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I Don't Feel Sick, I Feel Helpless - Insight??

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Crohn's Disease
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Posted 10/14/2009 2:59 AM (GMT 0)
Hello Everyone.

I haven't posted much on here - but I do stop by to read what everyone is up to now and then.  I think this is a great community.

I still feel how I felt when I was first diagnosed with Crohn's in May 2008 - Confused.  I guess I'm in need of some insight from people who can relate.

Quick backstory: I went to a colon/rectal doctor because I had a fissure and skintag that were bothering me.  This tipped the doctor off to a possible Dx of Crohn's but didn't want to make such a "serious call" until further testing.  So I had a colonoscopy a couple months later and it was confirmed.  She prescribed Pentasa, refered me to a GI and then my journey began....

I remember having a few weeks of stomach pains in May 2007 that cleared up on its own (it probably was Crohn's releated, but wasn't aware of such a thing then).  Other than that, I have not had anymore stomach pains/cramps, have never had abnormal BMs and really haven't felt sick at all.  I'm completely grateful when I say that I'm still living the life I've always known - this Dx hasn't really affected me physically but it has taken a toll on me mentally.....like I mentioned, I feel so confused as to what I should do.  My GI doctor is totally baffled when I tell him I feel fine.  He's basing his reactions off of my blood tests and a MRI Enterography.  My first MRI Enterography in May 2008 showed significant inflammation in my small intestines.  He's big on checking my SED Rate and CRP - I've gotten this checked so many times in the past 1.5 years.  Since the initial Dx, my rates have been decreasing toward normal, but at a very slow rate.  I've now been hovering at a 10-15 SED Rate (MM/HR) and a 11-16.5 CRP (mg/L) and my second MRI Enterography done Sept 2009 showed "significant improvement" but still isn't "normal".

My doctor doesn't think Pentasa is enough.  He has pushed 6-mp since the beginning.  I did try the 6-mp for 3 months last year but stopped because I wasn't comfortable taking it to begin with.  I want to take care of myself and I feel like I'm doing a good job but these tests are telling me otherwise and it's making me nervous.  I'm comfortable taking Pentasa and with that I take daily probiotics, Omega-3 fish oil, turmeric and a multivitamin.  I'm not comfortable taking any of the other drugs at this moment in time....

Do I really have any other options??? I'm being told I'm sick, but I don't feel sick - I feel helpless.  Part of me doesn't want take any medication because I feel okay, but I know there is inflammation so I've stuck with the Pentasa.

Most Thankful,

________________________

26/F

Dx Crohn's May 2008

1000 mg Pentasa 2x / day

Probiotic, Omega 3-fish oil, turmeric, multivitamin

Posted 10/14/2009 5:54 AM (GMT 0)
I'm thinking that the Pentasa (along with the supplements you're taking) is maybe a good reason why you feel okay, so honestly I would stick with it, so many have greatly regretted going off their meds only to end up in bad enough flares that they have a much harder time getting back under control...you know the old saying "if it aint broke, don't fix it".

Regardless of what they see inside (inflammation) and what blood work tells them, crohn's is a very individualistic disease.

:)
Posted 10/14/2009 5:55 AM (GMT 0)
I just wanted to post a quick response. I'm definitely not the most knowledgeable person on here when it comes to treatment options, but I did like how my doctor approached it. I did have a different back story than you though in that I did have a lot of symptoms. What my doctor did though was to start slow and gradually go up to stronger and stronger meds. I started out with Pentasa. It didn't do a thing for me. There are some people though that find Pentasa to be just what they need to keep everything under control. So if you're continuing to do fine and your levels are coming back down to normal then I think it may be ok to stay with that. I would not suggest going off the drugs though, especially if they saw inflammation during a colonoscopy. You don't want it to get worse and then get to the point where you have a lot of symptoms and then potentially need surgery. Overall though, if you don't like the course of treatment your doctor is presenting then I would suggest getting a second opinion from another doctor.

Hope that helps.
Posted 10/14/2009 11:29 AM (GMT 0)
very difficult to respond to your question.... you can proceed as has been suggested: stay the course with this med, tell doctor you're uncomfortable with 6MP, or make the change if the doctor backs it up with reasoning...... I am not so sure "pentasa is not enough" reasoning is sufficient reasoning to change, if you are feeling good. ..this reasoning is something you can return to the post with as I would be interested.

On the other hand, 'other options' is your question the answer is quite complex...
In order to actually go beyond the 2 suggestions I would have some "what if" type questions for you. Who initially prescribed the pentasa?? Did your primary doctor just look it up in a book and read oh it looks like first line med for crohns is pentasa so he/she decided on prescribing that? or was it the colon/rectal doctor or GI? This is important because you might have colitis not crohns and the pentasa is working for colitis. Also, if you do have crohns and the pentasa is incorrect then the only thing that is getting you through this is the probiotic.
I believe that if you are inflammed then the body is attempting to counteract a problem. I hate to say the problem is being aggravated by the Pentasa but if you have crohns and not colitis that might be true (emphasis is it might be). I even suspect that the GI is saying the pentasa is not enough because, in actuality, it is not the correct drug in the first place, and he apparently has suggested 6 MP from the beginning, so he is essentially attempting to correct the original prescription (so your question of what other options are there ...you must ask directly to him). So that part is not after the fact, rather the reasoning is now whether changing from pentasa to 6MP is a good idea. Frankly I would say get off the pentasa to see what happens first, and if you feel worse go with the 6MP, but I am not a doctor. If you are flaring now and just don't feel it ...also ask the most knowledgeable doctor what harm would be done if you went off the Pentasa but delayed the 6 MP. Also how did you feel on the 6MP?
Posted 10/14/2009 2:10 PM (GMT 0)
I understand your desire to be free of medications. I have been VERY resistant to taking my meds especially when they bumped me up to Imuran which I felt was really really bad for me. I finally quit all meds last June after Imuran caused me to have pancreatitis. I ended up having a moderate flare in late August early September. I currently take Cort enemas, and Asacol. That said, if your tests are showing inflamation in the small intestine I think that you need to get a lid on it before you end up needing a surgery! Discuss your feelings with your doctor and if you are not satisfied with his listening to, and consideration of, your desires fire him. In any event a second opinion probably wouldn't hurt and could give you better confidence in your current doctor. That's my thoughts. Good Luck
Posted 10/14/2009 2:28 PM (GMT 0)
I'll tell you my story. I had symptoms at the age of 13. Since my Mom had CD, I was sure I had it too. The doctor just blew me off and said I was lactose intolerant. I stopped drinking milk and a few other things that were bothering me at the time. I carried on with my life for the next ten years feeling pretty good, probably much like you. Only I was completely unmedicated. When things really got bad, the damage was done. I ended up with 3 resections in just a few years. I feel it was because the disease was working its microscopic magic without anything to keep it in check. I will never go without maintenance medication again. If you are on Pentasa but still have inflammation, then it isn't strong enough. It doesn't matter how you feel, the disease is still working at a microscopic level. That of course is just my opinion and my experience.
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