Don't know what to do!!

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jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 6/10/2010 8:21 PM (GMT -7)   
I swear, I am so sick and tired of being sick and tired, I don't know what to do. And, I don't know what is making me feel so bad right now and don't know which doc to call. For the past few weeks, I've had HORRIBLE joint pain. Saw the rheumatologist and I am on 400 mg of plaquenil. They say it takes a long time to work. I had a few days of honeymoon feel great days but that didn't last long.
The colon is only so-so, it's been hurting off and on too but the joint pain and fatigue are a much worse issue right now. However, I am wondering if perhaps I have an infection in the GI and that is why I am aching like I am sick. Several weeks ago, I was in a flare and when I talked to my GI, she mentioned more CT scans. I am gonna glow if they keep doing these. Why can't they just give me antibiotics and see if I get better? Do your docs make you get a CT scan every time you are in a flare. Oh, and to complicate things, my ANA is now positive. Any advice for which doc to call?

Question, do you think the immune suprpession of the plaquenil is causing a flare of an infection in my colon??? I also have diverticulum.

I am so tired of not feeling well and dragging myself to work each day in pain. I feel like they don't know what is wrong with me and I have never been in remission with the colitis for any real good length of time. I'd be happy for 6 good weeks of normal bm's and no pain.

Thanks for listening........and apologies for being such a prolific whiner on this site. I just don't know what else to do or who to ask for advice.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/10/2010 10:23 PM (GMT -7)   
sorry you're not feeling well. hope you get better soon! believe me i know how frustrating it is- this current "flare" of mine has been going on for almost 2 years...had CD for 22 and the past 2 have been the worst. i wish i could offer more advice for the joint pain- i've been dealing with it on and off as well. I've taken more warm baths than i can count. it's hard but when it gets bad i try to keep moving- i've noticed that when i sit or lay for a while it gets that much worse...i feel like an 80 year old man sometimes at work when i have to get up...have you tried MSM or glucosomine?
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/10/2010 10:25 PM (GMT -7)   
also there are some natural anti-inflammatories i have tried -- Wobenzyme- (i liked a lot) and another one called Zeel- homeopathic...my wife ppicked them up a while ago- i'm not sure where but i'm sure you could find them easily online.
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 6/11/2010 11:34 AM (GMT -7)   
I think you ARE in a CD flare and no, I don't think you should have a CT each time you flare. There is a lot of radiation in a CT.

I'd call the rheumy and the GI and make them work together on a plan. Looking at your signature, the only med on there I can say is related to CD is colazal - is that right? When I've had joint pain, etc. related to my CD, the best and fastest way to relief was prednisone plus a change in my meds - went from Asacol to Pentasa (lots of improvement, off the pred in 2 months), then added entocort then sulfasalizne (to address joint pain, did well, went off entocort), then recently put an omega-3 back in my pill box (flax seed oil).

The fatigue and the joint pain come with an autoimmune response - no matter what you call it, it needs attention. If Crohn's (or even ulcerative colitis) is on the list as a main suspect, treat the suspect with 5-ASAs, or steroids, or the newer immune modulators, or methotrexate and see what happens. A lot of the treatments for Crohn's are also treatments for other autoimmune conditions.

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/11/2010 11:41 AM (GMT -7)   
Sorry to hear you are not feeling well. please don't ever think of yourself as a whiner. This disease HURTS!! mad   and noone should have to live with it. My mother got how bad it was when I told her I would not wish this even on my hated ex sister in law..hehehehhe. We all feel we complain too much from time to time but this is the place for it. 
On the subject of tests I have not had one CT yet. I am not sure what is up with all the CTs because that can't be good with all the radiation. Check with your dr to see why he thinks you need so many. I hope you feel better soon.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)

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