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Constantly Sick. Why?

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Ulcerative Colitis
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Posted 11/2/2012 5:11 PM (GMT 0)
Can someone give me guidance on if I should be seeking another doctor's advice? I am on Remicade, and it is working. However, it is no miracle drug... and I am continually facing up and down symptoms of aches, feeling feverish, low grade fevers and having fatigue.

As I feel more sick in this regard, my symptoms of UC come about. I get urgency, increased frequency, looser stools.

My GI specialist is a good person and a good doctor, but I feel that he thinks things are either under control or that he's done all he can do in regards to testing for any other issues.

My question: Do I just accept this as my normal, or do I seek out further help? If I seek out help, who should I see?
Posted 11/2/2012 5:18 PM (GMT 0)
I would let the doctor know that things are not under control as you are not only sick all the time but UC symptoms are returning. Make sure you know all your options ahead of time and communicate what you want to do with the doctor.
Posted 11/2/2012 5:18 PM (GMT 0)
Hey Thoreau,
I am on remicade as well, and I do get the same symptoms as you.I get aches and pain and feel feverish, altough I don't have an actual fever, and fatigue. I am seeing and integrative doctor and his thoery is that my UC is triggered by a chronic infection, and that the remicade is bringing out the infection since its supressing my immune system. I don't know if it is true, but it makes sense to me.

I personnaly decided to just deal with the symptoms right now, because my uc symtoms are very very bad when I flare, but I am honestly really looking forward to stop the remicade. I can't tell you what you should do but I guess maybe you can see a GP and ask for advice...
Posted 11/2/2012 5:53 PM (GMT 0)
It sounds as if Remicade isn't working, or it's not been given enough time to work. Your symptoms are similar to the symptoms I had before I opted for surgery, and back then my last drug was 6MP. I'm not suggesting you opt for surgery, but just want you to know that the fevers, aches and pains, etc. are most likely related to your UC. The other thing that happened to me concurrently, was that I developed a cough with no origin. My internist convinced me that it was my toxic colon just manifesting illness elsewhere. She was right; colon gone a few months later and so went the cough. My heart goes out to you; I hope you can achieve remission.

Sue
Posted 11/2/2012 6:07 PM (GMT 0)
     Ditto Suebear.  Has your GI doctor even suggested you see a surgeon?  If not, I would bring the matter up.  When 6MP, Remicade and finally Humira all failed me, my GI doctor, jokingly, suggested surgery.  When I told him, "Yep, I think I am ready for surgery."  He looked at me like I had three heads and refused to send me to a surgeon!  All he wanted to do was really try more and more drugs.  By that time I was soooo done with this disease.  If the disease hadn't killed me the meds were doing a good job of it.  I was half dead when I finally looked up a surgeon on my own.  Had surgery in 2010.  Needless to say, I never returned to that GI doctor, nor any GI doctor since.  Sometimes you just have to be your own advocate.  No one knows your body better than yourself.
Posted 11/2/2012 6:29 PM (GMT 0)
Thank you, everyone.

The thing with my disease is, it has been very good for the last couple months. Not like a normal person, but to a point where it hasn't bothered me. BUT, the fevers/fatigure/aches have been happening for a couple months now. I mentioned my fevers, but since they are such low grade my GI doc/nurse said it's not something to worry about.

I haven't had blood for months, which I use as a gauge in regards to my disease. I've been on Remicade for 9 months now and feel it is working overall.

Bambino... I feel like what you're explaining may be right. I have had success by first taking antibiotics and then supplementing strongly with probiotics. I feel that my body is responding to something that actually needs fixing.

As far as letting the my specialist know I'm sick... I've done that many times. They send me in, do blood draws, chest x-ray etc... only to tell me I'm fine. It's repetitive and not solving my problem.

Rest does help. I just slept 12 hours and my gut is noticeably better, at least for the moment. I've still got the aches and fatigue though.
Posted 11/2/2012 6:52 PM (GMT 0)
thoreau

It is interesting that you have a fever but no symptoms. I too run a low grade fever at times, but only when I am in a pretty nasty flare....blood and the full monty. I will say that I am somewhat uncomfortable with your doc dismissing a fever. While it may not be life threatening, a low grade fever makes functioning very difficult. I would seek a second opinion. I hope the remicade begins to work for you as I see you do not have may other options. But as of now it seems that is not exactly the case.
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