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Revision of stoma of sorts

Wed Aug 25, 2021 5:44 pm

My stoma is under the skin.  The opening for the stoma has been closing since surgery 11 weeks ago.  I am supposed to dilate it a couple times a week.  Now it has healed to the size of a pinkie nail.  This stricture has caused a lot of cramping as the movement is less than half the diameter of licorice rope.  My doctor said he will open it up larger as an outpatient procedure.  I can't have a normal stoma as I did not have enough vascular supply to get thru my fat layer.  I had asked him how come he didn't use liposuction and give me a regular rosebud stoma.  He never thought of it.  I am losing confidence in my surgeon.  Wondering who else might have this issue....?..

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1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

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Wed Aug 25, 2021 6:29 pm

Hi Gimo

My stoma has always been at skin level and small even with my first ileostomy. Is nice for swimming and can wear just about anything cuz it's flat. 
If you need it to be bigger (wider), do it. Ask your surgeon if it's ok to be skin level. 
By all means, get a second opinion. I would. 
Take good care of yourself, Gimo. 
Sharon🌷

PS: I've had an ileostomy for over 50 years. 

Past Member
Wed Aug 25, 2021 6:37 pm

  

   Hi Gimo,

Sorry to hear about your uncomfortable situation. I sent you a PM in regard to a good surgeon. Hope it might help?

Take care and please let us know what happens.   ..mtnman. 

Thu Aug 26, 2021 8:27 am

Hi Gimo when i first had surgery for an ilieo. my surgeon told me to get finger condoms and put one on with some vaseline and to gently insert in the stoma everytime i change the appliance which i did for a month, i wasnt too crazy about doing that. 

DisneyRN
Nurse
Thu Aug 26, 2021 9:06 am

Stenosed/Recessed stoma can be super frustrating- I currently have an urostomy patient who has had 2 revisions and is still a pinhole opening and luckily since it is urine it keeps just puddling and draining.  We will start some dilation in another month or so. Our doctors will have patients get the Hager dilator set off amazon that are stainless steel and have many sizes and start small and work their way up as able. It is more of a challenge with stool output as thicker stool can have pressure behind it causing discomfort. I have had patients who have to dilate long term due to skin issues- one had scleraderma and one had MS causing their muscles to continue to contract and keep the stoma stenosed. 

At times we have to encourage the patient to keep the output thinner to keep it flowing better. A revision is a definate help/solution assuming your surgeon feels confident he can get a better seal. 

Most of the companies now carry deep convex/firm convex that can really help keep a better seal with a recessed stoma. Possibly losing a little weight prior to revision or if stomach muscles are too tight I have had patients see pain management and get viceral massage with physical therapy to help loosen scar tissue and adhesions in adbomen that could help loosen your stomach.


_________________
Certified Wound/ostomy/continence nurse BSN RN
Thu Aug 26, 2021 2:34 pm

 

  Deziner wrote:  

Hi Gimo

My stoma has always been at skin level and small even with my first ileostomy. Is nice for swimming and can wear just about anything cuz it's flat.  If you need it to be bigger (wider), do it. Ask your surgeon if it's ok to be skin level.  By all means, get a second opinion. I would.  Take good care of yourself, Gimo.  Sharon🌷

PS: I've had an ileostomy for over 50 years. 

 



Well I saw my surgeon and he really dilated it.  I wished he had shown me how he does it I would not have been so stressed out.  Anyway, today no cramps and things are back to my normal.  I can't wait to get stronger I miss the water n love floating about.  
Linda

Thu Aug 26, 2021 2:41 pm

 

  DisneyRN wrote:  

Stenosed/Recessed stoma can be super frustrating- I currently have an urostomy patient who has had 2 revisions and is still a pinhole opening and luckily since it is urine it keeps just puddling and draining.  We will start some dilation in another month or so. Our doctors will have patients get the Hager dilator set off amazon that are stainless steel and have many sizes and start small and work their way up as able. It is more of a challenge with stool output as thicker stool can have pressure behind it causing discomfort. I have had patients who have to dilate long term due to skin issues- one had scleraderma and one had MS causing their muscles to continue to contract and keep the stoma stenosed. 

At times we have to encourage the patient to keep the output thinner to keep it flowing better. A revision is a definate help/solution assuming your surgeon feels confident he can get a better seal. 

Most of the companies now carry deep convex/firm convex that can really help keep a better seal with a recessed stoma. Possibly losing a little weight prior to revision or if stomach muscles are too tight I have had patients see pain management and get viceral massage with physical therapy to help loosen scar tissue and adhesions in adbomen that could help loosen your stomach.

 



Thanks so much for your input.  Since having surgeon dilate it on Tuesday everything is flowing good, no cramps and stool larger than before.  I wished he had been a bit more info on dilating.  I put in pinkie and the tight muscle stopped me well he just pushed on through.  Now I know how to do it I cancelled the surgery.  I can't cut a break and don't want to take chances of something else going wrong.  But as they say it can only get better.  After 11 weeks I finally was given the convex click by coloplast.  It stays on better with less leaking under wafer.  Again thanks.

Linda

Thu Aug 26, 2021 2:45 pm

 

  ron in mich wrote:  

Hi Gimo when i first had surgery for an ilieo. my surgeon told me to get finger condoms and put one on with some vaseline and to gently insert in the stoma everytime i change the appliance which i did for a month, i wasnt too crazy about doing that. 

 



Hi Ron,  I wasn't told how to actually dilate it just told to put pinkie in ...  now I know I can go in further I will do better.  I know it is weird but I totally refuse to think of it as poop.  Have not figured out what it could be but it is not poop..... ok for those who have read this it should make you laugh when you hear the name I gave it.  Poop la doop.

go figure

Linda



Last edited by Gimo on Tue Sep 14, 2021 5:24 pm; edited 1 time in total
Thu Aug 26, 2021 3:06 pm

You can call it feces. "Substance" works. I've heard ostomy nurses who used "stool." Stool is the best. 
Sharon🌷

Wed Sep 01, 2021 10:33 pm

Gimo I sometimes say my output, LOL

Tue Sep 14, 2021 5:26 pm


Deziner wrote:

You can call it feces. "Substance" works. I've heard ostomy nurses who used "stool." Stool is the best. 
Sharon🌷

Hi Sharon.  I kept trying to get a name for my stoma and it ended up... Poop la doop.  Weird I know but that is me.

Wed Sep 15, 2021 10:37 pm

Funny‼️‼️

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