If you have a stricture (which causes stenosis/narrowing) then I don't think you'll feel right until it's dilated. There have been discussions here about whether or not to get sedation for the procedure, how often it might need to be done, and whether it should be done at home to maintain the opening. I haven't seen anyone choose "live with it" and be happy with that choice. Properly performed dilation of a stricture shouldn't cause any incontinence.

I've had multiple dilations under anesthesia r/t the same. It helps, for sure. 

For maintenance, I now self dilate every other day with an 18mm Heger dilator. 

Don't be afraid of a dilation. It'll totally help you. 

Yes, dilations can definitely help turn things around.  I had one about a month ago and doing so much better - down to 6 BMs/day and no night-time accidents, which is great for me.

I've also found that when things are narrowed, there is more butt burn as well - apparently a little "stuff" leaks through, enough to cause the burn.  In my case, the burn disappears a few days/week or so after the dilation.  In the meanwhile, lather on the skin protective paste/lotions.

I too now self dilate with a finger - I've been doing it every day, but skip days now and then.  Unpleasant, but as long as it works I'll manage it.

Have not had probs. w/incontinence, although for a few days afterwards, things are a little sore.  If/when you go through with it, I do suggest some form of sedation.   I've had one done w/o sedation and holy moly it was not pleasant.  As in - never again.  And all my scopes had been done w/o sedation prior to that.

Let us know how it goes for you.

hi everyone thank you SO SO much for taking the time to reply. I feel so much better about having it done now. Am having it under sedation (phew). Will let you know how it goes. All the best, Dee

Glad you got some answers -  I had to have these done - both under anesthesia and with no anesthesia.  They worked.  Glad you are getting sedation. The ones without sedation were rough, but manageable.  When it got really bad, they sedated me.  Let us know how you do - hopefully you will have a good outcome as the rest of us have dealing with strictures. I think it is pretty common and results are generally really good.

thanks Angie, one more question everyone... are you sore after? i am a yoga and pilates teacher and wondering if i would be ok to teach the next day or day after? thanks x

Well, I was usually ok after the ones done without anesthesia.  I could work the next day.  I think I also worked the next day after one with some sedation.  I was younger - now, I'd plan on taking a day off...but you may find you are ready to go.  I do not remember much pain after those -I really don't -yes, some when I pooped, but not constant...hope it goes well and provides you with relief!  I remember that it was so great after because it was not all stopped up and making me feel so bloated and all that jazz...let us know that you are ok if you have time  Good for you to teach yoga/pilates - love those! Need to do more of that - I've gotten incredibly lazy.  52 and just plain lazy - I hear this happens a lot and that I will get some pep back.  post menopausal zest  they  call it- I sure hope so!  Good luck!!

Hey Angie thanks again, i am not far behind you ... 49 in 2 days menopause definitely takes a lot out of you so just rest and dont beat urself up for it. you are not lazy just tired most likely I will let you know how i go xx

it sounds like your stenosis/stricture is very low, maybe in the rectal cuff area? from what ive heard this is not that rare and indeed dilations including self dilation is potentially a solution. I know two people who have been directed by CC staff (in Cleveland) and the other from Mayo Jacksonville to self dilate with a provided instrument. I have to admit that that would literally scare the sh_t out of me but I digress. I guess what I am trying to say as other have that its not that unusual. I myself get dilated for my mid pouch and above pouch stricture about 4 times a year, we are trying to return that to only 3 then maybe 2x a year. but the good news is those dilations along with med changes finally altered my path of 4 ER visits annually for horrid obstructions. I would be a little concerned that eventually you might face an obstruction if you didn't dilate the stricture. and for the record I'm not really clear the distinction between stenosis and stricture to my simple view they are related, if not the same.

Self dilation isn't so bad. A Heger dilator comes in multiple sizes. I'm actually wanting one larger than 18mm; I've found my own self dilations work better for me. Ones under anesthesia sometimes seem too aggressive, and I get swelling/inflammation after that's a whole other issue. Doing it myself assures it's open, gently. I pull gently side to side then back to the tailbone... Never to the front (per my original surgeon). 

After dilations under anesthesia, even at my worst narrowing, I was fine the next day and never had pain, really. A little irritation, but that's really it. 

hey guys thanks for taking time to reply it feels good to have so much positive experiences.  I am feeling a lot more confident about the procedure. I will let u know how I go �� dee x

I just had this done for the inlet/outlet under sedation last week. To me it didn't seem any different than a pouchoscopy under sedation. I don't think I felt any noticeable discomfort from it afterward. But I've been having problems with eating/bloating for the last couple of years so daily nausea/cramps/pain are the norm and my surgeon thinks this could be part of it.

Currently I haven't been able to work for over a month and after a few days in the Hospital I'm trying to eat more than pudding and soup. When I don't vomit what I eat what does go through takes around 10 painful hours to pass if I'm lucky but that's only if I don't eat anything else for a day or two. I didn't realize this could be caused from strictures but I've also been diagnosed with severe GERD and possible gastroparesis so that's where my attention goes to. Has anybody had experience with strictures causing symptoms like this?

My surgeon says to give it 4 weeks and if I still can't eat normal to dilate again. and every 6 months after that. I don't know,  nothing has changed in a week so I'm not so certain all this is from narrowing. After 13 years with a pouch It drives me nuts trying to figure this stuff out.

Jefferson that sounds to me more like gastroparesis. which unfortunately is a bear as there aren't really good med options. Reglan the one med they tend to use has some potential nasty side effects and from my point of view, having watched several friends struggle with it, when it was offered to me once for nausea when I was in the hospital for a gout/Achilles tendon issue I passed and asked for something else.

GERD can also be a bear but are you taking meds for that?

I would get tested for Gastroparesis. My strictures don't really slow me down. Their positioning - the bad one in the middle of my jpouch think a sand timer hour glass shape, in essence divides the capacity of my jpouch in two, creating the need to evacuate more frequently. when you are vomiting are you passing gas or stool?

So am in the hosp now and a dr mentioned maybe scar tissue needs to be cut out??? Has anyone heard of that ?? They are going to have a look tomorrow first to see how bad it is. Appreciate any advice dee ��

yes, sometimes adhesions form...there are lots of posts about that on this site.  the key is a really good surgeon who knows what she/he is doing.  the last time I had this done it was done right, but had other times when it did not work.  also, each body is different in terms of adhesions - many factors at play. don't give up and get the best surgeon you can afford.  if you can, go to CClinic.

"Scar tissue" can mean some different things. In this case, from what Deedeeh has written before, it's probably not adhesions. It sounds like a stricture that might require something more aggressive than dilation. It's important to find out exactly what they propose to do. Sometimes they remove a *short* section of intestine that is strictured and create a brand-new anastamosis. I'd be fussy about my surgeon if that's what they are proposing - it's a bigger deal than a dilation or six. 

Anal stricture and stenosis are the same thing. If the stricture is so fibrosed that they cannot safely dilate it or it just springs back after the stretching of dilation, they have to do a surgical repair. Sometimes a simple sphincterotomy is effective, where they just cut the stricture and hope it does not reconnect. If the fibrosis is really severe, it might require complete removal, which amounts to pouch advancement surgery. 

If it requires anything more than a sphincterotomy, I'd want a second opinion and a surgeon experienced in pouch salvage procedures. Your stricture sounds like one of the fibrosed ones.

Jan

I'd listen to Jan!  Also, my sister went through this period where she had a bunch of fibrous tissue in a big lump under her pouch - caused strictures and all kinds of issues - no one could rx the problem for 3 years - until C. Clinic.  Jan also knows a lot more than I do about all the different kinds of scar tissue, etc.  as does Scott. I have no idea what kind of adhesions I had throughout the years.  I hope you can get this fixed! We are pulling for you!