Ive had my j pouch  almost 21 years   i only reciently  gain control of the  problems of ours  with plenty of help from lomotil

 

24 years here. Had zero issues for 20 of them. 

Interesting thread concept.

 

Question:  Have you ever had strictures?  If so, what symptoms did you have and did you need multiple dilatations?

Interested in the answer to the stricture question as well, I know I have one closer to my pouch but thinking I may have one higher up due to stomach pains multiple times a year.

Hi! I've had my pouch since 1999 and lived with very little issues until 2012. I had/have stricture(s)...symptoms were bloating, not feeling completely empty after going to the bathroom & some general discomfort. I had a severe obstruction in 2012. My issue is up high...chronic inflammation, my pouch is "a work of art" as described by the doctor who did the dilation. Dilated a little over a year ago, (3 procedures to get it as open as possible) but I've had 2 obstructions recently that cleared on their own. Tried Entocort which was great for a few weeks, but I'm now feeling like it's time to dilate again.(First doctor I went to for dilation tried, couldn't do it because of scar tissue & told me to go to a bag ASAP. That didn't seem right to me so I turned to this site for help & found it!) Hope that helps...good luck.

Thanks 13years, can they dialate up high? Is that done under sedation?

Yes, it can be done, and yes, it's under sedation. You have to find the correct doctor to do the procedure though. As I said, the first doctor said it couldn't be done, but to me that didn't seem right. I turned to this site for help & found it. Where are you from? If you're from the NY/NJ/Conn area Dr. Legnani in NYC is who I used. It's not a very long procedure, I needed it done 3 times to get it as open as it could be, and the next day I was fine...back to doing whatever I wanted. Keep me posted!

Grieving,

I live in NJ and the surgeon here said I needed to go back to a bag ASAP when he said I couldn't be dilated. That was unacceptable to me, especially since I live so close to NYC where I know there are better doctors. With the help of people here I got some names of surgeons. I saw Dr. David Chessin who then referred me to Dr. Peter Legnani (GI Doc.) Dr. Chessin called Dr. Legnani while I was there & I saw him the same day. Needless to say, I still have my pouch. There's also a doctor out of Cornell that was recommended, but the name escapes me. Check out doctors in NYC...Mt. Sinai is one of the top hospitals for people like us. Good luck!

Grieving,

Got the other doctor that was recommended...Dr. Toyooki Sonoda out of NY Pres/Cornell. I had an appointment with him, but saw Dr. Chessin & Legnani first, felt comfortable with them so I cancelled w/ Dr. Sonoda.

Thanks 13

 

I had a consult with Sonoda a few years ago. I would never go back. He double booked me and I had to wait an hour while he saw his regular patient, he was not apologetic, did not listen to me, and was just not generally impressive with his knowledge or recommendations.

 

I do not care to spend an entire day commuting to and from NYC to see a doctor on a regular basis. I am not adverse to a consultation however, it is unlikely Legnani do anything for my chronic condition.

 

Sorry I'm so late in getting back to everyone. Had a 'bout of 'work emergencies' over the last week. Lots of issues. Can't get into all of it. MANY APOLOGIES!

 

I have not had a stricture, to be honest. Sounds scary. There was one time I thought I might have, because of some bladder issues that developed, but those were for a totally other reason.  

Wow, this one is tough to hear. I'm very lucky that I have not had any issues other than 1 unexplained flare up with some bleeding. I'm unfamiliar with your area, but I'll just tell you what I've done. I had a surgery in one city that I lived closer to in 2003. Then I moved to another, higher populated area in 2004 so I started seeing a GI regularly for a flex sig and just to "check the pouch out" on a yearly basis no matter how I feel. This has been good for maintenance. It's been a little over 10 years now and the doc says he just wants the flex sig once every 2 years now. So I guess I'm saying, I would recommend regular flex sigs just to stay on top of what's going on. 

Grieving,

I kept my doctor here in NJ and had Legnani do the procedures. I first went to Chessin (surgeon) because I thought that is who would be able to help me since that's the type of doctor who tried here. I had one consult with him, & then the consult with Legnani. If you're not adverse to seeing Legnani for a consult I would give it a try if for no other reason to know you explored your options. Remember, the surgeon here told me I would never have any relief, I couldn't be dilated because of scar tissue, & I needed to schedule surgery for an ostomy ASAP. You have nothing to lose but some time, travel expenses & your co-pay. Try to be optimistic!

 

Hi, I have had my S pouch 26 years. I live in Charlotte, NC. I am looking for a doctor who really knows this surgery. The GIs I have had here really only have experience with me. How do I find a GI that is experienced? For medical issue not for any surgery. When I asked the MDs, they always say "oh sure I have experience" Then they ask me a question that shows they do not understand my anatomy.

I didn't know that it was such an issue, my stricture was towards the top of my pouch and the GI (Dr. Steinlauf) just dilated it while I was under-sedation.  He is part of the NY Presbyterian Cornell team.   

Adam,

 

Have you changed your diet or added probiotics over the years to your regiment?  Any lifestyle changes that you made because of your j-pouch?

 

I'm a j-pouch noobie, my take-down was ~7 months ago.

if you are  near a Cleavland  clinic Dr jaun nogueras 954.659.5101is  one of the best .....   i had multiple problems with strictures    sprung a leak  had to be fixed  it hasnt been a good  thing  i tried  several years ago to get The Barnett Continent Intestinal Reservoir (BCIR) put in because  of the constant accidents  but  they told me  that i didn't have  enough  intestine to do it . I wish  I had been offered more than one  type of surgery  for this i wouldn't have picked the j pouch  he did  two  of my  children's   j pouches and they both worked  fine no problems  i don't know  why mine was such a ...........  maybe the chemo