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I think I know how beatUC feels about surgery threads

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Posted 8/3/2013 4:14 PM (GMT 0)
Daughter now 13. At 7 dx of UC. Used them all....including Remicade and Humira. Got a septic hip from Remicade thus the jump to Humira. It failed after 15 months. Such continual flares that hospital was home. Flew to LA for best surgeon in nation (I know that's up for debate). 3 step surgery from Oct 2012 to April 2013. Awful to have UC, awful to have to do surgery. Now super sick. Low iron, bloody stools, joint pain. CRP level at 103. Pouchoscopy (colonoscopy) reveals infected pouch and small ulcers on small intestine. Laughable, huh? Really, possibly Crohn's, not UC? So taking entocort, flagyl and cipro. Of course her joint pain in ankle so bad they draw fluid out to see if she has a septic ankle to blame on Cipro. So far no bacterial growth but she gets daily shots in butt "just in case". The Cipro can be to blame for the joint pain. It's been known to rupture tendons. Something else to look forward to. Downer of a story, right? Yet we carry on, laugh and get to spend a lot of time together. I want us to all support one another whether we've had success or failure.
Posted 8/3/2013 4:38 PM (GMT 0)
Somedude, at times I had only trace amounts of stool, mucus and blood, but enough that it would have required a trip home and a bath had it happened outside the bathroom. My stool was mushy to pudding-like, but not liquid, so less fluid loss. Please trust my numbers, my doctor had me keep a log recording only times when there was a product, not merely when I felt tenesmus. I used to wonder why I couldn't just get something that would kill me. Why I didn't opt for surgery I can't explain, I just never got to the point of giving up hope. I knew Remicade was soon to be approved, and waited for that.

NCOT, I was seeing only the gastroenterologist. As a nurse, I knew that you go to a surgeon when you've decided you're ready to consider surgery and that's the best way to proceed. I just somehow never got there. Surgeons know how to treat stuff with surgery, and that's what they normally recommend.
Posted 8/3/2013 5:17 PM (GMT 0)
As long as surgery thread's are balanced by both sides, I couldn't give a rats arse about how many there are on here. Given that it's a treatment.

The only surgery information I get is from here. My doctor refuses to talk about it - even though it's my decision and bloody colon, not his.

My only fear is a possible crohn's dx.
Posted 8/3/2013 7:36 PM (GMT 0)
Just to throw my two cents- in decades of UC I never got pressure to have surgery from any doc, least of all a GI. (Almost had emergency surgery in my initial attack year when IV steroids took 3 weeks to kick in). In my experience GI's have been universally anti-surgery. Surgeons are maybe a bit pro surgery but then that is what they do, and no GI even pressured me to talk to a surgeon. One thing I am very glad I did was research pros/cons/risks of all surgical options.

I was as anti-surgery as the most ardent surgery fearers here before surgery- cancelled surgery weeks before surgery then almost cancelled a second time day before surgery- but boy were my fears displaced; am extremely happy end ileostomate, and am firmly in the "wish I had done this many hears ago" camp that I never imagined I'd be in. Zero psychological issues with it- none, nada, zip. Affects my quality of life vs a normie with colon and no IBD about the same as the QOL of wrist watch wearer vs a non wrist watch wearer and I am not exaggerating, truly.

As for QOL now vs life with colon and UC- vast, vast improvement for me. I can now (just 3 mos. after surgery) hike and bike and play tennis etc with abandon- and I certainlydont go to the restroom any more than I used to as a normie. I know exactly how every surgery-fearer feels p, since I felt that way too, but I think one should use your "over my dead body" resistance years to goid affect by reading up on all rhe surgical pros/cons/options, consulting with a top experienced surgeon or two, etc etc so if the switch goes off in your head one day and you finally say "let's do it!", it is a quick anti-climax to the other side.

Post Edited (Probiotic) : 8/3/2013 1:39:27 PM (GMT-6)

Posted 8/3/2013 9:11 PM (GMT 0)
My GI is also anti surgery but then that's really a GI's job - to keep people as well as they can with their colons if possible.

I would never say never on terms of surgery but I would much rather go with the meds. Things seem to be well under control with me at the moment so fingers crossed if I do have to make that decisions it is still far in the future.

I think one of the biggest concerns for me would be advances in treatment - i can't think of anything worse than getting the chop and then we see some advances in treatment that could have made things better without having to risk surgery.

I also struggle to get the image out of my mind that surgery is just so severe - like handing someone with a headache a shot gun and telling them to blow their head off.

I'll keep surgery as a last resort!
Posted 8/3/2013 9:33 PM (GMT 0)

Jonny_Murray said...
I also struggle to get the image out of my mind that surgery is just so severe - like handing someone with a headache a shot gun and telling them to blow their head off.

If you blow your head off your dead. If you remove your colon, you can live quite nicely. UC free I might add. :)
Posted 8/3/2013 9:47 PM (GMT 0)
thanks for that.... was just about to reach for my shotgun!

Was only kidding - just trying to break the tension on an otherwise serious debate!
Posted 8/6/2013 4:42 AM (GMT 0)
Interesting thread to read. :)
I am actually in a similar boat NCOT, as my doctors are talking about surgery, but as the absolute final option. We are waiting to see if Humira is working. I am only noticing minor decreases in symptoms and really its only my pain that has decreased, but I am still taking at least 2 pain pills a day. I would love to not be on pain pills.

The problem is the doctors cant determine if its UC or CD and while I am scheduled for an MRI this Friday to check out the small bowel, I am nervous that they wont know for sure until I am on the operating table and then I will wake up with a permanent bag and have to deal with that aftermath.

Anywho- I wish you the best of luck with your recovery both physically and mentally. I just got diagnosed in May and while I have been in a serious flare since, I can only imagine what life has been like for you UC veterans.
Posted 8/6/2013 6:05 PM (GMT 0)

ByeByeUC said...

Somedude said...
Too many posts about surgery is not what bothers me. What bothers me is on the ostomy forum when I see people complain about issues with their surgery. I want to hear everything is on the up & up.. not the reality of things. Jebus, lol

I'm already down now...I want to hear that everything is going to great and awesome

Why can't it be this way..grrr

Ok Somedude here it goes:
Once upon a time there was a boy named Somdude. His UC got so bad that he had no choice but to have surgery. He recieved a j pouch and from that point on he pooped rainbows and sun beams. The end. ;)

LOL. Nicely put Marianne, and Somedude I know exactly what you mean with that ostomy forum.
Posted 8/6/2013 6:23 PM (GMT 0)
Also well said Probiotic - I thk im in your same boat. And about the whole surgery debate, most of y'all are stronger than me with this.. I went under the knife before even trying Humira.

I really think the bottom line is that one day it just hits you (like probiotic said) you'll know when you've had enough.
Posted 8/6/2013 6:45 PM (GMT 0)
airica38 - Thank you muchly. Likewise, I wish you the best of luck with getting out of your flare up and not needing surgery. It sounds like you have been hit hard from the off and that's tough going. I was diagnosed 13 years ago, but I had 5 easy years and then after that it was downhill all the way to surgery... >_>.

But seriously; good luck with the MRI scan and getting a definite diagnosis.
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