My stoma is closing!?!?

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pamysue
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 7/5/2008 6:00 PM (GMT -7)   
Short history:
 
Rectal cancer surgery 5/7/08 with temp ileostomy
Ileostomy is an "innie" 1 1/2 inches wide
 
June 2 passes a large painful stool anally.  Continued to have output in my ostomy and anally.
 
3 weeks ago, my stoma starts shrinking rapidly.  Down to 1/2 inch.  I start having bms every day.  Sometimes several in a day.  Output into bag declines to less than a cup a day.
 
After last week's chemo, I felt constipated.  Output in stoma goes up a little, but not much.
 
I've been taking 3-4 Imodium daily since surgery.  I cut this back with the constipation and then got the diareah.  That seems to be better today.  I change my bag a while ago and now my stoma is right at 1/4 wide.  It aches when output comes out of it.
 
I have a doctor's appt on Tuesday.  Just curious if anyone has had this happen or heard of it?
 
My oncol thought I was crazy.  When I told him I was having bms, he kept saying "From your bottom?"  He'd never heard of it.  My ostomy nurse said she's never heard of such a thing.
 
Am I even more of a freak than I already thought?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/5/2008 6:36 PM (GMT -7)   
i haven't ever heard of that either, cause you shouldnt' have anything attached to your bottom.

pamysue
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 7/5/2008 6:43 PM (GMT -7)   
That's what I thought! My first question for my surgeon is "What exactly did you do?" Because he couldn't have did what I was told, or I wouldn't be passing the green beans I had last night from my bottom!

Like cancer isn't traumatizing enough. It seems like everything that can go wrong has and my doctors are always in such a rush to get out the door. Honestly, the best medical advice I've received has been on cancer & ostomy boards.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/5/2008 7:36 PM (GMT -7)   
I can't give you any advice but just want to wish you the best and let us know what the dr. says.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/5/2008 9:29 PM (GMT -7)   
i really hope you get some help with this. I will tell you, that one of my worst fears has been that somehow, all my stuff will come undone, and my bottom will come unsewn and i will have the same problem you are having.
Please let us know what you find out on Tuesday, and i will def be thinking of you

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 7/5/2008 10:08 PM (GMT -7)   
Hi Pamysue

I posted to you on another board but I'll repost it here for you too.

If you have a loop ileostomy (which is a form of temporary ileostomy), it is entirely possible to still have BM's. this is because with a loop ileostomy, you have two openings - the main stoma, connected to your upper digestive tract, that expels stool into your bag and the second smaller stoma, called a mucous fistula, which is connected to your lower digestive tract, ie ultimately your anus and rectum. Sometimes stool in the bag can enter the mucous fistula and work its way out through it as a normal BM. It's nothing to worry about, just scary if you're not told it can happen.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/5/2008 11:13 PM (GMT -7)   
wow that is amazing. I had no idea that was possible.
I am sorry that i gave you the wrong info up there.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/6/2008 12:54 AM (GMT -7)   

Shaz you are the best - I do remember this now that i have seen it written again.  I hope this information will help too.

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


pamysue
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 7/6/2008 11:11 AM (GMT -7)   
Shaz, thanks for your reply here and on UOAA.  I have felt so lost with this thing!  Since the day I left the hospital, not a single doctor has asked to see it, asked about it, asked about output, nothing.  And I just don't think I'm qualified to be in charge of a hole in my stomach.
 
I'll still post what he has to say after our visit on Tuesday.  My gripe is that the majority of my waste is being passed as bms, but I still have to mess with the ostomy, the cost of supplies, etc. until I can have reversal surgery in December.  That doesn't seem right.  I wish he could plug it up at this point.
 
You all are the best.  If it wasn't for the people on the internet going thru/gone thru the same things, I would have gone completely nuts by now.
 
Hugs to you all,
Pam

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5697
   Posted 7/6/2008 11:49 AM (GMT -7)   

Surgeons never seem to inform temp ostomy patients of this phenomena.  This is very common, affects all jpouchers who opt for a 2-step surgery.  But the maintenance of your stoma will not be your surgeon's job, in fact he or she probably knows much about living with one.  You should seek help from an ET nurse if you have problems related to your stoma or appliance function.  Your doctor should get you these services as home visits.  I encourage you to call either your surgeon, GI's office, or insurance company and ask for a referral.  Do not stop pestering folks until that nurse has shown up on your doorstep.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/6/2008 4:31 PM (GMT -7)   
you should have gotten home visits when you came home from the hosptial. I had a nurse who was supposed to come for the first three weeks, however my husband is a nurse so that seemed rather silly, plus that woman told me to take a pin and make a really small hole in my bag to let the air out. I didn't much think i needed her help!
I love what you said about being in charge of a hole in your stomach. that is quite the way to put it!

pamysue
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 7/6/2008 5:29 PM (GMT -7)   
I did have a home health care RN when I got home.  Until I started working again part-time.  But she had never seen an "innie" like mine and seemed to be learning with me.  I called the Ostomy Nurse I saw in the hospital and she's the one who scheduled the appt with my surgeon.  She says my file says my small intestine is cut off.  I have no idea at this point.  *sigh*  But I am leaving there with some answers on Tuesday one way or the other.  That or somebody is getting smacked.  :)
 
You all are the best!
 
*Edited to say, that I don't normally go around smacking people.  This whole disease has just been so full of emotional turmoil and an ASTOUNDING lack of information from my doctors.  I think I'm passed the shock and scared and confused and moving straight for pissed off.  But with a smile.*

Post Edited (pamysue) : 7/6/2008 6:39:43 PM (GMT-6)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/6/2008 7:31 PM (GMT -7)   
hey if i were you, i would have been smacking people around A LONG time ago, lol. You are being alot nicer about this than i would have been.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/7/2008 1:09 PM (GMT -7)   

pamysue--I have been there and done the freaking out...just ask my husband!!!  My surgeon would put 3-4 stiches on the lower half of my stoma to keep "overflow" from entering the intestines below the stoma.  It worked great but every once in a while I would have to go back and have new ones put in.  They can fall out and then the whole process starts over again...but you always get notification they've fallen out redface YUK!

Just know that it doesn't hurt to have them put in.  My CR Surgeon does it in the office and it only takes five minutes.

What do you mean by "innie"?  Does that mean that the stomach around the stoma dips inward and the stoma comes out from there?  If it is, that's how mine is.  I use a wafer with convexity which pulls the stoma out so that the output falls into the pouch and doesn't gather around the opening (which could be why you get some going out the other hole).  My doc also checks with me on the length of my stoma and I am supposed to let him know when/if it gets too short/long because he can make adjustments to it so it functions better. 

 

 


pamysue
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 7/9/2008 4:59 PM (GMT -7)   
OK, I got my answers.

Ohio, by innie, I mean my whole hole dips in, nothing sticks out.

Shaz was completely right. He did a loop ileostomy, he just forgot to tell me that. However, my opening is now down to 3 mm. He thinks it will most likely close off completely. Especially since I have BMs everyday. I will still have to have reversal surgery since even the healed part is still my small intestine sticking out of my skin. But he said once it heals over, it's more like dealing with a hernia of sorts. He also said he has never seen one close off completely before.

I will be THRILLED if it heals over. Will still have to keep it covered with gauze and he said to wear a girdle, spanks or the such until the surgery. I also have had my diet restrictions lifted since it's all coming out the other end other than a tiny bit of liquid on occasion. So I will get fresh salads this summer and that makes me so happy.

I went and saw the ostomy nurse at the hospital after my appt to catch her up. She gave me a box of the mini pouches and said with as little as I have coming out, I can use them all the time. That's already better.

So, we'll see what happens. I would be nice to not have to fork the money out for supplies on top of all the other costs. Thank you all again for your replies. I have told everyone that the best advice is from the people who live it.


OH, on a funny note. When I told my Dad about finding so much info from the people online, he says, "Now you know you gotta watch out for them perverts on the internet." **** I said, "Dad, I don't think the pervs are cruising the colorectal cancer and ostomy sites too much!" He makes me laugh so hard.

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 7/9/2008 5:18 PM (GMT -7)   
Pamysue,

I was going to tell you the same thing Shaz032 told you. I myself have a temporary loop ileostomy. I have actual bowel movements every once in a while. When it just kept happening I was freaking out because I couldn't believe I had "that" much left in my large intenstines. What Shaz called the mucous fistula, I was told is also called a "distal lumen". One of my surgeons told me that with a loop ileostomy, your intestine is not completely severed so you will have some waste passing through your large intestines. Because of my distal lumen, I also had stool passing through the side of my stoma. That freaked me out to. What helped me was going to a light convexity. It sounds like you need to use a deep convexity.

Good luck!

pamysue
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 7/10/2008 10:57 PM (GMT -7)   
"What helped me was going to a light convexity. It sounds like you need to use a deep convexity."

What does that mean exactly? I've not heard those terms.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/11/2008 7:01 AM (GMT -7)   

pamysue-it is how the wafer is formed.  If a wafer is totally flat, it has no convexity.  Light Convexity has it slightly "dished" and then there is Deep Convexity which is the most "dished" and can really pull the stoma up...

My stoma is not and "innie" like yours, but the skin around it dips in and could cause leaks amongst other issues.  I use the Deep Convexity with an Eakin Seal to pull the stoma up and kind of make it even with my skin...I don't have leaks and the output doesn't "pancake" around stoma.

Hope things heal properly for you...Good Luck!

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