Please Help - Surgery vs. Tsyabri

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/31/2009 2:35 PM (GMT -7)   
I'm in such a hard spot. My surgeon is NOT pushing me, but only giving me a professional opinion. I'm frankly scared to death of BOTH options...

First, I can try Tsyabri, if no improvement in 3 months...it's definitely surgery. Once I'm in remission, I can get pregnant on Tsyabri, according to my GI.

Second, I can do surgery now. Live permanently with an ostomy bag, but likely be in remission for years to come. My surgeon's words to me today "I think you need to think long and hard about having the surgery." I'm so stuck. I haven't been back to work in a week. I'm on constant narcotics. Yes, I'm only have 1-2, and sometimes 4-5 bowel movements a day, but with all that narcotic.. who wouldn't?!?!?!?!!?! But, then there are days where I feel somewhat fine (again, WITH narcotic) and wonder why I'm even THINKING of surgery. And, one draw-back.. I'd likely have to wait a year before conceiving...but there are the benefits that my daughter would be older and *more* helpful as well.

I'm so lost.. I've cried many of tears over this decision. And, my Tsyabri paperwork has been delayed for the THIRD time now.. which makes me wonder if it's not God's way of telling me to just have the surgery and be done with it!!

I KNOW it's MY decision...but just like when I made the decision to have fetal surgery on my other daughter.. I do NOT want to make this decision.... I'm scared that maybe there isn't much wrong..and I'm just making this up and that they would do surgery and find that it wasn't that bad..

THe surgery is a total colectomy...per the GI AND the surgeon..

I'm scared of both decisions.. I just don't know what to do anymore. I already had to sign the Tsyabri paperwork which is enough to make you go "hmm" after you sign over waivers for a drug!! Heck, Remicade and Humira never required that!!

Please help! PLEASE!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/31/2009 3:08 PM (GMT -7)   
I know what you mean.  Last month I decided on Humira over surgery.  On good days I think, boy good thing I didn't have the surgery.  On bad days I think, why didn't I just have the surgery already, I can't take this anymore.
 
This is probably impossible to say, but do they have any thoughts on how long your remission could last with the ileostomy?  I think I read once that it is usually longer than with a regular resection?
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/31/2009 3:23 PM (GMT -7)   
Not sure... it's be a total colectomy...sew up the rectum..the works... I'm sure sure it'd be a fairly long remission... since i'd just be left with my small intestines..and i've have no disease there..
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/31/2009 5:20 PM (GMT -7)   
If you have no disease in the ilium that would be a plus for me in the surgery column. Of course I don't know how common it is for previously unaffected small bowel to become diseased after a colostomy...

God Crohn's sucks.

Good luck Kaycie.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/31/2009 6:13 PM (GMT -7)   
Thanks Rider.. I 90% sure surgery it is... still struggling.. but I'm taking the next step and telling the surgeon to set up a pre-surgery appt.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 3/31/2009 7:44 PM (GMT -7)   
Having been on all the drugs there are, I finally settled on Tysabri and have been on it for over a year. There were over 40,000 people on Tysabri (MS patients) before I even started Tysabri. It is an option. And it isn't a bad one. Of all the things in life to be scared of (and I've had a miserable existence with CD for the past 9 years), the Tysabri is my shining star.

There is no need to be afraid of it.

Do a SEARCH on Tysabri as i've documented my experiences here. Also, i don't know what part of the country you are in, but I was the first person on Tysabri in my region. Suffice to say, i know the people at the drug manufacturer and I can assist you in helping move that paperwork through if it is what you want to do.

I was where you are. I was out of options. Sure, i'm male, but it was Tysabri or Surgery. I chose the Tysabri and after 3 months, it really started to work.

J
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 6:12 PM (GMT -7)
There are a total of 2,735,597 posts in 301,318 threads.
View Active Threads


Who's Online
This forum has 151422 registered members. Please welcome our newest member, Gabor88.
274 Guest(s), 11 Registered Member(s) are currently online.  Details
Nana 2, Bololidat, Tirzah, ppm guy, Girlie, Dyna1, exqualls, aloha234, Csweeney1002, Noni9, Michael165


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer