I have a 19 year-old J-pouch. over the last few months, the anastamosis (sp?) has developed strictures that have had me in the ER several times, sometimes as often as once a week. As a result of reading posts on the J-Pouch Forum, and discussions with my doctor, I have started to self-dilate with Hegar Uterine Dilators, a couple of weeks ago , going up from 12mm to finally 18 mms, the "optimum" level, I believe. I started doing it every evening and now are down to twice a week, moving, I hope, to once a week, with the intention of staying there. I keep the dilator in for about 90 seconds, moving it around to stretch the scar-tissue area. I seem to suffer for 24 hrs, or a bit more after each self-dilation with gas and some cramp pain. My question is, is it normal for that to happen? And, should I maybe just get the dilator in place and NOT try to do more stretching? Any advice will be very appreciated!
The diameter of the dilator is well controlled. The extra stretching you're doing is not. Did your doctor recommended this extra stretching? Do you get adequate results without it?
Thank you very much. No, I didn't get any advice from my doctor. It is working fine without extra stretching, I expect. I will STOP doing the extra stretching, immediately! Thanks again for this very welcome advice!
I use a different type of dilator (hard medical grade plastic). I just looked yours up ... they look a bit scary to me and I imagine they might be cold!
My pelvic floor physical therapist has told me not to move the dilator around, just insert for approximately 5 minutes each.
Thanks, Mary. It is a little scary looking, and a little cold, but the handle is long, because it is the 17mm size, and makes it easy to use. I also got a plastic one like yours, for travel, 'cause I don't know what TSA would think if they saw the stainless steel one in my carry-on, and I wouldn't like to have to explain it in front of other passengers. The 5 minute thing is new to me as I was told by my doc that 1 minute was fine. I think I'm gonna go for 2-1/2 minutes as a compromise!
Howbdid you get your GI to agree to this? Mine keeps pushing me to the surgeon to cut out the scar tissue at my stricture site. All I can think of is the formation of more scar tissue when this is done but my stricture is so tight I'm not sure I could self dilate without the neighbors hearing my screams.
Yes, my GI approved. I CAN'T have the surgery because I have no small amount of rectum they can remove do the "repair." I do it once a week with an 18mm Hegar Uterine Dialtor got on Amazon for $19.00. It is a little uncomfortable, but doesn't hurt. Try it. It may make all the difference for you.
Did your surgeon leave very little cuff when performing original surgery? This does scare me as if they remove some more of my cuff, I may be in the exact same position as you are if I stricture again. Do you have any active disease in your anal area that may be causing the inflammation and stricture that may be helped with canasa or steroid suppositories? They claim mine is from original surgery 6 years ago, but I honestly feel the active disease in my cuff keeps my outlet from ever really functioning correctly.
I am a bit afraid of this as my opening is VERY small. It is tough to even get a scope in when they examine me. I guess I could try the small diameter first? This morming I was finally able to insert a canasa suppository past the anastomosis (could not even budge one in prior to yesterday's mild dilation under anesthesia). I did as you suggested and held it there for a bit just to hopefully keep the open dilated. Dilations do not seem to last long for me and I get concerned when I bleed afer each one as I feel they are just creating more scar tissue.
It is a horrobly debilitating, viscious cycle. Are you finding the dilation is helping?
They could not leave a cuff because my entire colon and rectum were so bad. BUT GOOD NEWS: Doing self-dilation is not so bad. While a bit uncomfortable, it is more embarrassing than anything have to go into the bedroom and tell my wife to not come in till I'm done. I bought the full set of Hegar stainless steel Dilators on Amazon, which start with a very small size, like maybe 8mm and worked my way up to the largest size, 18mm (which is why the Gi guys do when they dilate you, and is the standard), starting with a 10mm, every night, at first and every few days going up one mm, till I got to the 18mm level. Now, I just do it once a week. You need surgical, or what they call personal lube (like K-Y Gell). Lie on the floor with some Kleenex nearby, on your left side with your legs drawn up, and slide the well-lubed dilator in, turning it a little bit as you go. when you reach the top of the anus, where the stricture is , press the dilator toward your tailbone, and you should feel it pop through into the J-pouch. I hold/leave it there for three minutes and then pull it out. It may have a little blood on it but that shouldn't be a big deal. That's it! Be brave and try it. You can do it! It beats ending up with a colostomy!
Thanks so much Larry. Ordered dilatiors today.
Did GI suggest continuing this weekly indefinitely? Did they say blood is of no concern and does this help avoid those back to back trips to empty pouch when stricture closes up when you are so blocked you can't pass anything?
Can you eat whatever you want or still careful from stricture and out of curiosity have they dilated you under anesthesia? Do you have leakage when the stricture acts up? Sorry for so many questions. It's such an awful situation.
I was dilated under anesthesia 3 time in three weeks, which is why I picked doing it from now on once a week. I'm guessing you could "unblock" yourself with the dilators, but if you do it regularly, that won't have to happen.
The said a very little blood in no big deal.
I eat whatever I want, though I know things like nuts make me suffer, though that is just having a J-pouch, I guess, not related to the stricture.
I had leaks when the stricture was seized up, and sometimes still do when maybe what I eat disagrees with me.
If you would like to talk with me on the phone, email me at firstname.lastname@example.org and give me your phone number, or ask for mine and I'll be happy to help you by really walking through all of the details.
I swear by using the dilator. That said, if things have gotten especially tight, I see a physical therapist that specializes in pelvic floor disorders. That is, by far, the biggest relief I've had.
My stool has been really runny for years and I've tried to thicken it up unsuccessfully in the past with prescriptions from the GI, OTC things to add bulk, etc. I read a tip from another member on this site that helped me a ton - use regular Metamucil with a little bit of water (instead of a full glass that the package recommends). I started with sugar free, which helped, but the regular formula (again, recommended by the same person) is easier to drink. Made a huge difference to my stool/frequency, but also made a difference to my sphincter - I think having to push out something of substance keeps things more flexible, which correlates to a sphincter that isn't on lock-down.
Yes Mary. I agree w the bulking of the stool to help w the stricture. So glad you replied. Do you bleed when dilating and how often do you do it? Does anyone get concerned about impact on sphincter muscles or nerve damage from repeat dilation? The day of and after a dilation I sonetimes experience leaks. It's very distressing. I have read that immodium tightens the muscles over lomotil.
Finally my fissures feel better as well. They are agonizingly painful when in full flare. I am adding more bulk with daily oatmeal as well.
No one has told me to worry about damage to the sphincter, but I live in a tiny little town with limited medical access. I do it once a week with an 18mm dilator, stretching what I believe is scar tissue. I don' get leakage, just a lot of gas after doing it. I deal with a cold-rectal surgeon, not a GI doctor, asI have been told the GI guys, except for specialized ones aren't the best source of info or treatment once you have a J-Pouch. What do you think?