What's wrong with me?

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elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 6/5/2006 4:47 AM (GMT -7)   
I had a follow-up with a GI doctor on Friday.  She told me I definitely do not have IBD.  When I questioned her closely about the ulcers I had in my colon last August, she told me they were most likely caused by NSAIDS (even though I had not taken any NSAIDS for 8 or 9 months prior to the colonoscopy).  After thinking about it, I think that's entirely plausible 'cause I've read that ulcers can stick around for long periods of time with no treatment.  I guess I'm just one of those people who cannot tolerate the NSAIDS at all.  Anyone else here sensitive to them?  I'm sure you are, Erin, because of your crohn's.  But are any of you who don't have IBD sensitive to them?
 
It feels good to eliminate IBD as a possible dx, but then again, I still don't have an answer to what's wrong with me.  I'm so tired of hanging in limbo on a dx.  I know that only symptoms can be treated anyway, but it still helps to have a label.
 
Enough whining for the week,
 
Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 6/5/2006 5:48 AM (GMT -7)   
Elcamino Hi,I know what you mean about not having a DX at least with one you feel like you belonge.I'am glade that you do not have IBS.This is one reason I cannot take Nsaids because they hurt me and I cannot tolerate them.I was like you I have ulcer's in my colon only they say I know have crohns-colitis and Straydog just found out she has crohns-colitis as well.If you are questing your GI then maybe you need a sound opinion.I hope every thing work's out for you.Please let us know how you are doing.
Thanks
Curley......
a.k.a.Mela...........


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/5/2006 8:52 AM (GMT -7)   

hey "el"

you know what, i'm greatfully relieved that so far inflammatory bowel disease has been ruled out.

but what i was thinking...ulcer disease could fall into a different categorie.  people have peptic ulcer disease but that's not part of IBD  (for all reading this who are unfamiliar Inflammatory Bowel Disease [IBD] and Irritable Bowel Syndrome [IBS] are 2 COMPLETELY different things; IBS being almost comletely benign but with major symptoms and upsets and IBD being chronic and progressive in nature).

so what i'm thinking is you could have an ulcer disease affecting parts of your colon significant enough to cause problems but categorily not falling into IBD...but perhaps IBS.

again, ya never know.  with one AI issue there can arise many others.  be vigilant with your GI problems and keep track of them.

hah, funny you mention me & nsaids.  they make me bleed bleed bleed.  but now, i really want to take an ADVIL instead of steroids! i hate steroids.

hang in there my friend.


Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/5/2006 8:56 AM (GMT -7)   

just wanted to add something:

the meds you take now, if it is the case where there is some sort of inflammatory bowel process going on...your medication you're on now would be helping a great deal to care for it.

:)

erin


Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 6/5/2006 10:40 AM (GMT -7)   

Thanks Curley and Erin.  Erin, my GI doctor told me I probably had IBS, but as far as I know IBS cannot cause ulcers anywhere within your GI tract.  When I brought that point up, she came up with the NSAID theory.  Then, she promptly dropped me and told me not to come back because she has really sick patients!  Admittedly, people with IBD can be very very sick, but not all of them.  Nevertheless, I won't be going back to see her.  If I need another GI doctor I'll have to continue my search.  This lady I went to was an expert in IBD at Johns Hopkins, so I'm sure she has a patient list a mile long.

I think a lot of people are sensitive to NSAIDS whether they have IBD or not.  Both of my parents were.  My father has IBD/Ulcerative Colitis, my mother did not.  Both had problems, however, with upper and lower GI systems in connection with NSAID use. 

Erin, you also mentioned that enbrel can treat IBD?  I've heard it's not very effective for that--both remicade and humira are much much better.  That being said, perhaps it's better than nothing in comparison to what and IBDer would feel like without taking it.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/5/2006 2:14 PM (GMT -7)   
yeah, "supposedly" enbrel doesn't facilitate IBD but when i went off of it...all he** broke lose; and when i went on Humira it started to settle down again. my GI & rheummy both agreed that the TNF most likely had helped with it.
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 6/5/2006 3:36 PM (GMT -7)   
elcamino,
We meet again! Digestive Disease Week is an annual event where the world's leaders in gastroenterology meet to present the latest findings, studies, etc. DDW 2006 just ended last week. One of the interesting abstracts of a program presented there dealt with being able to differentiate Crohn's from NSAiD-enteropathy by using the capsule endoscopy. Some excerpts from the abstract:
"It [CE] also appears to be the investigation of choice for the diagnosis of NSAID-enteropathy, which affects over 50% of patients receiving these drugs long-term. Furthermore NSAID-enteropathy is associated with serious outcomes (bleeding, perforation and obstruction) as frequently as NSAID-gastropathy. Indeed it has been suggested that certain NSAID-induced small bowel damage may be indistinguishable from that of Crohn's disease."

"Conclusions: CE images of the small bowel show that NSAID-enteropathy has a similar range of pathology as seen in patients with Crohn's disease which further corroborates the importance of the small bowel in the overall gastrointestinal damage of NSAIDs. In the absence of a clinical history experienced CE image readers arrive at an incorrect diagnosis in 20% of cases. "

This evidence shows just how much damage can be caused by NSAIDs. In fact, that was what was thought to be the cause of the erosions initially found in my terminal ileum. I have not researched the treatment of NSAID-enteropathy, nor what happens if not treated. Frankly, I hope that it is/was NSAID problems not IBD that caused your aphthous ulcers.
CD, Ankylosing Spondylitis, peripheral neuropathy
Please help support this forum. http://www.healingwell.com/donate/ 

Post Edited (Ides) : 6/5/2006 4:40:39 PM (GMT-6)


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 6/5/2006 4:40 PM (GMT -7)   

Very interesting research Ides.  GI doctors, from what I've found so far, do not tend to make a big deal about NSAID therapy and its effects on your GI system.  My rheumatologist, however, is very sensitive to that.  He pulled me from NSAIDS when my colonoscopy showed the ulcers just in case I did have IBD.  When I mentioned to my GI doctor the other day that I cannot tolerate NSAIDS, she rolled her eyes?   I think if I told  him what the GI doctor said about NSAID ulcers, he might agree.  Since he uses the NSAIDS for a lot of his patients, I imagine he's well aware of the risks associated with their use.

My mother had an intestinal perforation that required surgery about a month or two before she died.  I've often wondered how much of that was caused by chronic NSAID use as well as prednisone use (I think prednisone can cause ulcers too, can't it?).   She did not have IBD, so I think a lot of her GI  problems stemmed from medications.   Back then, they used candy coated aspirin a lot for RA symptoms, and other joint problems.  I can remember her taking 12 a day (years prior to her death).

Elcamino

 


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan

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