**GardenerJames....enquiry**

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quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 3/16/2008 7:20 PM (GMT -6)   
Hi James...just enquiring about the lung disorder that you have/had. 
 
What's it called and were you diagnosed with it before UC? 
 
Is it UC-related?
 
Do you still have it?
 
What were your symptoms?
 
Most appreciated for the answers and whatever else you can add.
Hope you have nice weather out WEST!!
 
Heather  scool
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 3/16/2008 8:25 PM (GMT -6)   
Hi Heather,
Can't say there's much to brag about weather-wise here except that it didn't rain today :)
My first auto-immune was called Sarcoidosis, it caused inflammation of the interstitial tissue in my lungs, felt like bad asthma all the time.
I got it about a year and a half before my UC dx. I guess in most cases it runs its course in about a year and goes away, although some people have it move to other organs in their body and it wreaks havoc their whole life. It was treated with prednisone twice, and when I got off the second round of pred. it didn't come back. But UC showed up just a few months later.
I feel like it is gone, but even if not my GI says that the meds I'm on now would probably be keeping it in check anyway.
I have not heard of any correlation between UC and sarcoidosis, but sarcoidosis is quite rare and not researched much, so it's hard to say.
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
12th Remicade infusion End of March


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 3/17/2008 1:53 AM (GMT -6)   
Hi James...thanks for the quick reply. I remember looking it up when you mentioned it to me in chat a few years ago, but couldn't recently remember what it was. I knew it wasn't asthma. But, I thought it was a fibrosis something.
Must put that in my memory bank ;-)
 
How exactly were you diagnosed...meaning what tests did you have to go through (after reading all the testing, just wondering)? 
 
Happy to hear it's not an issue for you any longer.
Heather
 
 
I found this info for anyone reading this thread who might be interested..rather than asking.
 
 


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 3/17/2008 12:57:29 AM (GMT-6)


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 3/17/2008 9:50 AM (GMT -6)   
Every time I hear the word Sarcoidosis I think of the TV show House... I'm pretty sure they just like saying it because it seems like in almost every case when they're trying to figure out what's wrong, they're like "Well what about Sarcoidosis?" :)
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
10mg Lexapro (for depression/social anxiety)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
10meq Potassium
 
 


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 3/17/2008 9:56 AM (GMT -6)   
Diagnosis took a long time. It started while I was on vacation in the middle of nowhere and rushed to the local "hospital" in the middle of the night with a high fever and severe abdominal pain. I had been coughing every afternoon for a while.
They ran a bunch of tests and xrays while I was there, but only came to two conclusions, 1 my blood cells looked "funny" and 2 I needed a better hospital.
I started feeling better while I was there and went back to our cabin.
Went back to town, had more blood tests, then ct scans. they found that I was anemic, and my blood cells were lacking protein. I was having night sweats by now I think. I also pretty constantly had a low grade fever.
I was sent next to a hemotologist/oncologist. She took more blood and eventually decided to do a bone marrow test (not pleasant!) While she was taking the bone marrow she said she was leaning towards lymphoma.
I was losing weight slowly this whole time, I think ended up losing about 15 or 20 of my precious pounds overall.
The result of my bone marrow test was that the bone marrow showed something, but she didn't know what.
I think I forgot to mention that there were bright dots on my lung scans and swollen lymph nodes all over the place in my abdomen.
Finally the dr.s said we needed to get some of those lymph nodes out to see what we were dealing with. I had surgery where they made an inscision in my lower abdomen, yanked out my appendix and then pulled out several feet of my intestines so they could remove lymph nodes attached to them.
I got a call the next day from my surgeon, dr. and hemotologist that it was not lymphoma but something called Sarcoidosis (a diagnosis of exclusion, meaning that if it's nothing else, it's sarcoidosis :P) and that I was going to see a lung dr.
By this time, I was having trouble breathing from about an hour after I got up till I went to sleep at night. I couldn't really do anything because I was so winded, anemic and tired.
Finally I got to the lung dr. who put me on prednisone and I felt much better :)
The whole thing started in about January, and I think I went to the lung Dr. in July or so.
That's pretty much it :)
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
12th Remicade infusion End of March


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 3/17/2008 1:33 PM (GMT -6)   
"pretty much it"....you jest!!

Wow...what an ordeal! Soooooo, pred is good for something! lol!

Thanks for sharing James, most appreciated.

Heather
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


:)
Regular Member


Date Joined Feb 2008
Total Posts : 182
   Posted 3/23/2008 3:38 AM (GMT -6)   
oh my goodness, what an ordeal. I'm winded just from reading the post and thinjing about what you went through! 5 months of feally like that and going undiagnosed?! That's a shame that all those doctors couldn't help you and figure out what was wrong. James, I'm so happy they found a way to treat it.

Thank you for sharing this aspect of somethign UC related.

Hope your feeling good!!
Dx: Dec. 2006 with UC
F, 23, NYC
Thank G-d - Prednisone then 6MP, Rowasa and Asacol brought remission
Now Asacol 4tabs 2x a day.
Muiltivitamin, Iron and Folic Acid supplements

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