Thursday, March 3, 2011

How do you know when it's time

How do you know when it's time to go get the op?

So I asked my neighbour this question last month and the answer was, "You just know". Well, I don't know.

How much pain do I need to be in? Should I wait until the doctor tells me its time? Should I wait for the first signs of cancer?

I'm hoping that I never have to have this operation, but reality is that I will at some stage. I want the miracle!! I don't want the op.

I was reading a story the other day about Freddie Mercury and it stated that is only Freddie could have survived another year, the advances in medicine and especially in the treatment of HIV and AIDS could have saved him.

I know UC is not on the same level as Aids, but I keep hoping that if I can survive with colon intact for a bit longer, then the medical world might actually have the break through that we need.


  1. I think the "you just know" crap is overrated! That's just someone telling you "it's your decision, and I'm glad I don't have to make it or think about it." I never just know something that is difficult and emotional and life-changing. I tend to be a bit morbid, and I feel like I would "just know" when I would rather leave this world and the pain than stay in it with the pain. It is wearing and it grates on the soul. Keep up the faith. Make a list. Do whatever appeals to your personality style that would help you make a definitive decision. There is ALWAYS hope. Wishing you the very best.

  2. In uc 25-30% need surgery. Why are you so sure you're one of them? My dr said I should think about it 15 yrs ago, here I am still in one piece! The first few years of uc were very rough, got better on pred, got stuck on pred for yrs, now am well longer than I was sick. The Pentasa wasn't enough, when Salofalk came out I got off preds. Many new meds are coming down the pipe, maybe one of them will do for you what Salofalk did for me. Very good point you made about Freddie.

  3. This is a really important question. Also it;s so difficult to answer. Personally I just got to a stage where I was going to die if I didn't have the Op.

    Little by little the argument for the Op just got heavier and heavier.

    It's a really ghastly decision.

  4. @ Anonymous - By the way my UC is going, it's not looking good, but I'm still hoping the dreaded colonoscopy will say I'm still ok. Been on Pred for so long now, that it too is failing to work and salofalk only worked for 6 months. Hoping my GI will give me a miracle drug when I next see her in April :D

    @Whittles - The funny thing was my normal doctor said I was quite positive about things. I think it's more that France has taught me to stop fighting things can't win. But then again France has also taught me how to get things other ways :D

    @ Arkayeff - It's bloody scary if you ask me, and in a lot of ways it would be easier for me to just be told do it or you die. Choice is taken away from me then. What did you decide to do in the end?

  5. About the rebuild?

    I'm still looking for a bit more solid evidence of goodness.

    Just want to say . . . if you do have to go the way of the knife there are a lot of good things that you regain.

    I never would have believed it myself, but in the last year I have been able to do much more than in the last five years.

    And you don't have to think about what you eat.

    Also, in my little experience, the fear was a lot worse than the reality.

    And, as I said, Hypnotherapy helped me.



  6. I hope this might brighten your spirits: an inspirational post from a fav blog

  7. I don't know how anyone ever knows. A couple years ago I was so miserable from the UC and basically my quality of life was so diminished that I really thought I needed to have the surgery. But, now I have been in remission for over a year and I am glad I didn't have the surgery because I am feeling so great. I think you just have to talk with your doctors and get their opinions and just really think about it. I can tell you that there is research being done now (I was a recent participant in a study) and they are learning more about this disease. But, you are the only person that knows how things are for you, so you are the only person that can know if you need the surgery. Good luck!