People talking you OUT of surgery?

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 4/1/2009 6:36 AM (GMT -6)   
Ugh! Here I am, minutes away from making the call to my surgeon's nurse to get the pre-surgery consult set-up and I have people, in real life and online TALKING ME OUT OF THIS!!! As if this wasn't a hard enough decision on it's own! What gives?

Many people telling me to look back into Tsyabri and not be scared of it because of PML. Well, the thing is..it's NOT JUST PML I'm scared of..it's the other risks.. lymphoma, lupus, my God the list could go on for DAYS! I want to be nearly drug-free, pain free, and for God's sake I JUST WANT MY LIFE BACK!

Why must people be so insistant that you are making a mistake? sad
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


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 4/1/2009 7:27 AM (GMT -6)   
I could write a book on this subject! My mom and my brother, up until the day prior to my surgery, tried to talk me out of it. I had several friends who were horrified at my decision and I dropped them as friends. I really don't understand how ANYONE can try to influence this decision; it's one of the largest decisions I have had to make in my life and for those that tried to talk me out of it I have never forgotten. After surgery my brother did come around to my side and say that I made the right choice. But I really wanted him to be supportive of me while I was going through surgery. I have learned that some people just get weird over health decisions WHEN IT DOESN'T EVEN AFFECT THEM!

Don't get me started!

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/1/2009 7:53 AM (GMT -6)   
Kaycie--they aren't living your life! Your husband supports you, right? That's all you need...I didn't even tell people I was thinking about it, I just had surgery...I wouldn't suggest not telling your parents, tho, my mom wasn't happy I waited to tell her!! BUT she did understand...everyone reacts differently to medical procedures, but as long as YOU are okay with whatever happens, do it. I wish you the best!!!!

Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 4/1/2009 8:02 AM (GMT -6)   
I had not known of Tysabri when I was going though my drug therapy.

Jut did a web search on it. Personally, it's not something I'd try...

http://en.wikipedia.org/wiki/Natalizumab

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 4/1/2009 9:05 AM (GMT -6)   
Thanks everyone!

My husband AND my parents and most of my family are fully supportive about it. They've seen my suffering firsthand and they just want me to be better. My mom & husband are behind my decision 100%. They KNOW I'm scared half to death..they understand every single reason behind it... they want nothing more then for me to be healthy and able to live.

And, if I get one more freakin email or message about how I should check into Tsyabri a bit more.. I think I'm going to scream!
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


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 4/1/2009 9:19 AM (GMT -6)   
Amazing. I read this post and felt like I was writing it :-)
My doctor suggested surgery almost a year ago and my mom and family have been against the idea of surgery ... talked me out of it and wanted me to try every medication under the sun because somehow because of "hope" I'd be cured one day.

I even started to believe that I may be cured somehow and that I could beat this myself. I tried acupuncture, homeopathic meds, Chinese herbs, Remicade, Humira, the works ... finally .... everything stopped working and a month ago i convinced my mom that surgery was the way to go ...

I have my surgery date set for April 7th ... less than a week away ... and honestly everyday I wake up terrified. I know this is the right move but this is scary ...

I can't wait to get off all these meds already .. and start feeling better, even if it means I'll have different plumbing from everyone else :-)

Good luck man.. and keep your chin up .... that's what we're here for !

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 4/1/2009 9:32 AM (GMT -6)   
We had many people ask us how we could allow our 17-year old daughter to go through such a surgery! So permanent, so life changing! So drastic! My husband, daughter, and I discussed the surgery over and over again. After her 3rd huge flare, she wanted it. Even with her nerves, she never changed her mind. In her case, she was in remission when she had the surgery. Feeling healthy. So even more people thought it was wrong. In fact, after surgery, when we asked the surgeon what her colon looked like, he said it was bad but not horrible (the way most on this forum seem to have been). But still, we know it was the right decision. She's a happy, healthy girl living her senior year of high school and looking forward to the future. No meds, no issues, no disease.
Our family didn't give us too much grief. Mostly friends. Ours not hers. Of course, these are the same friends who told us that she should just change her diet, try this medicine, go to this doctor, etc. They also always seemed to know someone (generally a family member) who had UC and was "cured". No amount of explaining about this disease was going to help.
As long as you have a great support system, you will be fine. Focus on that and how much better you will be to be the mom you want to be.
--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/1/2009 9:49 AM (GMT -6)   
I know this is very hard ---- if you are confident and those close to you who love you and will care for you are confident that surgery is the way- you will have to ignore the naysayers.

Try meditation--- I bought a CD with calming music and sat in a dark room listening to it.

I began a journal of my journey through this and it helps to get my feelings on paper.

good luck
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/1/2009 2:04 PM (GMT -6)   
At lot of the peopel who are trying to talk you out of it are worried abotu such a big surgery and the dangers. My grandma FREAKED out! Not because she was upset abotu the type of surgery just because surgery is dangerous and she had just had a major surgery on her stomach (colon cancer removed) and knew how painful and dangerous it was. She wanted me to try everything in the world to keep from having to go through what she did. Eventually she realizzed that was my only solution and she said, I would do it for you if i could.
But there are plenty of people who dont know what its like to be SOOO sick ALL the time and they think oh a few drugs will fix it. I mean it would have been awesome to find out you can two asprin and its gone, but that's not the way it workds. And i did have some people say, what if they find a cure? And in my head i thought "great, im gonna wake up and see brian williams on tv saying, a cure for everything has just been found!"

But that's so unlikely, and this surgery is A CURE and you will be BETTER just tell them that.

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 4/4/2009 10:40 AM (GMT -6)   
Everyone has their own opinion....especially the uninformed.  And, opinions are like.....well, you know!

awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 4/4/2009 2:50 PM (GMT -6)   
My parents were pretty freaked about the surgery too, dad especially. Mom took it a bit better but not by much. Good thing I'm over 18 or else I'd still be suffering..

Matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 4/4/2009 9:19 PM (GMT -6)   
I only just read your initial post. I think there are a lot of people afraid of the surgeries and will try any other means to avoid it, and have convinced themselves that they are correct with taking the medicine/natural herb/special diet route. For me, surgery was a no brainer, no remission since the initial flare and a year was all of my life that I was willing to waste pursuing that route. Now 4 months after my last surgery (j-pouch), I'm about 95% of what I was before UC. Although this cannot be said for every colectomy and j-pouch surgery, I think long term your better off by not being dependent on drugs for the rest of your life. They are damaging your otherwise healthy organs and body systems. Life ceases to be normal once diagnosed with UC, all you can do is to get back as close to "normal" as you can. If your considering surgery, think of all options. For me it made the most sense based on my condition.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Severe Pancolitis
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
8/05/2008 - Unexpected surgery to remove blockage caused by scar tissue
11/20/2008 - J-Pouch + Reversal Surgery - Now living happily ever after!!!
"When life gives you lemons...make lemonade"


chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 4/4/2009 9:33 PM (GMT -6)   
My husband opposed me having surgery....said I just needed to stick it out.  Finally, I just got tired of UC and I just told him I was doing it.  At that point, he supported me 100% but since my surgery has made a point several times to tell me that it was the best choice I could have made.  He is SO glad that I nolonger live on the up and down UC roller coaster.  I  think that the thought of anyone loosing their colon "by choice" just sounds "crazy" but it is what it is.  Your colon is sick and, in turn, makes you sick.  I say follow your gut instinct.  If you are ready then you are ready.  It is a tough decision but I bet all of your friends and family will support you 100% and will probably realize how good of choice it turned out to be afterall.  Noone lives through UC like you do....it is hard!!

Pancolitis - July 2006
Surgery - Temporary ilestomy on 2.25.08 at Cleveland Clinic. Next surgery in 6 months
Medications:  Predisone - 5mg (and tapering to zero)
Supplements:  multi-vit, calcium
Reason for surgery: Steriod dependent and allergic reactions to imuran and 6mp. Elected not to try remicade.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/4/2009 9:57 PM (GMT -6)   
Chili - good to hear from you and see you posting.  I haven't seen you around in a while.  You been ok?
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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