Hello, my name is Jenny (hence the "jen" part of my name). The AI does not stand for artificial intelligence however! :lol: AI = Autoimmune. I've been diagnosed with 3.5 autoimmune disorders since January of this year. The 1/2 is fibromyalgia, which isn't technically considered an autoimmune disorder. I work as an administrative assistant in my (relatively small city) city's police department and I LOVE my job! All the AI stuff makes it a bit difficult to get there in the morning, but I have been successful so far. I also really enjoy scrapbooking, making cards, and making other things with paper...........when I have the extra energy at the end of the day to do so that is.......
OK, enough with the irrelavant details. Onto my new problems.
I can relate to member ANHammons in that I really don't seem to have the same symptoms that I've read about on online sites. I'm not in the bathroom 10 times a day with severe diarrhea - I'm mostly constipated actually, but that's been my whole life so far. A few weeks ago I started to have, what I call, diarrhea, but it was only once and a few times twice a day. Basically, I was probably "normal", or what other people feel is normal. Then I ended up with a fissure (or at least I think that's what it was). Ok, no problem, I've had that before and I do have hemorrhoids (thanks to my dear son's birth!), so I thought nothing of it. I did see blood on my stools, but again figured it was just the fissure or a hemorrhoidal problem. Then it started to hurt. HOOOIE! Now this is from a person who has had HUGE bm's since I can remember. HUGE. And dry and difficult to pass. Now I'm having much softer and smaller ones, but they are still difficult to pass for some reason........and it HURTS! I found myself approaching a bm like I approached labor -- you push it out/down a little bit and then let it sit there so your insides can stretch a bit before you go on and therefore, produce a bit less pain. So now the stools are covered in blood and I'm thinking to myself, OK, this isnt' from the fissure on the outside, this must be from inside somewhere.
Rewind back 9 years ago after the birth of my son. After I gave birth to him, I was never the same. Well, no mother is really, but I was really out of it. I chalked it up to postpartum depression since I was living so far away from any family for the first time and now I had a baby to figure out. So after a very dramatic pleading with my hubby to please take me "home", we moved back up to Wisconsin about 20 minutes from my parents. So now I'm a bit happier, but still exhausted (babies are exhausting, so I dont' pay much attention to that), and now I have cramping in my legs all the time -- can't seem to lose weight either. I finally go in to the dr. for.....I think it was my pap actually.....and tell the dr. about all my symptoms. He feels my neck and I'm thinking, "what do cramps in my legs have to do with my neck?". Off for a blood test and I find out I have hypothyroidism. That was 9 years ago. 1999. In 2007 I was told it was Hashimoto's and that it was an autoimmune condition when I went to a endocrinologist for elevated calcium and had a parathyroid test done. For many of those years I felt awful all the time and discovered lupus (I don't have lupus though). I had every symptom listed.
Off to my first rheumatology visit in........2003 or 04 I believe. I walk in, talk to him and he says, "boy that sounds like lupus. I bet you have lupus". Blood tests. All negative. rheumy says, "You're tests are negative, I don't know what to do for you". Probably not those exact words, but similar. Another year goes by and I still feel awful. I get sent to him again and he says, "We tested you last year and you were negative, I dont' know what to do, but we'll test you again". Blood tests were negative again, though all this time I have had a positive rheumatoid factor test.
Now for this year (I'm skipping a TON of stuff including surgeries). Sept. 07 I had a hysterectomy and ended up with another infection. I finally had had enough and requested ALL of my medical records. When I got them, I was a bit angry since on many tests I was told everything was fine and I'm reading that NOT everything was fine. Why lie??? I was going crazy and finally my hubby demanded I go to my GP and demand to see a rheumy again. So, I did. He was going to send me to the same guy as before and I said, "No. I want someone brand new that has never seen me before so I can give him the WHOLE picture and not just a piece". Yay me! As a side note (and finally getting to the colon!), one of the tests that I was told was normal was my first colonoscopy that I had to have for abdominal pain that was eventually taken care of with an ERCP. That test said that I had scarring in the terminal ileum with an infiltrate of white cells and plasma cells. My rheumy told me that something autoimmune was going on in there.
After more tests (that were, again, negative) he told me that I have Undifferentiated Connective Tissue Disease. And later psoriasis, which I've apparently had since practically birth. UCTD pretty much mirrors lupus, but without the organ involvement. EXCEPT: I have fluid around my heart, lungs, and abdominal cavity, and "something autoimmune" in my intestines. So much for no organ involvement, but hey - I'm being treated with lupus meds (Plaquinil) so at least someone has finally done something and LISTENED to me! By the way, after being on Plaquinil, the fluid has cleared from my heart and is almost gone around my lungs!!!
It's been 5 years since my last colonoscopy and rheumy is getting anxious about that last result. I had my colonoscopy on Nov 4 and was sent home with Crohn's Disease and Ulcerative Colitis booklets. GI is almost positive it's going to be one of those. Got my biopsy results on Nov 6 (he even put a rush on them) and the nurse said my ilium is negative (for what I'm not exactly sure since scarring just doesn't disappear). There is inflammation in the colon and an area of infection on the descending colon. SSSSSsssooooooo......what does that mean??? I see the GI on Nov 10, so I guess I just have to worry for 2 more days.
So that's my story. Mostly. As I said, I skipped all the surgeries and infections, the continuous year of pneumonia, and many other issues, but I've bored you all more than long enough! My biggest concern is WHY would he send me home with those booklets if he wasn't sure? Is infection a part of one of those diseases??? I am so confused. :confused2: I know I should just forget about it until I see him on Monday, but it's so hard when I already have so much in the way of autoimmune stuff. What's one more I guess, huh?
Oh -- I always have abdominal pain too. Always. It's almost never gone. I've gone to the dr. many times and he just tells me to add fiber and dumb stuff like that. Well, it's probably not dumb, but it is still just another dismissal and I'm tired of being dismissed.:ymad:
I probably left out much of my "pertinant" information.....I apologize. Feel free to ask as I don't even know what is and what isn't pertinant. Are there many of you with other autoimmune stuff?
Thanks for listening to me ramble............
OK, enough with the irrelavant details. Onto my new problems.
I can relate to member ANHammons in that I really don't seem to have the same symptoms that I've read about on online sites. I'm not in the bathroom 10 times a day with severe diarrhea - I'm mostly constipated actually, but that's been my whole life so far. A few weeks ago I started to have, what I call, diarrhea, but it was only once and a few times twice a day. Basically, I was probably "normal", or what other people feel is normal. Then I ended up with a fissure (or at least I think that's what it was). Ok, no problem, I've had that before and I do have hemorrhoids (thanks to my dear son's birth!), so I thought nothing of it. I did see blood on my stools, but again figured it was just the fissure or a hemorrhoidal problem. Then it started to hurt. HOOOIE! Now this is from a person who has had HUGE bm's since I can remember. HUGE. And dry and difficult to pass. Now I'm having much softer and smaller ones, but they are still difficult to pass for some reason........and it HURTS! I found myself approaching a bm like I approached labor -- you push it out/down a little bit and then let it sit there so your insides can stretch a bit before you go on and therefore, produce a bit less pain. So now the stools are covered in blood and I'm thinking to myself, OK, this isnt' from the fissure on the outside, this must be from inside somewhere.
Rewind back 9 years ago after the birth of my son. After I gave birth to him, I was never the same. Well, no mother is really, but I was really out of it. I chalked it up to postpartum depression since I was living so far away from any family for the first time and now I had a baby to figure out. So after a very dramatic pleading with my hubby to please take me "home", we moved back up to Wisconsin about 20 minutes from my parents. So now I'm a bit happier, but still exhausted (babies are exhausting, so I dont' pay much attention to that), and now I have cramping in my legs all the time -- can't seem to lose weight either. I finally go in to the dr. for.....I think it was my pap actually.....and tell the dr. about all my symptoms. He feels my neck and I'm thinking, "what do cramps in my legs have to do with my neck?". Off for a blood test and I find out I have hypothyroidism. That was 9 years ago. 1999. In 2007 I was told it was Hashimoto's and that it was an autoimmune condition when I went to a endocrinologist for elevated calcium and had a parathyroid test done. For many of those years I felt awful all the time and discovered lupus (I don't have lupus though). I had every symptom listed.
Off to my first rheumatology visit in........2003 or 04 I believe. I walk in, talk to him and he says, "boy that sounds like lupus. I bet you have lupus". Blood tests. All negative. rheumy says, "You're tests are negative, I don't know what to do for you". Probably not those exact words, but similar. Another year goes by and I still feel awful. I get sent to him again and he says, "We tested you last year and you were negative, I dont' know what to do, but we'll test you again". Blood tests were negative again, though all this time I have had a positive rheumatoid factor test.
Now for this year (I'm skipping a TON of stuff including surgeries). Sept. 07 I had a hysterectomy and ended up with another infection. I finally had had enough and requested ALL of my medical records. When I got them, I was a bit angry since on many tests I was told everything was fine and I'm reading that NOT everything was fine. Why lie??? I was going crazy and finally my hubby demanded I go to my GP and demand to see a rheumy again. So, I did. He was going to send me to the same guy as before and I said, "No. I want someone brand new that has never seen me before so I can give him the WHOLE picture and not just a piece". Yay me! As a side note (and finally getting to the colon!), one of the tests that I was told was normal was my first colonoscopy that I had to have for abdominal pain that was eventually taken care of with an ERCP. That test said that I had scarring in the terminal ileum with an infiltrate of white cells and plasma cells. My rheumy told me that something autoimmune was going on in there.
After more tests (that were, again, negative) he told me that I have Undifferentiated Connective Tissue Disease. And later psoriasis, which I've apparently had since practically birth. UCTD pretty much mirrors lupus, but without the organ involvement. EXCEPT: I have fluid around my heart, lungs, and abdominal cavity, and "something autoimmune" in my intestines. So much for no organ involvement, but hey - I'm being treated with lupus meds (Plaquinil) so at least someone has finally done something and LISTENED to me! By the way, after being on Plaquinil, the fluid has cleared from my heart and is almost gone around my lungs!!!
It's been 5 years since my last colonoscopy and rheumy is getting anxious about that last result. I had my colonoscopy on Nov 4 and was sent home with Crohn's Disease and Ulcerative Colitis booklets. GI is almost positive it's going to be one of those. Got my biopsy results on Nov 6 (he even put a rush on them) and the nurse said my ilium is negative (for what I'm not exactly sure since scarring just doesn't disappear). There is inflammation in the colon and an area of infection on the descending colon. SSSSSsssooooooo......what does that mean??? I see the GI on Nov 10, so I guess I just have to worry for 2 more days.
So that's my story. Mostly. As I said, I skipped all the surgeries and infections, the continuous year of pneumonia, and many other issues, but I've bored you all more than long enough! My biggest concern is WHY would he send me home with those booklets if he wasn't sure? Is infection a part of one of those diseases??? I am so confused. :confused2: I know I should just forget about it until I see him on Monday, but it's so hard when I already have so much in the way of autoimmune stuff. What's one more I guess, huh?
Oh -- I always have abdominal pain too. Always. It's almost never gone. I've gone to the dr. many times and he just tells me to add fiber and dumb stuff like that. Well, it's probably not dumb, but it is still just another dismissal and I'm tired of being dismissed.:ymad:
I probably left out much of my "pertinant" information.....I apologize. Feel free to ask as I don't even know what is and what isn't pertinant. Are there many of you with other autoimmune stuff?
Thanks for listening to me ramble............
