Getting a total colectomy!

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Terrell
New Member


Date Joined Apr 2010
Total Posts : 13
   Posted 4/26/2010 10:41 PM (GMT -6)   
cry  Hello Everyone, I just joined HealingWell and I am soo happy that I did, I never knew there was soo many people out there dealing with the same thing I am dealing with. Here is my story, I am a 34 yr old f that has crohn's that was diagnosed since March of '97. I have been having alot of problems just about my whole life. I have had several surgeries and seems to have taken every medicine possible for crohn's. Currently I have a colostomy since July '09, since then I have been hospitalized 4 times for prolapses and etc. I also have a rectovaginal fistula that is causing major problems as well. My doctor and my surgeon just talked with me last week and came up with the conclusion of getting a total colectomy, they said my colon is completely diseased and had to be removed, they also said the colon is what's making me very ill. I was told that I can have my life back but I will just have the colostomy for the rest of my life. I have 3 beautiful healthy children that keeps me going (on the days that I have enough energy). I have to stay strong for my babies but this is very hard for me! I just do not have a clue as to HOW to feel right now? Anyone has any words of encouragement, I desperately need them. Thanks

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 4/27/2010 2:18 PM (GMT -6)   
While I haven't been told I need to live with a bag the rest of my life yet, I have experienced a lot of the same pain/anger/etc. It is NORMAL to be upset.

I haven't had much luck with finding reading material, but a book by Jill Sklar - "The Five Gifts of Illness" has been a good read. She herself has Crohn's and interviews other people with chronic conditions they must live with.

Living in pain is what most of us do on a daily basis. Our friends and family are there to support us, but they do know truly know what it is like to be in the bathroom half the day!

What has helped me cope the best is letting my friends and family know how it has taken an emotional toll on me. I do talk about my medical problems - in a dry sense of humor because that's how I am. I say a lot of it in a calm manner and they think that I am doing OK. However, I have to let them know how I feel because I don't outwardly show it to them.

The best support is finding people in the same situation. I don't know where you live, but most major cities have some sort of support group. If that isn't your style (which is definitely not mine!) than look around for various message boards until you find one or more than you like.

Most people on the street have never heard of any of the diagnoses, procedures, treatments, etc. On message boards you'll find a lot of people that know their stuff, but take it with a grain of salt. Not everyone knows their stuff :)

Hang in there. If getting a colostomy will rid you of your physical pain, people will be around to support you for the emotional pain.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/27/2010 4:05 PM (GMT -6)   
Terrell~welcome to the ostomies forum!

I have Crohn's and have had an ileostomy for a good part of 10 years. In 2008 I decided to have a proctocolectomy with end ileostomy and have never been happier!!! We do have to remember that Crohn's isn't a disease that can be cured but many of us are proof that we can lead active and happy lives with our ostomies. Many of us are also med free:)

This is not an easy surgery but worth it...make sure you have someone to watch your kids while you first recover...you will need your rest for the first few weeks but every day will get easier :-)

We'd be glad to answer any specific questions you might have!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Terrell
New Member


Date Joined Apr 2010
Total Posts : 13
   Posted 4/28/2010 3:23 AM (GMT -6)   
Thanks for the responses! I really appreciate it! It is a very hard time for me and my family right now but I must say they have been my biggest support system. I am blessed and I know I can get through it one way or another but I'm not giving up (which i have thought of before) my children need me and they are learning day by day. Even though I haven't been part of the ostomy and crohns forum long, I have really been enjoying it, there is nothing like talking to people who are going thru the same thing that you are. I love it! Thanks again!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/28/2010 7:49 AM (GMT -6)   
I had UC, but i also had surgery 3 years ago, and i wish i had done it sooner.
It has helped me be a better mom and wife and have my life back!
The surgery and recovery wont be easy,but it will be worth it
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Terrell
New Member


Date Joined Apr 2010
Total Posts : 13
   Posted 4/28/2010 12:01 PM (GMT -6)   
:-)  Thanks for the encouragement. The doctors did tell me that I will have my life back, and that's what I really want! I don't know how it feels NOT to live in pain anymore. This surgery could be a blessing, I'm pretty sure the recovery process is not easy, but my husband and my mom helps me alot.

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/28/2010 1:25 PM (GMT -6)   
Hello and welcome to one of the biggest support systems you will ever need.  People on here are great and most of them know what they are talking about.  I myself had a total colectomy and was re-connected and doing well, had mine on Feb 19,10, so 2 months ago.
Although I did not suffer with crohns my colon no longer worked and it does make you severly ill.  I know that you are young to have to go through this but you will be fine and more healthy when it is over.  You will have a appliance for the rest of your life, but that's the catch....you will have quality of life with your kids and family.
 
Its the quality of your life and actually feeling well and doing things and get back to living is what it is all about.  I can no way compare your situation to mine, but I know many of the struggles.  What I do know is that I like many others have suffered tremendously with our innerds...LOL  not working properly or diseased and that is not fun.
 
So you do what is good for you and if your colon is making you sick.............out it must come.....then you re-gain control of your life.  So happy that you found us and we will be praying for you to have a good out-come..
 
Leslie yeah
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


Terrell
New Member


Date Joined Apr 2010
Total Posts : 13
   Posted 4/28/2010 8:59 PM (GMT -6)   
Thanks alot honestwoman50! How long did it take you to recover?

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/29/2010 12:15 PM (GMT -6)   
Terrell  I am only 2 months post op so they told me it would take a good 3 months to have some good energy, so I do wear out quickly...and a full year to get all my energy back.  But I do almost anything but take it slow, dont lift things over 5 lbs..but feeling great and I love to eat, but that is in small amounts...so I am a grazer.  If you have more quietions ask away...
 
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  

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