Crohn's is back need help!!

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sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 81
   Posted 6/18/2011 12:48 AM (GMT -6)   
Hi it's been about a year since my ileostomy surgery and I just found out that I have thickening in my intestines (Crohn's ) . I am back on 30 mg of prednisone and getting down and out about my disease coming back after a wonderful painfree year with my ileostomy. Anyone have this issue to after surgery?
Diagnosed in 2004 with Crohn's disease. Resection in 2009. Have tried almost every medication and nothing has worked. Total proctocolectomy June 16, 2010

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 6/18/2011 10:17 AM (GMT -6)   
Sno, I am so sorry to hear this....YIKES....I have a nephew and niece that both have chrohn's disease. The boy has it worse than the girl. If the boy does not improve on remicaid, then they are considering a bone marrow transplant.
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia.
June 20, 2011-I will have a total colectomy, hernia repair, tummy tuck, and end ileostomy. I will keep my rectum since it is healthy.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 6/19/2011 3:42 PM (GMT -6)   
Hi, I have Crohns and had an ileo done 20 years ago and yes I have had several flares since then. I went onto azathioprine in 1995 and this has helped to dampen down the flares and only stopped it nearly 2 years ago on advice of GI as had been 6 years in remission. Unfortunately, my CD woudn't stay in remission without medication so after very nasty flare last autumn am currently back on azathioprine which I will continue for life and also Humira which will only be for up to 12 months.
 
With CD having an ileo isn't a cure, it can come back in the small bowel. I would suggest you see how you go with the steroids and if they get it under control great if not then have a chat to your GI about starting a permanent drug regime. CD can continue to develop slowly with no initial symptoms on a micro level then hit you suddenly with a bad flare so taking a drug continually isn't a bad idea to keep it all under control rather than trying to get it back into remission after flare has occured.

rita5287
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 6/19/2011 9:56 PM (GMT -6)   
I'm so sorry for that news. I had colitis n my total colectomy cured it!! Chrons is a terrible disease. I'll pray for u. God bless
Diagnosed w/UC 4-7-. Went from proctitis only in rectum to full pan colitis. No Meds have worked,Been hospitalized 3xs n 5 mnths. Have Gastritis also. Current Meds: pred 20mg 7days tapper to 5mg. Nexium 40mg. Xanax1mg.had proctocolectomy on 5/26/11. Went really well despite code blue! Healing now. Ostomy is gonna take sum getting used to! Nxt surgery n 3mnths!

sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 81
   Posted 6/19/2011 11:17 PM (GMT -6)   
Thanks everyone for your comments and prayers! I am a little bummed about my flare and I have taken everything from Remicade to Humira to 6mp to experimental drugs and nothing helped that is why I opted for an ileostomy because I was desperate for relief. Now that its back I have no idea what's left drug wise for me other than steroids:(
Diagnosed in 2004 with Crohn's disease. Resection in 2009. Have tried almost every medication and nothing has worked. Total proctocolectomy June 16, 2010

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 6/20/2011 7:23 AM (GMT -6)   
Sno, I am sorry to hear this news, and I worry about the same thing for myself -- I have also taken 6MP (couldn't get up to the right dose, due to liver function issues), remicade, cimzia, antibiotics, humira, etc. I had the surgery because steroids were the only drugs left, and even they didn't always work that well. Fortunately, now the docs are thinking I'm more likely to have UC than Crohn's (was the reverse for the last several years).

Did you have small intestine issues earlier?

I hope things get under control soon and your gi doc figures something out....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 6/20/2011 3:03 PM (GMT -6)   
Just because the drugs didn't work before doesn't mean they won't now. I have the ileo as colon was so badly damaged that no amount of medication was going to get it into remission but now with just the small bowel it is held in remission by medication. Talk to your GI about starting the immunosuppressants again and see if they help, just remember that some can take 3 months to start to work so may need to keep on steroids until then.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 81
   Posted 6/20/2011 10:00 PM (GMT -6)   
Before my total proctocolectomy I had a resection that was called an ileocecetomy which involved taking the section out where your large and small intestine meet. I don't think I've ever been disease free in my small intestine but my colon was completely diseased after a flare up following my resection so it had to go. I don't regret surgery because I'm still much better off than I was I just have a minor flare now. I was just put on 30 mg of prednisone and I know I will soon blow up!!! This disease sucks!!!
Diagnosed in 2004 with Crohn's disease. Resection in 2009. Have tried almost every medication and nothing has worked. Total proctocolectomy June 16, 2010

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 6/21/2011 1:51 AM (GMT -6)   
sno
This is my greatest fear too, that the crohns may come back, for me so far so good and its been 2 years. I am really sorry to hear your news and hope you get on top of this nasty disease soon. Take care and wishing you well
Doreen

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 6/21/2011 7:15 AM (GMT -6)   
Sno,

Yes, this disease does suck!!!! I hope the flare stays minor and that you can get off the pred soon. Hang in.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery
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