PLEASE tell me (surgery in 2 days)...

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 5/5/2009 7:46 AM (GMT -6)   
that..

a) This IS the right decision (procto-colectomy)
b) This WILL take away all the gut pain and arthritic pain
c) This WILL make me healthier
d) I WILL be able to eat healthier once this is all said and done
e) I WILL be able to focus on my body and lose the 100lbs that steroids so generously gave me because my body will be *better*!!!! (Darn &#$*#$ Steroids!)

This is going to be ok right? I can't believe I start prepping in 15 hours...I have much to do today. This is a permanent decision and I'm questioning everything now. EVERYTHING. I'm trying to remind myself that once this is done.. I can start to a new and healthy me. Right now, my diet consist of junk because it's what DOES NOT hurt my gut. I'm on at LEAST 6 Loratabs (7.5/500) a day and the pharmacy screwed them up last weekend, and when I figured it out, I was beginning to hurt after just 36 hours on a lower dose..more bathroom breaks, etc.

Even despite all that, I'm trying to convince my head.. THIS IS THE RIGHT THING TO DO. I'm worried sick about this bag. Worried about my self-image. Worried I'm making the wrong decision, Worried I'll never get *healthy* again and I'll just end up unhealthy with a bag. I just can't stop the thoughts today. This is all too overwhelming.

And, to top it off, I feel like a pregnant woman nesting.. I have all these things I feel the NEED to get done. I've re-prioritized my list numerous times. Some things will just have to wait and my husband has offered to take care of several things while I'm in the hospital...This is just too much.

And, a question...they told me I could take a pain pill as late as 11pm tomorrow night (prep day), but no more after that. I'm *assuming* since my colon will be clear I should be pain free, but I'm still terrified of being in pain. Any advice?
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/5/2009 8:03 AM (GMT -6)   
Hi Kaycie
 
i dont have the answers to your question, but i do know that getting rid of my bowel was the best thing i did - though i had colonic inertia not crohns.  but pain-wise yeah you should be good.  crohns affects the large bowel right?  then get it out i say! I thought having a bag was the end of the world but my life doesnt revolve around the loo or pain or when will i need the loo or how the amount of meds to make me go....
 
if you have exhausted every opportunity then this is your only option for a healthy life.  i guess a procto-colectomy is removing the rectum too?  You will lose weight with not eating.  i know nothing of steriods but they make you gain weight dont they. Ask questions when you go in about the pain meds - they give them to you whilst you are under anaesthetic anyhow.
 
Its normal to worry and you have done so well also to be blessed with a little girl too... you will be ok.
Karen 47 yrs
1997: Diagnosed IBS
2003: Pelvic floor repair surgery (rectocele/cystocele)
2006: STARR surgery for mucosal prolapse/Obstruction
2006: Diagnosed with slow transit constipation
2007: Sigmoid resection because of partial volvulus resulting in immediate colonic inertia
 
15 JANUARY 2009: scheduled for T/C
12 FEBRUARY 2009 - Re-scheduled T/C- (postponed as the Professor is away)
10 MARCH 2009 - T/C HORRAY FOR A CANCELLATION!
Loop Ileostomy - Due for reversal around June 2009
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 5/5/2009 9:56 AM (GMT -6)   
For ME- having the surgery was the right decision. I also have lots of weight to lose - I gained 35 during pred use and was already 25 overweight.

I had surgery 7 weeks ago and just got back to work. I can eat salads for the first time in 3 yrs. I can eat yogurt and drink milk and eat fruit. I couldn't do this before. No carrots or peels, though.

I have a temporary ostomy and will probably get the jpouch sometime this fall.

I don't know about the arthritis pain- I have pain from pred use and being overweight, I think.
I am still getting mouth sores which I attribute to the UC.

The recovery is taxing- you need to take time to feel better from the stress of the surgery.

Are you eventually having a jpouch?
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

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


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/5/2009 11:13 AM (GMT -6)   
you only have to hang on a little while longer...I am sorry you are having such doubts...I don't think anyone can give you all the answers you are looking for!! Just know that you will feel so much better post surgery. You will have pain, but it's a different pain, and you will get plenty of meds to help with that!!

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 5/5/2009 2:15 PM (GMT -6)   
My heart is asking me these questions too and I haven't even set a date!! I hope it all works well and you can cope with the results. Everyone here seems so happy with the decision it has encouraged me greatly. Read this yesterday somewhere "You have to go thru hell to get to Heaven" Weight usually does go down with the surgery, so keep that positive in mind. Your daughter will have a healthy Mom, who can play with her and be there for her. Praying for your quick recovery.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/5/2009 2:24 PM (GMT -6)   
I had Crohn's in the large intestine and rectum and having a proctocolectomy was the best thing I've ever done. It completely removed the disease and gave me my life back.

I haven't taken any medicine since surgery. It's great to be healthy again and not have to worry about having to be near a bathroom all the time. You are making the right decision and will be so much healthier once that diseased colon is out of you.
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.


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 5/5/2009 2:47 PM (GMT -6)   
Cecilia - TY! My Crohn's is mostly in my sigmoid and rectum, but has moved throughout my lg intestines, hence why I *might* get a colostomy rather then a ileostomy, but I'm more then likely to have an ileostomy. I'm just nervous.. though I'm trying to rationalize and think.. "Ok, you know your rectum is TERRIBLE and even if that is ALL they take out, you would STILL have a PERMANENT bag."

This waiting and emotions suck! My mom has had multiple surgeries for hysteroectomy (partial and then full) and then lots of scar tissue surgeries. She tells me that once it's over, you WILL feel better about the whole thing.

I guess it doesn't help that I'm going to be stuck in the hospital on Mother's Day. Took me 3 years to get pregnant, then we lost one of our daughters after delivery, then my other spent 2 months in the NICU...and the Mother's Day when I was pregnant...was bittersweet because we knew about our daughter's dx and that she likely wouldn't survive... Mother's Day is already tough...and this year it's going to be even more difficult.

Trigirl - The decision was tough too, I won't lie..but this waiting has eaten me alive. I started focusing on what I needed to get done pre-surgery...and making lists...and resting, etc. But, now that I'm so close and those lose ends need finished, it's been hard. Hang in there!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/5/2009 3:29 PM (GMT -6)   
you are going to be fine! and healthy! in just a few hours that nasty old colon that is literally sucking the life out of you will be rotting in the bottom of a trashcan! and in a few weeks you will be back onyour feet being an awesome mom and living a great life!
And if you get a perm ileo, you will be fine with that too!

good luck!

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 5/5/2009 8:56 PM (GMT -6)   

I was nesting too prior to surgery.  You do go through many mixed emotions before hand too...this is a crazy time! 

I know how scary it is preparing to have an organ removed...and then to be left with an ileostomy.  It's really not like we just decided one day to have our colon removed.  But you know what?  Having had my proctocolectomy I feel great!  My ileo is wonderful, and though it takes time to find an appliance that's best for you, you are going to be pain free.  I tell everyone the best feeling is to have no feeling at all!  Most of us completely understand the constant tummy pain and frequent runs to the bathroom.  My UC effected my time with my infant son (at the time) and it was horrible!  I hated having to lay him down and run to the bathroom only to be in excrutiating pain all the while listening to my baby cry. 

I was on Prednisone for almost two years and it was the worst medication...that and Remicaid.  Together they attacked my immune system, caused a massive weight gain, and made me super pissy and emotional.  I wasn't able to lose weight unless I fasted, which is silly, and I was tired of being swollen all the time.  My face was horribly round and poofy.  I also had the hump at the base of my neck on my back, and my ankle bones were M.I.A.  I wasn't able to eat most veggies, dairy products and most fruits with seeds (which are my favorite).  Now I'm able to eat just about whatever I want.  I enduldged in some peanuts a week ago or so ago, and though I chomped the heck out of them I did okay.  I'm eating strawberries, shredded lettuce, mustard...just all kinds of goodness!!!  : ) 

You are making a very brave and courageous decision.  You are taking control and taking your life back!  It's kind of emotional as you start living again.  The things you didn't realize were effected by your disease will begin to become apparent, and it's just unbelievable how awesome every moment becomes. 

I wish you the best...and I know you'll be strong.  You are an inspiration to those around you, as you are proving that we do control our lives and that we can take the bull by the horns!!!  Yea for 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


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/6/2009 4:27 AM (GMT -6)   
RobinByrd said...

You are making a very brave and courageous decision.  You are taking control and taking your life back!  It's kind of emotional as you start living again.  The things you didn't realize were effected by your disease will begin to become apparent, and it's just unbelievable how awesome every moment becomes. 

RobinByrd...very well said!!

chelebel
Regular Member


Date Joined Mar 2009
Total Posts : 26
   Posted 5/6/2009 4:55 AM (GMT -6)   
Hi there
Its been just over 4 weeks since I had the same surgery and have to pretty much agree with comments already made. Do give yourself time to recovery from the surger, don't be hard on yourself and don't push it, just listen to your body. I am finding the ileo and bag fine to deal with, much better than running back and for to the bathroom and being in pain. And I really don't miss not knowing what is happening next with the uc, one day it would feel a little better then the next I would be right back with a masive flare up.  Just finished my last pred tablet a couple of days ago, and I actually do think my tummy in beginning to shrink slightly. So glad to be off all meds now, it is such a relief. I had arthritic pain too, and so far so good that it has gone away. It is such an emotional time, but you will get through it and feel much better once you are on the road to recovery. Good luck and lots of good wishes being sent your way. x


Panproctocolectomy scheduled for 3rd April.  Diagnosed Ulcerative Colitis 18 years ago.

Post Edited (chelebel) : 5/6/2009 4:58:29 AM (GMT-6)

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