lord is Wonderful!!
When I went to the GI, the GI said I have a lot of stomach pain and colon issues. She made me go to dermatologist for painful skin sores on my legs. I had a biopsy and it proved they were Erythema Nodosum- pretty common in autoimmune disease and IBD. She promptly signed me up for a lot of tests, a stool study and scheduled me for a colonoscopy/upper endoscopy and biopsies (all at the same time)in two weeks after the appointment I had with her. The lab results came back the week before from blood and stool. All those tests ruled out Celiac Disease, IBS, parasites, etc., but she still said I need to have the other procedures done because there is still a lot wrong.
So, I followed through with the prep and did the procedures. My doctor waited for me to wake up and told me what she found. She feels pretty certain I have Crohn's Disease and knows I have Erosive Esophagitis that I produce too much stomach acid and it is causing erosions in stomach/esophagus (However she said these are not related. It is two separate issues). She took a ton of nasty pictures inside and gave me a set. She also said my colon is completely inflamed and ulcerated from the tip of my anus all the way up my entire colon and it is causing all the pain. She was thinking at first I had UC, but then she got to the ileum and found what I had was more consistent with Crohn's. However, she needs the biopsy results to confirm everything and I should be getting those back by this Friday. Either way, it IS an IBD.
She said we will not be waiting to treat me though and put me on a TON of oral steroids, Asacol (2400mg a day) and Dexilant (for stomach problem and acid repair). I have been on all that for 5 days so far. The Dexilant seems to be working, but the other stuff doesn't seem to be yet. I put in a call to my GI doctor today to see what else can be done with the pain, constant diarrhea and cramping.
Since February, I have lost 55lbs and counting (TYJ I had it to lose), been sicker than I have EVER been sick in my life, dealt with more struggles at one time than ever in my life and am still sick. But, I also became more brave, more self-reliant, stronger and more faithful. I am trying to be as optimistic and positive as possible and trust everything will work out. My husband, though he is a bit depressed still, still very much loves me and supports me. My family has helped me a lot and my friends have really come through for me for the most part.
I find myself just trying to enjoy the little things and take everything one day at a time. I pray that I find a medication or treatment soon that will help me with IBD so everything can fall back into place. I do hope to achieve remission as soon as possible and that is my doctor's goal too. So, I feel blessed
Thanks for reading my novel-LOL.
It is great to meet you all and I pray you all are as happy and as healthy as you can possibly achieve too.
-Jackie
Great to meet you! This forum looks like a great place full of information, which I am so happy to know more about.
I am newly diagnosed with what my GI feels certain is Crohn's Disease, but it could be UC. We are waiting on biopsy results to confirm which, but she truly believes it is Crohn's.
How this ALL started: Boy, this all was a big surprise for me-again.
My whole life it seems I have had the rug ripped out from under me concerning my health.
I was not the healthiest kid growing up-always had infections, minor surgeries etc. but nothing super major. When I was 19, I found myself married, being cheated on, and attempted suicide. I was found by police and ambulance, stomach pumped and sent against my will for a state psychiatric hospital stay. It was not fun, but it saved my life. It was at that time I found out I had Bipolar I and struggled for 5 years in and out of hospitals until I got stable and on the right meds. At this point, I was a 24yr old divorcee, but I was getting my life back. I haven't been to the hospital in 9 years and have been pretty stable on meds too
When I was 25, I met a wonderful man who was to become my husband. He knew I had a mental illness, and loved me despite that. We had a long engagement and courtship because I was not ready, and he waited for me. It was around the time of our wedding I started to get sick physically. I chalked it up to stress from wedding planning. But 2 weeks before our wedding, I had a blood clot found in my leg and had to go to ER. I was able to get that fixed before our wedding but I was still pretty sick with chest pain, mysterious and painful sores on my legs, blue fingers, etc. After we got married, my husband lost his job and we had to make a hasty and unplanned moved to Texas (from California) because my family would be able to help us more. I needed to get a job, which I did, but I was still sick. 6 months after we arrived, I had to quit my job because I was always so sick. My husband was able to get a job to support both of us at that time (TYJ) and good health insurance. I was still have a bunch of odd health issues that lingered so I finally went to a really good general doctor and she immediately suspected I had Lupus. She did a bunch of tests and sent me to a dermatologist (for sore skin biopsy on my legs) and a rheumatologist. After a lot of testing, almost a year later, it was proven that I did indeed have Lupus. It was a long time and hard to diagnose and suffer, but I stuck with it and was feeling so much better. I was put on Immunosuppressant drugs and pretty much went into remission for a long time! It was great.
At the ending of 2013, My husband got fired from his job and was very, very depressed. I had to hurry up and get a job so my husband could get depression help and so we could continue to pay bills, which I did not mind at all.
The Lord blessed me quickly with a really great job that I made a lot of money at only working part time selling insurance over the phone. It was a stressful job in many ways because I had to pass the state insurance exam to keep my job. But, I was able to pass the first try and excel!
However, I started getting really dizzy feeling. I noticed I had an ear infection a few weeks before and went to urgent care. They gave me the usual dosing of antibiotics and I went on my way. Fast forward 2 weeks later, I was having vertigo so bad I had a medical emergency at work because I could no longer stand or walk. I was throwing up from being so dizzy a lot and could not drive a car or walk. And, because I was the only one who had a job, I still had to try to work!! I propped myself up in a chair at work everyday and did the best I could. My husband drove me everywhere too.
After several doctors appointments and some very invasive and scary testing, it was determined that I do not have just and ear infection or BPPV/Labrynthitis, but that I have the beginning stages of Meniere's Disease (an inner ear disease that there is no cure for or treatment for that mostly elderly people get and it takes your hearing when the disease burns out). My grandfather has Meniere's Disease and lost hearing in both ears, so apparently it is hereditary. I found out I had damage in my inner left ear that cannot be fixed and I only had 40% hearing left in that ear. I had to go through Vestibular Rehabilitation Therapy to relearn to walk with a cane and learn balance again to accommodate the damage and hearing loss in my left ear. I still get the dizzies but was feeling a lot better.
After all that, I was still trying to work. I passed my exam and now I was to work in the call center taking calls and selling insurance over the phone at a major company. But, I started getting sick in my trash can a lot and had to use the bathroom a lot. I figured it was from being dizzy though so I did the best I could. A few weeks later, the stomach bug or whatever symptoms did not seem to go away. I went to see my regular doctor and he said that I needed to go to the ER because I was severely dehydrated.
I go to the ER that day and they did not do much. They took a bunch of blood work and gave me IV fluids. They said I had a bad stomach bug, but I told them I never heard of a stomach bug lasting over 2 weeks. They shrugged at me. They also told me I had no infection in my blood work, but gave me antibiotics in my IV and sent me home with Flagyl and Cipro (very specific antibiotics for stomach/colon issues). I asked why and they would not answer me. I took them anyway in hopes it would make me better, but they did not.
2 weeks later, I went back to my regular doctor and told him what happened at ER and that I was still throwing up a lot and had diarrhea 8-14 times a day with lots of cramping and my bowel movements were odd looking with blood in it. He said that I needed to go see a GI and have a colonoscopy immediately. He called the GI clinic of the hospital and I was put as a top priority. I was put there in February, but my appointment was not till May!!
My husband was starting to feel a little better and , luckily, found another decent job with decent insurance so I could stop working-which I hated to have to quit but I was so sick all the time. I was now trying to get into a GI ANYWHERE I could!! They are very hard to get into and I was told by several doctors' offices and insurance company that it is my age (I am 32) that is making it hard for me to get into a GI. In the meantime, I am still really sick all the time. I can't eat, can't sleep, all my meds are off because they are all not absorbing in me. So, out of desperation, I called an old primary care doctor and begged her to get me into ANY GI she knows. I told her all that happened and she got me into a wonderful GI the next day. The Lord is Wonderful!!
When I went to the GI, the GI said I have a lot of stomach pain and colon issues. She made me go to dermatologist for painful skin sores on my legs. I had a biopsy and it proved they were Erythema Nodosum- pretty common in autoimmune disease and IBD. She promptly signed me up for a lot of tests, a stool study and scheduled me for a colonoscopy/upper endoscopy and biopsies (all at the same time)in two weeks after the appointment I had with her. The lab results came back the week before from blood and stool. All those tests ruled out Celiac Disease, IBS, parasites, etc., but she still said I need to have the other procedures done because there is still a lot wrong.
So, I followed through with the prep and did the procedures. My doctor waited for me to wake up and told me what she found. She feels pretty certain I have Crohn's Disease and knows I have Erosive Esophagitis that I produce too much stomach acid and it is causing erosions in stomach/esophagus (However she said these are not related. It is two separate issues). She took a ton of nasty pictures inside and gave me a set. She also said my colon is completely inflamed and ulcerated from the tip of my anus all the way up my entire colon and it is causing all the pain. She was thinking at first I had UC, but then she got to the ileum and found what I had was more consistent with Crohn's. However, she needs the biopsy results to confirm everything and I should be getting those back by this Friday. Either way, it IS an IBD.
She said we will not be waiting to treat me though and put me on a TON of oral steroids, Asacol (2400mg a day) and Dexilant (for stomach problem and acid repair). I have been on all that for 5 days so far. The Dexilant seems to be working, but the other stuff doesn't seem to be yet. I put in a call to my GI doctor today to see what else can be done with the pain, constant diarrhea and cramping.
Since February, I have lost 55lbs and counting (TYJ I had it to lose), been sicker than I have EVER been sick in my life, dealt with more struggles at one time than ever in my life and am still sick. But, I also became more brave, more self-reliant, stronger and more faithful. I am trying to be as optimistic and positive as possible and trust everything will work out. My husband, though he is a bit depressed still, still very much loves me and supports me. My family has helped me a lot and my friends have really come through for me for the most part.
I find myself just trying to enjoy the little things and take everything one day at a time. I pray that I find a medication or treatment soon that will help me with IBD so everything can fall back into place. I do hope to achieve remission as soon as possible and that is my doctor's goal too. So, I feel blessed
Thanks for reading my novel-LOL.
It is great to meet you all and I pray you all are as happy and as healthy as you can possibly achieve too.
-Jackie
