My introduction (& surgery - ugh!)

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OCTim
New Member


Date Joined Jul 2009
Total Posts : 6
   Posted 7/16/2009 10:35 PM (GMT -7)   
Hello all,
 
I have read these forums from time to time but until now haven't posted. Long story short I was diagnosed with CD in 2000 at age 21, and ended up having an ileocecal resection (removed a little on both sides at the time). Since then I have been generally well, I had a flare up in 2005 that was controlled by my GI with Colazal and a couple courses of antibiotics. Another flareup in '07 but we got it under control with Pentasa and prednisone...
 
This last March I started going downhill again. In April the doc had to put me on Prednisone as it was the only thing that was helping the pain, I don't have much luck with pain medication. In May I could tell that my GI, who I love, was disturbed my the colonscopy that we did. He immediately placed me on Cimzia once the pathology results from the colonscopy came back negative. I am just about 2 months into Cimzia but haven't seen any improvement - if I get below 20 mg of prednisone I deteriorate quickly with intense pain and quite a bit of diarrhea.
 
I don't want to go on too long of a rant, so long story short the doc referred me up to Cedars-Sinai in Los Angeles this week. My wife and I met with a wonderful doctor there, and after looking over everything they have taken me off of Cimzia and I will be starting remicade next week, they believed that if I was going to show improvement on the Cimzia I would have seen some of it by now, apparently the vast majority show at least some improvement by now.
 
More troubling is the fact that the the doctor at Cedars recommended the Remicade basically to save just a very tiny area of my rectum as they believe that my colon is so ravaged with pseudo-polyps and other damage from the CD that it is beyond repair at this point, and even if we do get the CD under control they don't feel that they would be able to adequately screen me for colon cancer moving forward. So basically I'll have 8 weeks of remicade (week 0, 2 and 6) and then a colonscopy at week 8 after which we'll meet with the surgeon and get things scheduled. Apparently the goal will be two procedures - removal of my colon, at which point I'll have to have an ostomy and everything, and hopefully 4-8 weeks later a second procedure to re-connect everything.
 
I knew I was sick, but I've been devastated since getting this news. I have a 23 month old son and a wonderfully supportive wife, but I hate that they have to deal with this nonsense and I hate being out of commission! I've been on disability since mid-May and now there's not too near an end in site - although if all these procedures go well I hope to be very well and not deal with as much for awhile afterwards.
 
Anybody have any suggestions how to deal with this waiting the next couple of months, or any other input?
 
Sorry for ranting!
 
Tim
 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/16/2009 10:39 PM (GMT -7)   
Hello, Tim, and a big hug to you. What a horrible time you're having.

Would you feel comfortable popping over to the ostomies board and introducing yourself to the people there, too? They are absolutely lovely, and they're wonderful at helping people get over their pre-surgery jitters.

This isn't to say that you shouldn't stay here, but this is a quiet time on the Crohn's forum (many of the members are American and asleep), and I can see the ostomies mod online right now, and I'm hoping she'll be able to talk you through the surgery :-). The ostomy mod's name is Shaz032.

Welcome once again,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


OCTim
New Member


Date Joined Jul 2009
Total Posts : 6
   Posted 7/16/2009 10:41 PM (GMT -7)   
Thanks Ivy! I'll pop in there as well. We don't have all of the details 100% worked out yet but both my GI and the doctor we met with at Cedars-Sinai were pretty up front about not expecting anything less than surgery at this point. It's more a matter of "when" than "if" now.

Thanks again,

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/16/2009 10:53 PM (GMT -7)   
Oh, and now Andorable's here. She's another recent surgical patient, and I'm sure she'll be happy to talk to you.

It must be quite a shock to go from being sort-of-unwell-and-being-managed-with-basic-meds to really major surgery. Have you started to think about things that you and your family can do now, to make your convalescence easier?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


OCTim
New Member


Date Joined Jul 2009
Total Posts : 6
   Posted 7/16/2009 10:57 PM (GMT -7)   
Only in the sense that we're looking at some arrangements for some other family to help out a little bit with the little one, at least in the short term after the surgery and such to help my wife out. Luckily my family lives not too far away so they are available to help us if we need it. Back in 2000 when I had surgery it was all so quick (emergency surgery), I suppose this time being something that we'll have a couple of months to work up to will have some benefits...

Katzzz
Regular Member


Date Joined Jul 2009
Total Posts : 38
   Posted 7/16/2009 11:44 PM (GMT -7)   
tim
I'm so sorry to hear all you are going through. My thoughts and prayers go out to you and your family.
I hope you find someone that can help ease your worries about the surgery. Here a wishing you a very sucessful surgery and a speedy recovery.
Hugzzz,Kathy

donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 7/17/2009 2:53 AM (GMT -7)   
After your Ostomy you should be able to eat whatever you want. That is something to look forward to.

Welcome.

Donnaeil

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 7/17/2009 3:52 AM (GMT -7)   
I'm sorry to hear what your going through, stay strong!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Protonix,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

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