Do you feel guilty when.....

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Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 5/29/2009 9:34 PM (GMT -7)   
How can I phrase this.....

So I remember how badly I felt before surgery & how sick I was.
Now I know how good I feel after recovery, and how much energy I have, that I didn't realize I'd lost from sickness. I am glad I had THE surgery; I truly wish that for everyone.

So if someone from this forum wants encouragement b4 surgery. I give them encouragement, advice, whatever and that helps them to make the tough decision to get and ostomy.....
But then that person(s) is having a hard time adjusting for whatever reason (depression, complications).

Do you feel a little responsible for what they are going through. As if you had a hand in it because you encouraged their decision.
I do.
I feel so badly for everyone who is having a hard time after surgery. For those who've had it since I had mine.


Maybe I'm too optimistic for other people.
Maybe I'm just hormonal right now.

Know what I mean?
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/30/2009 3:08 AM (GMT -7)   
The unfortunate thing is that many of these surgeries come with possibilities of complications...I know I was given the list, by my doc, before I did the surgery.  And on top of that, every one's disease is different, so it is SO difficult to say what will happen to each individual person (just like these diseases affect us all differently).
 
I think every person who reads these posts understands what COULD happen and not every surgery is the same.  That is why it is an individual choice made be the person...unless of course it was emergency life saving surgery...The best part about these posts is that a patient's eyes are open BEFORE surgery and the patient knows what to look for as far as fevers/blockages/general care during recovery!
 
I don't think you should hold yourself responsible...the recovery is just that, recovery, and it is not always easy...the positive side of that is that the OVERALL OUTCOME is usually worth it.  Maybe it is hormones making you feel this way...just remember you are helping people make a decision, NOT MAKING the decision for them...

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/30/2009 6:59 AM (GMT -7)   

I do feel badly for those who have complications from this surgery and question their choice, especially since I think our experiences tend to help them make the decision to have surgery.  However, if they need surgery, they need surgery and they also have to take responsibility to get educated on the process and the recovery.  Asking tough questions of us, but of especially of their surgeon, are critical.  I feel more badly for those who are extremely ill and resistant to surgery.  For that group their fear towers over common sense.  When I hear that a UC patient has had to quit their job, go on disability, stop leaving the house, etc. I feel great sorrow.  There is such a rich life post surgery that if they could only meet me face to face they would see the potential.

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


NEsailor
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 5/30/2009 7:23 AM (GMT -7)   
Don't feel guilty. You are offering YOUR reaction and response to the surgery. And caring, which is HUGE when someone feels alone and scared.

I know I was totally blessed with nothing going awry in surgery or recovery. My surgeon said to a friend, also a patient, that I was textbook for everything that could go right! And I figured everything out without help, beyond one visit with the nurse before I was released. I did go home with Xanax ... and gave it to my mother to hold, in case my brain wasn't back on center. I do remember being a little scared of myself in retrospect. It was a very short time though. And I also remember being amazed at how sick I must have been compared to how good I felt after the surgery.

So I DO get how you feel compared to those whose bodies and psyches are fighting back. It's still all good. Keep responding; every post helps someone.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/30/2009 9:15 AM (GMT -7)   
sometimes i feel bad about it, because i think, gosh i talked to some of these people and told them how great things were for me and then it didnt go well for them, and maybe they wouldnt have done this if i had told them different
But then i think about people like Robyn who we all talked to and told her how great we felt and now she is doing great!
and i realize that it evens out.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 5/30/2009 4:42 PM (GMT -7)   

Oh Chassity...you're just such a caring little thing!

I believe that with any surgery there can be pros and cons.  Everyone's life situation is different and the way we handle ourselves emotionally, physically, spiritually, etc. is an individual experience.  Some do struggle with the surgery because there are simply so many changes to endure!  However, some of us feel that the physical changes are a small price to pay for our health.  Then again, even though we feel that way, our emotions do not always agree.  It's such a deeply difficult topic. 

Maybe it's because I'm in the 'emotionally helping' profession that I see that someone is struggling and I instantly work on ways to help them problem-solve.  Much of the time I am the one who has forced the change in my client's lives and if they struggle with that change I simply help them to either accept that change in a positive way or we work on finding another solution that will give them satisifaction and success. 

When someone is suffering with the surgery and their situation, I do see it as a stepping stone.  Some day, some way we all find that moment that brings us to that next step.  For those who are struggling that next step would be peace and acceptance.

For the most part one will mourn their identity prior to becoming ill.  They will begin to accept their new self, though it is not ideal.  When the surgery occurs not only are we having to change our identity again, but we are losing an actual piece of our being and being left with an altered state.  Once our health is restored we are again forced to change our identity.  It may be that for those of us who suffered just a few years and were cured practically right away, we may not struggle with this identity issue as much b/c we still remember who we were and are.  However, for those who have struggled many many years, they may have a very difficult time find their new self and accepting the physical changes.  For so long they were forced to accept a life they did not approve of, and it is very easy to forget the positives of life when for so long they lived with the negatives. 

I believe this forum is extremely special.  No one knows when that rare experience will occur that your light bulb goes on and you get it.  You get whatever it is that you need to take that next step.  Be it from this forum, from someone in your life, or maybe something from a talk show.  You never know.  Our life changing moments are blessings in disguise.

My heart goes out to those of you who are having such a difficult time finding your way to that next step.  But don't worry.  It's completely natural to be scared and overwhelmed.  You are living a new life with a new you.  Try not to let the words and thoughts that cloud your mind to control your heart.  Your heart knows that you've beat a disease and that you are a survivor.  Allow your heart to guide you and you may be surprised what you find.

*hugs*

smurf  


: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 5/30/2009 7:59 PM (GMT -7)   
That was BEAUTIFUL Robin. just beautiful!!
*snifle* (she wipes away a tear)
You all are great!


I just know that sometimes I wish I didn't have to have an ostomy-and things are going fine for me. So I'm constantly hoping and praying for those who are having a hard time.

Good Luck to all of you!
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/31/2009 3:04 AM (GMT -7)   
Robyn,
You said that beautifully.... Gosh, what could I even add?! Except, we certainly are not physicians who can give medical advice based on the individual patient. We are only th support fo the patient and assist with their pre and post surgery issues. I always think and pray that everyone has a good outcome, tho recovery issues are hard to deal with when you are home from the hospital. That can be a lonely feeling.

Again, Robyn, loved your post. So glad that you have hung around and have such a way with words. Thanks,
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 5/31/2009 3:23 AM (GMT -7)   
I know exactly what you are feeling Chassity, but I also really agree with what everyone else said. I too have felt some guilt at one time or another but then I think of me and how many complications I've had and I still would have done my surgery. Even the way I am right now with these new problems, I don't regret it one bit because my overall quality of life is still so much better than before any of my surgeries. I hope everyone eventually feels the same.

And then when we have complications or problems like I'm having now, we just seek out more love and support from our friends here and in "real life" and we get through it again somehow. I can't think of anyone on here that I've read about that has regrets, so unless I'm not reading the right posts, I think we are all blessed by our surgery no matter what the outcome.

Thank you all for your continued love and support, I couldn't do this without you!!! When/if you read my posts please don't anyone feel guilty. I don't blame anyone at all, on the contrary, I am thankful!!
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - March 13, 2007
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Temporary Ileostomy due to small bowell perforation Septepmber 29, 2008
Ileostomy Reversal - December 15, 2008
Multiple Small Bowel Abscesses-December 22, 2008
Leak at original Anastamosis -December 25, 2008
JP Drain removed - January 23, 2009
Still adjusting to life without my large intestine...
 
The whole world is at your feet; so paint your toenails Red!
 

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