Help! I'm at my wit's end!

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mysterytome
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 11/17/2007 3:32 PM (GMT -7)   
Hello everyone,
 
I'm new here. I am a mystery patient to my doctors. I have been suffering bouts of colitis since 2002. I have made numerous trips to the ER. I have had 5 colonoscopies, 2 CT scans, Small bowel follow through, bowel transit study, and blood tests too numerous to count, including the tests from Promethius labs to rule out Crohn's and UC. All biopsies taken during colonoscopies are ruled as non-specific colitis. I suffer from constipation mostly. Sometimes I get bloody diarrhea that is so painful, I spend half the time thinking I'm going to die and the other half wishing I would. Once the cramping starts, it doesn't go away for almost an entire day or night! Many times when it starts, I am unable to move anything for hours and then the diarrhea will finally start and eventually I will pass bloody mucous stools. I went to a world reknown Dr. who felt I may have intestinal endometriosis, so I underwent a hysterectomy where some endo was removed along with some adhesions, but not a whole lot going on in there. I no longer have my ovaries or my appendix. I also have skin conditions like sebhoreic dermatitis and hidradenitis suppurativa. My knees will ache as well as my jaw and gums during an episode. All Dr's agree that I have something wrong in my system, but none can figure out just what that is. Any ideas? Has anyone started off with non-specific colitis only to have it turn out to be Crohn's eventually? My colonoscopies show inflammation, patchy erythema, increased friability, edema and once during a bad episode, ulceration that was initially thought to be pseudomembranous colitis, but that was later ruled out. I would just like to know what it is I have??? Anyone???
 
Lisa 

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 11/17/2007 3:42 PM (GMT -7)   
if docs cant pinpoint what is wrong, i suggest you take what control you can and tweak your diet. i, and others, have found relief from pain and symptoms and discovered new health doing either the maker's diet or the specific carbohydrate diet. both are intimidating, but considering you are at your wits end perhaps you are ready to try something "extreme" and change your diet around in hopes of getting better. it took me to come to a similar point in my life, facing ostomy surgery, to give diet and naturo/homeopathy a try. all it costs is food which you have to buy anyway and this way you can feel like you are doing something while the doctors figure out what to do with you.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 11/17/2007 4:07 PM (GMT -7)   

Hello Lisa and Welcome to Healing Well,

It sounds like you have had every test known to mankind.  I would not even venture to guess as I have no idea.  I feel so bad for you that your not able to be diagnosised and yet your obviously in pain and have a legitimate disorder. 

It seems like your physician should ship your info to all the specialist in the field that he knows and see if anyone has any ideas?  How about Mayo Clinic?

Just a thought.  Please keep posting and know that I support you.

Kitt


 
Moderator Anxiety ~ Panic Disorders
*~* Not a mental health professional at all *~*
Dx: Anxiety/Panic, Depression, GERD, Osteoarthritis
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teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 11/17/2007 4:39 PM (GMT -7)   
Hi Lisa and Welcome, I agree with kitt, I think maybe you need to go to a mayo clinic. Hopefully
they can help you. My prayers are with you.
TBW
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/17/2007 4:57 PM (GMT -7)   
Hi Welcome to HW we are glad to have you here. Have they tested for glueton and dairy allergies.Have you had the capsule test done ?I cain't say what is wrong but what are they doing to treat you? Obviously you are having blood issues and pain so was wondering what you are getting to help you I used to suffer from pains as you have for hours I had a IBS DX for 27 years then CD, DX in Jan. I hope that they will eventually DX you unless they are saying you have colitis. Diet does help as suggested I follow low roughage diet to help with the pain issues. Best Wishes in finding out what is wrong .lol gail

mysterytome
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 11/17/2007 6:25 PM (GMT -7)   
I should have mentioned that I can go several months in between without an issue. In fact, this last one came after seven months of no problems. Now I've had two in the past month. I am going to see a world reknowned Dr. from Stanford on Dec. 3rd. This will be the second time I've seen him. I'm hoping he has some other ideas. They won't treat me unless they know what they're treating and the anti-spasmodics I've tried don't touch the cramping once it has started. I've been tested for gluton problems and have swallowed the camera pill. My problem is limited to the sigmoid colon and the rectum is spared.

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 11/18/2007 4:13 PM (GMT -7)   

Mystery,

I just wanted to offer my condolences because I understand how ridiculously frustrating it is to be getting sicker and sicker with no real answers.  If you've had scopes that show erythema, ulcerations, and edema, there's no doubt you have some form of colitis - has anyone mentioned the possibility of "collagenous colitis" or "microscopic colitis?" Have you gotten all of your physicians' records of your visits? 

I'm astounded by the fact that even though you have confirmed colitis, you have not had treatment other than anti-spasmodics.  You need to visit a major academic medical center for evaluation of this. 


Co-moderator - IBS Forum


mysterytome
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 11/18/2007 4:27 PM (GMT -7)   
Thank you. I do not have collagenous colitis either. After a recent hospital stay and my 5th colonoscopy, my family Dr. thinks I may have some rare genetic autoimmune issue that nobody knows of. What? It's just so hard to believe that in this day and age a person can have something and go un-diagnosed for so long. I just want to know what "it" is! I will see what Dr. Triadifilopolous has to say on Dec. 3rd when I go back to see him. It was originally thought that I may be suffering from repeated episodes of ischemic colitis, but the biopsies don't really resemble that either. The only thing anyone can say for sure is that I do have colitis of some type. It is definitely not IBS as there is inflammation and bleeding. Nice huh?
 
Lisa
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