scope results... not good

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sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 7/8/2010 7:14 PM (GMT -7)   
Well, I guess I can't say I'm surprised. But it's always depressing. My entire left side down into the rectal area is one gigantic ulcer. I'm quitting the mtx, doc said to. Cimzia's pretty questionable too. Now I suppose there's nothing much left unless I try TPN. But, all that's going to do is buy me a couple of months while I'm on bowel rest. I figure once I go back off it, the disease picks up where I left off.

So, I guess it's time to pop over to the ostomy forum. :-( Terrified and so sad...
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/8/2010 7:27 PM (GMT -7)   
:-( Oh, Shari.

If only you still had access to Prochymal :-(.

I'm really sorry. You've been through so much and tried so much: you deserve a long, happy remission.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 7/8/2010 7:58 PM (GMT -7)   
OMG, that sounds so painful for you. I don't know, sometimes I think if things get too bad for me, I'd tell them to take the diseased stuff out already. I'd rather live with a bag than all the pain and time on the toilet. I hope you get some relief soon. Sounds like you could use a break. Keep us posted.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux, wellbutrin
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 7/8/2010 8:45 PM (GMT -7)   
I think they just started enrolling in a prochymal trial again for Crohn's. www.genengnews.com/gen-news-highlights/osiris-restarts-phase-iii-prochymal-trial-in-crohn-disease-following-interim-analysis/81243389/

Since you had such good results with prochymal, maybe you can see if you can participate in this trial, and get the actual drug. Long shot though, huh?

If that doesn't pan out, I think you're right about surgery. While the ostomy sure is daunting, if it gives you a remission, it maybe totally worth it. It may give you your life back. Knowledge is power, and I guess learning as much as you can about how to manage an ostomy is going to prepare you for this possible eventuality. But I do think your quality of life is going to be much better if you get the surgery; and from reading posts from ostomates, it sounds like you get used to it, and it actually makes crohn's more manageable. Of course, this is all hearsay, but I sure hope it's true . . . I am pretty certain that one day my husband is going to be here as well.

Good luck to you Shari. If you do end up going with surgery, I wish you a long long long remission.

((Hugs))

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 7/9/2010 5:27 AM (GMT -7)   
Geeez sr,,,sorry to hear that ,,,what does your GI suggest ?
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


minou
Regular Member


Date Joined Jan 2005
Total Posts : 140
   Posted 7/9/2010 5:52 AM (GMT -7)   
I got similar news a few weeks ago. My scope showed that the Humira really isn't working. My two options are Remicade or an ostomy. Not sure if I want to go the Remicade route... my husband and I were hoping to start a family. Decisions, decisions...

Stay strong. And think of all the wonderful food you'll be able to eat with an ostomy!

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 7/9/2010 11:34 AM (GMT -7)   
Thanks guys... The GI said an ostomy would be a good decision at this point. I see him for a follow-up visit on 8/3. I just called my surgeon and scheduled an office visit in for 7/21. They will also refer me to an enterostomal nurse who will educate me (though I've already received the info packet complete with sample bags, etc.) I am terrified of an ostomy, even if it's temporary, which is probably just based in fear of something unknown and "different." But, every day I have a 100 degree temp, too many times I've had what I call a "crohn's moment" (accident), relying on pain meds... But I won't know (really) how I feel about the ostomy option unless I try it.

Plus I've got a daughter, nearly 13. I'd like to stop having to worry each competition - wearing depends "just in case" when she competes for sports and the start time is 8am or 11am for that matter!

PV - thank you SO much for the Prochymal information. I just spoke to Linda at Osiris. They are starting up the same trial (603) again. This is great news! but, since I've already participated in "603" I cannot enroll again. (makes sense, no matter if it's sad) The good news is that they are moving forward with an excellent safety profile and they've removed a dose arm. They are about 2/3 of the way through the trial, and with a fast track designation, I can only hope that will allow me to reverse an ostomy at some point.

I will go check the clinical trial site (.gov) but since I have the latent TB (treated for a year back in 1990) I am ineligible for most trials. :-(

Thanks for your support. This is going to be hard. I feel like I need to blindfold myself and just move forward without looking at the result. Otherwise I might scare away. Can I keep on living with this as the norm? Maybe, but only with pain meds. And, at what point do I say, enough?...

Ah, it's Friday and it's sunny and hot in the pacific northwest. I should put this aside and be happy!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09

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