I am seeing him today. I am also very upset about this. I was also upset that when I called to reschedule today's appointment , I was told he was leaving the practice at the end of the month ... No message etc and I was told the letter was going out at the end of the month.

Are we unable to follow him in NY ? I am not sure if he will be considered in network with my insurance. I am unwilling to go to a GI who has no experience with jpouch patients. I am going to ask around and will let you know what I may come up with. I have an associate has a jpouch and I am going to see who she goes to. This is very concerning for those of us who have ongoing issues with pouchitis etc

Hi Jeane,

I had a long telephone conversation with him last night. He told me he is leaving effective February 1, 2015. He asked me to stay in touch with him by email. He also mentioned to me something about a "Pouchitis Clinic" at Mount Sinai Medical Center and how he is hoping to be a part of that. He also mentioned to me he is not yet licensed in New York and it will take some time for that to happen.

Regarding the question of whether my insurance will allow me to follow him, based on my past dealings with health insurers, my guess is no. However I intend to call and ask.

My attitude is the same as yours: I want someone who knows and has experience with J Pouches. When I asked about Dr. Proctor's experience with J Pouches it did not sound like she has much. So I am not going to follow that referral.

I will let you know and post here if I can find another J Pouch specialist, please let us know if you do the same.

I have the same problem. Scheduled for a scope with Dr. Proctor 3/31. Will let you know how it goes with that and the follow up. I've been stable so am willing to see how this new doctor is. If you find someone excellent in New Haven, please let me know.

Ray C

I found out today the practice/hospital our GI is going to does not accept my insurance.
I would have followed him if my insurance was accepted.

Please report back how your experience with Dr Proctor is at your scope. Dr O. indicated she does have jpouch patients but how many I wonder. I filled all my scripts today and had bloodwork done w spinal MRI next week and referral for Rheumy with a follow up appt w Dr Proctor in April. Still have not
received the letter.

Did anyone get an email address other than his Yale one. He said he will continue to get mail at that address for another month.

He told me he would keep my email and stay in touch once he has a new email addy established in New York.

Jeane that is a good idea about filling the scripts. I have almost run out of cipro, have 2 pills left and I am hoping that it can be filled tomorrow.

Ct ... Call the office and have them do. He is there another week or so he said I'm going to email him and ask him to do the same I cw he gets situated, but without insurance overage I am probably going to forced to move on to a new GI. My surgeon did not accept any insurance in NY and it has cost me a fortune considering all the issues I have had since surgery.

I wish I had the nerve to go through the removal surgery as I know I would feel so much better and would hopefully be done with the never ending train of various drugs, sleepless nights and constant pain. This surgery has really taken a toll on my life and at 52 I cannot imagine living the rest of my life like this. It really may be time for a reality check for me and another surgical consult.

Jeane,

I called my primary care doctor, who also works out of Yale, for a reference on a new J Pouch specialist. I am waiting for a call back.

Because I originally got Dr. O's name from a past health insurance carrier when I challenged their decision not to cover me out of network to see my then specialist in New York City in 2009, I called Anthem Blue Cross/Blue Shield. The best they could do was send me a list of 343 gastroenterologists that they have within a 20 mile radius of where I live, but with no "subspecialty" listed like IBD, J Pouch disorders etc. While it amazed me that there are that many covered gastroenterologists within a 20 mile radius (I live in the New Haven area), it was not particularly helpful. The Anthem rep suggested that I go through that list and call the 343 doctors one by one and canvas their experience with respect to J Pouches. I think there has to be a better way than her suggestion.

My father has offered some reassurance that out of 343 GI docs, there has to be at least 1 that knows something about or has seen a J Pouch at least a couple of times.

I am also going to my CCFA support group meeting Tuesday night. We have about 12-15 regulars who attend, but only 1 or 2 others with J Pouches and they don't have the same issues that I have. They seem to be doing well.

Regarding your issues, it sounds like you are having a greater struggle, but have the biologics been attempted in your case? Dr. O had always mentioned to me that biologics are the "last line" of treatment and he didn't feel I was ready for them. But perhaps you are?

Thanks Ctb. We discussed this yesterday due to my continued tailbone pain, left ankle swelling and now inflamed pinky knuckle. I'm thinking he may refer me to a Rheumy again after next weeks MRI.

Part of my issue is I'm very stubborn and I am strongly
opposed to chronic antibiotics and I fight
taking them continually. We have now started
W 250 cipro x 2 daily for one week and then off for next week
I really hope his replacement is as patient as he has been
and full of different ideas as he always is. He really is an amazing doc.
I may continue to see him for annual scopes
even though he does not accept my insurance.
Hell my surgeon does not accept any insurance and I
followed him for four years. Cost me a bundle.

It's nice to hear others have better luck with their pouches.

Keep this post going and I will update if I hear
of any other jpouch GI with experience.

Dr O did mention of doc in practice above him w first name Byran I think, but he is
in his 60's and not sure if retiring soon. I actually transferred from this practice to
Dr O and never saw this GI, but my prior GI in the same practice did consult with him because he was clueless about jpouches.

Jeane,

I think both doctor and patients fight with the idea of continually taking antibiotics over the long term, but in my case I have no choice. As long as they are being rotated, it has not been a problem for me, but when I go off of them, that is when I have major problems start happening. In 20 years it hasn't killed me, and in fact my blood labs have been outstanding in recent years. I do worry that as I get older and my immune system weakens with age, the antibiotic consumption will catch up to me and expose me to something my body can't fight off.

Unlike you, and many people who post on the J Pouch board, I have not had manifestations of autoimmune disease outside of my J Pouch and neoterminal ileum. No pains in my joints, rheumatoid arthritis, or AS which are all extraintestinal manifestations of autoimmune disease. It's always been exclusively my Pouch. It is the only health issue I have.

The only other Doctor mentioned to me by Dr. O is Dr. Proctor. As I mentioned previously I don't know what she knows about J Pouches, and I am also leery of any Doctor who is older than I am, which is 51. I don't think J Pouches existed when Proctor was in medical school. I would prefer a new specialist who is younger and J Pouch savvy.

Thank for for your info. I appreciate knowing your antibiotic experience and how you are managing. I never thought about the age of the doctor. I do know my prior GI who retired before I found the yale practice above Dr O and he was in his late 60 's early 70'S and he had a jpouch, however he did mention he was at the beginning wave of the surgery when he had it done at 60. In 1997 when my father was very ill w colitis in the hospital they did not offer the jpouch and he had a perm ostomy performed so you have a valid concern.

This week I will call the practice I was originally referred to for my surgery and ask if they have any GI specialists who are very familiar with jpouches and will report back my findings. They are located out of Hartford. I also know a girl who has severe IBd and has been on 6 mp for awhile which has helped her avoid surgery and she swears by her GI. I believe he or she may be affiliated w Uconn but I will try and get the info.

It looks like we are still using the same docs (after Gelernt & Gorfine). I just got the letter from Dr. Oikonomou also. He was referred to be by the surgeon Dr. Littlejohn in Stamford because Dr. "O" is good with pouch patients. I am going to call Dr. Littlejohn and ask him who would be a good gastro for a pouch patient that has revisions like us. I will let you know what he says.

BTW, Dr Littlejohn still does my pouchoscopies (sp?) and he is great.

Hi KangaRoe,

Yeah we have had the same history, as I recall you and I were even operated on by Gelernt and Gorfine in Mount Sinai on the same date in 1992- July 10, 1992. We have made it 23 years now, almost, being followed by Gelernt, Gorfine and more recently Dr. O. We still have our J Pouches. And now we are all looking for another Doc to replace Dr. O. It looks like 4 of us in this thread in total are now looking to replace Dr. O, although Ray seems to be doing well and might be a non-challenging case for Dr. Proctor.

I heard of Dr. Littlejohn. He did a J Pouch for a young lady who was in one of my support groups back in the mid 1990s. I heard good things about him. Let us know what he tells you - as I bet his info will be good. Hope you are well KR.

CT do you mind me asking you the name of the Dr. that is transferring to Mt Sinai Hospital. I am asking because I am A patient there. Thanks Grace

Dr. Ioannis Oikonomou- "Dr. O". He is still at Yale until February 1 but I believe it is now public knowledge that he will be leaving for Mount Sinai and Beth Israel.

http://yalemedicalgroup.org/se....profile?source=news

 

Hi Ray-

 

I have an appointment with Dr. Brand on March 26.  He is treating another J Pouch patient in my CCFA support group who has similar pouchitis issues to me.  She has had about 6 scopes with him so I know he at least knows how to scope a J Pouch that has pouchitis.  Ironically, Dr. Brand recently referred her to Dr. O for a second opinion on her, and Dr. O took her appointment despite his impending departure.  She has very good things to say about Dr. Brand, who practices in the same building as Dr. O, so I have decided to give him a shot.  We'll see what happens with that appointment and let me know how yours goes with Dr. Proctor.

I don't even know how to begin to express my anguish over Dr. O leaving.

 

I just started seeing him last year. I was so relieved to finally have found a Gastro who really understood my issues. The horror stories I have collected, from the previous six gastro's who treated me, are to upsetting for me to recount.

 

The doc who is picking up Dr. O's patients in the practice has some very poor reviews out on the internet. I am really not confident about seeing her. I would agree her age is also an issue. Traveling to NY from the Hartford area is just to difficult, I have tried it before. I will share any good news/referrals I find.

 

Jeane - I don't know your whole story but please stop to consider the new issues you may encounter with a reversal. Everyone is different, but my experience is that the issues/problems continue with the ileostomy. Plus you also get more scar tissue and reduce/compromise your intestine further. I prefer to have the aggravation in the rear.

Someone in my CCFA support group is also going through these issues after a reversal.  If it is a Crohn's Disease situation, reversal may not be a panacea that will solve everything.  It could just be swapping old problems for new plus injecting scar tissue issues which is what this guy is now dealing with.

 

Grieving Old Pouch- I share your pain as far as the loss of Dr. O.  He was really on top of things as far as the J Pouch and in my case we literally threw everything at my pouchitis with the exception of the biologics which Dr. O told me was the last line of treatment and I wasn't ready for it.

Dear CTBarrister,

 

I had my scope and followup with Proctor and it was non-eventful.  As you note, my case is not complicated; I'm Cipro-dependent.  Wish I had more to report.

 

Ray