protruding area around stoma

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LFW
New Member


Date Joined Jun 2006
Total Posts : 16
   Posted 6/30/2006 5:22 PM (GMT -6)   
i am a female, 46 years old.
 
I had an ileostomy in 1990 and have not seen a doctor or nurse that specializes in that since then.  Over these 16 years, I have put on some weight, and I do have a belly, but the area around my stoma, it feels different than just regular belly fat.  And when I look in the mirror at a side angle, it sticks out further than the normal side of my body.  It makes it difficult to find decent looking clothes to wear and I have become very self conscious about it and try not to wear things tucked in.  I researched hernias and I do not think it is that.  Is it possible that it is scar tissue that has accumulated around that area or is it just belly fat that sticks out more because of the stoma?   I am trying to lose weight, but I wonder if it will still protrude like it does now, even if I lose weight?  Does anyone have any idea what I am talking about?  I hope someone does, because I don't know what to do about it.  It looks awful. Maybe no one else notices, but I know it is there and am very aware of it.
 
Also, does anyone have problems with the wafer around the pouch after a shower?  It seems like whenever I take a shower, it loosens or makes the wafer deteriorate..(did I spell that right?)  I order my supplies thru the mail, so I don't really know what all is out there.
 
Also, does the mouthwash really work????  I am going to have to try that, the smell is sometimes so disgusting, especially after getting up from sleeping several hours. I close the bathroom door and hope no one goes near it until the smell goes away, it is so embarassing.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5409
   Posted 6/30/2006 8:58 PM (GMT -6)   

I don't have an answer, I only had my ostomy for 8 weeks, but I really want to encourage you to see a GI and get an evaluation of your stoma.  Sixteen years is a long time to go without an evaluation!  After that you should meet with an ET nurse.  Ileostomy products have changed a lot since you had your surgery and I am sure you would find the newer products, tips, and overall support from an ET nurse to be invaluble.  As for the odor, there are drops that are made for ileostomy bags that all but eliminate the odor.  You can either find them from your local drugstore that sells ostomy supplies or purchase them online.

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
 


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1194
   Posted 7/1/2006 9:25 AM (GMT -6)   
Suebear said...
 Sixteen years is a long time to go without an evaluation!  After that you should meet with an ET nurse. 
lol, try going 28 years without seeing a stoma nurse :)  Seriously, if everything's going well, there's not really a great need to see one.
 
LFW, my first thought was a hernia, but you say you don't think it's that, so there goes my idea. sad
LFW said...
Also, does anyone have problems with the wafer around the pouch after a shower?  It seems like whenever I take a shower, it loosens or makes the wafer deteriorate..(did I spell that right?)  I order my supplies thru the mail, so I don't really know what all is out there.
Try visiting the various manufacturer's websites and asking for as many free samples as you can get to try out. You can usually order them online.  The websites for the main ones are:
 
 
If you google ostomy manufacturers you'll probably come up with some more as well.
 
LFW also said...
Also, does the mouthwash really work???? 
A lot of people say it really does work. Personally, I use 3% hydrogen peroxide (no stronger). Just a few drops in my bag and the odour is completely gone. The 3% solution is safe to use on cuts and scrapes and even as a mouth gargle so it's completely safe to use in your bag too. Try it, you'll be amazed!
I have had an ileostomy for 30 years now due to UC.
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


gbrux
Regular Member


Date Joined Oct 2005
Total Posts : 63
   Posted 7/4/2006 5:14 AM (GMT -6)   
Hi LFW - I have had two stomas for 4 months following an emergency op in Feb. I am waiting for my reconstruction on 14 July. Like you, where the stomas are, my abdomen protudes - it is like having two mini volcanoes - I don't wear anything tight and lots of long shirts. The belly around the stomas feels much harder and I have always thought it is just where the insides are trying to come outside! Sorry! Seriously though I would ask your doc - i didn't bother as i am hoping it's only temporary. All the best,
gillian
 


LFW
New Member


Date Joined Jun 2006
Total Posts : 16
   Posted 7/7/2006 1:51 PM (GMT -6)   

I went to an ET nurse this morning, the first time I have had any kind of follow up or check up with my surgery for 16 years!  I am glad I went, she showed me several new pouches that I hope I will like better than what I am using now.  Anyway, she said it looks to her like I have a hernia but that it wasn't bad enough for surgery.  She said losing some weight may help the looks of it some.  She told me I could go to my surgeon, but that he most likely would not do anything since it is not causing me any pain or any physical discomfort.  My only problem with it is cosmetic, I am so self conscious of it and try not to wear anything tucked in.  I am not going to bother going to the surgeon, I feel it would be a waste of his time and mine.   She told me to just keep an eye on it and if it started causing me physical problems, to contact her or the surgeon. 

Well, that 's about it. 

Thanks for responding.

LFW


lion00
Regular Member


Date Joined Aug 2006
Total Posts : 334
   Posted 8/31/2006 10:05 AM (GMT -6)   
Hi there,
sorry to hear about your problems. My mum had exactly the same as you, she didn't think it was a hernia either, but turned out it was. Like you she was told it didn't need surgery. But now, six months later, she is about to undergo her hernia repair as the hernia has got enormous. She found the hernia belts used during pregnancy helped lesses the look of the hernia, hers too was very protruded. Please go back if the stomach appears larger as leaving it will only cause more problems. Good luck to you with this.
Chillblain Pattern LE, tachycardia, unknown bowel problems


Pin Cushion
Regular Member


Date Joined Feb 2003
Total Posts : 442
   Posted 9/10/2006 7:07 AM (GMT -6)   
My stoma looks like it is sitting on a baseball mound.
Surgeon said same thing. Not worth the risk of surgery unless gets real bad or causes pain etc..
I too large shirts and since bag hangs right at belt level I wear maternity pants. I could buy them called
Bag E Pants but they are the same thing basicly so why spend the extra bucks.
Oh and for you guys out there are saying I wish I had something like that for men. I am a man.
With larger shirts that hang low you can not tell that they are not just regular jeans.
AL
Sigmoid Colostomy / Crohns / Type 1 Diabetic / Ostioarthritus / Fibromyalgia / Asthma / High Blood Pressure / High Colesterol / Migraines. Ain't life a joy?



* I think it may be time for a colorful metaphor*


wmnak
Veteran Member


Date Joined Jul 2006
Total Posts : 1123
   Posted 9/10/2006 9:18 AM (GMT -6)   

My belly protrudes on the left/stoma side - has ever since my colostomy 6 months ago.  Actually it was more swollen and has gone down a bit over time, but still noticeable to me.

I'd love to see an Xray or scan that shows EXactly how the surgeon brought my colon to the surface.  Can't help but think that perhaps bringing an excess UP to the stoma causes the bulge.  I know the surgeon's objective was to preserve as much of the intestine as possible after removing the rectum and anus... but surely he didn't loop it around or something to give me more digestive time?!  Oh well ... it's there ...

When I occasionally get "dressed," underwear with a little spandex and support panty hose make the uneveness passable.  Otherwise, elastic waist shorts/slacks and tops worn out work just fine.  At 2 months post-op I purchased a maternity swim suit, which I've worn all summer.   :-)


Cleo
Veteran Member


Date Joined Apr 2004
Total Posts : 992
   Posted 9/10/2006 11:55 AM (GMT -6)   
Been almost 2 years and I still have the bulge. I also have what my GI refers to as woody skin around the stoma. IT's really hard and feels strange. My last CT scan showed a hernia. The surgeon says we'll leave it alone unless it starts causeing problems. At that time he wants to make a new stoma. Says he'll have to go behind the spleen to do this. I say "if it ain't broke ...don't fix it."

My stoma looks like it belongs to a smurf. It is really small. NOt much bigger than a dime. I sooo don't want to go thru surgery again. So for now I'm layin low! Stayin away from the GI and the surgeon. lol
Cindy 
 
Life isn't like a bowl of cherries, it's more like a jar of Jalapenos... What you do today, might burn your "butt" tomorrrow!

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