Sunday, December 1, 2013
My Life with Gastroparesis: My Life with 5 Diseases
My Life with Gastroparesis: My Life with 5 Diseases: I started this blog with all intentions to revolve around my stomach disease, Gastroparesis. However due to other health conditions taking ...
My Life with 5 Diseases
I started this blog with all intentions to revolve around my stomach disease, Gastroparesis. However due to other health conditions taking a dramatic toll on me I have decided to join them all together in one blog. I do hope my fellow readers on Gastroparesis continue to read because I have learned that all my diseases are linked together, cause similar symptoms and you just might find it extremely interesting, even helpful.
Its amazing how one thing can lead to another and cause so many complications for your body. These past of years have been on a constant roller coaster ride for me. Honestly, I am ready to get off this ride and pleading to have my life back. I have been recently diagnosed with my 5th disease and I feel like I am loosing. I tend to question myself all the time. Why am I going through so much right now? I heard something on a local radio station WMHK, a Christian radio station, and they were discussing how our Lord gives us things to make us change. For me, I know Jesus is my Lord and Savior but how does he want me to change for him? I started this blog initially to help others and maybe gather information from my experiences to help others cope and to help raise awareness to others who have never heard of a rare stomach disease called Gastroparesis. But now I am expanding my blog to not only include my experience with Gastroparesis but also Primary Adrenal Insufficiency, Secondary Adrenal Insufficiency, Hashimoto Thyroiditis and Empty Sella Syndrome.
I'll give a little recap.. I was diagnosed with thyroid problems 17 years ago. Over the years of having constant change in medications and going back and forth between having hyper and hypo, it was determined I had Hashimoto Thyroiditis Disease. I knew not having your thyroid levels not correct over a long period of time could cause harm to my body. After many years seeing different Endocrinologist and baffling every one of them as to why I could not get leveled out, I finally have the reason why. It wasn't until I was referred to a new Endocrinologist that she discovered something strange with my blood results and wanted to run more tests. After doing a cortisol test injection and finding out my body had no reaction to the injection was one missing piece to my strange puzzle. My adrenal glands are not functioning properly. Adrenal glands are above your kidneys, They release a hormone to stable your body under stress, whether the stress is caused by infections, physical stress, etc. However mine doesn't work properly due to my autoimmune disease, Hashimoto Thyroiditis. All these years finally caught up to me. Some symptoms include chronic fatigue, dizziness, low blood pressure, muscle aches, loss of weight, nausea, vomiting and diarrhea. Which brings me back to Gastroparesis... One of the many reasons for causes of delayed gastric emptying aka Gastroparesis is Adrenal Insufficiency. Yep.. you read right. During my research I discovered that if my doctor had not discovered my Primary and Secondary Adrenal Insufficiency, I would have only had less than a two year life span left. Now I have to keep hydrocordisone oral medication on hand at all times. I take 10 mg in the morning and 5 mg at night, which is a low dosage. If I am sick, such as diarrhea, have a fever of 100 or more or if I have an infection, I have to double or triple my hydrocortisone. If I am too weak, vomiting and can't take the medication orally, I must be given an injection of cortisol and immediately be admitted to the hospital. Recently I had to show my kids and boyfriend how to give me an injection using medication and syringe which is kept with me at all times and now have to wear a medical alert bracelet. Possible complications for adrenal crisis, coma, seizures, shock and even death. Side effects from the medication I am on is too long to type out. I was told by my thyroid specialist its extremely important that I keep constant communication with them. Doctor is on call 24/7. My life revolves around a tiny little pill to keep me alive for the rest of my life. In the picture below is the injectable and oral medication of hydrocortisone with syringe that is with me at all times.
In my last blog I mentioned I had Empty Sella Syndrome. My doctor informed me I had to have had it since birth due to my pituitary gland being flattened. It just took this long for my body to shut down. The pituitary gland makes several hormones that controls other glands in your body. I have two out of four glands that do not function, adrenal and thyroid glands.
Recently I went back to NC for a small intestinal bacterial overgrowth test. That was a nasty tasting test but the results were what I expected, no bacterial overgrowth! I am happy about the results, even told the nurse she made my day. I didn't think I had a bacterial overgrowth because I would have serious side effects and I wasn't having any.
I get so depressed writing my blog. I know there is always at least a month span between each post but I get to the point to where I loose hope. Sometimes its better to ignore your troubles and feel somewhat normal. Many of us who have Gastroparesis, Primary and Secondary Adrenal Insufficiency, etc., don't feel normal. We never will. Many friends and family think its all in our minds, don't believe us when we express our emotions or concerns. Many of us have lost so many friends because they would rather not deal with people like us. But you know what? We have gained so much more! We have gained knowledge and help each other out. We have gained friendship with others who suffer with diseases. We have gained something that other average people wont ever acknowledge, the value of life. When your constantly being told you have one disease after another life tendency becomes more valuable. On a day to day basis, I put a smile on my face, treat others the way I would want to be treated, hope and pray I made a difference in someone's life and hope I continue to live longer.
Its amazing how one thing can lead to another and cause so many complications for your body. These past of years have been on a constant roller coaster ride for me. Honestly, I am ready to get off this ride and pleading to have my life back. I have been recently diagnosed with my 5th disease and I feel like I am loosing. I tend to question myself all the time. Why am I going through so much right now? I heard something on a local radio station WMHK, a Christian radio station, and they were discussing how our Lord gives us things to make us change. For me, I know Jesus is my Lord and Savior but how does he want me to change for him? I started this blog initially to help others and maybe gather information from my experiences to help others cope and to help raise awareness to others who have never heard of a rare stomach disease called Gastroparesis. But now I am expanding my blog to not only include my experience with Gastroparesis but also Primary Adrenal Insufficiency, Secondary Adrenal Insufficiency, Hashimoto Thyroiditis and Empty Sella Syndrome.
I'll give a little recap.. I was diagnosed with thyroid problems 17 years ago. Over the years of having constant change in medications and going back and forth between having hyper and hypo, it was determined I had Hashimoto Thyroiditis Disease. I knew not having your thyroid levels not correct over a long period of time could cause harm to my body. After many years seeing different Endocrinologist and baffling every one of them as to why I could not get leveled out, I finally have the reason why. It wasn't until I was referred to a new Endocrinologist that she discovered something strange with my blood results and wanted to run more tests. After doing a cortisol test injection and finding out my body had no reaction to the injection was one missing piece to my strange puzzle. My adrenal glands are not functioning properly. Adrenal glands are above your kidneys, They release a hormone to stable your body under stress, whether the stress is caused by infections, physical stress, etc. However mine doesn't work properly due to my autoimmune disease, Hashimoto Thyroiditis. All these years finally caught up to me. Some symptoms include chronic fatigue, dizziness, low blood pressure, muscle aches, loss of weight, nausea, vomiting and diarrhea. Which brings me back to Gastroparesis... One of the many reasons for causes of delayed gastric emptying aka Gastroparesis is Adrenal Insufficiency. Yep.. you read right. During my research I discovered that if my doctor had not discovered my Primary and Secondary Adrenal Insufficiency, I would have only had less than a two year life span left. Now I have to keep hydrocordisone oral medication on hand at all times. I take 10 mg in the morning and 5 mg at night, which is a low dosage. If I am sick, such as diarrhea, have a fever of 100 or more or if I have an infection, I have to double or triple my hydrocortisone. If I am too weak, vomiting and can't take the medication orally, I must be given an injection of cortisol and immediately be admitted to the hospital. Recently I had to show my kids and boyfriend how to give me an injection using medication and syringe which is kept with me at all times and now have to wear a medical alert bracelet. Possible complications for adrenal crisis, coma, seizures, shock and even death. Side effects from the medication I am on is too long to type out. I was told by my thyroid specialist its extremely important that I keep constant communication with them. Doctor is on call 24/7. My life revolves around a tiny little pill to keep me alive for the rest of my life. In the picture below is the injectable and oral medication of hydrocortisone with syringe that is with me at all times.
In my last blog I mentioned I had Empty Sella Syndrome. My doctor informed me I had to have had it since birth due to my pituitary gland being flattened. It just took this long for my body to shut down. The pituitary gland makes several hormones that controls other glands in your body. I have two out of four glands that do not function, adrenal and thyroid glands.
Recently I went back to NC for a small intestinal bacterial overgrowth test. That was a nasty tasting test but the results were what I expected, no bacterial overgrowth! I am happy about the results, even told the nurse she made my day. I didn't think I had a bacterial overgrowth because I would have serious side effects and I wasn't having any.
I get so depressed writing my blog. I know there is always at least a month span between each post but I get to the point to where I loose hope. Sometimes its better to ignore your troubles and feel somewhat normal. Many of us who have Gastroparesis, Primary and Secondary Adrenal Insufficiency, etc., don't feel normal. We never will. Many friends and family think its all in our minds, don't believe us when we express our emotions or concerns. Many of us have lost so many friends because they would rather not deal with people like us. But you know what? We have gained so much more! We have gained knowledge and help each other out. We have gained friendship with others who suffer with diseases. We have gained something that other average people wont ever acknowledge, the value of life. When your constantly being told you have one disease after another life tendency becomes more valuable. On a day to day basis, I put a smile on my face, treat others the way I would want to be treated, hope and pray I made a difference in someone's life and hope I continue to live longer.
Monday, October 28, 2013
My recent scare
I saw my Thyroid Specialist today and discuss her findings, medications and MRI results. I had so many questions and she took the time to answer each of them. I have Primary and Secondary Adrenal Insufficiency. Primary Adrenal Insufficiency is due to my pituitary gland not producing enough hormones. My MRI showed I have Empty Sella Syndrome which is a condition in which the pituitary gland shrinks or becomes flattened. In my case I hardly have one. Therefore if I didn't seek help when I did or if my doctor didn't test my cortisol, I would have died. The medication I am on is imperative for me to survive. I was told that this condition is apparently something I was born with. Birth defect I guess you can say. It has taken 39 years for my body to come to a point where it can not function anymore. Primary Adrenal Insufficiency is linked to Addison's Disease but thankfully I do not have Addison's Disease. The Secondary Adrenal Insufficiency is due to my Adrenal Glands not producing enough ACTH. Needless to say due to my new diagnoses and medication requires I will have to purchase a medical alert bracelet. I also have to attend a class in case I have an Adrenal Crisis. Anytime I feel over worked, extreme stress, vomiting or diarrhea I will need to double up on my Hydrocortisone and hope I don't pass out and end up in the hospital.
Next month I am scheduled another spinal nerve block. I am a bit worried about the back pain afterwards. Hoping it will help my abdominal pain. I am also scheduled a breath test to measure the bacterial growth in my small intestines. Normally there is a huge amount of bacteria in your colon but shouldn't be too much in your small intestines. Bacteria overgrowth symptoms include nausea, bloating, vomiting, diarrhea, malnutrition, weight loss and malabsorption. All of these would confirm my symptoms.
I can't help but wonder how my health will be in the future. It saddens me that I can not do as much as I use to. I can't handle much physical stress anymore. The things I used to enjoy may be a thing of the past. Only time will tell.
Next month I am scheduled another spinal nerve block. I am a bit worried about the back pain afterwards. Hoping it will help my abdominal pain. I am also scheduled a breath test to measure the bacterial growth in my small intestines. Normally there is a huge amount of bacteria in your colon but shouldn't be too much in your small intestines. Bacteria overgrowth symptoms include nausea, bloating, vomiting, diarrhea, malnutrition, weight loss and malabsorption. All of these would confirm my symptoms.
I can't help but wonder how my health will be in the future. It saddens me that I can not do as much as I use to. I can't handle much physical stress anymore. The things I used to enjoy may be a thing of the past. Only time will tell.
Wednesday, September 4, 2013
Today I had my follow up visit with my new gastrologist to discuss recent test results, symptoms and what to do next. About a month ago I had an electrogastrogram, endoscopy and colonoscopy. The results on the electrogastrogram indicated that I could only consume 250cc of water before feeling full. The average individual could consume around 650cc. Therefore, when I consume food or liquid my stomach does not expand. However, my stomach rhythm is completely normal. No need for a stomach stimulator!! Woohoo! Results for my endoscopy showed erosion in my stomach, which doesn't surprise me due to my acid reflux and discomfort. Colonoscopy came back normal. No narrowing as predicted with previous CT scan. Thank goodness!!!!
We discussed my symptoms to try to figure out what the next steps would be. I lost another 3 pounds from last month. I am now 115 lbs. I knew I had lost a few pounds when I noticed my fairly new clothes being a little loose. I'm tired of loosing weight. That's something you don't hear a female say often. My doctor prescribed me an acid reducer and suggested I use citracal. He mentioned it might take several months of constant consumption before I get regulated.
Since a colonoscopy procedure doesn't reach the small intestines, he is recommending me to have a small intestinal bacterial test. Basically its a test that involves drinking sugar water and blowing into a tube periodically for 2 hours to determine if there is a bacterial overgrowth. He indicated the symptoms for a small intestinal bacteria would cause extreme bloating, discomfort, nausea and malnutrition. With that said it just means yet another trip out of state in the near future. I am extremely thankful that my new doctor isn't just giving up on me like my previous gastrologist did. He is looking at every little detail to make sure we are not overlooking anything.
Almost a month ago I saw a pain specialist due an area in my abdominal area progressively worsening over a period of time. I am thinking its more of a pinched nerve around scar tissue from when I had my gallbladder surgery back in 2010. The pain specialist gave me 6 shots of steroids in my abdominal area. It didn't help at all. As a matter of fact, after having steroids shots, I was in extreme pain for 2 days. Tomorrow I am seeing the pain specialist again for a procedure called a nerve block. Basically its a procedure where he will insert two needles on each side of my spine, he will try to localize my pain and determine the cause. He indicated it should also reduce my pain and nausea. I know I will be sedated but I am still concerned on how things will go and results. We shall see. I am leaving it to our Lord, guiding me in every way. Until then I will let everyone know on the nerve block results soon.
I would personally thank you all who reads my blog. I do hope it will help you gain knowledge and understanding. At this time I am requesting some prayers and hope good and positive results. ;-)
We discussed my symptoms to try to figure out what the next steps would be. I lost another 3 pounds from last month. I am now 115 lbs. I knew I had lost a few pounds when I noticed my fairly new clothes being a little loose. I'm tired of loosing weight. That's something you don't hear a female say often. My doctor prescribed me an acid reducer and suggested I use citracal. He mentioned it might take several months of constant consumption before I get regulated.
Since a colonoscopy procedure doesn't reach the small intestines, he is recommending me to have a small intestinal bacterial test. Basically its a test that involves drinking sugar water and blowing into a tube periodically for 2 hours to determine if there is a bacterial overgrowth. He indicated the symptoms for a small intestinal bacteria would cause extreme bloating, discomfort, nausea and malnutrition. With that said it just means yet another trip out of state in the near future. I am extremely thankful that my new doctor isn't just giving up on me like my previous gastrologist did. He is looking at every little detail to make sure we are not overlooking anything.
Almost a month ago I saw a pain specialist due an area in my abdominal area progressively worsening over a period of time. I am thinking its more of a pinched nerve around scar tissue from when I had my gallbladder surgery back in 2010. The pain specialist gave me 6 shots of steroids in my abdominal area. It didn't help at all. As a matter of fact, after having steroids shots, I was in extreme pain for 2 days. Tomorrow I am seeing the pain specialist again for a procedure called a nerve block. Basically its a procedure where he will insert two needles on each side of my spine, he will try to localize my pain and determine the cause. He indicated it should also reduce my pain and nausea. I know I will be sedated but I am still concerned on how things will go and results. We shall see. I am leaving it to our Lord, guiding me in every way. Until then I will let everyone know on the nerve block results soon.
I would personally thank you all who reads my blog. I do hope it will help you gain knowledge and understanding. At this time I am requesting some prayers and hope good and positive results. ;-)
Thursday, July 25, 2013
Test results are in!
It is during our darkest moments that we must see the light-
Aristotle Onassis
Earlier this week I had to travel to North Carolina to Wake Forest Baptist Hospital for a CT scan with contrast and a four hour gastric emptying test. The CT scan consist of an oral contrast as well as an IV contrast. The prep and test only took a couple of hours. When you get a phone call from your doctor herself the next day you know something is up. The CT findings showed numerous filling defects and fecal material throughout my colon. I have at least two areas of narrowing in my transverse colon which is most likely due to peristalsis. Lack of peristalsis is basically lack of movement/contracts in my transverse colon. Sometimes a lesion in the colon can have a similar appearance but given the fact that I had a colonoscopy that did not reveal a mass in January of 2012, my doctor believes this was peristalsis on the CT imagine and not mass. Due to the CT imaging they are requesting for me to have another colonoscopy soon. So my question is why do I have narrowing parts in my transverse colon? What the cause and will it progressively get worse? What are the treatments? Is it something that I need to be overly concerned about? I know when my last colonoscopy was done by my pervious doctor there were areas he couldn't get into. This makes me wonder if I have had this problem all along considering the narrowing areas. However, it would explain the pain I seem to always experience. About a one and a half years ago I had a two hour gastric emptying test done. The results, I had mild gastroparesis with 30% of my food remaining. I recently had a four hour gastric emptying test, results showed mild delay and 12.8 % retained at four hours. Gastric retention percentage at approximate times are as follows:
0 minutes: 100%
30 minutes: 99%
60 minutes: 92.9%
120 minutes: 67.7% (after this image I started experiencing pain in my stomach)
180 minutes: 26.7% (pain might be my stomachs way of showing digestion since the percentage decreased a fairly good amount.)
240 minutes: 12.8%
To sum it up, abnormal 2 and 4 hour gastric retention time. I still have two more tests scheduled in August, Electrogastrogram and an Endoscopic. In my opinion, I am going to keep pushing on. I've got to keep reaching out for help and get better. I crave to be healthy again. I crave to be more physically active and not loose out on family activities because I am so fatigue. I refuse to give up. So with my darkest moments with all the negatives from my health, I have to stay positive and see the light. The lord is my light and my salvation.
Tuesday, July 9, 2013
What you reap is what you sow.
If you weep due to the difficulties , you will dwell on pain, suffering and sorrow. If you desire peace, our Lord will give you the peace you need. Understanding why things happen, why some suffer from diseases, the answer will not come to you as if your having a conversation across the table. Understanding comes to you over time when our Lord sees fit. When I was diagnosed with this disease, my life crumbled. I didn't understand why me but over time I have seen some glimpse of hope and reasoning. I believe ones road must be broken to build a better you, how we should serve our Lord and blessings will come to those who follow. These past couple of months my spirit has been really tested. It has brought pain, suffering and depression. I knew who I was and knew I didn't like the route I was on by dwelling on my pain and sorrow. I really needed to trust in our Lord. For he will decide when you receive blessings.
Since my gastrologist gave up on me, I went and sought help from my family doctor. After our long discussion he highly recommended a second opinion regarding my stomach disease. I was a little hesitant only because I didn't want another doctor to kill my hopes and dreams of getting better or hearing the doctor say again there is nothing more we can do for you. My doctor referred me to Wake Forest Baptist Digestive Health Center in North Carolina. After our 3 hour drive to North Carolina and speaking to my new doctor covering all my symptoms, we became very impressed with the depth that the doctor listened and what she had to say. She believes I have at least two other major conditions going on as well as my gastroparesis worsening. The doctor was extremely surprised that no additional tests had been done by my pervious gastrologist. With just listening to my symptoms and doing a few leg lifts and sitting up trying to localize where my pains are, she indicated I could possibly have problems such as pyloric sphincter, pyloric stenosis, bile duct obstruction, possible pinched nerve due to scar tissue from my gallbladder surgery and my gastroparesis worsening. When the doctor walked out for few minutes, I looked at my boyfriend and started to cry. Bless his heart he was trying to comfort me and said, "This seems very positive Sherry". I smiled at him all teary eyed and said, "I'm not crying because of that, I am crying because I am happy. Happy that someone is helping me." Years of worrying with very little positive results was heart breaking. I was where I needed to be. Our Lord gave me a little glimpse of hope that I needed.
I am scheduled for four tests, two at the end of July and two in August. CT Abdomen Pelvis with infusion. Nuclear Gastric Emptying which will take about 4 hours. This will provide them useful information of if my gastroparesis is worsening. Electrogastrogram, will determine stomach stimulation. Basically its like an electro cardiogram for my stomach. And finally Esophagogastroduodenoscopy aka EGD/Endoscopy. My medications were changed slightly. I was told I needed to slowly stop taking domperidone since it really wasn't helping me anymore. Started taking Bentyl 10 mg 4 times a day, Zofran 8 mg every 8 hours, Carafate 100 mg 4 times a day and Ativan 5 mg every 8 hours. All this on top of my other medication I already take.
My blood results were decent. Blood count, kidney functions and liver functions are all normal. My ferritin level which is my iron transport protein is low. Vitamin B12 is also low but will receive a vitamin B12 injection on my next visit. My TSH, thyroid stimulating hormone is also completely off. Which for me is nothing new considering I have Hashimoto Thyroiditis Disease.
On another note, my precancerous cells on my cervix has returned. Due to my body going through extreme changes over the past couple of years, it makes sense that my immune system is weak. I am schedule a procedure this Thursday. Please say a little prayer for me in hopes that the biopsy results are negative.
Even though I am only 39, I can't help but to feel like my body is falling apart. It is extremely difficult going day to day but I have to keep reminding myself that I can do all things through him who strengthens me.
Since my gastrologist gave up on me, I went and sought help from my family doctor. After our long discussion he highly recommended a second opinion regarding my stomach disease. I was a little hesitant only because I didn't want another doctor to kill my hopes and dreams of getting better or hearing the doctor say again there is nothing more we can do for you. My doctor referred me to Wake Forest Baptist Digestive Health Center in North Carolina. After our 3 hour drive to North Carolina and speaking to my new doctor covering all my symptoms, we became very impressed with the depth that the doctor listened and what she had to say. She believes I have at least two other major conditions going on as well as my gastroparesis worsening. The doctor was extremely surprised that no additional tests had been done by my pervious gastrologist. With just listening to my symptoms and doing a few leg lifts and sitting up trying to localize where my pains are, she indicated I could possibly have problems such as pyloric sphincter, pyloric stenosis, bile duct obstruction, possible pinched nerve due to scar tissue from my gallbladder surgery and my gastroparesis worsening. When the doctor walked out for few minutes, I looked at my boyfriend and started to cry. Bless his heart he was trying to comfort me and said, "This seems very positive Sherry". I smiled at him all teary eyed and said, "I'm not crying because of that, I am crying because I am happy. Happy that someone is helping me." Years of worrying with very little positive results was heart breaking. I was where I needed to be. Our Lord gave me a little glimpse of hope that I needed.
I am scheduled for four tests, two at the end of July and two in August. CT Abdomen Pelvis with infusion. Nuclear Gastric Emptying which will take about 4 hours. This will provide them useful information of if my gastroparesis is worsening. Electrogastrogram, will determine stomach stimulation. Basically its like an electro cardiogram for my stomach. And finally Esophagogastroduodenoscopy aka EGD/Endoscopy. My medications were changed slightly. I was told I needed to slowly stop taking domperidone since it really wasn't helping me anymore. Started taking Bentyl 10 mg 4 times a day, Zofran 8 mg every 8 hours, Carafate 100 mg 4 times a day and Ativan 5 mg every 8 hours. All this on top of my other medication I already take.
My blood results were decent. Blood count, kidney functions and liver functions are all normal. My ferritin level which is my iron transport protein is low. Vitamin B12 is also low but will receive a vitamin B12 injection on my next visit. My TSH, thyroid stimulating hormone is also completely off. Which for me is nothing new considering I have Hashimoto Thyroiditis Disease.
On another note, my precancerous cells on my cervix has returned. Due to my body going through extreme changes over the past couple of years, it makes sense that my immune system is weak. I am schedule a procedure this Thursday. Please say a little prayer for me in hopes that the biopsy results are negative.
Even though I am only 39, I can't help but to feel like my body is falling apart. It is extremely difficult going day to day but I have to keep reminding myself that I can do all things through him who strengthens me.
Sunday, June 2, 2013
I am normally a positive individual. However after my doctors appointment, I stand corrected. I don't see anything positive in my future with Gastroparesis. I never expected a cure. I never expected medications to cover things up completely. I hardly ever get encouraging words from my doctor. Sometimes it makes me wonder if he has the knowledge to help me. Have you ever had questions the next day after doctors appointments? I do and lots of them.
I informed my doctor that my symptoms haven't changed for the better. Even though I have not lost anymore weight, which is a blessing, I am still having many problems. Vomiting have become more violent to the point to where I almost pass out due to lack of oxygen, heart rate increase and dizziness. Nausea no longer is controlled with Zofran. Constipation is not better no matter what I do to try to relieve myself. Enemas only make matters worse for me. According to my doctor when I give myself an enema, my rectal area expands, colon becomes more impacted and it builds up pressure making me vomit violently. My doctor told me to stop using enema treatments and gave me samples of Linzess to help with my IBS and constipation. I have been taken it for a few days now and still haven't had any results. I constantly have pain and bloating.
My doctor told me that it seems like my body has gotten used to the 20 mg of Domperidone. He indicated there are no other medications that he recommends for Gastroparesis. He basically gave me the option to stop taking Domperidone and see how my stomach reacts not having medication or continue using the medication. Which completely concerns me! One of the main concerns with Gastroparesis is having bacterial infection due to overgrowth in undigested food. Wouldn't you think that there is something that the doctor could do to help prevent that from happening? Should I just stop eating all together? Do I continue taking Domperidone ? Is taking Domperidone better than nothing? Do I want to stop taking any medications and take a chance and pray I don't end up in the ER?
He indicated the stomach stimulator was no longer an option. MUSC in Jacksonville Florida no longer does the surgery due to no positive results from pervious patients. Great! What's even more wonderful is having your doctor tell you there is nothing else that he could do to help. I feel like a complete failure. I don't even know my body anymore. I don't see anything positive from any of it. As depression sinks in I ask, what do I do now?
I informed my doctor that my symptoms haven't changed for the better. Even though I have not lost anymore weight, which is a blessing, I am still having many problems. Vomiting have become more violent to the point to where I almost pass out due to lack of oxygen, heart rate increase and dizziness. Nausea no longer is controlled with Zofran. Constipation is not better no matter what I do to try to relieve myself. Enemas only make matters worse for me. According to my doctor when I give myself an enema, my rectal area expands, colon becomes more impacted and it builds up pressure making me vomit violently. My doctor told me to stop using enema treatments and gave me samples of Linzess to help with my IBS and constipation. I have been taken it for a few days now and still haven't had any results. I constantly have pain and bloating.
My doctor told me that it seems like my body has gotten used to the 20 mg of Domperidone. He indicated there are no other medications that he recommends for Gastroparesis. He basically gave me the option to stop taking Domperidone and see how my stomach reacts not having medication or continue using the medication. Which completely concerns me! One of the main concerns with Gastroparesis is having bacterial infection due to overgrowth in undigested food. Wouldn't you think that there is something that the doctor could do to help prevent that from happening? Should I just stop eating all together? Do I continue taking Domperidone ? Is taking Domperidone better than nothing? Do I want to stop taking any medications and take a chance and pray I don't end up in the ER?
He indicated the stomach stimulator was no longer an option. MUSC in Jacksonville Florida no longer does the surgery due to no positive results from pervious patients. Great! What's even more wonderful is having your doctor tell you there is nothing else that he could do to help. I feel like a complete failure. I don't even know my body anymore. I don't see anything positive from any of it. As depression sinks in I ask, what do I do now?
Monday, May 20, 2013
Being chronically ill takes a toll mentally and its extremely difficult to overcome the emotions. Its easy to put a smile on your face when your hiding so much inside. Gastroparesis is horrible to begin with but having the support from others will always be needed. The emotional support goes a long way. When I found out I had Gastroparesis, I had an emotional breakdown. It took me a couple of days before I even told my brothers and sisters that I had a stomach disease with no cure. It took me awhile to face up to my reality. Many individuals who have Gastroparesis become so depressed, some even attempted to take their own life due to the emotional stress this disease causes. Some individuals loose their loved ones, husband/wife/siblings because it causes stress in the relationships, making them to not want to deal with a sick loved one. We know its stressful for everyone who is close to us but turning your back is worst thing to do. We depend on stability since our bodies aren't stabile anymore. I tend to rely so much on my boyfriend. He can read me like a book. Knows when I am hurting even when I don't express it verbally or try to hide the pain from everyone. It still surprises me that he decided to stay with me even after finding out I had Gastroparesis. It shows true love and dedication. I know without him I would be lost. Don't get me wrong I still get depressed and have emotional breakdowns. However, I have made a promise to myself, to never allow this disease to take over my spirit.
I am not sure if I am jumping the gun here but I had a problem the other night while out with my family. I know Domperidone has side effects like all drugs do. Last night my heart wildly palpitated to the point to where I saw black for a second. I haven't contacted my doctor yet. When he finds out I am pretty sure he will want me to stop taking domperidone and take another medication. My doctor only gave me two options, either take a medication that is not FDA approved but has less side effects or take the other that is FDA approved and have more side effects that could make your life harder. Well needless to say I requested the one that isn't FDA approved, mainly because I didn't want more symptoms than what I already had. I really don't like the thought of going under the knife again and having surgery but I will be asking my doctor if I quality for a stomach stimulator since he suggested it our last visit.
Another concern I have is I have missed a couple of months of my menstrual cycle. I don't know if it has to do with my Hashimoto Thyroiditis, precancerous cells have returned, malnutrition. or if there is anything else major going on. I know one thing I have extreme discomfort on a daily basis. Why does it feel like my body is falling apart! I need to make appointments with different doctors to find answers, just finding the time for it all will be a struggle. Until then, I will continue to pray.
I am not sure if I am jumping the gun here but I had a problem the other night while out with my family. I know Domperidone has side effects like all drugs do. Last night my heart wildly palpitated to the point to where I saw black for a second. I haven't contacted my doctor yet. When he finds out I am pretty sure he will want me to stop taking domperidone and take another medication. My doctor only gave me two options, either take a medication that is not FDA approved but has less side effects or take the other that is FDA approved and have more side effects that could make your life harder. Well needless to say I requested the one that isn't FDA approved, mainly because I didn't want more symptoms than what I already had. I really don't like the thought of going under the knife again and having surgery but I will be asking my doctor if I quality for a stomach stimulator since he suggested it our last visit.
Another concern I have is I have missed a couple of months of my menstrual cycle. I don't know if it has to do with my Hashimoto Thyroiditis, precancerous cells have returned, malnutrition. or if there is anything else major going on. I know one thing I have extreme discomfort on a daily basis. Why does it feel like my body is falling apart! I need to make appointments with different doctors to find answers, just finding the time for it all will be a struggle. Until then, I will continue to pray.
Thursday, May 2, 2013
It is only with the heart that one can see rightly; what is essential is invisible to the eye -
Antoine de Saint.
What the future holds is unknown. Times when you are weak and weary can make the end of day seem so far away. Holding onto strength as if there is no tomorrow. Praying for each breath you take not to be your last. As I sit and ponder over every little detail, I wonder how I'm going to be able to live this way. It is my disease that is invisible to the naked eye. One wonders how can she be sick when she doesn't look it. If you knew the worry, frustration, sadness, guilt, pain, discomfort, you would ask yourself, how can I go on.
He who conceals his disease can not expect to be cured - Ethiopian Proverb
I certainly try, there is no doubt. Truth be known there is no cure. Some days are extremely bad, good days are a true blessing. I never take anything for granted. Living another day is a true blessing.
I never really understood why so many Gastroparesis patients went to the ER for problems instead of going to their doctor, until I needed help. It's usually one to two months wait to see a Gastrologist. With Gastroparesis even though its a guessing game, the outcome on how the day turns out could very well be one ending at the ER. Recently I have encountered a new symptom that has me extremely concerned. After receiving advice and internet research, I learned that when I have a strong attack, my body goes into slight shock. I will have extreme vomiting, loose control of my bowels, extreme abdominal pain, dizziness, heart rate will increase and my body will shake tremendously. Its hard on our fragile system to vomit violently. There have been many times I have almost passed out. Most fainting is triggered by the vagus nerve. It connects the digestive system to the brain and it's job is to manage blood flow to the gut. My vagus nerve was damaged which is the reason why I have Gastroparesis. Blood doesn't flow well into my stomach. Therefore when I vomit sometimes my vagus nerve overreacts and causes blood to pull too much from my brain which causes fainting and/or dizzy spells. It has become a weekly event for me to have a strong attack. Usually I just hurt and deal with the regular symptoms. My next doctors appointment isn't until the end of April. I will be requesting for tests to see if I can be approved for a stomach stimulator. Until then I will continue doing what I'm doing, hope for the best and pray I don't pass out.
Thursday, April 11, 2013
This too shall pass... 4 little words. As I stand holding onto the counter top, hoping I
won't embarrass myself in front of others, dizziness comes over me. Swallowing my own saliva over and over again. Pain overwhelming me as I hold back my tears. I know then I could either spend the next 10 minutes or the next 2 hours in the bathroom, vomiting and/or otherwise. My body shakes uncontrollably and all I can do is pray. Pray I get through it and try not to pass out.
I went to my family doctor recently and had blood tests done, mainly to check my protein levels. According to my doctor, levels seem to be okay. Thyroid is out of control again. Medication adjusted. Since then I have been experiencing leg cramps. So agonizing to move, pushing myself to keep going. Life just doesn't stop or slow down even if you want to. So I slap a smile on my face, look into my children's eyes and tell myself, your doing this for them. There is no time for selflessness.
I am struggling on what types of food I should or shouldn't eat. Every day is different. Although I can tell when my stomach feels weird. Tend to cater to my stomach during those days. There have been so many times I can eat half a sandwich and bloat out like I am 5 months pregnant. Since I have been seeing my nutritionist the supplements have really helped.
I recently lost a dear friend, reasons are still unknown. She was such a wonderful person, always carried a smile on her face, wouldn't take anything for granted. I feel a great sadness loosing her. She was so young when she passed away. What makes me wonder is why am I still here. What is my purpose? All I know is as long as I am breathing, I will enjoy every day. Its amazing how life throws you curve balls. It just depends on how you swing your bat.
won't embarrass myself in front of others, dizziness comes over me. Swallowing my own saliva over and over again. Pain overwhelming me as I hold back my tears. I know then I could either spend the next 10 minutes or the next 2 hours in the bathroom, vomiting and/or otherwise. My body shakes uncontrollably and all I can do is pray. Pray I get through it and try not to pass out.
I went to my family doctor recently and had blood tests done, mainly to check my protein levels. According to my doctor, levels seem to be okay. Thyroid is out of control again. Medication adjusted. Since then I have been experiencing leg cramps. So agonizing to move, pushing myself to keep going. Life just doesn't stop or slow down even if you want to. So I slap a smile on my face, look into my children's eyes and tell myself, your doing this for them. There is no time for selflessness.
I am struggling on what types of food I should or shouldn't eat. Every day is different. Although I can tell when my stomach feels weird. Tend to cater to my stomach during those days. There have been so many times I can eat half a sandwich and bloat out like I am 5 months pregnant. Since I have been seeing my nutritionist the supplements have really helped.
I recently lost a dear friend, reasons are still unknown. She was such a wonderful person, always carried a smile on her face, wouldn't take anything for granted. I feel a great sadness loosing her. She was so young when she passed away. What makes me wonder is why am I still here. What is my purpose? All I know is as long as I am breathing, I will enjoy every day. Its amazing how life throws you curve balls. It just depends on how you swing your bat.
Friday, March 22, 2013
Sometimes the simple unintentional words seem to hurt the most. What diet are you on? You don't look sick. I want whatever you've got so I can loose weight. You look great for being sick, it can't be that bad. What's your secret? The list goes on and on. Wanna know my secret? I have Gastroparesis. If I was a selfless person and didn't care about others I would be more than happy to give you my disease so that I wouldn't have to live with this for the rest of my life.
Gastroparesis is not an eating disorder. I am not bulimic or anorexic. I am physically unable to eat more than a 1/2 cup of food at each serving. I try to eat several times a day but every time I eat, I get sick. Vomiting, extreme nausea and pain. You wouldn't think food would cause so much discomfort. I have to avoid foods such as, whole milk products, fibrous foods like steaks, chops, roasts, dried beans etc. Can't have raw or cooked vegetables. It is a real pain trying to figure out what I should or shouldn't eat.
I don't have the stamina like I used to. I am the type of person who doesn't like to ask for help. I have a full time job and still do the things I have to do. However I am weak due to lack of nutrition. I tend to take a lot of breaks when doing physical work, not because I want to but because I need to. Huge difference. My body might be weak but I am a strong individual. I still don't like asking for help but I receive it with open arms.
I have been blessed with a wonderful nutritionist. Thank goodness! I can not express my gratitude enough. Please check a website that is sure to help you as well. www.aliveagainonline.com I am currently taking several things to help me along with my Gastroparesis medication. Trying to build my energy and protein levels.
On another note, I feel as if I have lost several friends because of having this stomach disease. Maybe they felt like they didn't understand so they distance themselves from me. What hurts is finding out that they really were not a friend after all. Just one who were just passing through like an acquaintance. Friends are to be there for one another, who genuinely care. The ones who are true friends are the ones worth keeping. It's time like this that shows ones true colors. If you had a disease would you want to be left alone or be surrounded with love?
Gastroparesis is not an eating disorder. I am not bulimic or anorexic. I am physically unable to eat more than a 1/2 cup of food at each serving. I try to eat several times a day but every time I eat, I get sick. Vomiting, extreme nausea and pain. You wouldn't think food would cause so much discomfort. I have to avoid foods such as, whole milk products, fibrous foods like steaks, chops, roasts, dried beans etc. Can't have raw or cooked vegetables. It is a real pain trying to figure out what I should or shouldn't eat.
I don't have the stamina like I used to. I am the type of person who doesn't like to ask for help. I have a full time job and still do the things I have to do. However I am weak due to lack of nutrition. I tend to take a lot of breaks when doing physical work, not because I want to but because I need to. Huge difference. My body might be weak but I am a strong individual. I still don't like asking for help but I receive it with open arms.
I have been blessed with a wonderful nutritionist. Thank goodness! I can not express my gratitude enough. Please check a website that is sure to help you as well. www.aliveagainonline.com I am currently taking several things to help me along with my Gastroparesis medication. Trying to build my energy and protein levels.
On another note, I feel as if I have lost several friends because of having this stomach disease. Maybe they felt like they didn't understand so they distance themselves from me. What hurts is finding out that they really were not a friend after all. Just one who were just passing through like an acquaintance. Friends are to be there for one another, who genuinely care. The ones who are true friends are the ones worth keeping. It's time like this that shows ones true colors. If you had a disease would you want to be left alone or be surrounded with love?
Thursday, January 24, 2013
This afternoon I realized why I was so nervous this week about my doctors appointment with my Gastrologist. It's the pure fact that reality slaps me in the face each and every time. Reality always sets in when talking one on one with my doctor. Needless to say each time I go I receive bad news. I can truly understand why individuals get depressed with this stomach disease.
For the past year I have been taking a medication called Domperidone 10mg 4 times a day equaling out to 40mg a day. My symptoms have worsened. Now I have to increase my medication to 20mg 4 times a day equaling out to 80mg a day. Somewhat scary considering the medication is not FDA approved.
He also mentioned, if I qualify, he wants to send me to the MAYO Clinic in Jacksonville Florida for a gastro electronic stimulator. Its basically a device to help stimulate my stomach to actually work. It is basically a stomach pacemaker. To be honest with you, that's scares me to no end. I was hoping I wouldn't get to the point where I would have some foreign object attached to me.
I left the doctors office in tears again. Things are slowly getting worse for me but I am determine to continue fighting. I have to! Not only for me but my children and loved ones.
Tomorrow I am seeing a nutritionist for the first time. I am hoping she will help me with my fatigue and nutrition intake. I can only pray for a miracle now.
For the past year I have been taking a medication called Domperidone 10mg 4 times a day equaling out to 40mg a day. My symptoms have worsened. Now I have to increase my medication to 20mg 4 times a day equaling out to 80mg a day. Somewhat scary considering the medication is not FDA approved.
He also mentioned, if I qualify, he wants to send me to the MAYO Clinic in Jacksonville Florida for a gastro electronic stimulator. Its basically a device to help stimulate my stomach to actually work. It is basically a stomach pacemaker. To be honest with you, that's scares me to no end. I was hoping I wouldn't get to the point where I would have some foreign object attached to me.
I left the doctors office in tears again. Things are slowly getting worse for me but I am determine to continue fighting. I have to! Not only for me but my children and loved ones.
Tomorrow I am seeing a nutritionist for the first time. I am hoping she will help me with my fatigue and nutrition intake. I can only pray for a miracle now.
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