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Crohn's Disease
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Posted 9/4/2009 2:00 PM (GMT 0)
Well I made the trip to Cleveland Clinic and was not really impressed. I guess I am hoping for a magic wand but arent we all. I basically have 3 options 1) Cimzia (I am unable to take Humira, Remicade, Imuran or Tysabri) They dont think the Cimzia will help much as Humira didnt...2) Drug trial for Ustekinumab at Cleveland Clinic I dont have the details yet they were supposed to call me early this week and havent yet. From what I can tell looks like 1 in 4 chance of getting the placebo 3) Surgery to remove rectum and sigmoid.

I am ready for the surgery! Tired of the drugs I have been on many of them and had alot of hospitalizations etc related to the meds and allergic reactions etc.

The thing that bothers me is I have had Crohns for 15 years and all but maybe one showed that the disease is rectal and sigmoid no small bowel etc.

I know that I am very lucky not to have a severe case of crohns but to me its severe...I constantly have blood and mucus drainage and am missing work alot, feel horrible, weak all over etc Im just plain tired of it

I make a trip back to Cleveland for another Colonoscopy next week. I am thinking maybe I should try Mayo Clinic before I do anything else???? Any thoughts out there

Thanks in advance

JenG

Posted 9/4/2009 10:24 PM (GMT 0)
I think I'd be thinking surgery too, Jen. There comes a point when enough's enough, really.

Please don't belittle your illness: rectal Crohn's is incredibly hard to cope with, and really affects quality of life more than Crohn's in some other parts of the GI tract, imho.

I can't give you any advice about Mayo, sorry. Maybe one of our American members can help.

All the best,

Ivy.
Posted 9/4/2009 11:36 PM (GMT 0)
Newsflash, Jen. If you are a candidate for having part of your guts removed, you DO have a severe case of Crohns.........

That is all,

General Colon Bowel
Posted 9/5/2009 12:02 AM (GMT 0)
Well thanks for the newsflash I guess I should have clarified further. I am tired of these GIs telling me they have seen worse and they do my scopes and say that they expected worse and then Cleveland did a CT scan and said there is a disconnect between the symptoms I have and the results again, they expected worse on the CT. The CT showed rectal sigmoid crohns colitis. So now I am having yet another colonoscopy next week at Cleveland. Its just all frustrating to hear.
JenG
Posted 9/5/2009 12:12 AM (GMT 0)
I wish we could find a set of doctors that actually have Crohne's so that we can get the care and guidance we need. Ma'am with all due respect your situation sounds awful and the surgery sounds like the best bet, I wish you good healthy times :)
Posted 9/5/2009 3:12 AM (GMT 0)

bella_sky said...
I wish we could find a set of doctors that actually have Crohne's so that we can get the care and guidance we need. Ma'am with all due respect your situation sounds awful and the surgery sounds like the best bet, I wish you good healthy times :)

pure genius!!!!!!!!
Posted 9/12/2009 4:27 AM (GMT 0)
I often wish that I had a GI and a surgeon who had actually been through what I have.  Trust yourself is what I say.  Every time I've had surgery the surgeon is surprised at just how messed up I actually am.  This last time immediately following both a Small Bowel Follow-Through and a CT Scan.  What was seen was active inflammation and a stricture.  What was not was a fistula and the fusing of my small intestine to my abdominal muscle...so there you go.  If you feel bad, you just might be...
Posted 9/12/2009 2:12 PM (GMT 0)
I agree with kandc88, everytime I have had surgery things are always worse inside than the tests show. Big hugs to you!
Posted 9/13/2009 4:54 PM (GMT 0)
bella_sky, my GI DOES have Crohn's!  He has had it for like 30 years or something, so he knows his stuff.  I've had docs with much better personalities/bedside manners, but he knows what he's talking about and he takes the meds himself. 

Wakabo, I really can't respond on the surgery, as I haven't had to deal with that, but I was told that just because Humira doesn't help doesn't mean that Cimzia won't either.  Both kept my Crohn's in remission so I can't really say, but I'm sure there are others who failed Humira but were helped by Cimzia. 

I was also on a clinical trial (for Cimzia before it was on the market) but it was a phase III so they started everyone out on the real thing.  After so many weeks, if you responded, they then put you in either the placebo group or the control group (real drug).  So, it was a 50% chance.  They wouldn't tell you which one you were in, but if you lost response after a few weeks, they would start giving you the real drug again.  I ended up in the placebo group, lost response and was then given the real drug for the rest of the trial (and they aren't supposed to tell you, but I either saw something or one of them made a sneaky comment that confirmed that I was getting the placebo for the few weeks).  So, look into the specifics if you are considering doing a trial...you may be able to get the real drug if the placebo isn't helping.  

Posted 9/13/2009 9:47 PM (GMT 0)

Wakabo said...
Well thanks for the newsflash I guess I should have clarified further. I am tired of these GIs telling me they have seen worse and they do my scopes and say that they expected worse and then Cleveland did a CT scan and said there is a disconnect between the symptoms I have and the results again, they expected worse on the CT. The CT showed rectal sigmoid crohns colitis. So now I am having yet another colonoscopy next week at Cleveland. Its just all frustrating to hear.
JenG

May I ask what sort of pain you have in the rectum area...I had this nearly five years ago (they thought it was Proctitis at the time) and the pain put me on my back for nearly 18 months (mostly because of pain meds). I doctor (GP) told me that this is one of the worse pains there is as there are loads of nerve endings in the rectum....If you have that sort of pain then I can really empathise...Also the doctors I had back then (when they thought I had UC) were useless...absolutely useless...I am lucky in that i have a new team looking after me now at a different hospital.

Good luck, I hope you get the care you deserve...I'm no expert as I am newly diagnosed with Crohn's and trying to get my head around this disease, but hold off on surgery until you have left no stone unturned.

Take care
(((Hugs)))
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