Anyone else hesitant to get surgery even though you feel you probably should?

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qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 6/18/2009 11:26 PM (GMT -6)   
I told myself after this dose of Humira wears off I would have surgery. My symptoms seem to be getting worse rather fast. Now that reality of surgery is upon me I don't know if I can go through with it :( I'll admit I'm kind of afraid. Not sure if it's of the surgery itself or the aftermath and being worse off if it goes wrong, probably a combination of both. Anyone else hesitant to pull the surgery trigger but feel they probably should have it? I mean, life can't really be that bad after surgery right? The chances of complications are fairly low, and if they occur are often easily treated I've heard?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/19/2009 7:53 AM (GMT -6)   
It took me 8 years to get over being afraid of surgery, and i wish now that at hte first drop of blood i had said, "take this thing out, i dont want it and i dont need it!"
Finally, i realized that i hated life the way it was and i might hate life after but from what i had heard from everyone else it didnt sound like i would.
It took me a long time to make my decision, but i am 100% happy with it, and all is great!
good luck!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/19/2009 10:41 AM (GMT -6)   
I haven't met a single UC person that wasn't afraid of surgery!! It's one of the two top reasons we drag our feet on making a decision. For me the surgical consultation sealed the deal. My surgeon, after reading my file, took one look at me and said I was going to be FINE after surgery. He was the only doctor in 2 years that told me that his expertise would fix me. He was right. It's been 8 really good years of being healthy and medication free.

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


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 6/20/2009 11:44 AM (GMT -6)   
I feel the same way, qazwsx12. I agree with Suebear in most respects and recognize that the odds are fairly good for success in surgery, but the fact remains that surgery is irreversible and Suebear's experience seems best case for a wide spectrum of responses to surgery. For this reason, even though I failed Remicade and now seem to be failing 2xdose Humira too, I am this week trying fecal infusions and after that, will try human whipworm before throwing in the towel. However, I am absolutely positively not going to try anything beyond that, if these two things don't work. For example, I have already ruled out antibiotic therapy and adding in more immune suppressants on top of the biologics.  This is a crazy disease- some people claim they get magical remissions on macaroon cookies or spinach and sunflowr seeds while others of us try everything and still end up headed for surgery- luck is a huge factor.


Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
maybe surgery this year soon
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 6/20/2009 11:58 AM (GMT -6)   
I'm not in that situation, but I know I probably wouldn't hesitate if the big-gun meds weren't working.

My patience isn't very good regarding having symptoms that would totally interfere with my life. Especially since the meds I'm on now are working very well...I think I'd rather learn to live without a colon (considering my age) rather than wasting my life waiting for the meds to work.

I couldn't handle too many accidents either....

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Swetty
Regular Member


Date Joined Apr 2007
Total Posts : 57
   Posted 6/21/2009 1:45 AM (GMT -6)   
I've had UC for four years.  I'm allergic to all the ASA drugs and Remicade and Humira stopped working.  I've been on prednisone for the whole time so I didn't really have any options left besides surgery.  I had my colon removed in mid-March and currently have an ileostomy...it sucks!  It's been the longest three months of my life! 
I'm a cop and a pretty active guy and I really feel that this ileostomy holds me back from doing a lot...especially in the lady department... yeah
 
Anyway, I have my J Pouch surgery on Monday, June 22 (tomorrow)...that's why I can't sleep tonight.  I'm scared out of my mind.  I just hope I don't end up in a diaper or something.  I'm just eager to look normal besides a few scars.  Admittedly,  I haven't been myself since the first surgery and am hoping after I recover from this next one, I'll be less depressed and more outgoing.  Best of all, no more prednisone.
 
If anyone else is having difficulties with their meds and feel surgery is the only option, I highly recommend Dr. Terdiman at UCSF.  His wife is my surgeon, Dr. Varma and she has done a top-notch job.
 
 
 22-year-old Male diagnosed with Ulcerative Colitis in September of 2005....in remission
Allergic to Sulfa-based drugs like Sulfasalazine, Asacol, and Canasa
 
Remicade Infusion
Lomotil
Occaisional Pain Meds....mostly only when I have a bm or am about to....
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/21/2009 10:45 AM (GMT -6)   
Probiotic-Dont think of surgery as throwing in the towel and giving up. Think of it as taking control, because you are literally kicking that stupid colon out and throwing it away.
That was a lot of my problem too, i didnt want to give up before i tried everything. In the end though, i didnt try much at all, and i just went on wtih the surgery with the mindset that UC was gone forever!

Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 6/21/2009 8:25 PM (GMT -6)   
Swetty, keep us updated.
Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 6/21/2009 8:34 PM (GMT -6)   
Hearing stories from summerstorm and suebear always make me feel better and more comfortable in case surgery is in my future. I'm so glad you ladies still hang out on the UC board even though you don't have UC anymore!
32 yr old female
Mild Pancolitis
UC since 2000 - in remission for most of those 8 years med free.
Cannot tolerate mesalamine. Trying Applied Kinesiology & supplements.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/21/2009 9:33 PM (GMT -6)   
well i just do it cause hearing stories from people who had good turnouts helped me sooo much in making my decision and i just want to give back and help someone else. glad i can help you though

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1251
   Posted 6/22/2009 5:39 AM (GMT -6)   
I'm another happy camper. I've had my ileostomy for 33 years due to UC and don't regret a day of it. You couldn't pay me enough money in the world to make me agree to go back to those pre-surgery days.

It's tough at first, esp mentally for most people, there's no denying that. But after the initial hurdles, you'll probably be like the rest of us, wondering why you didn't opt for surgery sooner. If only you knew how well you would feel afterwards.

Good luck with your decision :)





_______________________________________________



I'm not a complete idiot - some parts of me are missing!


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 6/22/2009 6:28 AM (GMT -6)   
Summerstorm: good points, certainly, but I also read so, so many stories by j-pouchers and ostomates who develop chronic problems and start experiencing the pain and discomfort of UC-like issues again (one just posted on this forum), sometimes even relying on some of the same meds they had to with UC. I am very happy for every single one of you- the majority, to be sure- who are lucky enough not to have problems, of course. I'll admit that I have played the "one last chance" game a few times and every time come up with one more excuse for yet another new "one last chance." For example, I just tried fecal infusions using my girlfriends stool and it seems to flare me up a bit rather than help me- so much for that theory in my case. I am however setting up a surgical consult and am told that once I do it, I will have a green light for surgery at short notice - even days depending on the surgeon's schedule that week- so it will be good to be in the home stretch. I second the others who thank people like you and Suebear for sticking around this forum enough to post the positive side of surgery.


Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
maybe surgery this year soon
 
 

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