Stoma getting bigger?

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CrohnsHobo

CrohnsHobo

Joined
Nov 4, 2009
Messages
871
I had a subtotal colostomy almost 8 weeks ago. I have Hollister two piece supplies with a cut to fit flange. I was cutting them between 1 1/2 inch and 1 3/4 inch today I was changing everything out and I had to cut it slightly bigger than 1 3/4 of an inch, as big as my flanges will go. Should I be worried about a 1/4 inch growth in 4 days?

I feel fine, no pain, everything is coming out OK. I have a colonoscopy on Tuesday, so my GI will see it then, but is this something I should go to the ER about?

Been such smooth sailing since the operation I am a little concerned now.
 
They are normally shrinking for quite awhile. But, Stan gets bigger sometimes as well, and I'm a year and half out. Sometimes it's because I'm flaring. Hope that isnt the case with you. Sometimes it's because it's particularly hot outside believe it or not. (not often here in this climate!)

If your flange is too tight as well, sometimes your stoma will swell up.
 
It sounds like prolapse a little. I think my flange is too tight, I am expecting new supplies this week. Emailed byram to stop my order until I can look through the catalog and get something else, or at least something about a 1/4 of an inch bigger.

Really just uncomfortable right now, tight. No blood, output is a little watery, but not out of normal or heavy, no pain, no tightness in belly.
 
sometimes mine will get bigger then shrink back again too,

It can't hurt to ask your wound care nurse. If you have her take a look at it then she will let you know if it is something DR should be aware of.

Edit:
wait, you are seeing your GI on Tuesday? as long as everything else is fine and it isn't bleeding or anything, then it can't hurt to call the wound nurse and ask..

Im sposed to have a colonoscopy in the fall, they are going to go in through the stoma then up through the rectum...

are they making you do a prep for yours? im curious to know how they do it this way, im sure they put you to sleep,
 
I am having the same thing done skippy. Through the stoma and rectum on Tuesday. I will let you know how it goes. I have to do the moviprep two part prep and liquid diet. They said I will also be out.

Can't bad as bad wax my last one two months ago when they rammed a scope through my stricture to see what was in the other side. Worst one I have had in 16 years.
 
ouch!

they tried to do a colonoscopy but stopped when they couldnt get by the stricture, they did a ct scan instead..

the stricture is still there but not as big as it was,
my surgeon told me if the colon has to come out, then the rectum may need to come out too, I told him to have at it, if i dont have a colon i wont need a rectum either, he just laughed.
 
Well my flange is definitely too tight. I had to take it all off tonight. Thankfully I had one of the giant moldable flanges left from the hospital that I was able to mold out, but going to have order all new stuff ASAP. Hoping the ostomy nurse can see me tomorrow or before my scope on Tuesday and help me order some new supplies.

I can't figure out what to get, the catalog is huge and everything looks the same to me. Ugh.

Hope I can still get my scope on Tuesday.
 
Can you cut out the flanges you have a wee bit more while you wait for more supplies? They should have given you a measuring guide and some scissors? Just to make do for now?
 
Yes, I cut them out to the very edge, still constricting. I was wearing ones I cut to 1 3/4 now it is closer to 2 1/2!

I need something I can cut from 2 to 2 1/2. I think having the big one from the hospital on overnight has helped. Feels better this morning but still enlarged. Output is really good too.

I guess I should see if I can get samples from the companies. The deflection is a little overwhelming.
 
What brand do you use? If ever you use Coloplast I would be able to tell you which flange to use as I had to go through many different size last year due to fistula. I'd be happy to help if I can!
 
Thats a big increase in size! I sure hope you get your scope and see the stoma nurse as well.

And get some samples from her!
 
Talked to the ostomy nurse today and from my description she thought it sounded like it was prolapsed. She is going to come see it and give me some binder belt thing and some other supplies after my scope tomorrow.

My supplies are Hollister. They are sending me new bigger supplies tomorrow.

I fear something else is wrong, gut feeling you could say. Had a sneeze today and it felt like the wind was kicked out of me and then the stoma bled for a bit. Fear I might be flaring, but I have no cramping or pain (other than the sneeze).

I guess I will know tomorrow. Bummed this happened 4 days before I go back to work.
 
CrohnsHobo said:
Talked to the ostomy nurse today and from my description she thought it sounded like it was prolapsed. She is going to come see it and give me some binder belt thing and some other supplies after my scope tomorrow.

My supplies are Hollister. They are sending me new bigger supplies tomorrow.

I fear something else is wrong, gut feeling you could say. Had a sneeze today and it felt like the wind was kicked out of me and then the stoma bled for a bit. Fear I might be flaring, but I have no cramping or pain (other than the sneeze).

I guess I will know tomorrow. Bummed this happened 4 days before I go back to work.
Click to expand...

You need to tell your stoma nurse about that as well. I know, it sounds stupid, but she needs to keep an eye on things with you. The belt should help though.
 
Well I went to the ER tonight. All of the sudden I was having very intense pain and my stoma was really prolapsed.

By the time I got there it was huge, purple, and long.

The treatment? They dumped sugar from the kitchen and pushed it all back in! I guess the sugar shrinks the stoma. Hurt like hell, and I am still ok for the scope tomorrow.

Been a crazy night.
 
Bloody hell! You poor thing! Sounds awful! Is your GI doing the scope or just a regular endoscopist (not sure if that's the correct term!)? Hope you get it sorted soon!
 
Yes, my GI is doing the scope and the surgeon was going to try and come by and take a look. They are all at the same hospital, UCSD.

The Dr. last night went to the cafeteria and got sugar packets and caked it all over the stoma. I couldn't really see, but my girlfriend watched and said it shrunk and then he just shoved it all back inside me.

I came home and drank half the colon prep till about 3 am. Hit up this morning and drank most of the rest till output was clear. My appt. is in about 2 hrs.

Seems the longer I stand or walk around the more it puffs out, as soon as I lay down it shrinks way down to tiny again.

Not sure what they do to prevent it from falling out, a belt of some sort?
They said this will probably expedite my reversal surgery, which is fine with me.
 
Yes, the belt will help to hold it in. And yes, this will probably expedite your reversal sugery!
 
Wow.. that is so cool! (I really think stomas are cool, btw) I would have liked to see that, though I hate to know that it caused you pain.
 
yeah the belt will help,
Kudos to the DR who ran down and got the sugar packets...

my GI DR and Surgeon are affiliated with the same hospital, I had a General Practitioner but he was the Hospital practitioner, Im refusing treatment from him if I have to go back to that place.

my Psych Dr, GI and Surgeon are on the same page and I do not want some GP poking and prodding and interfereing with things that are beyond his field.

Chron's Hobo,
now you know to carry sugar packets in your emergency kit... After looking it up now I am putting sugar packets in my emergency kit too....
I had an isolated incodent with a prolongation last week but it shrunk back in on its own thankfully, I was ready to call the stoma nurse.
 
Colonoscopy went well. Everything looked great and I am all clear for the reversal surgery ASAP.

Hoping I can get it done next week!

Now time to sleep, I am exhausted!
 
Chron's Hobo,
do you happen to remember what you ate that might have triggered the prolapse in the stoma?

Saturday I had Macademia nut cookies and then it hit me, NO NUTS OR SEEDS..
Ive been having issues with the stoma being prolapsed and have been treating it with the sugar and found it works!

I see my Surgeon on Monday for my monthly followup and will bring the Prolapse issue to his attention.. maybe one of the macademia nuts clogged something up?

I have been finding whole macademia nuts in my bag when I empty it and have been drinking more fluids and easing up on the solids ....

also, rice chex and rice crispies to help clear out any obstructions...
 
How long have you had your stoma, skippy?

I think the whole sugar thing is fascinating... I've been telling everybody about it.
 
Ive had my stoma 2 months and a few days

also, I have been stepping down per my GI on the pred 5mg/week and notice probs with joint pain and stiff legs..

after being on 60mg for 2 months i think i should be dropping a bit slower like 5 mg/ 2 weeks, i was taking 45 but tomorrow im going back up to 50 or maybe 47.5
 
I have been insanely careful with my diet, GI even told me to try more. Basically been on low residue since the hospital.

That being said a day before it started to swell I had some Chinese food, no veggies, just non-fried chicken with sauce and egg drop soup. I think the high msg didn't help matters.

Most likely I was trying to do too much, lifting groceries, trash, etc. . I guess having the ostomy in the Transverse colon makes you more susceptible, and something as simple as a cough or sneeze can do it. They told me it happens a lot in children because they cry, and the sobbing makes it prolapse.

Mine is a paristomal hernia and then it prolapsed out. If I wear the belt/girdle thing I am ok, it is just incredibly uncomfortable.

If I am not wearing it I try and stay laying down. Laying down makes it go down again, they said I could also ice it.

I am having my reversal surgery on July 10th.

Hope yours does not get as bad as mine does Skippy. Sorry to hear it is falling out on you too, hopefully it gets better.
 

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