I never thought I would be writing a blog. Normally I keep a private journal and don't share it with anyone. But on Sept. 7th 2011 I received a letter that changed my life, and I would never be the same again.
As a result my husband Jeremy feels I should write a blog about my journey.
My journey living with Crohn's Disease.
The Above letter is what I received in the mail on the morning of Sept. 7th 2011. It reads as followed...
Dear Ms. MIRANDA CAVERLEY,
Your colon biopsy does confirm crohns disease. The gastric emptying scan shows intial delayed emptying but at the end of 4 hours the emptying was normal. Let's see how you do on the entedcort and lialda, please call with a progress update in 2-3 weeks. If you are not improved, we will need to go to prednisone. Given the initial delay in emptyingon teh GES, and the new diagnosis of crohns, I think it is important to eventually perform an upper endoscopy to ensure nothing else is going on. We can wait a month or so to do so.
Timeline: End of 2007-Present
For 3 1/2 years I have been in and out of the hospital. Test after Test run (but not the right ones) and on all kinds of different medicine to try and help my "symptoms" But finally in May 2011 I got a new family doctor, one that actually cared about me and didn't just toss me off with a quick look at and write me another round of meds that were only temporarily taking care of the symptoms.
My new doctor right away referred me to Dr. Garuda at Ohio Gastroenterology Group at Mount Carmel West Hospital in Columbus Ohio. Dr. Garuda saw me and started ordering every kind of blood test that could be ran, and a gastric emptying scan (I'll explain what that is later)
So I went and had another Gastric Emptying Scan done to see whether or not I really have Gastroperesis. This test is pretty weird. I had had it done 3 years ago by another gastro dr. and it showed I had gastroperesis which means the nerves in my stomach are damaged. But that was all that Gastro dr. did he gave me a prescription of Reglan and this powdered medicine I was to drink and that was all. My new family dr. was NOT impressed with him either so here I am 3 years later and I'm in worse shape than before. And going into have another Gastric Emptying Scan done
Now before the the "GES" (as we will call it) is done, you can not have anything to eat or drink 6 hours prior to the procedure. You arrive 1 hour before your scheduled time to "prep" your prep is a Nucleur Medicine Tech comes out and takes you to this room where they prepare a meal. They fix you scrambled eggs, here's the kicker....the eggs are radioactive! You eat the eggs making sure you don't get any of the eggs on the floor or table and "contaminate" it. After that you are taken to a room where you will either depending on the way the hospital does their GES tests lie you done on an x-ray board with a little bit of padding and you lie there for 2-4 hours while this machine hangs above your belly and scans your stomach to see how fast or slow the radioactive eggs digest. Or the hospital may have you after eating the radioactive eggs they will have you stand in front of a type of x-ray machine and take a picture of your stomach every hour for 4 hrs. I've had both ways done and let me tell you the picture taking every hour is WAY easier.
So after the test is complete you are then given a paper you must carry with you for 3 days. The paper says you have participated in a test where you ate radiation because say if you are going travel on a plane or go through a security point, you will set off the alarms and scare everyone out of their wits....just kidding.
This time around the test came back that there was a delay in the digesting of my food but that after 4 hours all the eggs had digested. So Dr. Garuda did not diagnose me with Gastroperesis.
However, not long after we got the results back from the GES test, all the blood work I'd had done came back.....It was Not good at all.
At 8:30 a.m. At the end of July 2011 I get a call from Dr. Garuda's secretary Brenda. When I saw they were calling that early I knew something was up. This was the phone call every person prays they never get, and it had just came true for me.
I answer the phone and Brenda tells me she has bad news.
She says, "Miranda your blood work came back and your intestines are severely inflamed, it looks like you may have an intestinal disease. Dr. Garuda wants to get you scheduled for a colonoscopy as soon as possible."
She tells me to give her a call tomorrow after talking with my husband and family about it, to schedule the day for the colonoscopy.
It was like a dream, did I really hear her right DISEASE? I look at my husband Jeremy and tell him everything and I break down and start crying. Immediately I call my Mom, and Grandma and tell them the news. After that Jeremy drives me to my Grandma's to stay the day while he goes to his college classes. It was like someone had punched me in stomach as hard as they could and knocked the breath out of me. I was in total shock...DISEASE!
They next day Brenda calls me and we schedule my colonoscopy. The earliest they could get me in was August 31, 2011 and that was 3 weeks away.
So I suffered through until then, but before then I had to be rushed to the hospital with severe abdomen pains, and found out I had a severe Urinery Trac Infection On top of the vomiting, nausea, stomach and intestinal pains from the possible at this point intestinal disease. The hospital puts me on the antibiotic Cipro and a week later I'm prepping for my colonsoscopy.
The night before the colonoscopy I had to drink 64 oz of Gatorade with a 7 day supply of Miralax in it to clean me out. However, with me already sick to my stomach and having pains in my intestines drinking this stuff didn't work out very well.
I was so sick I was only able to drink half of the 64 oz and the rest I threw up. I was so sick and in so much pain I actually passed out on our couch. My husband Jeremy got no sleep that night and by morning neither of us had had any sleep.
The colonoscopy was scheduled for 9 a.m which meant we had to be there at 8 a.m. and we had an hour and a half drive to columbus. So we met my Mom and she drive us to Columbus and at 8a.m. they called me back to prep me.
The nurses could tell I was very sick and right a way started taking my vitals. I was in so much pain my pulse was 100bpm and my blood pressure was 151/90. As soon as they could they got me to the Operating Room and got an IV started, the moment they gave me a shot of Zofran (anti nausea med) my stomach stopped hurting and my nausea went away. But it wasn't until they gave me the Muscle relaxer did I start to feel good. The moment I got the shot I was in heaven and I didn't care about anything because I was in no pain.
The next thing I know I'm waking up and the colonoscopy is over. The nurse comes in to tell me I have to FART! Yes Fart because until I do I can't leave because they filled me with air. Boy you should have heard all the other patients ripping off. It was like a massive Farting party going on in that clinic...I had to laugh!
But even with that funny moment the nurse had a very worried look on her face. I asked her, "is it bad?" She says, "yes." I say, "Is it something that can be cured?" Her eyes look very sad and she says, "No."
After that my Mom and Jeremy come in to sit with me as we wait for Dr. Garuda. It didn't take long and Dr. Garuda comes in and tells us the news
He tells us that he could not even finish the colonoscopy because when he got to the small intestine he had to stop because the small intestine was so inflamed that he could not even get his little scope in it. He says that it looks to be Crohn's Disease but that they won't know for sure until they get the biopsies back in a week or so. But he said that he is starting treatment now so he put me on Entocort (a steroid specifically for Crohn's Disease) and I will be on that until the middle of November 2011 and he also put me on Lialda (it is used to treat Crohn's Disease and Ulcertive Colitis). I am to also start eating a Crohn's Disease style diet and or drink liquids and soup until the inflammation gets under control so I won't be in as much pain. I got my prescription and a bunch of free samples of the medicine so we could start them right a way, and we headed home.
On Sept. 7th 2011 I received the above letter officially diagnosing me with Crohn's Disease. 3 1/2 years of doctors, tests, meds, being fired from jobs and having to quit jobs because of my health, having a nervous break down and being officially disabled, we now have a diagnosis.
Now it is October 10, 2011 and here I am writing my first blog. Why? Honestly I don't know at this point, my husband believes that through my writings, it may help and inspire others. Will it? Only God knows.
This Friday Oct. 14, 2011 I go have an Upper Endoscopy done because not only do I have Crohn's Disease but Dr. Garuda thinks there may be something going on as well in my stomach like ulcers, hernias etc. and he wants to make sure he has checked every end of me out.....literally. I'm not worried about the Endoscopy because I had this done right before I had my gallbladder surgery 4 years ago. What does worry is what they may find.
On top of having this Endoscopy done, I'm also fighting another Urinery Trac Infection. Which we think is actually the old UTI I had back at the end of August but never got over fully, and has back with a vengeance. I was on the antibiotic Macrobid to fight this UTI and after taking my last round of pills and going for another Urine Test to see if the UTI is gone, I know it isn't. I'm still in pain in my abdomen, and around my kidneys and if I don't go to the bathroom right a way when I have pee pee it hurts like H.E double Hockey Sticks! So I'm also waiting for a call from my family Dr. about the pee pee test results and whether I need another round of antibiotics, I'm opinion YES I DO!
This is my life, and it's only been a month and 3 days since my diagnosis and it's still unbelievable and I'm struggling to come to terms with the fact that I have an incurable disease that I will have to live with for the rest of my life! That's a tough pill to swallow and right now I don't want to, but this is my journey and I am sharing it with you.
As a result my husband Jeremy feels I should write a blog about my journey.
My journey living with Crohn's Disease.
The Above letter is what I received in the mail on the morning of Sept. 7th 2011. It reads as followed...
Dear Ms. MIRANDA CAVERLEY,
Your colon biopsy does confirm crohns disease. The gastric emptying scan shows intial delayed emptying but at the end of 4 hours the emptying was normal. Let's see how you do on the entedcort and lialda, please call with a progress update in 2-3 weeks. If you are not improved, we will need to go to prednisone. Given the initial delay in emptyingon teh GES, and the new diagnosis of crohns, I think it is important to eventually perform an upper endoscopy to ensure nothing else is going on. We can wait a month or so to do so.
Timeline: End of 2007-Present
For 3 1/2 years I have been in and out of the hospital. Test after Test run (but not the right ones) and on all kinds of different medicine to try and help my "symptoms" But finally in May 2011 I got a new family doctor, one that actually cared about me and didn't just toss me off with a quick look at and write me another round of meds that were only temporarily taking care of the symptoms.
My new doctor right away referred me to Dr. Garuda at Ohio Gastroenterology Group at Mount Carmel West Hospital in Columbus Ohio. Dr. Garuda saw me and started ordering every kind of blood test that could be ran, and a gastric emptying scan (I'll explain what that is later)
So I went and had another Gastric Emptying Scan done to see whether or not I really have Gastroperesis. This test is pretty weird. I had had it done 3 years ago by another gastro dr. and it showed I had gastroperesis which means the nerves in my stomach are damaged. But that was all that Gastro dr. did he gave me a prescription of Reglan and this powdered medicine I was to drink and that was all. My new family dr. was NOT impressed with him either so here I am 3 years later and I'm in worse shape than before. And going into have another Gastric Emptying Scan done
Now before the the "GES" (as we will call it) is done, you can not have anything to eat or drink 6 hours prior to the procedure. You arrive 1 hour before your scheduled time to "prep" your prep is a Nucleur Medicine Tech comes out and takes you to this room where they prepare a meal. They fix you scrambled eggs, here's the kicker....the eggs are radioactive! You eat the eggs making sure you don't get any of the eggs on the floor or table and "contaminate" it. After that you are taken to a room where you will either depending on the way the hospital does their GES tests lie you done on an x-ray board with a little bit of padding and you lie there for 2-4 hours while this machine hangs above your belly and scans your stomach to see how fast or slow the radioactive eggs digest. Or the hospital may have you after eating the radioactive eggs they will have you stand in front of a type of x-ray machine and take a picture of your stomach every hour for 4 hrs. I've had both ways done and let me tell you the picture taking every hour is WAY easier.
So after the test is complete you are then given a paper you must carry with you for 3 days. The paper says you have participated in a test where you ate radiation because say if you are going travel on a plane or go through a security point, you will set off the alarms and scare everyone out of their wits....just kidding.
This time around the test came back that there was a delay in the digesting of my food but that after 4 hours all the eggs had digested. So Dr. Garuda did not diagnose me with Gastroperesis.
However, not long after we got the results back from the GES test, all the blood work I'd had done came back.....It was Not good at all.
At 8:30 a.m. At the end of July 2011 I get a call from Dr. Garuda's secretary Brenda. When I saw they were calling that early I knew something was up. This was the phone call every person prays they never get, and it had just came true for me.
I answer the phone and Brenda tells me she has bad news.
She says, "Miranda your blood work came back and your intestines are severely inflamed, it looks like you may have an intestinal disease. Dr. Garuda wants to get you scheduled for a colonoscopy as soon as possible."
She tells me to give her a call tomorrow after talking with my husband and family about it, to schedule the day for the colonoscopy.
It was like a dream, did I really hear her right DISEASE? I look at my husband Jeremy and tell him everything and I break down and start crying. Immediately I call my Mom, and Grandma and tell them the news. After that Jeremy drives me to my Grandma's to stay the day while he goes to his college classes. It was like someone had punched me in stomach as hard as they could and knocked the breath out of me. I was in total shock...DISEASE!
They next day Brenda calls me and we schedule my colonoscopy. The earliest they could get me in was August 31, 2011 and that was 3 weeks away.
So I suffered through until then, but before then I had to be rushed to the hospital with severe abdomen pains, and found out I had a severe Urinery Trac Infection On top of the vomiting, nausea, stomach and intestinal pains from the possible at this point intestinal disease. The hospital puts me on the antibiotic Cipro and a week later I'm prepping for my colonsoscopy.
The night before the colonoscopy I had to drink 64 oz of Gatorade with a 7 day supply of Miralax in it to clean me out. However, with me already sick to my stomach and having pains in my intestines drinking this stuff didn't work out very well.
I was so sick I was only able to drink half of the 64 oz and the rest I threw up. I was so sick and in so much pain I actually passed out on our couch. My husband Jeremy got no sleep that night and by morning neither of us had had any sleep.
The colonoscopy was scheduled for 9 a.m which meant we had to be there at 8 a.m. and we had an hour and a half drive to columbus. So we met my Mom and she drive us to Columbus and at 8a.m. they called me back to prep me.
The nurses could tell I was very sick and right a way started taking my vitals. I was in so much pain my pulse was 100bpm and my blood pressure was 151/90. As soon as they could they got me to the Operating Room and got an IV started, the moment they gave me a shot of Zofran (anti nausea med) my stomach stopped hurting and my nausea went away. But it wasn't until they gave me the Muscle relaxer did I start to feel good. The moment I got the shot I was in heaven and I didn't care about anything because I was in no pain.
The next thing I know I'm waking up and the colonoscopy is over. The nurse comes in to tell me I have to FART! Yes Fart because until I do I can't leave because they filled me with air. Boy you should have heard all the other patients ripping off. It was like a massive Farting party going on in that clinic...I had to laugh!
But even with that funny moment the nurse had a very worried look on her face. I asked her, "is it bad?" She says, "yes." I say, "Is it something that can be cured?" Her eyes look very sad and she says, "No."
After that my Mom and Jeremy come in to sit with me as we wait for Dr. Garuda. It didn't take long and Dr. Garuda comes in and tells us the news
He tells us that he could not even finish the colonoscopy because when he got to the small intestine he had to stop because the small intestine was so inflamed that he could not even get his little scope in it. He says that it looks to be Crohn's Disease but that they won't know for sure until they get the biopsies back in a week or so. But he said that he is starting treatment now so he put me on Entocort (a steroid specifically for Crohn's Disease) and I will be on that until the middle of November 2011 and he also put me on Lialda (it is used to treat Crohn's Disease and Ulcertive Colitis). I am to also start eating a Crohn's Disease style diet and or drink liquids and soup until the inflammation gets under control so I won't be in as much pain. I got my prescription and a bunch of free samples of the medicine so we could start them right a way, and we headed home.
On Sept. 7th 2011 I received the above letter officially diagnosing me with Crohn's Disease. 3 1/2 years of doctors, tests, meds, being fired from jobs and having to quit jobs because of my health, having a nervous break down and being officially disabled, we now have a diagnosis.
Now it is October 10, 2011 and here I am writing my first blog. Why? Honestly I don't know at this point, my husband believes that through my writings, it may help and inspire others. Will it? Only God knows.
This Friday Oct. 14, 2011 I go have an Upper Endoscopy done because not only do I have Crohn's Disease but Dr. Garuda thinks there may be something going on as well in my stomach like ulcers, hernias etc. and he wants to make sure he has checked every end of me out.....literally. I'm not worried about the Endoscopy because I had this done right before I had my gallbladder surgery 4 years ago. What does worry is what they may find.
On top of having this Endoscopy done, I'm also fighting another Urinery Trac Infection. Which we think is actually the old UTI I had back at the end of August but never got over fully, and has back with a vengeance. I was on the antibiotic Macrobid to fight this UTI and after taking my last round of pills and going for another Urine Test to see if the UTI is gone, I know it isn't. I'm still in pain in my abdomen, and around my kidneys and if I don't go to the bathroom right a way when I have pee pee it hurts like H.E double Hockey Sticks! So I'm also waiting for a call from my family Dr. about the pee pee test results and whether I need another round of antibiotics, I'm opinion YES I DO!
This is my life, and it's only been a month and 3 days since my diagnosis and it's still unbelievable and I'm struggling to come to terms with the fact that I have an incurable disease that I will have to live with for the rest of my life! That's a tough pill to swallow and right now I don't want to, but this is my journey and I am sharing it with you.
Dear Miranda, I spoke to your husband a few weeks ago about Crohn's Disease, and wished you well! I have had this disease since I was in my 20's, over 40 years! It's been a rough go! Several surgeries and a strangulated bowel at one point, which left me with only 18 inches of my large colon and they took 5 feet of my small colon! I've had 2 bags at a time twice in my life! I have to take meds, every day and take Remacade treatments every 8 weeks! I feel for you! I hope we can keep in touch! Your friend Monica Collins. It's such a tough disease!
ReplyDeleteThank you Monica for sharing your story. This is also my hope for this blog that others who are going through what I am will share their stories and comment on here.
ReplyDeleteYour story is one that I'm glad you shared because people have no idea how bad it was to have this disease years ago like you did. There weren't alot of medicines out there and like you shared had to have surgery and some of you colon removed, that's the way they treated Crohn's back in the day. You truly are a survivor and I thank God you are still here to share and inspire, even me.