What does your stoma look like??

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katiesmommy1
Regular Member


Date Joined Aug 2009
Total Posts : 94
   Posted 6/30/2011 8:31 PM (GMT -6)   
I know this is a weird question but I think there might be something wrong with my daughters stoma. I've posted a few months ago about there being white spots on her stoma, they never really went away totally. They come and go though. Recently her stoma has gotten really big, fatter, protruding a little more and now there is skin on both sides of the stoma that stick out. One piece sticks out a lot. Two months ago I was cutting a 29mm hole in her wafers and now she's bigger than 32. It's not bright pink either like I've seen when I "google" images of a healthy ostomy. (I google way to much ; ) It's not smooth either, it's darker and it's rigid. (if that makes any sense) and her poo has a really bad smell all of a sudden, and is very watery again. I think she may have an infection in her body. Which would explain the severe irritation under the wafer and around her skin.

I had a nurse come in today and she described her ostomy as "big, protruding..and gross"..yes she said gross. I was shocked and wanted to cry. She's only 4 and to me nothing on her is "gross". She said that my surgeon may want to look at it b/c it may need to be fixed.
I'm not sure what to think anymore. I'm waiting for a WOC nurse to visit but that won't be till after the holiday.

So I was just curious if my daughters stoma sounds normal to any of you??

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 6/30/2011 9:28 PM (GMT -6)   
I don't know the answer to your question about the stoma, but that's awful that the nurse called it gross -- last I checked, "gross" was not a medical term. I think you should report it, that's not OK to do.

Seeing the surgeon sounds like a good idea.

I hope everything is OK.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/30/2011 9:32 PM (GMT -6)   
It could be prolapsing. Get an appt with your surgeon. I cannot even imagine being 4 and having a stoma and I cannot imagine being in your shoes and having a 4 year old with a stoma. The "gross" comment was TOTALLY INAPPROPRIATE. Your poor child. I am 55 and can barely get up some days due to having to have my body altered permanently in order to survive; but it was either that or death. I had to literally fight to get a stoma to save my life. (I had an irreparable colon and rectal and small bowel injury during an unrelated surgery which on review did not even need to be done...long story.) BUT I am lucky to be alive and that one doc saw fit to give me a second chance at life by giving me this stoma. I am making the most of the time I have been given. But none of this is easy. I really feel for you.

Good luck, Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 7/1/2011 3:31 AM (GMT -6)   
i remember you, with the question about white spots on the stoma. did the surgoen/nurse ever saw it? what did they say about it? the swelling, color, texture and skin tags - all def don't sound normal. how much does it normally stick out? i think you must see the surgeon. please keep us posted. sending my best wishes to your sweet daughter and you. hope everything is ok.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1194
   Posted 7/1/2011 6:19 AM (GMT -6)   
I wouldn't be so quick to report the nurse, in medical terms, 'gross' means Coarse or large; large enough to be visible to the naked eye; macroscopic which from your description is what the stoma looks like. Another medical definition of the word is "Gross in medical terminology means able to see with the unaided eye, as in without a microscope". She probably didn't mean 'revolting' or gross as in the way most people use the word.
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!

katiesmommy1
Regular Member


Date Joined Aug 2009
Total Posts : 94
   Posted 7/1/2011 6:34 AM (GMT -6)   
Thanks, her surgeon did see it two months ago, as well as her GI. Her surgeon said it was prolapsed but that it was nothing to worry about. I think it's prolapsed even more now. Her GI thought it was signs of Crohn's but all her tests came back normal. Her surgeon did say that if it continued to prolapsed they would have to go back in and stitch it to the side of her stomach.

I am going to make another appointment with her surgeon, I was just hoping to speak to a WOC nurse before then.

thank you again for all your replies. I am going back and forth about reporting the nurse. I feel bad, she wasn't American and spoke broken English. I was giving her the benefit of the doubt and assuming she didn't know what the word "gross" meant.
but to be honest she said some other inappropriate comments. She made having an ostomy seem like my daughters life was over "how could she live her entire life with an ostomy" she kept saying. I hate when people do that. When they make the face when I tell them that right now she isn't a candidate for the reversal and that she most likely will never be.
I think there are so many vain people out there.

that's why I love going on this board and speaking with all of you. You guys always make everything I'm going through so much easier. Thank you all!!

Post Edited (katiesmommy1) : 7/1/2011 5:44:28 AM (GMT-6)


katiesmommy1
Regular Member


Date Joined Aug 2009
Total Posts : 94
   Posted 7/1/2011 6:42 AM (GMT -6)   
Thanks Shaz, the nurse wasn't malicious and was very kind to my daughter that's why I was having trouble actually reporting her. I come in contact with people like her almost every day. People think that having an ostomy is debilitating, when in reality it saves lives and in most cases the patients are 1000x healthier as a result.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3073
   Posted 7/1/2011 8:32 AM (GMT -6)   
I see where this situation sounded simpler to me at first than it is.

I wonder if there's a softer way of "reporting," as in asking for the agency to do some education with the nurses where they can learn more about how some things they say sound to patients and families. Really so little of what makes our lives so hard w/medical folks and others is consciously malicious, but the issue is the effect her words had on you and your daughter, not her intent.

If her intent is compassion, as it is for so many people, then she might welcome education on how to be more compassionate in her interactions. But you can't be expected to provide that education on the spot, when your main concern is dealing w/a specific issue w/your daughter.

I'm sure there are some patients and families who would be happy to speak to the nurses, I would do something like that near where I live.... perhaps you would be interested too, but if not, there are are plenty of others who have had similar enough experiences....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 7/2/2011 7:08 PM (GMT -6)   
Sorry I think the nurse needs a little sensitivity talking to. If English is her second language then certainly something is being lost in the translation but she still needs to know how to better interact with people too. Hopefully her nursing skills are very good to make up for her personal interaction communication skills. I'm a sensitve person and I know that would have bothered me. I think I would speak with her nicely away from your daughter to make her aware she should not make those type of comments.

You are so on the mark that this is a life saving situation. Granted it is a lifestyle change but one that can be adapted to. To see the person out of pain and able to regain a quality of life and get back into the game of life is the important thing to focus on.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free
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