I was diagnosed in 2006 (in my 20's) with Crohn's and IBS after two week hospital stay. The GI Consult found lesions on my terminal ileum. I was put on prednisone, then Asacol to calm down my GI tract. I also changed my diet to low FODMAPS, which has helped tremendously with the IBS and the Crohn's.
IBD is genetic in my family--on my maternal side. I take after my mother with an allergy/reactive medicine list a mile long. I have cousins with IBS, UC, and Crohn's. My father has diverticulitis.
My mother has Crohn's, IBS, and Addison's disease. She also started in her 20's with Crohn's issues, like I did. She has had several small bowel re-sections (five, if I remember correctly). Unlike her, I've managed to keep mine under control for about 8 years. I have not been on Asacol for a while due a red dye allergy, prednisone's only administered during flare-ups, which have been few and far between. My GI doctor felt that my IBS was more of an issue than the Crohn's for the past 8-10 years.
My GI doctor (GI A) is the same as my mother's. He essentially saved her life. I have always valued him because he's kept me amazingly under control. Part of that is knowing how my mother's case progressed so that he could take care of the next generation. I eventually became allergic to the Asacol because of the red-dye, and he never put me back on a maintenance medication because of how sensitive my body is. Plus, I was in remission for quite a while.
However GI A abruptly retired, and since then, I have had a slew of problems.
Saw one GI (GI B) a little more local to me. Without any medical records, this doctor proceeds to tell me that I don't look as sick as his patients, therefore I can't have Crohn's. (I was in remission.) I stopped seeing him immediately.
Saw another doctor (GI C) that my mother has been seeing. He seemed alright, not trained at the best medical center. However, he finally found out for certain that I don't have Celiac's as was always suspected (Hooray!). However, I am Non-Celiac's Gluten Intolerant and am supposed to keep to a gluten-free diet anyway per his orders. Not a problem.
However...with no updated Colonoscopy (last one was four years ago) or more accurate tests like a Fecal Calprotectin, GI C decides that I don't have Crohn's. Umm...okay. I hope he's right. I remember how sick my mother was.
Since I saw him, I have had my gallbladder removed due to some serious abdominal pain. The senior GI (D) in his practice was on consult when I ended up in the ER then admitted to the hospital. Told GI D that I was having issues with my Gallbladder, and he proceeded to yell at me for about a half hour. How dare I tell him it's my gallbladder. How do I know it's my gallbladder? Etc, etc, etc. Then he proceeds to order every test possible (Barium swallow, CT scans, Gallbladder test without the function part), and pretty much stops my surgeon in his tracks from taking out my Gallbladder. I'm in the hospital for six days before my surgeon finally orders a Gallbladder Function test. I was right. It was my gallbladder, functioning at 7%. It comes out.
I feel well for about a month and a half. I'm getting used to adjusting my diet again, cutting out fats. During this time, I started getting some mild ulcers in my mouth, but they went away.
Then in December, I wake up in the middle of the night. I'm throwing up, passing out, experiencing the horrendous back pains that I remember from when I was first diagnosed with Crohn's. I have pain in my right abdomen, about two inches off the side of my navel. Every time I have a bowel movement, there is diarrhea and I'm fainting.
We end up in the ER, then admitted to the hospital for observation. I'm in there less than a day. Given Zofran and pain meds. My WBC is way high, but it comes down. Then I'm discharged.
A week later and two days before Christmas, I come home from seeing GI C for a follow-up from the hospital stay. Not ten minutes after I walk through the door, I'm in the bathroom with these severe pains again. Vomitting, diarrhea, passing out. My heart rate is through the roof. My BP is low (hubby has a blood pressure monitor). Another weird thing that is happening is that my arms and legs are turning BRIGHT red just before I pass out.
Hubby gets me out to the car and to the ER. ER doc feels very strongly that I'm having a Crohn's flare-up. While we're in the ER, I start pooping a tremendous amount of bright red blood, running to the bathroom 4 times an hour. I'm given an IV, dillaudin, reglan (which I end up having a reaction to), then Zofran. I get admitted to the hospital. NO ONE IS MONITORING HOW MUCH BLOOD IS COMING OUT OF ME. ER does, however, order a CT scan, which shows enlarged lymph nodes all through my abdomen.
Another GI doctor is on call, who is the second senior doctor at this practice (GI E). The nurses are upset because no one is monitoring this blood that I can produce on command. To make matters worse, the GI tells them to throw out the samples they collect because they're becoming dark red instead of bright. He refuses to do a colonoscopy to find out where the blood is coming from, despite the fact that my WBC is high, my RBC is low, my platlettes are low, and my hemoglobin is low. I get discharged once I stop throwing up.
I'm in pain and weak all over the holiday break (I'm a teacher; Thank goodness for the break).
January 8th, I end up back in the ER again. Same issues, but they don't address them. Instead, because I end up with a migraine in the ER, they decide to call in neurology for that instead addressing my original complaint and admit me to the hospital. I get put on anti-seizure medication and a cocktail of drugs to help me with combatting the nausea. I can't keep any food down for several days, even with marinol given to me this time to stimulate my appetite. I'm made to wear a heart monitor. GI consult either never shows up, or is never contacted. I'm in the hospital five days before I'm discharged...and I'm discharged because my veins end up blowing every time the IV specialist tries to stick me. (Ugh. Have I mentioned I'm needle-phobic?) During this time, my RBC, Hemoglobin, and platlettes are low. WBC is sky-high once again. WBC comes down by the time I'm discharged, but everything else stays the same.
In this time, my husband is getting on my patient portal and is absolutely mortified at some of the notes that he's seeing. The doctors are making me look like the only reason why I'm in there is that I want pain medication. They're not putting down my complicated medical history (LOTS of surgeries in childhood), nor are they addressing the fact that there aren't a lot of options for medicine to give me since I have so many reaction. Furthermore, the GI's are all being buddy-buddy and making comments about agreeing with the Crohn's diagnosis without ANY clear reason why.
A nurse friend of mine gets me into a medical research hospital about 30 mins away two days later because she's concerned that I have a bleed in my gastro-intestinal tract. The GI there is so baffled by my experiences, he's wondering if I'm lying or not telling him something. (Reasonable, I think, given my experience!) However, he orders a colonoscopy for February and a fecal calprotectin to check for inflammation.
I hope everything above is as understandable as possible.
All I can say is...I'm tired. I'm in a lot of pain. I haven't heard once from GI C (the one who un-diagnosed me), and his practice is being real dicks and bullies about getting me my medical records. I can't ask my mother a lot of questions because she's going through a flare-up now, too.
Advice would be appreciated as well as any words of encouragement. None of my friends have ever dealt with me this sick; my husband has never seen me this ill, and he's feeling about as helpless as I am right now.
IBD is genetic in my family--on my maternal side. I take after my mother with an allergy/reactive medicine list a mile long. I have cousins with IBS, UC, and Crohn's. My father has diverticulitis.
My mother has Crohn's, IBS, and Addison's disease. She also started in her 20's with Crohn's issues, like I did. She has had several small bowel re-sections (five, if I remember correctly). Unlike her, I've managed to keep mine under control for about 8 years. I have not been on Asacol for a while due a red dye allergy, prednisone's only administered during flare-ups, which have been few and far between. My GI doctor felt that my IBS was more of an issue than the Crohn's for the past 8-10 years.
My GI doctor (GI A) is the same as my mother's. He essentially saved her life. I have always valued him because he's kept me amazingly under control. Part of that is knowing how my mother's case progressed so that he could take care of the next generation. I eventually became allergic to the Asacol because of the red-dye, and he never put me back on a maintenance medication because of how sensitive my body is. Plus, I was in remission for quite a while.
However GI A abruptly retired, and since then, I have had a slew of problems.
Saw one GI (GI B) a little more local to me. Without any medical records, this doctor proceeds to tell me that I don't look as sick as his patients, therefore I can't have Crohn's. (I was in remission.) I stopped seeing him immediately.
Saw another doctor (GI C) that my mother has been seeing. He seemed alright, not trained at the best medical center. However, he finally found out for certain that I don't have Celiac's as was always suspected (Hooray!). However, I am Non-Celiac's Gluten Intolerant and am supposed to keep to a gluten-free diet anyway per his orders. Not a problem.
However...with no updated Colonoscopy (last one was four years ago) or more accurate tests like a Fecal Calprotectin, GI C decides that I don't have Crohn's. Umm...okay. I hope he's right. I remember how sick my mother was.
Since I saw him, I have had my gallbladder removed due to some serious abdominal pain. The senior GI (D) in his practice was on consult when I ended up in the ER then admitted to the hospital. Told GI D that I was having issues with my Gallbladder, and he proceeded to yell at me for about a half hour. How dare I tell him it's my gallbladder. How do I know it's my gallbladder? Etc, etc, etc. Then he proceeds to order every test possible (Barium swallow, CT scans, Gallbladder test without the function part), and pretty much stops my surgeon in his tracks from taking out my Gallbladder. I'm in the hospital for six days before my surgeon finally orders a Gallbladder Function test. I was right. It was my gallbladder, functioning at 7%. It comes out.
I feel well for about a month and a half. I'm getting used to adjusting my diet again, cutting out fats. During this time, I started getting some mild ulcers in my mouth, but they went away.
Then in December, I wake up in the middle of the night. I'm throwing up, passing out, experiencing the horrendous back pains that I remember from when I was first diagnosed with Crohn's. I have pain in my right abdomen, about two inches off the side of my navel. Every time I have a bowel movement, there is diarrhea and I'm fainting.
We end up in the ER, then admitted to the hospital for observation. I'm in there less than a day. Given Zofran and pain meds. My WBC is way high, but it comes down. Then I'm discharged.
A week later and two days before Christmas, I come home from seeing GI C for a follow-up from the hospital stay. Not ten minutes after I walk through the door, I'm in the bathroom with these severe pains again. Vomitting, diarrhea, passing out. My heart rate is through the roof. My BP is low (hubby has a blood pressure monitor). Another weird thing that is happening is that my arms and legs are turning BRIGHT red just before I pass out.
Hubby gets me out to the car and to the ER. ER doc feels very strongly that I'm having a Crohn's flare-up. While we're in the ER, I start pooping a tremendous amount of bright red blood, running to the bathroom 4 times an hour. I'm given an IV, dillaudin, reglan (which I end up having a reaction to), then Zofran. I get admitted to the hospital. NO ONE IS MONITORING HOW MUCH BLOOD IS COMING OUT OF ME. ER does, however, order a CT scan, which shows enlarged lymph nodes all through my abdomen.
Another GI doctor is on call, who is the second senior doctor at this practice (GI E). The nurses are upset because no one is monitoring this blood that I can produce on command. To make matters worse, the GI tells them to throw out the samples they collect because they're becoming dark red instead of bright. He refuses to do a colonoscopy to find out where the blood is coming from, despite the fact that my WBC is high, my RBC is low, my platlettes are low, and my hemoglobin is low. I get discharged once I stop throwing up.
I'm in pain and weak all over the holiday break (I'm a teacher; Thank goodness for the break).
January 8th, I end up back in the ER again. Same issues, but they don't address them. Instead, because I end up with a migraine in the ER, they decide to call in neurology for that instead addressing my original complaint and admit me to the hospital. I get put on anti-seizure medication and a cocktail of drugs to help me with combatting the nausea. I can't keep any food down for several days, even with marinol given to me this time to stimulate my appetite. I'm made to wear a heart monitor. GI consult either never shows up, or is never contacted. I'm in the hospital five days before I'm discharged...and I'm discharged because my veins end up blowing every time the IV specialist tries to stick me. (Ugh. Have I mentioned I'm needle-phobic?) During this time, my RBC, Hemoglobin, and platlettes are low. WBC is sky-high once again. WBC comes down by the time I'm discharged, but everything else stays the same.
In this time, my husband is getting on my patient portal and is absolutely mortified at some of the notes that he's seeing. The doctors are making me look like the only reason why I'm in there is that I want pain medication. They're not putting down my complicated medical history (LOTS of surgeries in childhood), nor are they addressing the fact that there aren't a lot of options for medicine to give me since I have so many reaction. Furthermore, the GI's are all being buddy-buddy and making comments about agreeing with the Crohn's diagnosis without ANY clear reason why.
A nurse friend of mine gets me into a medical research hospital about 30 mins away two days later because she's concerned that I have a bleed in my gastro-intestinal tract. The GI there is so baffled by my experiences, he's wondering if I'm lying or not telling him something. (Reasonable, I think, given my experience!) However, he orders a colonoscopy for February and a fecal calprotectin to check for inflammation.
I hope everything above is as understandable as possible.
All I can say is...I'm tired. I'm in a lot of pain. I haven't heard once from GI C (the one who un-diagnosed me), and his practice is being real dicks and bullies about getting me my medical records. I can't ask my mother a lot of questions because she's going through a flare-up now, too.
Advice would be appreciated as well as any words of encouragement. None of my friends have ever dealt with me this sick; my husband has never seen me this ill, and he's feeling about as helpless as I am right now.
