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notbob
Regular Member
Joined : Jul 2016
Posts : 69
Posted 2/17/2018 6:49 AM (GMT -8)
Conner,

I'm sorry to hear what you're going through. My story is similar. Keep trying different therapies. Something may work. You've got a lot of life ahead of you. It may not play out the way you thought it would, but it can still be wonderful! Do whatever you need to do to live!
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1788
Posted 2/17/2018 8:15 AM (GMT -8)
Connor I'm going to be direct. Self pity sucks. If u let this disease control u it will. In 32 years of having this disease there were 2x it had me. But I fought like a dog to get it under control. Now I had colon removed on Jan 9th. Best decision I ever made. Anxiety all gone. Worries all gone. I wasn't an emergency patient either. I could of went on humira or Remi but bc they lower immunity I said no way. My gastro and surgeon both agreed surgery was good idea. It was my decision. Be a fighter. If disease is controlling your life surgery is good option. Luckily once I couldn't stop Big D I had already consulted 2 surgeons. Do your homework now in case surgery is your choice. Wearing bag is not a big deal. Rather easy. Much easier then the daily BS that comes with this disease when flaring. Good luck. Be strong
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17869
Posted 2/17/2018 8:15 AM (GMT -8)
I think it's interesting when people say they don't want surgery, as if some people want it, or are better at handling it. Trust me, no one wants it, and no one wanted it less than I did. I truly believed I would be the person with the bad result, or the person who got no relief. Luckily that wasn't the case. I am doing great. It's easy to say you don't want it, or you're above it, or you would never do it, when you don't need it. When it's truly the only thing left that will allow you to leave your house without an accident, you may surprise yourself and consider it. I am thankful I got past that "it's not for me" stuff.
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Happier!
Regular Member
Joined : Feb 2014
Posts : 312
Posted 2/17/2018 10:24 AM (GMT -8)
Oh, and I still travel and do things.
Just at a more mortal pace.
We stay in hotels instead of in the car at the side of the road.
We plan instead of taking off and discovering where we end up.

Connor, are you sad all the time? Or has this just been a bad time?
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Connor77
Veteran Member
Joined : Jul 2016
Posts : 523
Posted 2/17/2018 10:25 AM (GMT -8)
I don't want to turn this into a "Convince Connor that surgery is an OK thing" thread, ok? We all have a right to self-determination. It's not a self-pity party. I will not accept judgment from others. We're all here to share where we're at with this disease, and that's where I'm at. If you need to convince yourself that the surgery you got is OK then that's really what it's about. It has nothing to do with me. It's no different than threads where people WANT surgery and others swarm in to tell them not to do it.

imagardener2 said...
Connor

I hope your FMT trial goes well and you get some improvement.
You have the right to your feelings about not wanting surgery but consider that you may be depressed (every right to be, again) an emotion that is also related to the gut. Please talk to your GI about this. I know you've tried most treatments but some people have gotten UC symptom improvement from anti-depressants (search this forum).

Your isolation (no partner, no community) is adding to your UC symptoms. Yes there are potential partners who could offer emotional support but yes it would be hard to deal with a love life which may have ups and downs of it's own. Have you thought about getting a dog or cat? (not joking). Having something/someone else to think about is beneficial.

UC can be "one day at a time" when things are at their worst. What if surgery gave you your normal life back? The numbers support that outcome.

I had a history of depression well before I ever developed UC. I don't think the UC is causing depression. I'm depressed because I have UC. An important distinction.

We are comfortable talking about the ugly side of UC as long as it relates to symptoms and describing the disease itself. People get really uncomfortable when they see the reality that not everyone copes well with the options available and never will. That's why we see the pro-surgery people showing up here, or the anti-surgery people showing up in surgical threads.

I've tried anti-depressants. They have no impact on my UC. Although, the stress of being in isolation definitely has. I asked my landlord if I could have a dog or cat and they said no. I don't think I want the extra responsibility anyway. Taking care of myself is a full time job and I would not want to condemn another life form to being stuck in my apartment with me.

I'd PM you to talk more but this site has no PM function.

Post Edited (Connor77) : 2/17/2018 11:43:56 AM (GMT-7)

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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17869
Posted 2/17/2018 11:19 AM (GMT -8)
No one is convincing anyone of anything. Everyone needs to do what is right for them. I do not like that you constantly paint a negative picture of surgery, and scare other people, but that's your perspective & perhaps a logical one from the information you've received. No one can or should convince anyone - I can assure you that it is no ones intent, to convince people they do not know, to have a life-altering surgery. People do what they want, and that's how it should be. Hopefully you're never in the position of needing surgery. When it comes to literally pooping your pants everyday for months, or surgery, surgery does start to look a little more appealing. If you think I am a surgery pusher, you're welcome to ignore me, or whoever else, makes you feel pressured.
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beatUC
Veteran Member
Joined : Mar 2010
Posts : 1470
Posted 2/17/2018 11:47 AM (GMT -8)
Why are threads here always flooded with "Surgery is so great" comments when the OP usually just wants help dealing with their UC not surgery. Aren't there other boards for people who have had surgery?
We all understand that surgery is something that can save your life if needed, but don't you pro surgery people understand most of us are scared to death about our UC ending in surgery?
Comments touting how great surgery is are not helpful, I can say from experience.
Please have some empathy and sensitivity towards people dealing with UC who don't want surgery at this point in their journey.
Thank you.
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Connor77
Veteran Member
Joined : Jul 2016
Posts : 523
Posted 2/17/2018 12:24 PM (GMT -8)

notsosicklygirl said...
No one is convincing anyone of anything. Everyone needs to do what is right for them. I do not like that you constantly paint a negative picture of surgery, and scare other people, but that's your perspective & perhaps a logical one from the information you've received. No one can or should convince anyone - I can assure you that it is no ones intent, to convince people they do not know, to have a life-altering surgery. People do what they want, and that's how it should be. Hopefully you're never in the position of needing surgery. When it comes to literally pooping your pants everyday for months, or surgery, surgery does start to look a little more appealing. If you think I am a surgery pusher, you're welcome to ignore me, or whoever else, makes you feel pressured.

I never singled out people who wanted surgery or who have had surgery. My beef is with modern medicine, not the patients who are innocently trying to navigate a horrible hell disease. I just said that I don't want it, and why. I also believe calling it a cure is crap. I respect that it brings appreciable functionality back to people's lives and for some it is their amazing solution. I still wouldn't call it a cure. But without fail, people show up to directly contradict what I'm saying; or they say that I obviously don't have it bad enough otherwise I'd consider it (like you just did); or they feel the need to justify their own choices in reflection of my choices. To me, if you (general "you", not you you) didn't feel insecure somehow about your ostomy, then you wouldn't been bothered by what I'm saying; because I'm not targeting you, I am just telling my story like anyone else. I never meant to imply that people who had surgery wanted it in the sense that they were skipping for joy. Obviously nobody wants surgery just like nobody wants IBD.

NSSG, I have read your story. I've also had septicemia. I've also had bowel perforation. I survived both without surgery. I am a 6'4" man who has been less than 120lbs soaking wet when my UC was at its worst. I have been in diapers. How "bad" do I have to be before my choice to not have surgery is justified, in your eyes? I am saying all this because no matter how bad my UC gets, I will NEVER get surgery. I would rather die and that's my choice. The doctors are legally forbidden from removing my bowels. I'm sorry if that rocks the boat or instills fear in others. I am part of this community and I represent a very real demographic in the UC world. I resent that people imply I must not be bad enough otherwise I would consider surgery, or I'm just a suicidal idiot, or I must not really want to get better. I am one of the worst UC patients my GI team has ever seen and they hate me for the fact that I won't let them cut me open. They have told me so. It's the same hate I get here. I'm not defiant because I think I'm superior or above the system. I'm defiant because I can't handle the trauma of surgery, psychologically. I just won't do it. Surgery is less acceptable to me than death, and that is my right.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17869
Posted 2/17/2018 12:25 PM (GMT -8)
Locked. This is way off topic.
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