Is the wait before the sugery worse than the surgery itself?

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schrek-chewbacca hunk
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Date Joined Jun 2005
Total Posts : 2666
   Posted 3/24/2009 3:52 PM (GMT -6)   
My doc just emailed me to give me the reassurance pep talk - and he says that I am probably going through a harder time now with emotional pain - than I will be having with physical pain.  He said that he would guarantee that he has enough pain killer to keep me under control and not to worry about that.  I am trying to belive him - he is amazing, and even gave me his personal cell phone number to call him before and after the surgery.
 
What are your experiences with weeks and months of wait prior to the known procedure actually being performed?
 
I would love to know/
 
love to all bob 

sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 3/24/2009 5:44 PM (GMT -6)   
I found the anticipation much worse than the actual operation. In all honesty, the pain from the operation was the least of any of my problems. Did it hurt? Sure, I was in some pain, but pain meds do control it, and it is always amazing how your body can cope with trauma. I had a much harder time emotionally. Adjusting to having a bag mentally was by far harder on me than any physical pain. Not to make it sound like even the emotional stuff won't pass, because it will! And you have an excellent head start, because you are on the boards. All the information you are gathering will help you on this journey. You will be able to recall all the wonderful things people have done with ostomies, and know that your life will also be better. Continue to come here and ask questions. You'll do brilliantly!
If at first you do not succeed, then skydiving is surely not meant for you.


Jo - UC, total colectomy and ileostomy on August 24, 2007. Step 2 & ileostomy switched to left side - May 27, 2008, and take down August 8, 2008. Gallbladder removed December 5, 2008. LIFE IS GOOD.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/24/2009 8:53 PM (GMT -6)   
yes the wait is sooo bad, and you are probably going to try to talk yourself out of it 20 times a day! i know i did, an dsome of the things i was worried abotu where sooo stupid. I worried sick over doing a cartwheel...who worries about that?
But just keep reminding yourself that the surgery will make you better!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/24/2009 11:16 PM (GMT -6)   

First of all, can I say how wonderful your doctor is? He's a keeper!

For me, the anticipation was far worse than the surgery. That's probably why I waited 7 years to do it! Once I made up my mind, I was fine. The hardest part, for me, was realizing that I had done everything humanly possible to save a colon that couldn't be saved. Surgery was all that was left, and it had to be done. I wrote down all of the pros and cons, and the pros far outweighed the cons, so I knew it was the right thing to do. One of the huge cons for me was the increased risk for colon or rectal cancer.

I'm so glad I had the surgery. It has given me my life back and was the best thing I've ever done. Maybe making a list of pros and cons would help you, too.


Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


RooR
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 3/25/2009 2:58 AM (GMT -6)   
I never planned on getting a colostomy. I was lying in a hospital bed, when the IBD team at Cedar's Sinai Medical Center came into my room on a Friday evening, and told me a colectomy was scheduled for monday. The surgeon then came in right after the GI docs, and told me she would first perform a laproscopy and try to reconnect me, so I wouldn't have a bag. So, I had two days to think about this (thinking everything would go as planned and I would not need a bag) on heavy doses of Dilaudid. I had no idea if I would have a bag until I woke up from surgery.

I was surprisingly optimistic going into it, because I had been severely suffering from Crohn's Disease and spent a month and a half in the hospital where I lost 40 lbs going into the surgery. I vaguely remember waking up from anesthesia and seeing my mom come in to see me, and the first thing I moaned was "do i have a bag," to which she replied "yes." I knew something major happened because I was in the most excruciating pain ever, it felt like someone took a pitchfork and gored me. All I could moan was more pain meds, and I figured they made a full incision because there was pain all over.

Post op was definitely worse for me, because I didn't know if I was going to be getting a colostomy, and it was mentally hard to cope with and accept.

Luckily for me this colostomy is only temporary and I am having it reversed in May.

Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 3/25/2009 2:15 PM (GMT -6)   
I found the weeks before surgery much worse than my recovery afterwards. I was in severe pain pre-surgery due to inflammation, despite pain meds. My anxiety about the surgery was sky-high, and I found Xanax helpful for the first time. Like your doctor has said, my pain was managed very well after surgery. I awoke with a pain pump of Dilauded, and the pain was much less severe than the pain I had experienced in the months before surgery. I was able to wean pretty easily onto oral pain meds, and was off all pain medication completely within one month after surgery.

For me, I had a fairly significant emotional adjustment to make to having a pouch, but I was gaining acceptance of it within a month, and was completely comfortable with the appliance and my appearance within 2 months. I had a great ET rn at the hospital, and I was fortunate that the home health agency which provided care for me for a few weeks after surgery had an ET rn as well.

Your doctor sounds amazing. With that kind of care and support I am sure you will do very well. Hang in there!
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Proctofoam, Entocort, Remicade, Humira
10/10/08 colon removed, temporary ileostomy
11/10/08 FINALLY off prednisone after 18 months
2nd of 3 surgeries planned for '09 to form j-pouch


ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 3/25/2009 5:54 PM (GMT -6)   
I'm going thru this right now ... I have my sugery scheduled for April 7th and am waiting patiently.

Everyday I wake up and think about how I don't have to take meds again EVER. That alone is a big plus for me :-)

Stay positive!

schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 3/25/2009 6:47 PM (GMT -6)   

Thanks to all the Saints who keep merchin in here in this forum - I am keeping up only because of you all

 

bob with love to all  


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/25/2009 6:53 PM (GMT -6)   
Wow, I thought I had a wonderful doc (still do, haha)...your's is a one in a million!!!

Personally, while I was nervous, I LOOKED FORWARD to the surgery...I knew things would be better on the flip side...You'll be okay, you have the site to help you out and it sounds like your wife is there for you, too!

chelebel
Regular Member


Date Joined Mar 2009
Total Posts : 26
   Posted 3/26/2009 3:30 AM (GMT -6)   
Hey I thought my doc was good, but yours sounds even better! I am due surgery in a week tomorrow, and every morning since the past 6 weeks I have been waking up thinking about it. The panic is definately getting worse!!!! Good luck with yours x
Panproctocolectomy scheduled for 3rd April.  Diagnosed Ulcerative Colitis 18 years ago.


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/26/2009 8:17 AM (GMT -6)   
emotionally wise- i was worse after surgery. Dealing with the bag has been hard. I am taking low doses of xanax and honestly it has helped.

Even though I had already resigned myself to having surgery I didn't have a date for it until I went into to see the surgeon for a second consultation and he scheduled me for two days later.

In fact right after the visit I went right into the hospital straight from his office. So, I didn't have that much time to think about it.

I am 12days post op and still in some pain but very managed right now- percocet.
I wish you the best...
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


kimlin08
Regular Member


Date Joined Feb 2009
Total Posts : 46
   Posted 3/26/2009 9:28 PM (GMT -6)   
I have an apponitment with my new surgeon on April 14....then i iwll be preparing for my reversal surgery....In August....I wake every am adn wonder if it will be a sucessful surgery.....I wwant to spend the summer with my 2 kids and 2 step kids and make this a great summer....there dad and me were married 5 months when i had my emergency colostomy......I think that was the worse part for me waking up with the surprize of my life.....all due to a botched surgery to remove a cyst on my overy....This forum has helped me more than talking with any nurse or doctor I ever met.....thank u my new friends....kim/maggie
Maggie in tennessee....coping


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/27/2009 5:53 PM (GMT -6)   
Jackie - are you up and moving about, gaining strength and getting some walking in?  Keep moving and getting around as the endorphines will make you feel better mentally and the extra oxygen will help you to feel better overall.  Keep your chin up and think positive....  Best of luck in your recovery.

Maggie - we are hear to listen and talk with you anytime you need it.  Keep in touch with us an d let us know how you are doing?  Any plans made for the summer yet?

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

Post Edited (peggy113) : 3/27/2009 5:57:16 PM (GMT-6)


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/27/2009 7:03 PM (GMT -6)   
Thanks Peggy- yeah I am walking about a block twice a day and doing some very very light housekeeping ( washing dishes) and dusting. I am tired today since I didn't take a nap. I had some visitors this afternoon.

Tomorrow I am going to try to walk some more. My back starts to hurt after a while and I am using the heating pad in the evenings.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


Bella_lostmybag
Regular Member


Date Joined Dec 2008
Total Posts : 104
   Posted 3/27/2009 7:31 PM (GMT -6)   
Hey :-)   haha I actually don't remember anything from the first 4 days after my surgery lol which Im pretty sure that's a good thing..I remember a few things..like when they took my NG tube out. I figured that hurt but it just felt wierd when it got close to my throat and she pulled it out while she was talking to me. She told me to take a deep breath and while I was doing that she pulled it out. It was out before I knew it! And I remember my boyfriend and brother feeding me ice. I remember when they took my catheter out..and I remember them making me sit in a chair..that was a little painful but I had my mom and the nurse help me up so I didnt really have to use my stomach muscles. I found that if I wanted to get up out of my hospial bed to empty my bag and my mom was asleep, if I kinda rolled to the side and used the bar on the bed to help pull me up I could get up by myself..so thats a little tip for you..hope that helps :-)   To answer your question (sorry i got a little off topic lol) thats awesome that your surgeon gave you his cell number! My surgeon was amazing and she made sure that i was getting enough pain medicine but she sent me home with..NONE!! shocked So I didnt sleep too well the first 2 nights..I got 4 hrs total for those 2 nights haha but im glad she did that..It made me stronger in the end. I didnt really think about my surgery like..OMG Im getting my guts cut open and im so scared..it was more about getting my life back. I pretty much missed the last half off my 11th grade year and all of my summer because I was so sick that I couldnt do anything. I could barely make my bed without feeling so weak that I was going to pass out.. it was REALLY bad. I was so sick. Ah sorry I keep getting off topic lol .. So idk what it is for you but for me it was more of knowing that im going to be So much better and healthier rather than scared. It didnt really hit me until the day of the surgery. And then I freaked and started balling my eyes out and balled til they knocked me out lol My mom was crying too and that deff didnt help haha but my dad held me and calmed me down a lot. haha this is kinda hilarious..I guess one of those 4 days I dont remember because I dont remember this AT ALL ( I wish I did though) I guess I looked at the surgeon when she was asking me to rate my pain and blah blah blah and she was making me mad so I yelled ARE YOU DONE YET! I WANT MY DRUGS! And I like..yelled at her haha That mustve been some good stuff lol Dang, I wish they wouldve taped that..I so wouldve posted that on youtube hahahah Anyway, good luck with your surgery! The anticipation sounds like its eating you up haha try to keep your mind off it..I know its really hard though. It'll come a lot faster than you think :-)
17, SENIOR in high school
Dx with Ulcerative Colitis on March 18,2008
Step1 Ileostomy on Nov.19,2008..waiting on Step2 =]
"The past is history, the future is a mystery. Today is a gift, that's why it's called the present"


kimlin08
Regular Member


Date Joined Feb 2009
Total Posts : 46
   Posted 3/27/2009 9:42 PM (GMT -6)   
Bella, I love your name...Anyway....loved your post....U are brave adn so mature to be so young.....Ur mom and dad I know are so proud of you....Take care and keep up the funny post they make me smile....kim/maggie

Maggie in tennessee....coping

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