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ColonBlow2010
New Member


Date Joined May 2010
Total Posts : 8
   Posted 5/20/2010 4:01 AM (GMT -6)   
Hello,

I am going to have a total colectomy next week on Wednesday 26th and am getting nervous and anxious. I have battled constipation for 13 years and was very comfortable with this decision of surgery but as the time looms nearer the butterflies are setting in. My Dr. is very good and I feel confident with him, as he has been informative and kind. However some things are going through my mind that he can not answer in a solid form as each patient is different, so I am hoping some one on this site can help ease my mind. I am not even sure what to ask or post since my mind is reeling and in truth most of my concerns are what ifs and petty vain issues. So please bear with me as I spit them out.

The plan is to attach the remaining 10% of my colon to the rectum. Have any of you had this done successfully or was a temporary stoma needed due to unforeseen reasons and what may those reasons have been?

If a temporary stoma was used, how long till reattachment?

How does this effect clothing?

I have read online issues with anal leakage, is this common once home from the hospital? Were feminine products or depends needed?

Thank you for helping. I am sure after someone answers more questions will come to me but I appreciate any help with the above ones for now.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/20/2010 6:18 AM (GMT -6)   
Hi ColonBlow and welcome,

I have a permanent ileostomy after having a Crohn's flareup (which, for me, was chronic diarrhea) for 7 years. It was awful and I was sick and tired of being sick and tired, so having an ostomy has been a wonderful blessing that has given me my health and life back.

I don't have a rectum anymore, so I can't speak on that issue, but I can address your concern about clothing. Personally, I can wear whatever I want, and the pouch is not noticeable at all. Nobody can tell that I have one, and people are always surprised when I tell them my story and share that I have an ostomy.

The TOTAL COLECTOMY thread on here is a place where a lot of people who have been through exactly what you're going through share their stories and helpful information, so you might want to check it out.

Good luck with your surgery next week. They will give you excellent pain medicine by IV, so you will be kept comfortable.

Take care, Cecilia

P.S. - Your name cracks me up! smilewinkgrin
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 5/20/2010 10:44 AM (GMT -6)   

Hi ColonBlow,

 

Welcome to the site! There is so much information here from phenomenal people who have experienced the same things you are.

 

I am 24, and had a total colectomy with ileorectal anastomosis back in 2007.  My diagnosis was colonic inertia, and they're currently testing for rectal inertia.

 

You're right, each patient is different- everyone recovers differently, everyone has unique foods that they can and can't eat, etc. Don't hesitate to vent or throw out tons of questions on the forums- we have all been there, and we've all done some serious venting at one point or another.

 

I did not have a temporary stoma. My surgeon said that he usually only has to do a temporary stoma when there is significant damage to the intestines, either from colitis, or radiation therapy. They did draw a bullseye on my abdomen prior to surgery in case they did need to do a stoma.

 

I did have a little anal leakage following surgery, but it stopped before I went home. That's just a result of the anesthesia. The GI tract really goes to sleep during surgery, and it does take awhile to wake up and regain full control of all the sphincters. When I say a little leakage, I do mean a little! Just a few drips here and there. As you're recovering, they will keep listening for gut sounds...do not let them send you home until you have good gut sounds and you're passing some stool.

 

Like Cecilia said, come check out the "Total Colectomy" thread. I think we're on part 35 now.

 

Have a great day!

 

Allie


Life-long GI problems.
- 2004: Motility problems took over my life (I was 18). Tons of doctors later... 
- July 2007: Diagnosed with colonic inertia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic    debilitating pain due to a small intestine dysmotility.
- May 2010: Doctors suspect rectal dysmotility; another manometry scheduled for the 18th; sigmoidoscopy scheduled for the 26th (checking for strictures around the anastomosis).
 
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/20/2010 12:38 PM (GMT -6)   
Well just try to remember why you are doing it and that there wont be pain anymore!
i cant answer the other things, but clothing wont be a problem, just be sure when you go for your marking that you wear the type of clothes you wear everyday!
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 5/20/2010 6:40 PM (GMT -6)   
Hello,  Well I had what your going to have.  Had mine done Feb 19,2010, so I am 3 months post op.  They re-connected me and that is what the doc said he would do before my surgery.  But when I went to first see him, I really did not know they could do it I just wanted to get better and if that ment a appliance I did not care.  I had been so sick for so long, and my mom and I actually went back in all my medical records and the journal I have been keeping and figured out I have been sick with this since 1993.
 
One thing you need to realize is that this is a huge surgery, so be as healthy as you can before you have it.  I can tell you from my own experience that they will keep you so medicated, so it helps a lot.  The first 3 weeks are the worst for pain issues, but keep on top of your meds and so you do not let your pain get out of control.
 
For me:  the minute I came out of recovery I knew I was better.  I was so happy and laughing because I knew that this was the first day of the rest of my life.  Because I no longer felt sick, and trust me I was astonished that I could tell immediately, and I was elated.
 
Did he say that he will just reconnet you to what is left of your recutm?  I hope the same is for you.  Eat small meals and often is the trick, stay away from fruits and vegies that are raw and any cooked ones that cause you gas...you dont want the gas.  Take extremely good care of you new plumbing and hopefully it will be good to you.
 
I still don't have much energy, but it gets better day by day.  The best part is I can eat without suffering, love it.  If you have any questions that you want to know ask away...
 
Leslie nono
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
 
  


NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 5/20/2010 7:24 PM (GMT -6)   
Yea I'm nervous too, lol. Have to drive back down to Atlanta tomorrow and have blood work done. Then next Friday at noon I go in for surgery for the first part of the jpouch.
I am glad that next week will be the last time I will ever have to drink bowel prep. I'm just so happy that I will get my life back; hopefully by July 4th I will have all my strength back cause I'm wanting to go to Gatlinburg :)
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009 and been in a flare ever since.
Colazal 4 2x daily and the occasional Immodium.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Some medicines helped but none of them put me back in remission.
Unable to take 6MP.
Step one of Jpouch surgery scheduled - 5/28/10


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 5/20/2010 7:42 PM (GMT -6)   
Newshiny cd, where do you live? I live in Atlanta and see Dr. Singh at Piedmont Hospital. I have surgery scheduled June 21st and will have a temporary ileostomy....is that what you will have? I am nervous, but am trying to remain hopeful that this surgery may give me my life back....

NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 5/20/2010 8:29 PM (GMT -6)   
I'm in Rome, GA and I'm seeing Dr. Liberman who is with the Atlanta Colon and Rectal surgery group. He is very nice and explained everything to me even though I knew most of it from reading on the forum, lol.
I'm going to have a temp ileostomy and then jpouch. He said that since I'm young that I should have no issues with the ileostomy or the jpouch and he said that if all goes well that I will only be in the hospital for about 5 days.
I thought about going to piedmont or emery but I remembered they are basically in downtown atlanta which I dislike because of traffic lol.
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009 and been in a flare ever since.
Colazal 4 2x daily and the occasional Immodium.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Some medicines helped but none of them put me back in remission.
Unable to take 6MP.
Step one of Jpouch surgery scheduled - 5/28/10


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/21/2010 6:15 AM (GMT -6)   
Welcome ColonBlow! I cannot help with the reconnection questions...but if you do have a temporary ostomy, you shouldn't have any problems with clothes...it really is personal preference...I've continued to wear the same as before. And, people have NO IDEA I have an ostomy until I tell them!!!

I'll be thinking of you on the 26th, good luck!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 5/21/2010 2:15 PM (GMT -6)   
NewShinyCD
What do you have that they are doing a J-Pouch with Illio?  Cant they just re-connect you to your rectum?
 
Your awful young ..
 
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
 
  


NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 5/21/2010 7:03 PM (GMT -6)   
I have Pancolitis. None of the medicines have put me back in remission and since the start of my flare up I've went from about 180 to 128.
Earlier today I had a period of "normality" for a couple of hours which is the first time something like this has happened in the past couple of weeks. Stomach didn't hurt, I was able to eat, walk around without running to the bathroom.
I'm hoping that's what it will be like all the time after my surgery; I just wanna be able to do normal things again :(
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009 and been in a flare ever since.
Colazal 4 2x daily and the occasional Immodium.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Some medicines helped but none of them put me back in remission.
Unable to take 6MP.
Step one of Jpouch surgery scheduled - 5/28/10


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 5/21/2010 10:29 PM (GMT -6)   
You will be amazed how much better you feel within days of your surgery. Yes, you will be uncomfortable with your "surgical pain" (I promise that drugs will help) but your feeling of being "sick" will be gone....you will quickly feel better than you can remember! You do have a long road ahead of you but you will get there.

My son is 3 months post his reversal and he is doing great. He was very sick before surgery and his life was completely out of his control. He now goes to the gym and does weight lifting, has gained almost 30 lbs, eats what ever he wants, FEELS GREAT, has more energy than he can remember, is off ALL medications and has perfect blood tests......he is completely healthy!

Wishing you all the best,
Cathy

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 5/21/2010 10:38 PM (GMT -6)   
     You are going to do just great....Just keep you eye on the prize....feeling good again.  Prayers for you....
 
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
 
  


ColonBlow2010
New Member


Date Joined May 2010
Total Posts : 8
   Posted 6/2/2010 12:42 PM (GMT -6)   
Thank you so much to everyone who responded to this thread. I was very nervous up till about 3-4 days before my surgery. I can honestly say this website and all your threads is what helped calm my nerves. What a blessing!

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 6/2/2010 1:19 PM (GMT -6)   
Colonblow, did you have your surgery? How did it go? So glad to see you back posting. Tracy

Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 6/2/2010 1:19 PM (GMT -6)   
awesome, man .... i just looked at this and it seems you have gone for surgery last week? How are you feeling and doing?

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 6/3/2010 10:26 PM (GMT -6)   
hope all has gone well

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 6/4/2010 12:30 PM (GMT -6)   
Collicat
Well you have made it throgh some of the worse part....CONGRATS...NOW YOU CAN GET YOUR LIFE BACK...  Prayers still coming your way, please be good and follow the doc's orders..LOL
 
 
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
 
  


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 6/4/2010 12:34 PM (GMT -6)   
I have read online issues with anal leakage, is this common once home from the hospital? Were feminine products or depends needed?  No, not if your re-connected..
 
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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