Calmo
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13 Years & Counting
Hi All,
I've had a well functioning J-Pouch since October, 1999. Last December I had a first-time obstruction that landed me in the hospital. I've had 2 more since that have cleared on their own. In October I had a Sigmoidoscopy that showed a great J-Pouch, but a stricture. Yesterday I went in to have the stricture balloon dilated open and got news I NEVER expected. I was told the stricture was dilated ever so slightly because it's right next to a large amount of scar tissue that can't be addressed. The recommendation is to go back to a bag. This is unacceptable to me at this point in time. I'm naturally going to search out other opinions, but any insight would be helpful. It would be one thing if I'd been miserable for years, but I've only been "uncomfortable" for a short time, & not everyday. For the most part I go about doing my things. I get up every day, work out, do household chores, take care of the family, etc. I'm in no way house-bound! I've adjusted my diet some, but to me that's not a big enough "misery" to go to a bag. The thought of that surgery, recovery, & of course the body image/psychological issues are huge to me. Also, if anyone can recommend a surgeon in the New Jersey/NYC area, I'd appreciate it. Thanks.

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mgmt10mgmt10Member
Mt. Sinai in NYC has great J pouch knowledgeable surgeons. Dr. Joel Bauer to name one. You could start there or if someone told me what was told to you, I would probably go straight to the Cleveland Clinic for an opinion. (I'm in NJ too). Now I'm no dr. but your situation seems fixable. Just curious, where do you get your care now that they told you this? Maybe he or she just isn't experienced enough to deal with what you have going on. I had my surgeries at Jefferson University Hospital in Philly and they are great too.
mgmt10
13 Years & Counting13 Years & CountingMember
Thank you mgmt10 and Jeane. I know Mt. Sinai is a great place to be in NYC, so thank you for providing a doctor's name. The surgeon who did my original surgery was out of Chilton & Valley Hospital(s), but he is retired. His group has other surgeons so I've been seeing one of those. There were 2 surgeons in the procedure yesterday so I'm guessing they must have talked about what didn't happen & what they discovered. In terms of the location Jeane, I'm not 100% sure probably because I was too shocked to ask! I do have pictures to take with me when I see another doctor. I was told there really isn't a way to dilate because of the scar tissue. I truly think there has to be a better solution then the one I was presented with yesterday. Thank you Jeane for your recommendations as well. Dealing with someone who doesn't take insurance is NOT an option!

Thanks again to both of you...I really appreciate you taking the time to help.
13 Years & Counting
B beckysmomMember
Check for sure, but I don't know if Bauer takes insurance. There are some at Mt Sinai that do, Dr. Steinhagen and Dr Ky (who was trained by Dr. Milsom). As jeane said Dr. Milsom is at NY Presbyterian Weill Cornell and Dr Sonoda does take some insurances and was also trained by Dr. Milsom.

Hope you find relief soon. My daughter has suffered with strictures and just yesterday had another partial blockage.
B
13 Years & Counting13 Years & CountingMember
Thanks beckysmom! I have checked, & Dr. Sonoda does take my insurance. Drs. Chessin & Popowich also take my insurance & they're associated with Dr. Bauer (who doesn't take insurance except Medicare assignment)at Mount Sinai. I will be making some phone calls for sure! I just find it very hard to believe I have only 1 option...a bag!
I hope your daughter is feeling better soon! Fighting a battle is never fun, but all of us keep pushing forward, it's the only choice we have!
13 Years & Counting
13 Years & Counting13 Years & CountingMember
UPDATE: I saw Dr. Chessin today who believes the stricture can be dilated. He also said that my pouch looks INCREDIBLE (based on the scan I had a few weeks ago) and that the worst case would be to bypass the way things are going now...kind of re-route the flow into the pouch. That's a MAJOR surgery, but one that would allow me to keep my pouch. He then sent me over to see a GI doctor he works with (Dr. Legnani)...actually picked up the phone & called him himself to see if he would see me today, & he did. He is in agreement w/ Dr. Chessin, & he also said my pouch was amazing. So, I scheduled a dilation @ Mt. Sinai for 1/13, both doctors will be there.
So...my question is...do I keep an appointment w/ Dr. Sonoda for 12/13? Not sure what to do.
13 Years & Counting
B beckysmomMember
Great news! I would have guessed that a doctor would try a dilation before surgery, but I didn't want to overstep. I'm glad you like Dr. Legnani also, my daughter sees him even though her surgeon is at Weill Cornell.

It's really up to you if you want another opinion. I can tell you that when my daughter first saw her surgeon he did a dilation. That seems like the most logical first step.

Take care.
B
13 Years & Counting13 Years & CountingMember
beckysmom,
Small world isn't it? As it turns out, Dr. Chessin grew up and still lives in the town I currently live in & his wife is a PA in the practice that my Primary Care doctor is in. Don't know if that all makes a difference, but the fun fact(s) for the day. If you don't mind me asking, who is your daughter's surgeon & how long has she been seeing Dr. Legnani? If you're not comfortable saying I totally understand!

Going to take the weekend to think about whether I should keep the appointment w/ Dr.Sonoda. I just want to make the best decisions possible.

Have you ever heard of anyone having the flow into the pouch bypassed & re-routed? I did post that in the General Discussion Forum, so I'll see what kind of response I get.

Thanks for your kindness! Happy Holidays to you & your family!
13 Years & Counting
13 Years & Counting13 Years & CountingMember
I did like Dr. Chessin. He's very knowledgeable and was easy to talk to. He listened, explained himself clearly, seemed to genuinely care, & is confident that I won't lose my pouch, which is really what I want. Sure I'd like to "save" it without surgery, so I'll try the dilation again, probably multiple times if it goes okay in January. (BTW, Dr. Chessin & I live in Passaic County, fairly large town.)

Obviously you/your daughter are pleased with Dr. Milsom. I know Dr. Sonoda is part of the group...makes me think! Thanks again for your help!
13 Years & Counting
13 Years & Counting13 Years & CountingMember
beckysmom,
All went VERY well yesterday! Dr. Legnani said he couldn't be more pleased with how everything went. He was able to dilate from about 3mm to 8mm, and was very impressed with how my pouch looks. He indicated that if I ever needed to have a bypass/re-route, there's plenty of "room" to do that. I need to call his office this morning to schedule another dilation for 2 weeks. At this point he hopes to dilate to about 12mm. He'd love to get to 18, but isn't sure that's achievable...however, he'd be very pleased at 15 & thinks that can be done. So, it looks like I'll be going back for a 3rd procedure.
Thanks for all your input and concern...it's appreciated!
13 Years & Counting
13 Years & Counting13 Years & CountingMember
Beckysmom,Thank you so much for checking in! Yes, I'm done with the dilations...a total of 3. Feeling much better in my belly, not swollen & tight. Still experiencing some difficulty going to bathroom. Not sure if it's do to a lower stricture near the "exit" (which seems to be a recurring thing) or something else. I'll follow up w/ my GI doctor in NJ. Last procedure was at Carnegie Hill Endoscopy instead of the hospital. MUCH nicer experience & if I ever need to go through this again I'll do my best to go there!
I think of you & your daughter often. I do hope she's feeling much better than a few months ago. The winter has taken it's toll...my son has a snow shoveling business in our neighborhood that's become more of a "family" business, so I find myself shoveling snow w/ him for hours! Really ready for Spring! Thank you again for thinking of me & please let me know how your daughter is doing. Will she be graduating w/ her PhD in May? You must be very proud of her!
13 Years & Counting

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