New Here......Am I still alone?

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New Member

Date Joined Nov 2008
Total Posts : 2
   Posted 11/1/2008 1:06 PM (GMT -6)   

First I was given Remicade and Dx'd with Crohns disease in Feb 06 and in Jan 08 I found out I NEVER had crohns. Am I alone?????

Back up to July 2000, where I had gastric bypass surgery to control out of control type II diabetes, high cholesterol, and borderline high blood pressure. Lost 111lbs and all my medical problem went away.

2002 had abdominalplasti (tummy tuck). Lost another 20lbs, and got really into walking and working out. Got my body fat down to 12%. Looked awesome for early 50s.

over the next couple years I was in the best shape of my life....In 10/04 I got married again....third times a charm...during this time I had times when I would catch intestinal virus's (like every one coming down the pike) but thought this was my cross to bare in exchange for the changes I had made in the crate I came in.

In Dec 04 I had surgery on my left kidney for a 2cc stone. I didn't know it was even there til I started peeing blood. I recover fine and went back to my work outs by spring.....

In Jan 06 I got yet another "bug" that again laid me low for a week or so, but this one was different...I kept getting pain in my insides behind my belly button. I finally went to reg Dr. She put me in hospital for strangulated hernia in my fake belly button (surgically made). Nest thing I know in comes GI Dr. He informs me that I have Crohns. I have a brother that was Dx'd with it 10 yrs before. I asked him twice if he was sure because my symptoms didn't act anything like my brother. He assured me that "nothing else presents itself like crohns. I was then loaded with drugs that literately knocked me flat. He started me on Remicade in Feb just before my colonoscopy. I had my second treatment two days before the pathology report was back.....I had my last Remicade treatment in Dec 07 shortly before I changed Drs..

I have had problem with aching joints since first few treatments, and continue to even 11 mts after stopping the Remicade. During the first year on Remicade I had unbearable fatigue and was Dx'd with Epstein-barr with #'s in the +900 range. Three months later it was tested again and was 1266. Dr (GI then) told me that it just showed that I had it ......not that I have it now.....I still suffer from fatigue and believe me NO-ONE here understands, tho they try to.

I have been seeing a rheumatoligest (sp) for about 18 mts for joint pain. Nothing!! I don't show anything on blood test for Lupus, fibromialgi, RA, exc. Cant remember all....She has mentioned a few times "remicade induced Lupus Syndrome" ...but now wants to try MTX....I believe this to be another drug that screws with your immune I think it is time to look else where for answers.

Anyway I came across this site and saw mention of a "immunologist" I am so syked I can't wait to find one around here...I will be asking my New GI on the 12th to send me to one......Oh one more thing I also failed the hydrogen breath test for E-coli this past week and am on Xifaxan.

Anyway......I feel really alone because I don't have Crohns (thank you X3) so Crohns sites don't help. But I have been loaded with Remicade (at one point the OLD GI upped me to every 6 weeks because of the joint pain)...

I live daily with joint pain, mostly in my hands and feet, but it varies some days even 10/660 vicodin doesn't touch it. I do take Soma at night and that has stopped the cramping a lot. I have fatigue problems to the point that I go days living in p.j.s (just shower and change) for days at a time. Good thing my kids are grown.

Sorry this is so long, but I don't know where to turn, and I feel like I only talk about this to DH and he is so sick of hearing it. He married this wild witch and ended up with Queen sleep a lot.

Any thoughts at this time would be greatly appreciated.

Blessings all

New Member

Date Joined Nov 2008
Total Posts : 8
   Posted 11/7/2008 11:14 PM (GMT -6)   

Hi, Badgoyle (like your name!)--Ya know, I don't think anyone can figure out all of our aches and pains and weird stuff. We have all kinds of diagnostic tests and nothing shows up. Why are more and more of us being diagnosed with fibromyalgia, crohn's, lupus, RA, GERD, etc.? I'm sure it has something to do with our lifestyles and environment. We eat a lot of garbage and still expect our bodies and minds to act properly. We take drugs to suppress the "bad" stuff and that leads to screwing with the "good" stuff. We worry and fret and hope for a miracle--yeah, I've been there, too.

I work (part-time, don't have the energy for more) with people with special needs. Some of them are on so many drugs. One problem might be fixed, but another rises up in its place. It's truly a vicious cycle. If one condition is "cured," it invariably brings about a new problem, and it goes on and on. I also believe these folks are used as guinea pigs by the medical community since they're often viewed as "throw away" people.

Maybe working more with holistic practitioners we'd all get better results. The only problem with that is that insurance companies won't pay for it--and why is that?? Anyway, I'm rambling...

Best wishes to you...




mulberry farm nature care
New Member

Date Joined Nov 2008
Total Posts : 3
   Posted 11/30/2008 4:55 PM (GMT -6)   
Hi, I had chronic fatigue syndrome so badly that I could not walk or talk for years. I don't have it anymore. I started looking at my negative emotions. I wrote a list of all the people that I was angry at. It was a long list. I decided to forgive them all. I also had to deal with a lot of fear and stress and unloving thoughts toward myself. I started getting healed that way. I still have to deal with those things on a daily basis. I have hd a lot of fear of the future and have had to give it up. All of those negative emotions really hurt the body. Try the book: A more excellent way. it's by HenryWright It talks about that stufff and how to get out of chronic fatigue syndrome.

Veteran Member

Date Joined Oct 2008
Total Posts : 1683
   Posted 12/4/2008 1:09 AM (GMT -6)   
you arent alone- ive lived with CFS exactly half of my life. diagnosed at 14, now 28 and still struggling. coping, but only just. one day at a time. Maz XX

            'He heals the broken hearted and binds up their wounds.' (Psalm 147:3)                  
Panic Disorder, Agoraphobia, CFS, Fibro, TMJ disorder, Endometriosis, PCOD, Chronic E.N.T infections, Reactive Arthritis, GERD, Sinusitis, IBS,  Allergies, Chemical/Noise/Light sensitivity, Trichotilomania, PTSD, Seasonal Mood  Disorder, OCD.
Meds: Zoloft 150mg. Xanax 4mg. Celebrex. Mobic. Panadeine Forte. Digesic.
Multiple surgeries- I bear the scars of my poor physical health.
Age:28. First diagnosed at 14. Proud Aussie.

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 12/9/2008 12:59 PM (GMT -6) friend you are not alone
I do have crohns.......pyoderma gangrenosum.........anxiety/panic and have recently in past few mths been dx with constanly tired ......exhausted

Maxz said the majic words
Take it one day at a time

I do hope you can find an immunolgist and get soem answers

I am on Methotrexate and folic acid .........Never had problem with the MTX but I d have liver function tested every month

I wish you all the best as well
Stay with us


 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

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    CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            ~ FIGHT the FIGHT with all YOU HAVE ~
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         

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