newly diagnosed crohn's

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goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 2/19/2009 2:03 PM (GMT -7)   
I'm really hear to vent as I'm having a difficult time accepting all of this...here is my story: diagnosed with UC in 1991 at age 23...had a very acute case...tried all the usual meds at that time(rowasa enemas, asacol, prednisone)...nothing kept me in remission....hated the steriods and was quite depedent...kept getting worse and had the jpouch procedure 1 1/2 years later as I was so ill and going to lose my bowel anyway...I was told that I definitely had UC and the biopsy confirmed this after the surgery...the surgery was uneventful...had a great recovery....had it in 2 stages....ate anything and everything after that an tolerated it all...5 years after the surgery I started with pouchitis (inflammation in the pouch)...no big deal as it was easily treated with bactrum....the pouchitis however became chronic and I've been on antibiotics consistenly since ... the pouchitis has been tolerable and a lot easier to live with then UC....in the last 3 years however, I have been getting progressively worse as I am becoming resistant to the antibiotics and my inflammation from the pouch is now above the pouch at the ileum...prometheus test has now confirmed or says it is consistent with crohn's....crohn's!!!!??!!!....after almost 17 years I now have crohn's?!....how can that be?...well apparently you can have UC and then get crohn's...lots of people out there like myself I hear and see on the boards...now I don't regret the jpouch procedure b/c I really had no choice at the time and I've have a good quality of life up until now...but crohn's is a whole different ballgame and pain...I'm currently on 9mg of entocort, 500mg of cipro 2x daily, 500mg of flagyl and just started imuran...13 days into imuran with the hope that it will work and I can get off the other meds...can't take pentasa b/c I had bad nausea and diarrhea from it...liver functions on imuran after 10 days have become elevated...guess I'm only 10points over the norm...doc retesting to see if it continues to rise...now having upper abdominal pain where my gallbladder used to be...having an MRI tomorrow of my liver, pancreas, colon...very frustrated as I think I need to get off of the flagyl as I am now having tingling in my hands and feet...now I have had this in the past as I have a fused neck and carpal tunel but I don't want to take a chance and risking neuropathy...feeling crappy and know that without the flagyl in the mix I am going to get worse...I need to be able to hang on until the imuran kicks in but I don't think I can and now I know he is going to start me on prednisone!!! I hate that stuff...the moon face, mood lability, etc...haven't been on it since I lost my colon...and if I can't take imuran, I will need to choose b/w remicade and humira...love such high powered drugs with such awful side effects...why is everything a trade off?...I know I need to accept this and move on like I did with the UC however unlike UC there is no crohn's cure and all I feel is pain and sick right now...hopefully tomorrow will be better...sorry this was so long...thanks for listening...

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/19/2009 3:16 PM (GMT -7)   
Actually CD cannot turn into UC nor can UC turn into CD...you were either misDX as having UC (when you actually had crohn's colitis which is simply CD affecting the colon) or you're one of the very unlucky 2% of patients that has both UC and CD, but one does not turn into the other, they are 2 seperate entities.

I have crohn's colitis as well, since 1991 (the last 18 yrs straight with no full remission), surgery is a "cure" (getting your colon removed) for true UC, but not for crohn's (crohn's colitis), when you have crohn's colitis and get your colon removed then the CD will start to affect other parts of the GI tract because CD involves the entire GI tract from mouth to anus, but UC is limited to the colon/rectom only. And that's why UC cannot "turn into" CD or vise versa.

I've also read and heard many times that the j-pouch works better for UCers than it does for CDers because of the fact that CD can affect the entire GI tract and more than one area at a time and that the j-pouch with CDers gives higher incidence of reoccuring pouchitis compared to a UCer that gets the j-pouch.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 2/19/2009 4:14 PM (GMT -7)   
I think there's a lot of research now indicating Crohn's as an evirnmental and diet related illness, and not just some genetic, unlucky lightning strike from the gods. I don't want to make assumptions, but I know how many little debbies I had in high school and regret my addiction to sugar (I'm working on it), but there has to be a connection.
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 2/19/2009 4:22 PM (GMT -7)   
i am sorry to hear you are so sick :(
I would just like to tell you that is was first DX with UC and i always thought if everything fails i can always have my colon removed. But in December i was DX with CD and i was really sad because the cure i had in mind went away :(

But now i am on Remicade and i was so scared of it :S but i now have had 3 infusions and all went great and i feel better :) I know remicade is really strong and has many side affects but if i feel better and i am willing to take what comes my way, i basically have no choice.

I just wanted to wish you all the best and hope you will be feeling better soon..
24 year old female
Diagonsed with Crohns disease in December 2008..
Medication - Asacol, Remicade, Entocort


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 2/19/2009 4:33 PM (GMT -7)   
I wish this was diet related...I have tried eliminating milk, sugars, etc....I'm thinking of trying acupuncture and chineses herbal medicine...I'll try anything at this point...I personally believe that UC and CD are the same disease...

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/19/2009 6:57 PM (GMT -7)   
In a sense they are, the umbrella term being IBD, but they differ enough from one another to make each it's own entitiy...Besides the above mentioned differences I mentioned, CD can affect the many layers of the intestinal lining, UC is limited to the surface of the lining only with inflammation...also with UC the entire area will be inflammed, with CD the inflammation has skipped patterns with healthy tissues in between inflammed tissues, with CD fistulas can develop because the inflammation can go through the many layers of the intestinal lining and because this doesn't happen with UC, fistulas don't occur in UC patients.

Diet can certainly be a trigger, certain things are known to definitely exacerbate IBD symptoms according to research...caffeine, animal fats, refined sugar, artificial sweetners (with sugar alcohols being the worst, anything ending in "tol", sorbiotol, zylitol, ect), processed foods/beverages, fast-foods, addities/preservatives/MSG's...and smoking, including second hand smoke is one KNOWN trigger for crohn's, yet it's an aid to UCers so there's another difference between UC and CD, just because you want to think UC and CD are the same, doesn't make it so.

And as researchers assume, it likely is a combination of environmental triggers (mentioned in the paragraph above) to actually bring out either of the diseases.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/19/2009 7:06 PM (GMT -7)   
i was diagnosed 20 yrs ago at 15 with Crohn's...This year after a colonoscopy made my dr. think differently and the promethius test pointed to UC I guess my diagnosis has changed...
weird that it took 20 yrs...
hope you start feeling better soon!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 2/19/2009 7:09 PM (GMT -7)   
The promethius test is not 100%...do you have skipped patterns of inflammation or is the entire area inflammed? How deep does your inflammation go? Do you have inflammation anywhere in your small intestines, any anal inflammation (not the same as rectal)?

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 2/19/2009 7:15 PM (GMT -7)   
Hello Goldy,

I am sorry you are feeling so poorly. I took flagyl for many months after two of my abscesses. I got the numb toes that at the same time were tingly and then hyper-sensitive too. I stopped the flagy and the peripheral neuropathy slowly reversed itself over several months. Then I got another abscess over a holiday weekend (of course) and knew I couldn't see my doc for three days. I had some flagyl left over, so I started taking it even though they say not too once you have gotten peripheral neuropathy. Sure enough, within a day and a half I could feel the symptoms returning. They went away within two weeks of stopping it. I won't take it again even though I think it saved my life when I was so very sick with cellulitis.

Imuran takes several months to start being effective. Also, I have read posts from many people who have had good experiences with Remi and Humira and have had few side effects.

I hope you get relief soon!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

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