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Crohn's Disease
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Posted 9/8/2010 7:12 PM (GMT 0)
Ides, I noticed on your signature that you moderate the IBS forum as well.  I took a quick visit over there and did a google search and didn't find much in the short windows of time that I have online, so I was hoping you could help.  If I were to be diagnosed with Crohn's incorrectly when I really only had IBS, is there any reason that I would have improved dramatically from taking biological drugs?  And is there any reason I would have ulcerations in my terminal illeum from IBS only?  Thanks so much!

 

Posted 9/8/2010 7:26 PM (GMT 0)
IBS does not cause ulcerations in the terminal ileum. The other cause of terminal ileum ulceration that is becoming more prevalent is from over usage or long-term usage of NSAIDs. Before I was first officially diagnosed with CD, the GI wanted me off NSAIDs for 6 months. He wanted to see if my TI erosions and inflammation was possibly caused by my long-term use of Aleve. After the 6 months, I was re-scoped and the problem was still there. All the inflammation and erosions were gone after I started Remicade.

Whether biologics improve IBS symptoms - not sure if any studies have been done on that.

You didn't say why you are asking this, but I am assuming some GI is now saying you never had CD. Is that it?
Posted 9/8/2010 7:41 PM (GMT 0)

Not really sure yet what's going on.  I saw GI #1 for 8 yrs and he did test after test and could never figure out what was wrong.  GI #2 did a capsule endoscopy 5 yrs ago and dx'ed me right away based on ulcerations in my TI.  I was put on Remicade after being very sick and ended up going into remission after several months.  Remicade worked great until I developed antibodies and then had allergic reactions and had to stop it.  I can't say enough BAD things about that GI, though, so I switched to GI #3 shortly after diagnosis and have been treated as though I have Crohn's for 5 yrs.  Biologics are the only thing that work.  I have been dx'ed with Crohn's related arthritis, which has gotten to the point where I've been told I will end up on disability if it continues to progress as it has been (and I'm 29). 

Probably a month or two ago, rheumy wanted to take me off of Humira and try Enbrel because we are out of options on the arthritis.  GI said no because Enbrel won't help the Crohn's any and my "Crohn's has proven difficult to treat in the past," so he didn't want to try other options.  Saw GI again a couple of weeks ago and told him we were out of arthritis options except for Enbrel.  He then said that we need to do some more tests to make sure I really have Crohn's and not "just IBS."  This was all news to me...never had any idea that my dx had ever been in question.  He basically said if it's not Crohn's we can switch to Enbrel for the arthritis.  Now I am very confused.  He said we are at the point where we have some big decisions to make.  But, here are a few of my questions:

1. Why just question this after 5 yrs?  If he had any doubt, he should have said something sooner and not kept me on risky drugs for 5 yrs.

2. Why would I have gotten better on the Crohn's meds if it was just IBS?

3. Why do I have Crohn's Related Arthritis if I don't have Crohn's (rheumy is saying it's Crohn's related)?  And if it's not Crohn's related, why did I get arthritis at 21 yrs old?

4. If I'm in remission, will anything show up on my tests anyway?

Best thing is that the results of the capsule endoscopy that dx'ed me were "lost" according to the office manager when I first requested a copy of my medical records 5 yrs ago.  Now that GI #3 is questioning the dx, I called GI #2's office today just to see if they ever found the results.  And yes, they are there in my file...the report and pictures both, which were supposedly lost on the computer in 2005.  So, they are sending me a copy and I'll have GI #3 look and see if I was originally misdiagnosed.  I'm just very confused on why I've gotten better or "been in remission" if it wasn't Crohn's to begin with.  Any ideas are greatly appreciated. 

Posted 9/8/2010 7:47 PM (GMT 0)
Zena - I am short on time so can't reply indepth as I want. Until then don't let GI's "just IBS" comment get to you. You will soon have in-hand the pictures to prove your CD.

Also, did the rheumy mention Simponi? I am on that and it has worked wonderfully on the arthritis and kept the CD in remission. Remicade worked great on me, Humira gave me lupus. Simponi works better on my arthritis symptoms than Remicade did!

Gotta go but will get back to this later in the afternoon/evening, my time - PDT.
Posted 9/8/2010 8:03 PM (GMT 0)
She hasn't mentioned Simponi, but I just looked online and I don't see where it's approved for Crohn's, so maybe she assumed the GI would say no to that as well.  I know many of the biologicals start out being approved for one thing and then they add the others later, but they've told me that the Enbrel really doesn't do anything for the Crohn's.  Maybe the Simponi does and it's just not FDA approved for it yet.  I'll ask both the rheumy and GI about it.  And yes, I'm anxiously awaiting for the capsule endoscopy results to get here in the mail so I can have the GI give me his opinion.  It would be great to not have Crohn's, but it doesn't make any sense and I don't want to do test after test again and be asked if it's all in my head because they can't figure out what's going on.  After 8 yrs of that, I was happy to have a dx, regardless of what it was.  I won't have internet access until tomorrow, so I'll look for your reply then.  Thank you!!
Posted 9/9/2010 7:49 PM (GMT 0)
Zena,

Sorry I didn't get back to you yesterday. I simply ran out of time and then energy.

I am going to try and answer your questions and offer some opinions on some of the issues.

1)Why just question this after 5 yrs?  If he had any doubt, he should have said something sooner and not kept me on risky drugs for 5 yrs.

I sometimes think doctors don't think before they speak. Your point about him keeping you on TNFs if he questioned your diagnosis is spot on. I think that some GIs simply need to see the Crohn's inflammation themselves. Why they don't trust a colleague's diagnosis probably comes from being burned in the past. Since you have located the capsule endoscopy pictures and report, that should ease his mind.

2) Why would I have gotten better on the Crohn's meds if it was just IBS?

Trust that you have Crohn's. There was proof from the capsule endoscopy. Remicade was shown during clinical trials to cause intestinal mucosa healing , often quite rapidly, in many of the people in the trials. Remicade cleared all the inflammation, erosions and other signs of Crohn's in my TI within 6 months of starting it.

3) Why do I have Crohn's Related Arthritis if I don't have Crohn's (rheumy is saying it's Crohn's related)?  And if it's not Crohn's related, why did I get arthritis at 21 yrs old?

Again, trust that the arthritis is related to the Crohn's. As to why would you get arthritis at 21 if you don't have CD - many people are inflicted with one of the spondylitis family of diseases, most often in their teens or early twenties. Crohn's related arthritis belongs to this group of diseases. It seems most likely that you have the CD related rather than lets say reactive arthritis or psoriatic arthritis.

After my reaction to Humira, I was off all anti-TNF meds for 18 months. I was on Imuran. My Crohn's intestinal symptoms did NOT reappear. When the arthritis symptoms began to once again limit my mobility, my rheumy suggested Simponi. My GI said he had no problem with my using it. They took me off the Imuran about a year later. I have been only on the Simponi and still no gut issues. Had a scope in May and there was no sign of active CD, just scars in the TI.

There have been some people on here that use or have used Enbrel. I can't recall what, if any, effect it has had on gut symptoms. I can only speak to my experience with Simponi and it working for me. Why your GI won't let you try either Enbrel or Simponi is beyond me. He might be surprised to find that it keeps your GI symptoms at bay.

To your comment - "it would be great to not have Crohn's." Yes, it would be great! But also, if you don't, then you are back at square one to explain all that has happened in the past. None of us want a chronic illness. Like you, I was glad to get a diagnosis after years of being told I was "overly stressed" or "imaging" my problems.

Posted 9/9/2010 8:14 PM (GMT 0)
Thanks, Ides!  I did some more research on Simponi today and from what I can find, it may be in the approval process/stages for UC.  That sounds very hopeful.  The only reason I can think that my rheumy didn't mention it is that everything I found says to use it with mtx for RA and I can't take mtx due to elevated liver enzymes.  From your post, it doesn't sound like you are taking mtx as well...is this correct?  I will definitely ask both the rheumy and GI about this.  Thank you so much for replying and for giving me hope.  I am anxious to hear what the GI will say about the capsule endoscopy pictures.  I read the report again last night (that's all they were able to give me originally) and it said both ulcerations in the TI and a stricture in the jejunum.  So, we will see!
Posted 9/9/2010 8:57 PM (GMT 0)
It is recommended that those taking Simponi for rheumatoid arthritis take MTX concurrently. That is because clinical trials showed much better response when the two were taken. In fact, my insurance company would not approve my usage of Simponi because I was not on MTX. My doctor explained to them that those with ankylosing spondylitis do NOT need to take MTX with the Simponi.

I am not taking MTX with the Simponi. I am off Imuran because my rheumy does not like the increased cancer risk with Imuran and Simponi used concurrently and my anemia got so severe. Once I stopped Imuran, my red blood cells returned to the normal range for the first time in 6 years.

Let us know what the rheumy and GI decide. Also, I think it would be good if your rheumy and GI got off their rears, picked up the phone, and discussed your medication dilemma over the phone. You should not have to be the go-between and suffer the confusion they start.
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