New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/13/2009 2:43 PM (GMT -6)   
I haven't made up my mind yet if I will have a j-pouch made. I'm still leery about the complications that could come and so far I'm not terribly unhappy with my ileostomy. And I'm glad that I have years (if I want) to make up my mind about that. (although I do feel like a sort of "robot" with parts that must be changed and tuned up from time to time-I'm rambling......)
My question is for those that have a permanent ileostomy and have been "sewn up." And I know this is a weird question, but what does that feel like. Or maybe what do you not feel. Like when I tense those muscles, like to hold in stool, do you still feel that? Or does that feeling go away?
It just seems weird to not have that ability, especially since I'm so used to trying to hold in stool with my u/c.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery to redo ileostomy and switch to other side 12/25/08; pred., (ileostomy temporary....not so sure?)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/13/2009 4:37 PM (GMT -6)   
it feels the same to tense those muscles, i had to try it just now, lol.
Honestly having my butt removed was the hardest part for me to wrap my head around, one because it seemed so very strange but also because i could not get it through my head how you remove a hole! I mean that just seems impossible!
But it is! it looks the same pretty much back there and you cant really feel anything different, not that i am putting my hand back there all the time, but after the stiches came out i would feel it to make srue htere weren't any weird things like sores, and it really feels the same.
You do sometimes get feelings like you have to go poo. that is very annoying, but it goes away after a few minutes, i find that if i get where i have to pee really really bad i will get that feeling sometimes.

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 1/13/2009 5:05 PM (GMT -6)   
Wow, I never realized they sewed your butt closed. Is there a specific reason other than you just don't need it anymore? I mean does it serve a purpose for you to have it sewn shut? I'm just curious.
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Take Down Surgery Scheduled - December 15, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/13/2009 5:49 PM (GMT -6)   
I don't know why it has to be done either, but everyone says it HAS to be done....?
Summer: thanks for your reply (I had fun laughing out loud). It's not the response I thought I'd get, but much better because it is so hard to fathom not having a hole. When you say it feels the same, do you mean you still feel a hole, there just isn't one? Like the scar tissue is formed like a fake hole?
I'm having a hard time wrapping my head around this concept too.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery to redo ileostomy and switch to other side 12/25/08; pred., (ileostomy temporary....not so sure?)


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 1/13/2009 6:24 PM (GMT -6)   
I can't speak for all who have had this done, but in my case, that's where my cancer was so when the rectum and anus was removed it would have been a HUGE gaping hole so it had to be sewn shut. And it took well over a year to heal. The weird thing is that when it was healed THEN I started getting URGENT feelings to either poop or pass gas. It is very frustrating at times, but does go away quickly. I read somewhere that when all the nerves finally heal that's when some people get those 'phantom pains' like people who lose a limb feel their missing part.
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/13/2009 6:28 PM (GMT -6)   

Boy, my answer will sound boring after Summer's!!

I had a Proctocolectomy because my Crohn's in my rectum was out of control (fistulas, strictures and pain).  I've had an ileo for many years and decided to have it all taken out...the reason for that was that the disease doesn't stop just because you have an ileo.  I never realized how bad things were until I didn't have them anymore!!  I'll add that meds weren't working well anymore.

They remove the rectum and either leave it to close or sew it closed.  The problem is that there usually is some kind on issue at some point!!  For me, mine closed just fine (sewn) after the removal, but about 6 months later I had an abscess and had to have it surgically cleaned out.  That one closed with the help of a Wound Vac...just what you think, a vacuum on your butt...and it has been fine since.  *knock on wood*

It wasn't really a big deal for me...I was worried about the phantom feeling of having to go poo, but I don't have any of that.  I, too, did the same thing as Summer and tried to see if I could still move the muscles...great minds...and they will still do all the things they did before, just no hole:)  I have a scare, but no fake hole!

 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/13/2009 7:28 PM (GMT -6)   
i'm glad you guys think i am so funny and interesting, noone in real life does!

If you dont have it sewn shut then stuff like mucous will come out.
I would worry if they left it open then germs would get in there or something, and then have nowhere to go. I dont know just weird ramblings, lol.

You cant' feel the hole or anything, it just feels like well i dont know how to explain it. You can kind of feel a scar i guess, its not like i felt around down there before hand as a general rule before either! so i am not sure i guess it feels the same.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/13/2009 7:40 PM (GMT -6)   

I had Crohn's in the rectum, so that's why I had it removed. It was also in my large intestine, so out it went, too!

The surgeon did not sew my butt wound shut. She left it open, so it could heal from the inside out. To keep it from getting infected, I packed it with saline-filled gauze every day until it healed, which took about 9 months. It was not a big deal, but I sure was happy when it finally closed up.

My butt looks the same, except it doesn't have a hole anymore, which is fine with me, because having Crohn's in the rectum was a real pain in the butt! tongue I don't have any pain or phantom feelings either.


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


vintageman
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 1/13/2009 8:46 PM (GMT -6)   
Just had my rectum/anus removed in July 08.
I had mine out, as do many Crohn's folks, due to the increased risk of rectal cancer that is present after years of inflammation. It rises noticeably above the national average after each decade of disease. Problem is, you may not have any symptoms until the cancer has spread to the liver, or other possibly fatal locations. Scary crap. I waited 11 years after my colectomy, and my doc was after me to have the second surgery done as soon as three years afterward.
 
Muscle feels the same, yep, but it has been a weird thing to wrap the head around..... :-)
 
Mike
 
 
 

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/14/2009 5:45 AM (GMT -6)   
Very good point, Mike. Unfortunately, there is an increased risk for colon and rectal cancer for people with UC and Crohn's. That's what happened with Tony Snow. He had UC for many years, and finally had surgery, but after cancer was discovered.
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 1/14/2009 7:22 AM (GMT -6)   
I have a 'Barbie butt', it was sewn shut a year after my ileo surgery. I (and my parents) figure if you're never going to use it again, why put up with all that mucous and the increased risk of cancer?

Because it was so long ago, I can't actually remember what it felt like with a rectum and anus... I remember the cramping and such tho :(  I just tried to 'clench' those muscles but I'm not sure whether the muscles were removed with the surgery or I just can't remember how to do it lol


I have had an ileostomy for 33 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


provolunteer
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/14/2009 7:34 AM (GMT -6)   
i had my colostomy for 10 years now. the hardest thing for me was dealing with not having a rectum anymore. the permanent colostomy i could deal with. i've had crohn's for a very long time and everything ever associated with,caused by or a symptom of crohn's including kidney stones. i was glad to have a colostomy. i remember the day i came from the hospital, my sister in law was very curious and asked if it was ok with me, could she see the ostomy cause she was studying to be a pharmacist and had never seen one. however,she said she didn't want to see any private parts. i asked her, "what,like my butthole?" and i laughed. she said, 'well,..yeah."  and i told her, "what do you think a colostomy is? "  it took her a minute to figure out that rerouting the hole from the rectum to the surface does not change the fact you still have an exit hole,it just chages the location. we still laugh about it and i did show her. i do still have the "phantom" urge to push every now and then but it goes away quickly. whenever somebody asks me how i feel about having it permanently, i tell them, "i'm alive,i have 2 kids and i'll never be a pain in the butt again!" and we have a good laugh. you can look at too that you'll never have to sit on a public toilet again!

provolunteer-
27 surgeries, 19 fistulas,c-section, endometrios,hysterectomy,arthritis,dry eyes,migraines,kidneys stones,allergies,chronic broncitis,memory not so good, too close to death several times, too many bowel resections to count,
permanent colostomy(rectum removed was harder to deal with than using a baggie the rest of my life) but.......
...... I am no longer a pain in the butt!!!!!!!!


Scrappyjrt
Regular Member


Date Joined Jul 2006
Total Posts : 212
   Posted 1/14/2009 8:15 AM (GMT -6)   
My rectum was removed from the front,and I have a very small stump left. The hole is still there,but very small,and nothing comes out of it. Titanium staples will be there forever. I have a permanent colo soon to be ileo.

 

             


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/14/2009 8:31 AM (GMT -6)   
Thanks for the replies. It'll be easier to deal with having everything gone since the consensus is that it doesn't really feel any different. Glad about that. The phantom pains sound weird though. I have the urge now, but that's when there is mucus in the rectum to empty, and that's annoying enough.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; pred. and pain meds, (ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 1/14/2009 9:22 AM (GMT -6)   
I am 50 now and was diagnosed with Crohn's at 16 though they think I had it for a long time before that. I have always had problems around the rectal area, and yep. It did result in cancer. Scariest time of my life! Several times doctors told me it would be best to have an ostomy and all the other parts removed, but I wasn't willing to part with them until it was almost too late! One year, 9 months cancer free! Worked my butt off for it!
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, October 21, 2017 12:59 AM (GMT -6)
There are a total of 2,885,081 posts in 316,552 threads.
View Active Threads


Who's Online
This forum has 157657 registered members. Please welcome our newest member, uqmcgjdi.
279 Guest(s), 6 Registered Member(s) are currently online.  Details
Chask, StBernardMom, 07kr5, Dimitri71, vinwill, uqmcgjdi


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer