Wow! Time for a post. So the Prometheus test showed I definitely had a reaction to Remicade. I had built up autoantibodies. This is what caused so many of my symptoms. Especially the rash and the migrating joint pain and swelling.
The doctor still wanted my gallbladder removed because of the low ejection fraction and the possibility of causing future problems. The surgeon removed it 3 days ago and performed another liver biopsy and a hernia repair. I am doing very well. Everything went smoothly and I'm healing up nicely.
I don't have any joint pain at this point so I hope my system has fought off the remicade and I am on the mend. I feel pretty good and I hope to heal up from this surgery quickly and start getting strong again. Maybe the gallbladder has been a little toxic to my system because I sure feel a lot better overall. Who knows.
Saturday, January 31, 2015
Thursday, January 15, 2015
Is This a delayed Remicade Reaction?
Hi again! I am slowly feeling better. We finally have some sunshine today and crisp, clear blue sky. Makes a body feel good.
Recap:
Lately Diagnosed with autoimmune hepatitis, gastritis, and an inflamed gallbladder. Gallbladder removal surgery is tentatively scheduled for January 28. Still waiting for results of the test for antibodies to Remicade. Did not have latest Remicade infusion this week per doctor's orders.
My symptoms have really gotten much better:
•Constant upper abdominal pain is gone
•Headaches are gone
•Stiff muscles much better
•Pain left back under shoulder blade difficult to take deep breath - gone
•Puffy eyes better
•Very bloodshot left outer eye - gone
•Swollen bruised left ankle no injury - all better
•Painful neck gone
•Weakness Lethargy
•Joint pain - much better latest just in hands and hips
•Jaw pain
•Stiff back muscle middle back right of spine (that's been there since before this started)
•Abdominal rash (large red itchy bumps that come and go)
•Different itchy areas on torso only now
•Very weak and tired and seem to require a lot of sleep
•When I wake up in the morning I'm all sweaty
Treatment of symptoms now:
•Bland diet
Honestly I feel like my body has been fighting something since September. Perhaps it's all been a reaction to the Remicade. Hopefully I will find out soon. I'm still not sure about having my gallbladder removed. I will have to talk more to my doctor about it after I find out the results of the Prometheus test. I want to be able to eat regular food again so if it means my gallbladder has to be removed in order to do so then I will follow through with it.
Recap:
Lately Diagnosed with autoimmune hepatitis, gastritis, and an inflamed gallbladder. Gallbladder removal surgery is tentatively scheduled for January 28. Still waiting for results of the test for antibodies to Remicade. Did not have latest Remicade infusion this week per doctor's orders.
My symptoms have really gotten much better:
•Constant upper abdominal pain is gone
•Headaches are gone
•Stiff muscles much better
•Pain left back under shoulder blade difficult to take deep breath - gone
•Puffy eyes better
•Very bloodshot left outer eye - gone
•Swollen bruised left ankle no injury - all better
•Painful neck gone
•Weakness Lethargy
•Joint pain - much better latest just in hands and hips
•Jaw pain
•Stiff back muscle middle back right of spine (that's been there since before this started)
•Abdominal rash (large red itchy bumps that come and go)
•Different itchy areas on torso only now
•Very weak and tired and seem to require a lot of sleep
•When I wake up in the morning I'm all sweaty
Treatment of symptoms now:
•Bland diet
Honestly I feel like my body has been fighting something since September. Perhaps it's all been a reaction to the Remicade. Hopefully I will find out soon. I'm still not sure about having my gallbladder removed. I will have to talk more to my doctor about it after I find out the results of the Prometheus test. I want to be able to eat regular food again so if it means my gallbladder has to be removed in order to do so then I will follow through with it.
Wednesday, January 7, 2015
Stop All Meds
Quick update... Went to surgeon she checked me out and explained the whys and hows of gallbladder surgery and got it scheduled.
Went to Gastro. She was concerned about joint pain and inflammation. Suspects Remicade reaction. Sent me to lab for blood work. Postponed surgery. Postponed remicade infusion. Stops all Meds.
Supposed to get mobile phlebotomist to come to house Friday for Prometheus IFX ASSAY. I was hobbling all over the hospital lol. BP 87/63.
Went to Gastro. She was concerned about joint pain and inflammation. Suspects Remicade reaction. Sent me to lab for blood work. Postponed surgery. Postponed remicade infusion. Stops all Meds.
Supposed to get mobile phlebotomist to come to house Friday for Prometheus IFX ASSAY. I was hobbling all over the hospital lol. BP 87/63.
Wednesday, December 31, 2014
Gallbladder Removal Coming Up
Hi! I'm back from my trip. I had to take it really easy on the cruise, eating a bland diet and spending time at the spa trying to get myself feeling better. I've been in quite a lot of pain especially after I eat. Therefore I've lost about 5 pounds and even threw up in a plant by the elevators on the ship. It was all water so maybe it was good for the plant!
So with all the test results I've had they've discovered that on top of my Crohn's, I have autoimmune hepatitis, gastritis, and an inflamed gallbladder. I have an appointment with a general surgeon next week for a consultation on the gallbladder removal surgery.
I certainly don't understand why all this has happened. I know that back in September I didn't feel well for about a month and I blogged about it. Maybe that was the beginning of these new problems. I don't know if my Crohn's is the cause of all these other organs having problems. I'm quite suspicious that it may be the iron infusions that started this cycle of organ destruction. I also wonder if it's perhaps the Remicade itself.
My symptoms are as follows:
Constant upper abdominal discomfort that turns into waves of severe pain after eating
Weakness
Lethargy
Headaches constantly
Joint pain - elbows, knuckles, finger joints, ankles, knees, feet, hips (worse in evening also different places daily)
Painful neck
Jaw pain
Stiff muscles
Stiff back muscle middle back right of spine (that's been there since before this started)
Pain left back under shoulder blade difficult to take deep breath
Puffy eyes
Abdominal rash (large red itchy bumps that come and go)
Very bloodshot left outer eye
Different itchy areas on upper legs bruise if scratched
Swollen bruised left ankle no injury
Treatment of symptoms so far:
Nexium 40 mg 2/dy
Carafate 2/dy
Norco as needed (every day)
Bland diet
I am suspicious that the Nexium is causing all the joint pains and muscle stiffness so I am going to discontinue taking that. The joint pain is so bad in the evening that I have to get my husband to open a bottle of water for me and help me with getting into bed and turning off the light switch on my lamp. I feel like I'm 95 years old at that point!
If anyone has had similar problems, symptoms please share with me. Knowledge is power.
So with all the test results I've had they've discovered that on top of my Crohn's, I have autoimmune hepatitis, gastritis, and an inflamed gallbladder. I have an appointment with a general surgeon next week for a consultation on the gallbladder removal surgery.
I certainly don't understand why all this has happened. I know that back in September I didn't feel well for about a month and I blogged about it. Maybe that was the beginning of these new problems. I don't know if my Crohn's is the cause of all these other organs having problems. I'm quite suspicious that it may be the iron infusions that started this cycle of organ destruction. I also wonder if it's perhaps the Remicade itself.
My symptoms are as follows:
Constant upper abdominal discomfort that turns into waves of severe pain after eating
Weakness
Lethargy
Headaches constantly
Joint pain - elbows, knuckles, finger joints, ankles, knees, feet, hips (worse in evening also different places daily)
Painful neck
Jaw pain
Stiff muscles
Stiff back muscle middle back right of spine (that's been there since before this started)
Pain left back under shoulder blade difficult to take deep breath
Puffy eyes
Abdominal rash (large red itchy bumps that come and go)
Very bloodshot left outer eye
Different itchy areas on upper legs bruise if scratched
Swollen bruised left ankle no injury
Treatment of symptoms so far:
Nexium 40 mg 2/dy
Carafate 2/dy
Norco as needed (every day)
Bland diet
I am suspicious that the Nexium is causing all the joint pains and muscle stiffness so I am going to discontinue taking that. The joint pain is so bad in the evening that I have to get my husband to open a bottle of water for me and help me with getting into bed and turning off the light switch on my lamp. I feel like I'm 95 years old at that point!
If anyone has had similar problems, symptoms please share with me. Knowledge is power.
Wednesday, December 17, 2014
Crohn's Liver Stomach Problems and Autoimmune Hepatitis
 |
| Got to go to a Cowboys Game! |
I had an endoscopy yesterday and it showed inflamation in my stomach and duodenum. This explains the severe stomach pain I've had since before Thanksgiving.
I had a HIDA Scan this morning and will find out the results later. I am RADIOACTIVE! :-) for a day anyway.
Migraines also started back up in the last week. I've had three. So basically I've been a GIANT MESS.
Leaving for a Christmas Cruise tomorrow and hopefully I've got all the medications I need to get me through this one. I feel like I've been living at the hospital for the last week and will be glad to get away from all the procedures and have some much needed rest.
 |
| All Packed LOL |
Thursday, October 30, 2014
Cruising with Crohns Again
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| Cruising Again |
Been feeling really good. Crohn's symptoms are under control and I haven't had a migraine since October 12. Latest infusion was last Thursday. They did solumedrol with the infusion again. Only side effect so far is a few hives on my abdomen and insomnia the first few nights. Had one heck of a time getting the infusion. The infusion nurse has been out sick so it took a bunch of phone calls to get me rescheduled. If I hadn't stayed on top of it I'm sure they would have lost me in the shuffle.
Doc said fatty liver could be from high cholesterol so they're gonna check that. Will post more info soon.
Friday, October 10, 2014
Less Fatigue Lately
Okay I'm doing better now. Slowly day by day I seem to get a little stronger. The lab tests came back a couple of days ago. The results show elevated liver enzymes and the sonogram indicates a fatty liver. I'm skinny and I don't drink so I don't know why I would have a fatty liver all of the sudden. I'm pretty sure it's from the Remicade.
Dr. appointment is scheduled for a couple of weeks from now and I will have lots of questions at that time. She told me over the phone that there is no need to discontinue the Remicade infusions and she doesn't know why I'm having the other symptoms. Will continue to keep you posted. Happy Friday!
Dr. appointment is scheduled for a couple of weeks from now and I will have lots of questions at that time. She told me over the phone that there is no need to discontinue the Remicade infusions and she doesn't know why I'm having the other symptoms. Will continue to keep you posted. Happy Friday!
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