Stenosis

Hi Sunshyne,

I am assuming that the stenosis is in the canal of the valve or is it at the opening of the stoma?

I have had my valve "sink'" which caused the opening to want to close up because nothing was keeping it open...and a crooked valve...neither could be fixed with a catheter...but, you may get help from keeping the tube in or a plug...you need to keep them in at least 30 days for it to scar in. Yes, it can work, yes, it can help, you just need to be patient and give it a chance to do its job...meaning allow it to build sufficient scaring to hold things open and strait.

Do what the doctors tell you to, do not eat chunky food, stick to blended veggies, soups, proteins and nothing that requires you to pull the tube out to clear it.

And then, give it an extra week over and beyond the month. For security sake...

I hope that it works.

Sharon

Hi Sharon,

Thank you for responding. Yes, the stenosis was at the canal of the valve. The surgeon dilated it on Monday. I have the foley in so I am hoping this will resolve the problem. I did have to take it out due to some food had got stuck. I was able to get the foley back in with a little difficulty. I will keep you posted. Thank you so much Sharon. You have always been so helpful.

Sunshyne,

There are some little things that help, once you remove the cath (what size is it?) then you should start using a size up...just barely larger...if you normally use a 30 then bump it up to 32...keep it in at night when you are sleeping or when you come home from work for a few hours...if it is in the 1st 4cms of your valve then you may be able to get away with just using a baby pacifier (it lays flat against your skin, is just the right size and won't go so deep that it pops the valve open).

For whatever reason your valve wants to narrow, you need to keep an eye on it (???) and be vigilant...so whenever you are having difficulties, do not wait for the doctor to get involved, use the tube or pacifier and help it to not narrow.

And avoid chunky food for the next month...please!

Sharon

Hi Sharon,

I have been keeping the foley in at night or when I know I am not going out. I use a 30 so I will go up a size. I just spoke with the nurse at the Palms. They feel it may be a kink. I will be making arrangements to return to Florida to have it scoped there and see what the next steps will be. I have been dealing with this for several months. Thank you again Sharon.

Where do you live? Why do you have to go all the way to Palms to have a scope? 

Unless you live in Fla why not have a scope done where you are and send the results to Palms to interpret it?

 That is what I did from here in Paris...I couldn't fly out every time so I 'taught' my radiologist what I needed according to Dr C's instructions and we sort of got creative...in the end, we dripped the Opac into the stoma a few drops at a time to visualize the stoma and valve (I have an elbow divot)...then slowly filled the pouch...once the pouch was filled he took pictures of me on my side, back, the other side, standing and sitting in order to get a clear picture of how my pouch/stoma reacted in each pose...Then he took pictures of it as he emptied it (fine, I was mortified the 1st time...now it is just habit)...

We then sent the whole thing via email out to Dr C in Toronto...he was able to read it in real time and give me a diagnosis immediately.

Saved everyone a lot of time and money.

Once I got the diagnosis from him we were able to program my surgeries in detail before getting started and we avoided some major openings.

Sharon

sharon--so interesting that you write this as i am currently trying to figure out what my problem is.  might be the hernia increased, as the stoma is 99% of the time puffed out, even after extensive irrigation.  and/or the valve has slipped as the insertion can be difficult. need to super lube up the catheter and then wiggle it in, make a slight turn where i think there is a crook in the passage.  this crook isn't always in the same place.  now this discussion raises stenosis--oh good, another thing for me to worry about!!  (you might wonder why i traveled through myanmar with this hanging over my head.  totally legit question that i posed to myself and got no good answer.)   interesting that while i was there, and knew help to be very far away, i had no worries.  

all this to say that my local gi doc wants me to go down to nyc for the scope, although he didn't say he wouldn't scope me.  i am scheduled, in nyc, for a scope on one day and procedure on the next, but it isn't until the end of april.  moreover, i am uncomfortable not knowing what the procedure will be until the prior day, and subsequently can't plan for my short and long-term recovery.  

am a bit off topic of the stenosis, but am wondering what your symptoms are and if any of you have insights into what my problem is.  need a little camera near the pouch installed or a plexiglass window so can see in.  janet

Janet, when I had the problem(s) with the hernia(s) the first symptom was incontinence (the peristomal hernia relaxed the muscle that held the valve tights so that nothing was keeping the valve in place) eventually the whole valve popped out in my hands (and hung there looking suspiciously like a part of the male anatomy sticking out of my abdomen)...It was a fire hose...I sprayed my girlfriend's brand new bathroom...To her credit she didn't bat an eye but grabbed the camera to send a picture to Dr C...then grabbed the towels.

The next time (there were 3xs for that one) the valve kept moving around...I could never find the right trajectory...the 3rd time I had to intubate 'up'...the whole pouch twisted up into the hernia (it was huge) and got stuck there...that was when Dr C jumped on a plane as soon as he saw the scope and scan.

Now I have an elbow...It is small enough to be navigatable but some days I hit it regularly...especially when my pouch is overfull or my bladder is.

There is also the possibility that your pouch sunk down on your abdomen...which pulls the whole thing out of shape and can wreak havoc with the stoma position and valve...

So many complications, so many possibilities...

Can you write a list of everything that you are feeling/seeing and tell me?

Sharon