what meds are there for illeo paitents with CD?

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mincon
New Member


Date Joined Oct 2010
Total Posts : 8
   Posted 8/12/2011 3:09 PM (GMT -6)   
I recently visited a new GI. dr. office to ask him some questions and test the waters. I am searching for a new GI one that I might like,  Imagine that? I have not had good luck where I live with doctors. At the appt. he said his plan of action for me would be to get a CT scan and possibly start on Humira as  a preventative measure. I left there more confused than ever. First off I really don't have symptoms that warrant a CT or a biologic medication. I have a little bit of arthritis and some mild fatigue but that is about it. Anyway has anyone ever had a CT when they feel quite well and started on a medication as a precautionary measure? Actually last year when I was deciding wether or not to get the Jpouch which would have been risky with CD but almost decided to do it. Four different GI dr's said there were no medications that would prevent a flare so I should not get the JPouch. My thought was to get the Jpouch and go on a medication to prevent getting sick again and they said no such medicine exsisted. Maybe this Humira is a new finding that it prevents a flare or maybe this dr. thinks it will but now that I am living with an ostomy I am not as open to being on meds. Of course if I have to, I will,  but just not sure it makes sense to me right now. Please tell me your thoughts. Maybe I am being difficult and should just follow drs' orders?  Thanks for your insight.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/12/2011 5:17 PM (GMT -6)   
Where is/was your disease located? Do you still have your colon? What was the reason for your ileo?

If your doc's said you were a j-pouch candidate I am going to assume you only had colon involvement...and in that case, j-pouches are certainly an option. Unfortunately, the data isn't more than a few years out, so long term success isn't known at the time.

I did take meds when I had a loop ileo and still had my colon (which was diseased) but haven't been on any meds since I had my proctocolectomy (knock on wood).
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

mincon
New Member


Date Joined Oct 2010
Total Posts : 8
   Posted 8/13/2011 9:06 AM (GMT -6)   
I had a proctocolectomy also. Well in two stages, first they took the colon then 5 months later took the anus and rectum. I am just confused on why this dr said to take humira as a preventative med. when dr's a year ago said there were no preventative meds out there. And is it worth it to take it as a preventative drug what if I never even need to take another drug in my life. ? So since your proctocolectomy you have been drug free? How about symptoms do you have any?
Thanks.

mincon
New Member


Date Joined Oct 2010
Total Posts : 8
   Posted 8/13/2011 9:08 AM (GMT -6)   
reason for my surgery was my colon was shot , no disease in the small int. at all so far. knock on wood.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 8/13/2011 12:06 PM (GMT -6)   
Think you need to talk to your GI again and ask if it is def CD or possibly UC and if it is CD why he thinks good idea so you know in your mind why he is recommending meds. I take azathioprine which is an immunosuppresant to keep CD in remission and it has done very successfully for many years. Only had flare last year when I stopped it as had been in remission of 6 years as GI felt maybe could cope without it. Bad idea. Now back on it and also took Humira for 6 months (stopped that due to horrendous side effects) and back in remission.

A lot of GI think even if your colon is the only part affected and that is removed and you def have CD and not UC then preventative medication is good idea as CD can work at a microscopic level and take many years to cause a flare that you would notice but as it has been left for so long without treatment it can take long time and major meds to get it back into remission.

I only know what my CD is like and that is if it is left to it's own devices then it will misbehave very quickly and so that is why I will always have to take azathioprine for life. It keeps my disease under control.
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.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/13/2011 4:25 PM (GMT -6)   
I have a similar diagnosis to you and similar surgery, and my GI says that the side effects of these heavy medications are probably more of a concern than the risk of disease at this point. Humira is pretty extensive for just prevention, IMO...but you should wait for a dr to decide that. If you're not happy with this dr, keep looking!!!

I love my GI, though he's 45 min away. But it is WAY worth the drive.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Lovetoski
Regular Member


Date Joined Jul 2011
Total Posts : 128
   Posted 8/14/2011 12:39 PM (GMT -6)   
Hi,
I had my loop ileostomy done just a month ago. I'm lucky enough to have one of the best gastroenterologist team in the uk. I was on humira up to the surgery, but I have been told to stop now. So I think starting humira as precaution is a bit drastic. If really needed why not start on pentasa & co.
38 yr female living in the UK, originally from Austria
diagnosed in 2002 with Crohns which has since spread throughout the large colon and to the rectum; meds: Pentasa and optional Pred until Aug 2008; now on Humira, temp ileostomy on 7/19
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