hardest decision?

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summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 5/12/2009 5:13 PM (GMT -6)   
Was having surgery the hardest decision you ever made? 
I'm just being nosy, lol.
At the time i made my decision it was the hardest i had ever made, but i had to put my doggy to sleep last year and deciding on whether to do that or not was a thousand times harder than deciding to have surgery. 
I guess its all kind of relevant to whats going on at the time.
Anyway, just me being contemplative, lol.

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 5/12/2009 5:37 PM (GMT -6)   
Hardest decision?? Mmm.. Actually no- I was so sick and had tried everything so I knew that surgery was the only thing that could help me.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- TBA


Trigirl
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Date Joined Jan 2006
Total Posts : 768
   Posted 5/12/2009 5:39 PM (GMT -6)   
I haven't done it yet but it certainly is for me!!! I had to put my dog down too and it was horrible. I talked to a vet friend for weeks as my poor puppy of 13 years went down and down weight and health wise. I just had to relieve her suffering finally. I really am interested in how people have come to this decision. I can't seem to get ready or happy about it. It total with no reversal options. I've only suffered badly for the last 4 years and am in my first remission so don't want mess with feeling half normal. It's all so frustrating.

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 5/12/2009 6:15 PM (GMT -6)   
yes, this was the most difficult decision I've had to make----because there are no guarantees. Noon could tell me that there was a 100% chance I would be well.

I'm glad you posted this b/c I was just weighing this ( I thought by now I'd be pain free and I'm gassed up and and still experiencing cramping. Everytime it gets a little better or I have a few painfree hours or a good day or two, I get a bad day and boom--loads of output and lots of pain).

Basically, I had no other choice. I was sicker than sick and my colon was an absolute mess.

Yet, I haven't had to make a decision about life support or chemo. I've been very fortunate in my life.

Short answer--in 37 years, yes, this was the most difficult decision I had to make.
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 5/12/2009 10:07 PM (GMT -6)   
trigirl-if i had had more time, it might not have been so hard abotu my dog, but i took him to the vet to get a shot for what we thought was arthitis in his hip only to find out he had a heart problem and basically doggy alzhemirs! and that he was really suffering. I sat in that room for probably 2 hours just crying so hard i couldnt see. I knew he was suffering from his leg, but thought that the shot would make him better.

As for the decision for surgery i weighed it for A LONG time, but seeing my little boy go off to the beach to play and not being able to go clenched it. I can remeber the exact moment i said, i'm doing this. But i waivered back and forth of course, but talking to people on here helped me ALOT

ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 5/13/2009 3:00 AM (GMT -6)   
YES, YES, YES!
 
It is the biggest thing I have done in all 28 years of my life. When I first got ill the whole sense of getting better was to avoid surgery.  My mum would always be saying to me "you got to do all you can to hold onto your colon".  So after having a mind set of that for 10 or so years finally opening my mind to surgery was very difficult.
 
I think the fact I am not married and do not have children yet was a very big barrier to overcome.  However the last year has been such a struggle - then I had a revelation thought - imagine being married with children and then being to ill to pick them up and play with them.
 
I think the other thing which makes it such a hard choice is the fact its a one way ticket.  No going back after.
 
BUT - now I am nearly fully recovered from surgery I am starting to see the benefits of doing it.  The other night I had a full dinner then went out to the movies and watched the new Star Trek film with friends.  NO WAY I could have done that before will active colitus.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/13/2009 4:08 AM (GMT -6)   
oh yes, this is exactly what has been happening to me during this past year. thank you summer for bringging this up! i'm 36 yrs old and never had any major issues in my life, so i definitly have been facing the most hardest decision of my life.

it IS SOooooo hard and confusing, terrifying. i've been struggling w/ this for SO long, it has taken all of my stregth out of me. it's really not easy to make this decision. the idea of a big surgery like that is REALLY overwhelming, that i got SO exhausted, both from my bad physical condition and from all of this thinking..

but i now feel that i'm more and more starting to understand that i have no other choice and that things can't get better on their own, quite the opposite, they keep getting worse and it's becoming harder and harder to deal with it.

so i've made up my mind already and it is SO relieving to finally do so, and i'm DEFINITELY going for surgery!!!!! i sure think i'm doing the right thing.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 5/13/2009 4:35 AM (GMT -6)   
my proctocolectomy surgery was difficult and I was more worried because I'd have to put my husband/daughter through surgery AGAIN...they've been so good to me...but once I got over that, I knew if was the right one:)

I'm am dealing with the animal situation right now, though...and it is SO DIFFICULT:(

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/13/2009 7:43 AM (GMT -6)   
I really didn't make the "decision" to have a perm ileo - it became an emergency situation, life or death. And, I was only 23, so my parents were there to support me as I went thru all of that. I did NOT want anything to do with a perm ileo, but it was the only way to make me healthy. Bless Dr. Fazio for doing his job so well --- it will be 25 years this July since my final surgery.

One of the toughest decisions I made was having to have my father put on a ventilator, in an attempt to give him a minimal chance of living, knowing it was highly likely that he would never come off of it. He didn't. He passed about a week after that decision. Then just 5 years later, my mom was dying of cancer, and I had to have my puppy of 13 years put to sleep 2 weeks before my mom passed. That was the toughest 5 years of my life. Now my DH has been diagnosed with ALS with life expectency of 2-5 years.... ENOUGH!!!!!

So, no the ileo wasn't the hardest decision in my life. But I would definitely not have been able to CHOOSE it. 25 years able to help ago, internet wasn't around. I think being able to network on these forums is just soooo dang helpful to those contemplating surgery or who are having problems after surgery. My goal is to be as helpful as possible on this forum since I just know how much it would have helped me back in the day.... I sure hope that I am able to do that.

Good topic Summer. Sorry about your puppy. I know the hearbreak. We don't have children. She was our baby. I haven't been able to get another dog yet. Losing her justt hurt way too bad.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 5/13/2009 7:50 AM (GMT -6)   
I would really like to second what Peggy has said about how helpful these forums and posts are. I find answers and help, but also a feeling a not being alone in this when I visit this site. Everyone does a great job.
Elli 28
UC since 17
Azathioprine, prednisolone, Asacol,
blood transfusions, iron infusions
No Joy!
 
Colon Removed 18 March 1:30pm!
Ileostomy
Option for Jpouch but have not made my mind up yet!


hsmom
Regular Member


Date Joined Oct 2004
Total Posts : 35
   Posted 5/13/2009 9:52 AM (GMT -6)   
My surgery was done 2 months ago today. It was done as an emergency surgery as I had a major blockage. I was concerned at first about living with a bag but once I saw that I could lead a much more "normal " life that didn't revolve around the bathroom, I have adjusted to it so much better than I thought I would. My daughter just said the other day that she can see how I have been helped by having this forum to read and ask questions. She said that it would have been harder on me in the days with no internet.

It was one of those decisions that I was only given a few minutes to agree that I really had no other choice with all the fistulas and strictures and just the mess inside me. I still have most of my colon and crohn's but this bag will probably be with me the rest of my life.

PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/25/2009 5:16 PM (GMT -6)   
I am bumping this thread, it is such a good topic. It is helping me a lot right now as I am making my decision to get a total colectomy and possible J pouch later. I am very sick and havent lived a normal life since last december. It is the hardest decision of my life this far, I am 26 , single, etc. It is really hard but I think I don't really have a choice as I am slowly inching towards a toxic megacolon, my GI told me... (Unresponsive UC tried every type of medication...)I have my appointment with the surgeon tomorrow morning...
Diagnosed with severe pancolitis 03/09
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/25/2009 6:50 PM (GMT -6)   
do you know i actually hoped i would get toxic megacolon so that i wouldnt have to make the decision. Now thats messed up, lol.
Good luck with your appointment tomorrow

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 5/25/2009 8:52 PM (GMT -6)   

My UC hit hard and heavy two years ago, and I found very little comfort from ANY of the medications, including Prednisone and Remicade.  I also had many complications from the side effects of these medications, so my decision was quick and I the surgery could not happen fast enough. 

I saw the surgery as my cure for the disease.  I was in so much pain and I was losing the battle minute by minute.  My biggest decision was to actually take the time to take care of me, as I really didn't want to slow down.  I was enrolled in classes, working full-time, and just really had a packed schedule.  I had found my nitch in living with UC, but my family had a mini intervention and I quit school, took off work, and was given Penelope (my stoma). 

I love Penelope.  She's saved my life!  Well, actually my GI and surgeon did...but it's Penelope that's my daily reminder of how lucky I am.  The only complaint I have is changing my accessory  (appliance) every 3-4 days.  It was every 6-7 days, but I am now using a one piece, and the longivity is less. 

Anyway, no...this decision was not the most difficult.  I have yet to really make a decision I cry over, or really stress about.  I do admit the week prior to surgery I was second guessing my decision, but that's normal.  Making it was no biggie.  Now, when/if the day comes to have 'the talk' with our vet regarding my cat Chloe...I'll be a mess.  Chloe was with me during a bad break-up many years ago, and she was up with me during much of UC bathroom breaks 24/7.  She's my Chloe Louise...I just can't think of being without her.

I know many of you have and did struggle with your decision.  The way I see it is that you have a malfunction in your body...there is something not working appropriately and it is up to you to take care of your body...if the medications are not working and that something (for us a very nasty little disease) just is being stubborn, then kick it's ass!  Take care of the culprit that is very hastidly intruding into your life and be done with it!  I know it's a little blunt, but seriously...what good has your colon brought you thus far?  Pain?  Agony?  A major dip in your quality of life?  Oh, not to mention all the bonding time you've had with your bathroom wall and all the imperfections surrounding your John.  : )  I am not proud to say that I am a Sudoku Princess...and why is that?  I needed something to do and take my mind off that excrutiating pain!

Sorry...I got a little carried away.  Have a nice evening!!!!!!!

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


schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 5/25/2009 11:12 PM (GMT -6)   

Absolutely, and I know in my head that it was the right choice, but when I have to change an appliance, or overcome the surgical pain I still feel with my rectum removal, my heart may have a different answer.  My MIL really did a number on me, and I thought seriously of asking my wife if she wanted to leave me now - feeling somewhat  less than 100% of a man - at least how I was feeling recently.

But I had to stop Remicade as the chances of more surgery - after my next August big leg surgery is very real - I may need foot and leg - tune up surgeries from time to time as a result of my charkot disease.

And I do have to say that this is better than having to have a bedpan cleaned for me 10+ times a day when I had leg surgery last year. 

So it was the best decision at the time - would I opt for it - No.  But it was the best plan B I could possibly have - and keep my wonderful life and wife intact.

bob

 


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/25/2009 11:28 PM (GMT -6)   
Summerstorm- about almost wanting to get toxic megacolon- I feel that way right now, it would be easier if it was an imminent life or death thing!!! THen I would not have a choice and just go with the flow...

All the answers here a very educative, thanks for a great topic :)
26 Years old
Diagnosed with severe pancolitis 03/09 unresponsive to medical treatment
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
Considering total colectomy + J pouch a couple of months later


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 5/26/2009 1:27 PM (GMT -6)   

PP...

You are so young and though the surgery sounds scary, it really would one of the best choices if you are not responding to medication.  I cannot tell you how amazing that feeling is to feel the UC gone.  WOW!!!  I still love to just sit and feel the silence...feel the lack of pain...lack of bloating...lack of feeling every little movement of everything that passed through from beginning to end.  It's GONE!!!

I wish you the best of luck with your decision, and just know that you are supported 100% with your decision.  I simply could not imagine my life becoming any more out of control, so out the colon came!  But I do have to warn you...once you do make the decision to nix the disease your colon is going to suck up and act like your BFFs...no joke!  But don't let it fool you!  It's still an angry little cuss that's main goal is to attack you!!!  : )

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


jackarat
Regular Member


Date Joined May 2009
Total Posts : 29
   Posted 5/26/2009 5:16 PM (GMT -6)   
easy decision i have ever made !!!!!!!!
no ifs or buts about it , after being sick so long and drinking bowel prep every week to have a bm , couldnt wait to have it done ......
if only there were an answer to my other chronic illness issues , life would be a dream not that im complaining there are always people worse off .

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 5/26/2009 10:16 PM (GMT -6)   
It was awesome to read all the replies that have come to this thread.

SS I don't think that's noisy at all. I think it's great of you to be interested and care about the people on this forum.

I have decided I have had enough of the pain and hinderance to my life. I called my Gi to get an other surgeon opinion and now I will wait for the appointment and wait for a date.

Thank-you all for your stories.

PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/27/2009 3:22 AM (GMT -6)   
Robinbyrd- Thank you so much for your post! I am starting to realise that I won't be a UC slave for the rest of my life :) It's nice to know that you are 100% satisfied with your decision. I plan to feel that way too :) . My disease got out of control so fast , got my diagnosis in march and I have tried all the medicines already. I guess I will be glad not to have suffered years and years of this though. Some people endure pain for so long... I just have to get used to the idea of a stoma (I hope it will be temporary)... Thank you so much for your kind words and support.
26 Years old
Diagnosed with severe pancolitis 03/09 unresponsive to medical treatment
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
Considering total colectomy + J pouch a couple of months later


Xianghua17
Regular Member


Date Joined Jun 2003
Total Posts : 79
   Posted 5/27/2009 8:41 AM (GMT -6)   
Not at all. At the time mine happened I was so sick I couldn't work and all I wanted to do was lay on the couch and cry. I couldn't eat, drink, or sleep. Sweeping the floor made me feel out of breath. Plus I was being really mean to my daughter because of the pain. So no, it was an easy decision for me. I would do it all over again if given the choice. :-)
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