Update on my Pillcam from a couple weeks ago

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onebloodonelife
Veteran Member


Date Joined Feb 2006
Total Posts : 842
   Posted 9/12/2008 8:35 AM (GMT -7)   
I had the Pillcam done on the 25th of August, and finally got the results earlier this week. Apparently, my disease is no longer contained to the terminal ileum, but has moved in patches through my entire small intestine. The nurse told me they found linear ulcers and such all over. I guess I was sort of expecting that, since I have been experiencing all of my usual symptoms, along with some newer ones, like constant nausea. I'm actually close to considering surgery, something that I've never even allowed to cross my mind before, but I'm not sure how well that would work with the patches all over instead of in one area. Either way, not a good way to start out my sophomore year in college.

So, I'd been on Humira weekly since June, and my GI wanted to try doing some "booster shots" and see if that helped at all. I did 2 on Tuesday and will do 2 more this coming Tuesday, then see him in clinic next Friday. The shots on Tuesday went alright, but still no relief at all. Based on all of my past biologic experiences, if I don't see any improvement in the next day or so, I probably won't at all, but I'm still hoping it will.

Hope everyone else is doing well and has quiet tummies for now! :-)
Crohn's Disease for two years and counting (diagnosed March 8th, 2006)
Imuran: no more! Got the GI's okay to stop taking it :)
Humira: once every week temporarily (hoping to stop a flare)
Dicyclomine and hyoscamine for intestinal cramping and spasms
www.myspace.com/onebloodonelife


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/12/2008 9:36 AM (GMT -7)   
I am so darn sorry to learn of your results from the PCE, OneBlood!!!! (((hugs)))
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 9/12/2008 5:30 PM (GMT -7)   
too bad :0(.. but now at least you know.
randynoguts 



     http://www.geocities.com/randynogutsweb/


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/12/2008 6:03 PM (GMT -7)   
Hi I am hoping the Hum. will bring you some relief and help you get better. What is your Dr. saying if it doesn't help? I sure know what you mean thinking surgery, did your dr. mention surgery? Hopefully you"ll heal in there. Hoping for the best. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 9/12/2008 6:12 PM (GMT -7)   
I havent really noticed any difference at all since being on Humira. But my GI said that Humira is more so to try prevent the Crohns from coming back, not to actually heal it.  Although he did say it has improved since Ive been on it, but the only way to get rid of it is to have another resection (which is on the 19th). My surgeon said they were not only removing the active 5 inches of Crohns that they found during my colonoscopy, but they were also going to put a catheder all the way through my intestines to catch any other problems and remove those as well. So perhaps surgery would be a good option for you?  I too was anti surgery, but I'm sick and tired of all the meds I'm on not working, so hopefully the surgery+meds will do the trick. Goodluck to you!
Dianogsed with Crohns at 16, 21 yrs old now.
Surgeries:1 Bowel Resection, Gallbladder Removed. Another Resection Scheduled for September.
Current Meds: Humira (weekly), 65mg Pred, Levbid, Nexium.


onebloodonelife
Veteran Member


Date Joined Feb 2006
Total Posts : 842
   Posted 9/13/2008 7:12 AM (GMT -7)   
CrohnieToo said...
I am so darn sorry to learn of your results from the PCE, OneBlood!!!! (((hugs)))


Thanks!

randynoguts said...
too bad :0(.. but now at least you know.


Exactly, and that's pretty much how I've always felt about it too. Yeah, it sucks that it's back, but now I know for sure it's the Crohn's and not something else.

gachrons said...
Hi I am hoping the Hum. will bring you some relief and help you get better. What is your Dr. saying if it doesn't help? I sure know what you mean thinking surgery, did your dr. mention surgery? Hopefully you"ll heal in there. Hoping for the best. lol gail


Well, I haven't talked to him specifically yet. I've only spoken to a nurse, and she didn't give any indication about what he was thinking if it didn't help. I see him on the 19th though, so I'll find out soon enough I suppose. He hasn't mentioned surgery before, but this is also the first time he's been treating me through a flare. He started out as my GI while I was away at college, and I've been seeing him exclusively for a year now, but when I first started seeing him, the decision to get on Humira was already made, so really, this is the first time he's seen me in a flare.

MAG102886 said...
I havent really noticed any difference at all since being on Humira. But my GI said that Humira is more so to try prevent the Crohns from coming back, not to actually heal it. Although he did say it has improved since Ive been on it, but the only way to get rid of it is to have another resection (which is on the 19th). My surgeon said they were not only removing the active 5 inches of Crohns that they found during my colonoscopy, but they were also going to put a catheder all the way through my intestines to catch any other problems and remove those as well. So perhaps surgery would be a good option for you? I too was anti surgery, but I'm sick and tired of all the meds I'm on not working, so hopefully the surgery+meds will do the trick. Goodluck to you!


Humira did put me into remission for 9 months or so, the longest I've had since being diagnosed, but it tends to be the trajectory of my disease to quit liking whatever meds I'm on around a year after starting them. I have extremely refractory disease, I've been told. But, I don't know, maybe surgery would be really helpful. My biggest fear is to finally have surgery after not considering it for so long, only to have active disease come back quickly afterwards. But, on the other hand, I could have a pretty long remission, who knows?

Good luck with your resection!
Crohn's Disease for two years and counting (diagnosed March 8th, 2006)
Imuran: no more! Got the GI's okay to stop taking it :)
Humira: once every week temporarily (hoping to stop a flare)
Dicyclomine and hyoscamine for intestinal cramping and spasms
www.myspace.com/onebloodonelife


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/13/2008 8:12 AM (GMT -7)   
If Crohn's is all thru the intestine as you were told, the odds of any lengthy remission are drastically reduced. *sigh* Talk it over thoroughly w/your gastro and the surgeon and good luck and God bless. Plus a few more (((hugs))). Hard decision to make. Very hard.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 9/13/2008 9:57 AM (GMT -7)   
One blood - that's really tough news for you. Here's a big (((HUG))). Hopefully whatever your decision is, it will give you some long-term relief. You deserve it. Please keep us updated.

Bev
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