Questions about Ostomies

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annyb
Regular Member


Date Joined Feb 2009
Total Posts : 62
   Posted 2/26/2009 5:58 PM (GMT -7)   
So I have been poking around here on the board for a couple of weeks but I haven't had the nerve to bring up my issues.  I finally have the courage.  Please be gentle.
 
A little history...I was diagnosed with Crohn's Disease at the age of 10.  I have been treated with various medications (6mp, imuran, azulfadine, prednisone, etc.) and with surgical options (resections X2).  Currently, I am living with a cronic rectal stricture that is treated with balloon dillation about every 3 months.  My gastro has been at me for about 15 years to get a colostomy.  I finally caved in to his request and agreed to talk to a surgeon.  I really only agreed to do this to get him off my back about it.  I had no intention of actually doing it.
 
At my last colonoscopy, I was informed that my ileo anastomosis (my splice where they reconnected me) has developed moderate crohns disease and a persistant stricture.  Apparently it is at a curve and would be very dangerous to try to force it open.  He said "it needs to come out."
 
I had a follow up appointment with the surgeon later that week and she immediately said "it has to come out and we need to remove the rectum also."  I was devastated.   That kind of news is tough enough but even worse when you feel healthy.  I have talked with some other people here on the boards and friends with ostomies but I have some questions about logistics of it all.
 
I got copies of my test results and now I'm totally confused.  The doctors made it sound like I had no choice in the matter.  It was do or die time.  But the reports don't read that way.
 
I am getting a second opinion on my situation from medical professionals but I want to get some personal stories that people live with ostomies.  Please forgive my simpleton questions.
 
Where is an ostomy located?  Right, left, hip, abs, etc.
How big is it?
Does it hurt?
Does the bag go under your clothes or over your waist band?
 
Thanks for the patience with me.  I respect you all for your openness about your ostomies.  Even though I don't know you, I think you are all very brave people.

Crohn's Disease - 29 years
Diagnosed at age 10 in 1979
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
 
SCUBA diver, Master's degree student, college graduate, Pet therapist
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/26/2009 7:06 PM (GMT -7)   
Hi Annyb,
Welcome to the forum. :-) You are in good company here, because I don't know anyone who was happy to hear that they needed surgery and an ostomy. I know it was the most difficult decision I've ever made, but also the most rewarding, because I had a really bad case of Crohn's that was resistant to medication and limiting my quality of life. Since surgery, I've been disease-free, medicine-free, and completely healthy. It has been the closest thing to a cure for me, so I have no regrets about having the surgery.
 
To answer your questions, a colostomy is where they loop your large intestine through your belly, and an ileostomy is where they loop your small intestine through your belly. A colostomy is located to the left of the belly button and an ileostomy is to the right. Both are a few inches over and a few inches down. The stoma (opening) for the colostomy is a little bit larger than the stoma for the ileostomy. I have an ileostomy, and my stoma is about the size of a quarter or 1-3/8" in diameter. There are no nerve endings on the stoma, so there is no pain associated with it.
 
The pouch goes under your clothes and is completely hidden. If you read summerstorm's post called "WHEW", you'll see how her closest friends didn't know she had it until she recently decided to tell them. I once worked at a job for 6 months, and nobody there knew I had it. Everyone who I have told about it has been very supportive, especially since they saw how sick I was before having surgery.

annyb
Regular Member


Date Joined Feb 2009
Total Posts : 62
   Posted 2/26/2009 7:14 PM (GMT -7)   
Thanks C.D.

It's Kelly in FM. I tried to call you earlier but you were not home. I'll try to catch you later.

Question: Is the ostomy above or below your Belly button?
Crohn's Disease - 29 years
Diagnosed at age 10 in 1979
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
 
SCUBA diver, Master's degree student, college graduate, Pet therapist
 


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/26/2009 8:07 PM (GMT -7)   
HI annyb!
Good to meet you and welcome.
church lady did a good job of answering your ?'s.
I'm sorry you're having a tough time. I think most people do at first. But I bet once you have your new ostomy, you'll realize it's not so bad.
My Ileostomy is on the left side. Everyone is confused by that (well, not ostomy people, but the rest of the population) I had one on the right side, but I didn't like it there, so I had them move it to the left.........no I'm just kidding. It had to be move to left b/c infection.
It's located about an inch below my belly and about 3 inches to the left of it.
So you're a pet therapist? Interesting job! What kind of stuff do they talk (bark/meow/tweet) to you about? Or is that confidential.
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; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., 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."


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/26/2009 8:38 PM (GMT -7)   

I'm fairly new to the ileostomy world...as my surgery was three weeks ago tomorrow.  I had a severe case of UC and I am just so happy it's gone!  The recovery from the surgery has been annoying b/c I'm impatient with having to take it easy.  : )  However, for me, any kind of life without UC is the life for me.  I find the ostomy a small price to pay for cure of my disease. 

When we first decided I needed the surgery ASAP, I was given a sense of hope I hadn't realized I had lost.  Then once the surgery was scheduled I was giddy for a few days then devestated about every other day until the surgery.  : )  I was an emotional wreck!  However, the day I was released from the hospital I was absolutely hyper and bouncing all over the place!  I completely over did it and was in a lot of pain the following days and needed a stronger pain medication.  : ) 

Now that I've gotten the hang of the ileostomy...which I call my 'accessory'...it's not really a big deal.  I'm still sore and swollen so it's a little difficult for me to wear my normal clothes, but I know it won't be a problem once I'm completely healed.  : )

I completely understand your concerns and I am so happy you're asking questions!  Continue asking as you think of them...and no question is silly!!!  I asked every question you could think of from expectations from the surgery to how soon can I get my nose ring back!  So please ask away!!!

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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/26/2009 9:11 PM (GMT -7)   
LOL robynbirdis right, no question is too silly, i asked about cartwheels, how stupid was that?

anyway, mine is below and the the right of my belly button on my right side. Sometimes people have them higher up though.
I wear mine tucked into my undies, but there are people who wear them outside their pants, and leave their shirts over them, although that would drive me crazy!
there are dif size bags you can get. But at the widest mine is less than 4 inches across and i think 9 inches long, im not sure about that.
The surgery hurts, but the stoma itself doesnt, and having the bag doesnt.

and really and truly noone will ever know unless you tell them, or you flash them, lol. I promise. I dont know if you read that post or not, but i have slept in the same bed with people (not like THAT, lol) and changed clothes in front of them and they didnt know.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/27/2009 8:14 AM (GMT -7)   
Hey Kelly,
I thought this might be you! Sorry I missed your call. I wasn't home much yesterday ~ had lunch and dinner out and saw a movie.
I'm glad you posted a couple of questions on here. As you can see, everyone is really nice and helpful. I'll call you later on! :-)
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.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/27/2009 11:53 AM (GMT -7)   
You are doing the right thing with a second opinion...you can check out UOAA.org for some great info on ostomies...links to sites, etc..

You've already rec'd some great answers and keep them coming!! Welcome to the forum:)
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