Struggling with Stoma Closure - Seeking Advice

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 through 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....?..

Hi Gimo

My stoma has always been at skin level and small even with my first ileostomy. It is nice for swimming and can wear just about anything because it's flat.
If you need it to be bigger (wider), do it. Ask your surgeon if it's okay 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.

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.

Hi Gimo, when I first had surgery for an ileo, my surgeon told me to get finger condoms and put one on with some Vaseline, and to gently insert it into the stoma every time I change the appliance. I did this for a month, but I wasn't too crazy about doing that.

Stenosed/Recessed stoma can be super frustrating - I currently have a urostomy patient who has had 2 revisions and still has a pinhole opening. 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 is stainless steel and has 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 scleroderma 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 definite 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 visceral massage with physical therapy to help loosen scar tissue and adhesions in the abdomen that could help loosen your stomach.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

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 and love floating about.  
Linda

Thanks so much for your input. Since having the surgeon dilate it on Tuesday, everything is flowing well, no cramps, and stool is larger than before. I wished he had been a bit more informative on dilating. I put in my pinkie and the tight muscle stopped me, but he just pushed on through. Now I know how to do it, I cancelled the surgery. I can't catch 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 the wafer. Again, thanks.

Linda

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

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

Gimo, I sometimes say my output, LOL

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.

Funny