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Posted 10/29/2011 12:04 AM (GMT 0)
i have about 2 months until my loop ileo reversal if all goes well with my pre-op. My surgeon said he does not expect any problems, despite 2 bouts of peritonitis and sepsis each. He also said my chances are slim that I will wake up with my bag. Now, that sounds like great news and if anyone told me this story, I would say there is nothing to worry about.

Now, despite all this, it does not help. My friend is an MD and he tells me what my surgeon says is pretty much a guarantee of success. I don't know whats wrongwitj me. Am I a fool? Do I need help? Thank you for reading.

Post Edited (pilotguy) : 10/29/2011 11:25:59 AM (GMT-6)

Posted 10/29/2011 12:48 AM (GMT 0)
If you have had 2 bouts of peritonitis and sepsis and are having doubts about this surgery in spite of all the confidence by others around you, I can see why you are worried. Rosemary
Posted 10/29/2011 3:19 AM (GMT 0)
I tust my surgeon as his department is in thetop 10 in the US. He said not to worry about the sepsis etc but I cant stop. I was not like this before and i dont like the stress I am placing upon myself. Ive been home from the hospital for 4 months and my health is back, my weight is back, and I look normal. Thing is my surgeon can guarantee success but i would still worry. Maybe im depressed, i dont know. i know my dr wouldnt say he doesnt forsee any probems if he didnt mean it, for legal reasons and for my sake. am i being irrational and over thinking? thanks.
Posted 10/29/2011 3:49 PM (GMT 0)
     I don't think you are being irrational.  I am surprised that the doctor is so convinced that there is no possibility of any problems.  Seems like they would try to cover their butts should anything go wrong.    I have a permanent ileo only because my surgeon said I was not a candidate for j-pouch.  He said I was too high a risk to have the three surgeries.  It was fine with me.  I was just so sick of being sick.  I am dealing very well with my ileo.  about a week post op I developed a high fever, rapid heart rate and BP of 70/40.  Thank God I was still in the hospital.  The surgical team pulled me out of it but never told me what the heck happened.  My ostomy nurse said it sounded like sepsis.  I was fine during the day but remember feeling very cold.  At 11 pm the nurse who came in to take stats couldn't get a reading on her BP monitor..lol.   I know they started an IV with antibiotics, took all kinds of tests, CT scans, etc..  The next morning I was fine...go figure.  I was happy not to have to go under anymore operations.  I am also 65 yrs old and was almost 64 at the time of my operation.
Posted 10/29/2011 4:34 PM (GMT 0)
I am glad you are dealing well with your ileostomy. i was in great health before this and thats why i survived. This was from a hernia. I am glad my dr is confident and this helps me some. The funny thing is he is a lawyer too so when hevsays slim chance of failure, it must be good. If there is a positive outcome to all of this, its I dont take life for granted anymore. Im glad i was young when this happend, as i am 37 so i seem to bounce back fast. kerping my fingers crossed.
Posted 10/29/2011 9:01 PM (GMT 0)
I think that from the moment of getting the news of the first diagnosis to being ill and missing out on life to having complications, we start to have a kind of special fear, regardless of how positively we are trying to deal with it all. Your mind knows what your doctor is saying: it's going to be fine. Yet there's this fear mechanism that the "cure" isn't going to work, that it is out of control, and that more bad news is on the way. It's just a fear and just a feeling. 99% of the time fears have no relation to reality. But we have been through so much, it is almost as if we have the right to have this fear, although it does nothing but burn up a lot of energy and stress us out. I try to deal with my fears by separating the facts from the feelings. It helps.
Posted 10/29/2011 10:54 PM (GMT 0)
thank you, your post was spot on. in a way, i have to laugh at myself. i have a highly respected surgeon this time and no matter what he says, i am so negative. i hope i dont come across as a baby and i have learned that life is not fair. i am lucky to be alive and i should be giving thanks. a few months before my botched surgery, i lost a flying friend to a horrible accident. he slipped on ice at home, got knocked out and froze to death. he was only 27. still tears me up inside. thanks again for listening.
Posted 10/29/2011 11:50 PM (GMT 0)
Pilot,

I too ended up with an ileo due to a surgical botch (but then discovered unneeded sigmoid resection at another hospital). My ileo is permanent and am praying that it continue to work as it has for 4 years now. Without it I would have been a goner 4 years ago. I had to hunt for help for 13 months and was lucky I found it. I know what you mean about seeing life differently. I really don't think we can ever expect to be the same as someone who has not been through what we have. I don't think it is humanly possible.

Glad your current doc/atty is confident and likely all will go well, but YOU are the one that went through what you went through, not him. So I'm sure he understands if you seem a bit sensibly fearful.

Good luck. Rosemary
Posted 10/29/2011 11:57 PM (GMT 0)
Could a part of this just be fear of going in the hospital again, when you had bad experiences before? Maybe not all of it is about fear of a bad outcome.....

It's really hard to go into surgery when you're feeling healthy and you know it's going to make you feel worse. It's an intellectual thing that in the long run it's for the good, but in the short run, for me at least, it feels like they are going to hurt me and make me sick....

In other contexts, cutting someone open w/a knife is criminal assault, not medical treatment! Not sure the body knows the difference.

And re outcomes, we're so vulnerable..... it's scary to trust someone that much, no matter what their credentials are.

I think you sound scared, not negative, and I know it can be hard for some guys to admit fear, but fear is normal and healthy and I don't believe it if people say they don't have some.... great to give thanks and recognize how lucky you are to be alive, but it's also oK to feel other things too.

Sorry about your friend, that's horrible.
Posted 10/30/2011 1:40 AM (GMT 0)
There is no underestimating the mental and emotional toll that these illnesses and surgery processes take on our mind. I don't see the medical community address it much, but depression is very real and I think it would be odd to have someone go through this process with no instances of depression or intense fear.

I know that's not helpful, but I just wanted you to know you aren't alone.
Posted 10/30/2011 2:27 AM (GMT 0)
it helps a lot, thanks. I guess i will know how things will turn out in a few months. Life was so much easier before, but i never realized that until now. i guess thats normal. sigh.
Posted 10/30/2011 3:29 AM (GMT 0)
We are all right, about the fear. I also noticed the anger element, at the GI and surgeon, for being oblivious to the fact that they turned me inside out, mutilated me and "warped" my existence and inner life. It's not their job, not their area, and they don't have to treat us for the totality. They studied at medical schools where all of that happens in the department of psychology with completely different faculty. I was just a bit indignant when three weeks after surgery, in rehab, because I was still having weeping fits, I was told I had an "adjustment disorder."  I actually did tell the doctor there that he was the one who was warped if he thought a normal human being would adjust immediately.

Maybe it's a good thing then, to wait at least six months for step 2 and 3, because it takes months to "adjust," and also I wonder if getting to know your output with the bag gives insight into how it's going to be with a j-poucch?

Posted 10/30/2011 3:34 AM (GMT 0)
And I'm very sorry you lost that friend, especially that way. I do think this is contributing to the fear construction. I lost a friend horribly too, he was murdered in the street. I was not dealing with illness at the time, but for weeks afterwards I experienced some moments when I was afraid of the city environment where I was, got terrible panic just when a group of teenagers came into a store. Later I could separate all these things out: the loss and horror and sorrow, the fear, the mistrust, and that reality was really something else, not these feelings.
Posted 10/30/2011 3:28 PM (GMT 0)
Fear and anticipation are the worst for me. What makes it hard is i have to wait for a specific date, not for healing. I am not having a j-pouch so i hope the surgery will be easier. what gives mesome comfort is my dr can go through the stoma site or the abdomn if he must. i know in time when it all works, i will be able to reflect upon all this. i think part of it is i am not in control and feel helpless for the first time in my life.
Posted 10/30/2011 4:04 PM (GMT 0)
Fear, anticipation, uncertainty, not being in control -- they get to most everyone eventually..... somehow, though, we pretend it's "normal" to be in control, not afraid, etc, when everything can turn on a dime for anyone, any time...

Remember, courage is not about having no fear .... it's about what you do with the fear.... I think it's brave to be honest about what you're going through.
Posted 10/30/2011 10:32 PM (GMT 0)
I think what also gets to me is that for all I've been through, my dr says I will make a 100% recovery. It boggles my mind to be as sick as I was and to have to long term physical effects. Now mental, that's different. I have to believe he wouldnt expose himself to that liability by stating that unless he knows it to be true. Thanks again for all the replies, they have helped so much.
Posted 10/30/2011 10:49 PM (GMT 0)
You're never going to be the same mentally after being very sick.... not that the changes are all bad, but a lot of doctors think that their job is to patch you up and get you to where you were before, but that's not possible..... illness changes a person.

Some of the good changes can be increased compassion, perspective, appreciation, taking better care of health in the future etc.....

But it's excellent that a very strong shot of better health is coming up so soon for you! I hope surgery and recovery goes very smoothly.
Posted 10/30/2011 11:17 PM (GMT 0)
I think the problem for me is the not being in control of my health anymore. I have to rely on the doctors etc and hope/trust they know what they are doing. I have had some pretty horrific cock-ups from our delightful medical community and so am very wary about dealing with someone new. If I could fix myself I would as then if it went wrong then it would be my fault but that isn't an option and so have to get on with it.

Being nervous and scared is normal when you have been let down by anyone and you are putting your life and health in the hands of someone else and no matter how good they are there is always that little voice in your head saying 'but supposing they have a bad day, had an arguement with their wife/partner/husband, had some bad news' and nothing will make that little voice stop. Listen to what your surgeon and friend says, make sure you're happy with them and at some point you have to let someone earn your trust and from the sound of it this guy sounds great. Fear is normal but there are ways of dealing with it so it doesn't become all consuming.
Posted 10/31/2011 11:23 PM (GMT 0)
My wife thinks I am getting nervous b/c I have about 8 weeks until my reversal if all goes well. I am nervous for the pre-op as they are doing a bariumbenima and barium trough the stoma. My dr says its a road map and I guess its good since he is thorough. i dunno why it bugs me out. I cant wait until this is over, but i am thankful i have a chance at reversal. you all have been great.
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