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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Humira after Total Protocolectomy


07-13-2010, 04:08 PM   #1
CDDad
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Humira after Total Protocolectomy

I just got back from my GI. I had been procrastinating about going to see him. My surgery was 3 months ago, and now that my colon is gone, I was wondering what drugs he would want me on.

Well, due to my history of severe Crohns, and a surprise small bowel rupture last year, he wants me back on Humira. My problems in the last few years have all been colon related.

I am feeling fine now with no Crohns symptoms.

What are your thoughts or experiences?
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-Joe
Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
07-19-2010, 09:37 AM   #2
acg101
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Hi Joe - I hope all is well. As you know I have been on most meds including Remicade and Cimzia. Now 9 days post op I met with my surgery team to discuss the surgery report and outcomes. The colon was all but destroyed and hardly provided any benefit. One of the preliminary lesson learned was about the side effects of the anti TNF meds which created havoc on my 'system'.
I am not sure why would they put you on Humira now that your colon is gone? did they detect Crohn's in your small bowel?
In my case the Cimzia 'healing' was so effective that once my body detected inflimation, with the Cimzia's help it promoted rapit healing , BUT in effect it caused severe adhesions.
On another note I need your help in finding a WOCN nurse. I had one visit last week but she was not well informed.

BEst
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-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
07-19-2010, 10:51 AM   #3
Jerman
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ccDad,

I am so happy for you that you are doing better. Here's hoping you are on your way to a much better quality of life and lots of happy times.
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07-19-2010, 02:54 PM   #4
CDDad
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Thanks Jerman.

Dan - I don't have active small bowel involvement, but I did have a mysterious small bowel rupture in '09. My GI thinks it was Crohns related. I wonder if it was caused by my small bowel being moved around during my 1st colon surgery in '08. Just don't know. My last small bowel series was normal if I recall.

I also have a history of Crohn's in my duodenum and stomach. It seems to be controlled by Protonix and has not bothered me in 20 years. For the last 15 years, it's been all colon problems.

As for the WOCN, I used Beverly Phillips at Hunterdon Medical Center. She was very nice and knowledgable. But try the WOCN locater:

http://www.wocncenter.com/public/member_directory.cfm

Search by "NJ" and Area of Practice "Ostomy" and it will list all the WOCN's in NJ. It would be nice if it would list the WOCN's in your area by your zip code, but it does not seem to do that.

Last edited by CDDad; 07-19-2010 at 02:56 PM.
07-19-2010, 02:54 PM   #5
thefreeaccount
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One of the preliminary lesson learned was about the side effects of the anti TNF meds which created havoc on my 'system'. In my case the Cimzia 'healing' was so effective that once my body detected inflimation, with the Cimzia's help it promoted rapit healing , BUT in effect it caused severe adhesions.
Odd...was that something specific to TNF antibodies, or did your doc think it was related to immunosuppression in general?

Last edited by thefreeaccount; 07-19-2010 at 02:58 PM.
07-19-2010, 05:23 PM   #6
acg101
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Odd...was that something specific to TNF antibodies, or did your doc think it was related to immunosuppression in general?
They believe It was specific to TNF - had to do cell signaling for the healing process
07-19-2010, 07:40 PM   #7
acg101
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[QUOTE=CDDad;203775]Thanks Jerman.

Dan - I don't have active small bowel involvement, but I did have a mysterious small bowel rupture in '09. My GI thinks it was Crohns related. I wonder if it was caused by my small bowel being moved around during my 1st colon surgery in '08. Just don't know. My last small bowel series was normal if I recall.

I also have a history of Crohn's in my duodenum and stomach. It seems to be controlled by Protonix and has not bothered me in 20 years. For the last 15 years, it's been all colon problems.

Joe - If your duodenum and stomach have not bothered you in 20 years why would they put you on Humira? especially if the Protonix (which typically work by reducing the amount of acid in the stomach) is keeping it under control? Compared to the TNF's which work on the inflammation mechanism signals and carries considerable possible long-term side effects.


BTW I am sure Bauer looked at he entire small bowel while performing the surgery.
07-19-2010, 08:16 PM   #8
CDDad
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Yeah, I agree. I just hate to not listen to my doc. He is the doc after all. I would like Dr Present's opinion. I tried emailing him through his website a few days ago, but have not heard back yet. I thought I would be done seeing him once my colon was out, but then this question came up. What to do??
07-19-2010, 08:42 PM   #9
acg101
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Yeah, I agree. I just hate to not listen to my doc. He is the doc after all. I would like Dr Present's opinion. I tried emailing him through his website a few days ago, but have not heard back yet. I thought I would be done seeing him once my colon was out, but then this question came up. What to do??
I will send you a private msg with best way to contact him.
I have learned to listen to my body and be as informed as one can be. Its ok to say no... let's try this or that (like the time you said no to the ng tube in the hospital and survived). He BTW does not like to be challenged AT ALL.

Before getting on TNF I would explore other avenues. They prescribe it way too easy and too often. Another great Dr is James Georges, more treatments-agressive than Present.
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