Hi, I have been visiting and reading posts on this website for about a year now. I thought I would finally join and share my story with everyone.
I'll share my story although it is pretty much an identical copy of most everybody elses story...lol. This is an awful, awful disease. RA tuns in my family. I am the lucky one that got Crohn's.
I was undiagnosed for over 7 years suffering from diarrhea, cramping, and joint pain. About the only thing I took was immodium and NSIADS (which made it worse, but I didn't know that)
I was diagnosed with Crohn's Disease of the terminal ileum in May 2010. I started on Entocort for 5 months followed by a 8-day taper of prednisone. I felt great for about 5 weeks and started having minor diarrhea and cramping around the holidays last year.
The GI doctor prescribed Entocort again which did not help the second time. A capsule endoscopy in January 2011 still showed inflammation even after being on Entocort for over a month.
The symptoms worsened. Between mid December 2010 and February 2011, I lost nearly 30 pounds and was in horrible intestinal pain. To date, this was my worst flare.
I began Remicade in late February. It worked extremely well but seemed to only last about 3-4 weeks before wearing off. After the loading doses, the doctor decreased the interval to 5 weeks. By this past summer, the Remicade seemed to only work about 2 weeks. Between February and June, i did gain 40 pounds which was a good sign I guess.
I asked about switching to Humira in July, was approved through the insurance, and then my doctor agreed to increase the dose to 10 mg/kg. I haven't had an infusion since early June and I'm feel a flare coming. I'm scared to stick anything in my mouth, including water.
Next week is my next infusion at 10 mg/kg. I really hope this works. When the Remicade is working, I can eat almost anything without worrying about running to the bathroom.
Other symptoms:
I have joint swelling and stiffness that results in limited motion and pain. Mainly in my ankles right now, but my knees and hips have hurt really bad in the past.
I find it strange that other people in this forum tallks about sores in their nose. I have sores in my nose as well that bleed real bad for about a week or two and then dissappear and reapeats every couple weeks since my last Remicade infusion. I noticed getting the sores about two years before starting any medicine for Crohn's. I have never read anywhere online that nose sores are a symptom of Crohn's Disease.
I have inflammation in the cartilage between my ribs and around the sternum of my chest. I have been to the emergency room over this before and diagnosed by two different doctors at different times. Of course, I was prescribed NSAIDS that made my intestinal problems worse. It usually strikes in the humid summer months.
Possibly the worst symptom is cramping and feeling that I always have to have a bowel movement. This adds a lot of anxiety in that I'm always scared to be too far away from a bathroom. Usually strikes in the car and I usually always have to stop every 10-15 minutes just for good measure. I can't go to a department store and not use a bathroom at least once. My wife used to get upset over this but since I've been diagnosed, she is starting to understand.
My doctor has recenetly prescribed Bentyl (80 mg/day) for the cramping, I was on it for about two months and it really didn't help at all. After that, he prescribed Pamine (20 mg/day). This dries out my nose, throat, and eyes real bad, and turns my intestines to concrete...lol. It actually made the cramping worse. I think I'm going to ask about amytriptaline (sp?) next week.
I have never really noticed blood in my stool or dark black tarry stools, although my recent blood tests showed my red bloood cell count within the acceptable range but extremtly low within that range. I don't know if that is borderline anemia or not...or if I should do anythng about it. I'm going to ask the doctor about it next week.
I enjoy this forum a lot. You learn more about this disease by reading how it affects other people rather than reading the same symptoms from a book or a website, which are usually the same thing copied over and over.
I see a lot of people bouncing ideas off one another and learning from what their doctor has told them. I think it is great.
Nice to meet everyone,
Fayne
I'll share my story although it is pretty much an identical copy of most everybody elses story...lol. This is an awful, awful disease. RA tuns in my family. I am the lucky one that got Crohn's.
I was undiagnosed for over 7 years suffering from diarrhea, cramping, and joint pain. About the only thing I took was immodium and NSIADS (which made it worse, but I didn't know that)
I was diagnosed with Crohn's Disease of the terminal ileum in May 2010. I started on Entocort for 5 months followed by a 8-day taper of prednisone. I felt great for about 5 weeks and started having minor diarrhea and cramping around the holidays last year.
The GI doctor prescribed Entocort again which did not help the second time. A capsule endoscopy in January 2011 still showed inflammation even after being on Entocort for over a month.
The symptoms worsened. Between mid December 2010 and February 2011, I lost nearly 30 pounds and was in horrible intestinal pain. To date, this was my worst flare.
I began Remicade in late February. It worked extremely well but seemed to only last about 3-4 weeks before wearing off. After the loading doses, the doctor decreased the interval to 5 weeks. By this past summer, the Remicade seemed to only work about 2 weeks. Between February and June, i did gain 40 pounds which was a good sign I guess.
I asked about switching to Humira in July, was approved through the insurance, and then my doctor agreed to increase the dose to 10 mg/kg. I haven't had an infusion since early June and I'm feel a flare coming. I'm scared to stick anything in my mouth, including water.
Next week is my next infusion at 10 mg/kg. I really hope this works. When the Remicade is working, I can eat almost anything without worrying about running to the bathroom.
Other symptoms:
I have joint swelling and stiffness that results in limited motion and pain. Mainly in my ankles right now, but my knees and hips have hurt really bad in the past.
I find it strange that other people in this forum tallks about sores in their nose. I have sores in my nose as well that bleed real bad for about a week or two and then dissappear and reapeats every couple weeks since my last Remicade infusion. I noticed getting the sores about two years before starting any medicine for Crohn's. I have never read anywhere online that nose sores are a symptom of Crohn's Disease.
I have inflammation in the cartilage between my ribs and around the sternum of my chest. I have been to the emergency room over this before and diagnosed by two different doctors at different times. Of course, I was prescribed NSAIDS that made my intestinal problems worse. It usually strikes in the humid summer months.
Possibly the worst symptom is cramping and feeling that I always have to have a bowel movement. This adds a lot of anxiety in that I'm always scared to be too far away from a bathroom. Usually strikes in the car and I usually always have to stop every 10-15 minutes just for good measure. I can't go to a department store and not use a bathroom at least once. My wife used to get upset over this but since I've been diagnosed, she is starting to understand.
My doctor has recenetly prescribed Bentyl (80 mg/day) for the cramping, I was on it for about two months and it really didn't help at all. After that, he prescribed Pamine (20 mg/day). This dries out my nose, throat, and eyes real bad, and turns my intestines to concrete...lol. It actually made the cramping worse. I think I'm going to ask about amytriptaline (sp?) next week.
I have never really noticed blood in my stool or dark black tarry stools, although my recent blood tests showed my red bloood cell count within the acceptable range but extremtly low within that range. I don't know if that is borderline anemia or not...or if I should do anythng about it. I'm going to ask the doctor about it next week.
I enjoy this forum a lot. You learn more about this disease by reading how it affects other people rather than reading the same symptoms from a book or a website, which are usually the same thing copied over and over.
I see a lot of people bouncing ideas off one another and learning from what their doctor has told them. I think it is great.
Nice to meet everyone,
Fayne
