Okay...Got my Biopsy back!

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Msterra34
Regular Member


Date Joined Oct 2007
Total Posts : 29
   Posted 11/10/2007 6:45 PM (GMT -7)   
Hi all,
 
Well after all this time- Let me start with this- I went off the asacol myself about 1.5 weeks ago. I have been having a regular bowel movement daily sometimes every 2 days now. As some may remember I had food poison around Sept. 17 which led to my first ever colitis flare. I was deathly sick for about 6 weeks (felt like eternity- and lost 15 lbs down to 105). I had the colonoscopy and my surgeon advised me this week that coming off the asocol was okay since he believed this was caused my the captor (sp?) bacteria. He said that the biopsy didn't say either way if it could be Chrohns or Ulcerative but it did show active colitis at the time!! He thought it wasn't Chrohns nor Ulcerative Colitis-but if it comes back I will have to go another round of antibiotics and start back on the asocol for good. I am praying this never comes back again!! He said he would never start me on steroids because he has seen to many deaths in this region and was against this big time..that was scary! OH and he also said where I went to the emergency room twice..the ER doc (a woman) wrote in the reports that she thought all this was in my mind- that really made my DR mad and I am going to the hospital Monday and talking to someone in charge about this incident and have them amend what she put in my records!!! This is some REAL stuff...and for someone that has never experienced it - well you know! I still stop by and read the posts and I am wishing you all the very best and praying for you guys! Hugs!
Terri
**********************
Terri D.
Asacol 2x4times a day
Toprol XL 25mg a day for rapid HB
l5-S1 disc rupture in 2004
Thyroid nodules and levels swing in and out:(


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 11/10/2007 6:57 PM (GMT -7)   
***... steroids causing death? HUH.


And in your head? thats bs...

I'm so confused. Do you have UC or not?
Had stomach problems whole life.. on and off. Could never figure out what it was or why it was going on. about a year and a half ago I went to the dr cuz I was running to the bathroom and it was ruining my life.. my stomach problems were back and wouldn't go away. He referred me to a GI.

After tons of testing and diff. GIs. I had a colonoscopy and it came back as IBD either Crohns or UC... they couldn't decide. I took a dye test and they ruled it as UC b/c they said Crohns always comes up and it didn't. Finally diagnosed with UC March 07

Initially put on Colazal.. didn't really work. Was never really symptom free.. so I guess a ongoing flare for a 1yr + 1/2? Just got over a HORRIBLE flare up and was put on pred and lialda... Seems to be working.
Medications:Colazal 3 3x a day
10/30/07 Prednisone- 40mg and Lialda- 2 a day both in the morning one time only . Haven't started tapering yet.


wildfire07
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/10/2007 8:42 PM (GMT -7)   
i've had docs & nurses not believe me....that really sucks big time...they really look stupid when the problem is found & I wasn't "faking it" nor was it in my head. Small consolation for being thought of as a "liar" by someone who's suppose to be there to help us
             
 
Diagnosed with UC Aug. 2007
Diagnosed with Degenerative Arthritis, 2006
2 asacol 3x daily  for UC.  Canasa suppositories, also 3x daily, as needed.
1 depacote 3x daily for bipolar disorder
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 11/10/2007 9:00 PM (GMT -7)   
Hi Terry, so sorry you have to deal w/this crap! For my UC I was told it was from eating Wow chips that contained Olestra and that my edema which was kidney disease was from wearing high heeled shoes..........just b/c they are dr's does not mean that some of them are not as stupid as the rest of the world, hope you can find someone to take really good care of you and listen.
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 150mg 1xday nightly;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 2xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


quincy
Elite Member


Date Joined May 2003
Total Posts : 29840
   Posted 11/10/2007 11:58 PM (GMT -7)   
Hi Terri...interesting to say the least of what the doc reported back to you about the ER doc. Do you have copies of that statement from your doctor?

Did your GI do stool samples for the bacteria that's the culprit.  Is it Campylobacter?

http://www.cdc.gov/ncidod/dbmd/diseaseinfo/campylobacter_g.htm

It's possible that this might be a trigger for UC eventually...but hopefully the antibiotics will be able to deal with it asap. 

Keep us posted as to the outcome of your visit to the hospital regarding the ER doc's statements.  Did she at least give a look-see as to what was going on? 

It's unfortunate you're having to go through all of this...but it's probably a good idea your doc isn't giving you steroids before treating the gastro invader.

quincy


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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) : 11/11/2007 12:06:28 AM (GMT-7)


Msterra34
Regular Member


Date Joined Oct 2007
Total Posts : 29
   Posted 11/11/2007 5:51 AM (GMT -7)   
Quincy,
I was already treated...actually with 3 different antibiotics. Is was indeed camptobacteria that started this all. After 3 weeks they done the colonscopy which showed active colitis- but my surgeon told me that he didn't think it was ulcerative or chrohns just colitis that was set off by the camptor. I have had normal bowel movements for almost 2 weeks now and no meds- so I guess if is the bad ulcerative colitis I am in remission- Can someone have colitis one time and not be ulcerative type? My surgeon told me that is possible. Thanks!
**********************
Terri D. (34)
Toprol XL 25mg a day for rapid HB
L5-S1 disc rupture in 2004
Thyroid nodules and levels swing in and out:(


quincy
Elite Member


Date Joined May 2003
Total Posts : 29840
   Posted 11/11/2007 1:02 PM (GMT -7)   
Hi.yes, colitis just means inflammation of the colon. There are some that do mimic UC...so, diagnosis is usually a process of elimination with UC usually being the last on the list. At least that's what's what my doc mentioned when I first saw him. He suspected UC, but had to nix all the other possibilities before.

It's great you're having normal bms....hope it continues and you indeed don't have UC.

I will caution you about one thing....that if you have ANY symptoms that are continuous such as constipation, loose stools, bleeding, straining, urgency..etc before diarrhea, go see the doctor and get him to take a look-see. If there is inflammation starting at the rectum...he should take a swab to see if it's the campylobacteria back again and if it isn't assume it's probably UC and you should be treated with a rectal medication.

Just my take on it...you're the only one that can notice changes...I would suggest you don't wait until it gets tooooo obvious.

Oh, please make sure you start on a good probiotic. They will help keep your colon in a floral balance and help protect it from another influx of the cb.

Keep us posted as to how you're doing.
quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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 !!!


Msterra34
Regular Member


Date Joined Oct 2007
Total Posts : 29
   Posted 11/13/2007 12:53 PM (GMT -7)   
Thank you Quincy- I will:)
**********************
Terri D. (34)
Toprol XL 25mg a day for rapid HB
L5-S1 disc rupture in 2004
Thyroid nodules and levels swing in and out:(

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