My Story with Crohn's

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ThankULord7
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/5/2009 12:34 PM (GMT -7)   
Hey Everybody...I've been reading quietly for a while now, and I think I need to share my story to get some feedback (please). I'm a female, early 30s, and I've been dealing with a horrid lower right quadrant pain for several months. It was present, but not NEAR as bad about 4 years ago, and I had a colonoscopy, which was clean, other than a few scattered diverticuli. I've had several surgeries for adhesions/endo, and the adhesions just get worse and worse...involving my intestines and my colon. My question is this...could crohn's have developed in the 4 years since my clean colonoscopy? The flares are terrible, with excruciating pain right at and above my right hip bone. It also hurts down low in the pelvic area (on the right). When I eat nuts, I feel like I'm dying for a couple of days afterward. And if it were my small intestine, where would it hurt? I feel so alone and at a loss. My GP is great, and is willing to refer me wherever it takes. Until now, I've just been thinking it was more adhesions. But when I have an awful flare, it almost always involves diarrhea and rarely constipation. Once when I was constipated, I tried a fleet emema, and my right side burned SO BADLY afterward. I also get acid reflux during these times. Any and all advice is greatly appreciated. I'm scared...but at least I've figured out that it has to do with the GI tract. Anyone ever burn/hurt on the right after an enema? [img]/community/emoticons/shakehead.gif[/img]
God bless,

Renee

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 1/5/2009 12:41 PM (GMT -7)   
If nothing else maybe your GP should refer you to a gastro so as to rule out several things that it could be.  I am under the impression that just because a colonoscopy doesn't show crohns...that doesn't mean you don't have it...I thought it meant you just weren't active with it then.
 
A couple of years ago I read about a women who was having all sorts of pains and issues and nothing ever showed up on her x-rays or colonoscopies....this went on for several years....then they tried a test that was at that time very new....the pill cam.....and it showed a very minor tear or perforation in her small intestine....they did the required surgery and she was cured.
 
Good luck I hope you find some answers and then relief soon.
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


ThankULord7
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/5/2009 1:18 PM (GMT -7)   
Thank you so much for the reply! I'll get the referral. I didn't know that about not showing when inactive. Learn something new everyday! God bless.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 1/5/2009 1:28 PM (GMT -7)   
Colonoscopies don't show the entire digestive system or intestines. You can have undetected CD by bloodwork as well. Ie: My cd is rarely detected in my bloodwork, but ultra sounds and scopes show inflammation and narrowing every time.
 
It could also be a stricture.

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 1/5/2009 1:31 PM (GMT -7)   
again...I THINK that is the case.  I am pretty sure that many problems have occurred because crohns is not as easy as some diseases to dianose properly.  I think there is supposed to be a blood test that indicates crohns....but from what I have been told the doctors general diagnos based on what they see in the colon and where it is....
 
for me I was diagnosed by two seperate gastro's as having non-specific ulcerative colitis...then I went to another gastro and he was shocked thatthe other two had missed such an easy case to diagnos.....
 
My first gastro kept saying it was mostly diverticlosis and acid reflux....then the second guy said that about 60% of the population over 45 has some divertic and my acid tested normal or below....
 
I have been told by my current gastro that part of the delay in my diagnosis was that the scarring and ulcers were mostly in my small bowel and were not showing up in the large colon...any evidence of disease in my large colon was where you usually find UC so I got diagnosed as UC for the first couple of years
 
You really have to find a doctor who will work with you so as to get the correct diagnosis and then treatment
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


ThankULord7
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/5/2009 1:43 PM (GMT -7)   
Hspenser...with problems in your small intestine, where do you hurt?

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/5/2009 2:22 PM (GMT -7)   
Hi Renee I agree you should ask for more testing and something could show up in a scope since it has been four years since you had one. Also stay away from nuts if you find they bother you, I will not eat them at all now and better for it. It might hurt just about anywhere I had some right side pain before my resection that removed the cecum area and TI .Hope you get some answers soon and let us know how you are doing. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/5/2009 6:07 PM (GMT -7)   
And if you *must* eat them, chew them really well, or grind them in a food processor. Or try some peanut (or other nut) butter.

Ivy.
Co-Moderator Crohn's Forum.


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 1/5/2009 7:00 PM (GMT -7)   

My pain must have been classic.....because I described it on here and about ten people quickly responded that I was obstructed.

The pain started mostly on the right front side of my stomach above the belly button and would reach across the entire stomach almost to my left side.  The sounds or grumblings from my stomach at that time were much higher in pitch than normal.  The pain was crazy bad....it would make me physically sick to my stomach.  It would take several hours for it to pass.  Two or three times th epain was so bad I was practically hallucinating.


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old

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