Journal Entry for January 9, 2009
January 9, 2009 12:38am
With the recent/upcoming changes in power in our House of Representatives, I suppose we should expect things to fall through the cracks. …
MERF
12:37pm, November 22, 2008
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About Me
MERF
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About Me
Mid-fifties, wife of 36 years to a wonderful man and mother of two men children. I was diagnosed with Crohn's disease in February 2007 but, in retrospect, I believe I have suffered with the disease for most of my life. My objective is to attack this malady positively and lead as normal and drug-free life as possible.
Mid-fifties, wife of 36 years to a wonderful man and mother of two men children. I was diagnosed with Crohn's disease in February 2007 but, in retrospect, I believe I have suffered with the disease for most of my life. My objective is to attack this malady positively and lead as normal and drug-free life as possible.
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Interests
Fishing, camping, outdoor cooking, classical choral music, Megatouch (!) and messing around on my PC! I am retired (thanks only to Remicade and the adverse reactions I had to that drug) and am working to establish more productive activities of every day.
Fishing, camping, outdoor cooking, classical choral music, Megatouch (!) and messing around on my PC!
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Journal
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New House Bill!
November 13, 2008 12:28pm
Are you aware of recently introduced H.R.7078 which has been cited as the "Prevention, Awareness, and Research of Autoimmune Diseases Act …
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This entry is private
This entry is private
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Hugbook
Hug
Hello my friend! I hope all is well with you! I have been thinking of you a lot! Big hugs, Patti
Hug
Hi Ellen! how are ya today? Hopefully we'll be moving soon to Columbia and then maybe you and I can meet..love to you today, jesse
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Hug
hi sweetie! how are ya today? I hope you are fine or something like it. love you today and everyday, stay adorable! jesse
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Celebration
Hope all is well with you! Have a HAPPY NEW YEAR! Big hugs, Patti
Santa
Thanks and hope you are doing well!
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Photos
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Support Groups
Close Crohn's Disease & Ulcerative Colitis
I was diagnosed with Crohn's disease in February 2007 when hospitalized with an active GI bleed. The diagnosis came after years of going to doctors of all specialties in an effort to determine the reason(s) for abnormal laboratory tests as well as why I just constantly felt like crap. In retrospect, and knowing what I do now about IBD, I am convinced that I have had Crohn's disease for most of my life.
Treatments
- Dietary Modification Working / Worked
- Although there are differing schools of thought on the benefits of additional fiber in the diet of a Crohn's patient, I have been adding a fiber supplement to my diet for several weeks. The effect has been positive and although I only take 1/3 the recommended daily dosage, it is another of those things about which I become acutely aware if I do not take it.
- Entocort Somewhat Helpful
- Have been on Entocort since mid-February of this year; will begin the step-down process towards the end of this month in an effort to get off steroids completely. As of July 14, 2008, I'm off Entocort!!
- Prednisone Working / Worked
- Prednisone saved my life after I developed acute hepatitis as a reaction to Remicade. I have been off Prednisone since April 21, 2008.
- Probiotics Working / Worked
- I'm sold on the benefits of Probiotics! They help not only with gut issues but they have warded off yeast/fungal infections when I had to take antibiotics.
- Remicade Working / Worked
- There needs to be another status category here that says "worked but about killed me" or something like that. I felt great for the first four infusions but was unaware of the antibodies that were forming. I ultimately had to stop the Remicade because of acute hepatitis and, ultimately autoimmune hepatitis as confirmed by liver biopsy.
- Positive Thinking Working / Worked
- Like the book title says dont underestimate its power!
Close Diabetes Type 2
Treatments
Open Arthritis
Treatments
- Naproxen Working / Worked
- Not so much ... caused ulcers in my mouth.
- Vioxx Working / Worked
- Worked great for years but then it was taken off the market so I had to stop taking it ... Sigh. Unfortunately due to an allergy to sulfa drugs I could not transition over to Celebrex which seemed to the the most popular option to Vioxx.
- Salsalate Working / Worked
- Currently taking 1000 mg. twice daily. It has been the arthritis medication least irritating to my GI tract which is important to consider in light of my Crohns disease. Is it effective? Honestly I did not realize how effective it is until I had to stop taking it for two weeks prior to a liver biopsy. I knew then how well it had been working because of all the pain I was in without it!!
Open Pemphigus
Hi all. I've just been tentatively diagnosed with Bullous Pemphigoid. I say 'tentatively' since we are awaiting the results of another biopsy done this past Wednesday that will distinguish between Pemphigoid or Porphyria. I've also submitted urine and stool specimens for testing of the porphyria. What a rip! This is so out of the blue and really is sucky since my Crohn's disease is in total remission and I was feeling better than I have in years!
