GI recommendation?

Here is my story. I started to experience a lot of severe abdominal pain in 2018. Blood work, stool, CT, ultrasound, colonoscopy showed nothing. Time was passing by but my pain was just getting worse and came to the point I couldn’t sleep on my left side anymore. Went back to my GI in 2019. He didn’t feel like there was a need for more testing and told me it could’ve been just a muscle pain. All blew up in 2020. I started to have a bloody diarrhea, had an emergency colonoscopy during covid lockdown and was diagnosed with a moderate to severe proctosigmoiditis. I tried mesalamine, prednisone, mesalamine suppositories, mesalamine enema, entyvio. I had colonoscopy in December of 2020 and was told I was in remission. The pathology report confirmed it. I am on entyvio now only. I continue having constant pains on my left side, although the pain feels different from the one before I was diagnosed with UC. I can eat only a limited variety of food after UC diagnosis. I would like to get a second opinion in one of the research centers. I am willing to go to NY City and/or Boston. Can anybody recommend a good GI in NYU, weill cornell, MGH, etc. ?

Dr. Josh Korzenik at Brigham and Women’s is great. He used to be at MGH but moved over to Brigham (Chestnut Hill, MA) within the past 10 years. Wonderful, forward thinking care.

Look at Health Grades recommendations for MDs. I think that's more reliable, at least for northeast U.S. The RateMDs plus Vitals Websites tend to post a lot of "crank" complaints. I know a middle-aged female IBD patient who absolutely loved Dr. Bosworth but changed doctors when he moved to NYU. / Old Hat

GloriaD said...
You can see more details about my symptoms https://www.healingwell.com/community/default.aspx?f=38&m=4261223&g=4263726#m4263726
To add in addition to gnawing pain I started to have an enormous burning feeling.
I have a feeling that someone has a blow torch from breast to my naval level. I am taking famotidine now.
I'm eating very bland and very little. Lost more weight. I can not effort to lose any more, I am already 97 lb and 5.5.
I went to Weill Cornell for the 2nd opinion. Had my follow up last week that I had to wait 3 months for. Nothing was resolved yet. Now I have to wait another 3 months to talk to the doctor. There is no even a phone number to talk to doctor's assistance.
Is there other doctors that are IBD specialists but more approachable? I am grateful for my local GI otherwise I am not sure what I would do in my situation with my ongoing issues.
I saw recommendations on this forum for Dr. Colombel and Dr. Steinlauf at Mount Sinai. Who is reachable?
Anybody else?

I’ve been using Dr. Steinlauf since 2005. I have followed him around the City from hospital to hospital as he moved. He listens, is a good explainer, and he does care about his patients and will go above and beyond for them.

He responds to portal messages, his PA returns calls or messages and he will call if necessary.

GloriaD said...
Keith, thank you for your response.

Gloria,

You have to use MyChart to communicate with the GI’s at NYP or Mount Sinai; it’s the best way to handle it and get through. Their offices are extremely busy. If you don’t get a reply in 24-48 hours then follow up again with them.

During my office visits with Dr. Steinlauf I have never felt rushed, actually the exact opposite because he’s willing to spend so much time with me. My office visits are always productive with him.

Keith, thank you for your suggestion. I will try. I was not following up on unanswered messages. I didn't want to annoy anybody. Also I can see for how long the message goes unread. And for one took 4 days for staff to read.

3timechamp, thank you. Will save the name. I am not at the point needing surgery.

GloriaD said...
Keith, thank you for your suggestion. I will try. I was not following up on unanswered messages. I didn't want to annoy anybody. Also I can see for how long the message goes unread. And for one took 4 days for staff to read.

3timechamp, thank you. Will save the name. I am not at the point needing surgery.

Be respectful but don’t worry about annoying someone, you have to be your own advocate because it’s your health.

It generally takes me 3-4 months for an appt to see my GI, but I usually get an answer through the patient portal in 24 hours or less if I am having issues or have questions. My docs are in PA and I wouldn't call my old doc "great", and I have only seen my new doc once so too soon to know. When I saw my new doc one of the things I asked him about was using the portal when I have problems and he was good with that. It takes way too long to actually "see" a doc when there are issues so I am very grateful for the portal

So WC doc wants to schedule you for c-scope? I read something on the WC patient portal that they now require a COVID-19 test a few days before "procedures". They do have a good out-patient scoping facility in their Koch building if that doc can get you scheduled there. After the scope you would get juice + graham crackers to revive a bit, but you need to have an escort to pick you up there for discharge. If you live too far away to drive there after prepping, 3time champ can probably advise you on a reliable place to stay overnight near WC-- because he did that himself; I remember that he told us about it in a post here on the forum. Good luck with connecting by phone or MyChart for better info; ask to speak to a nurse-practitioner if the receptionists can't answer your questions. *** RE Mt. Sinai: it sounds like they gave you the wrong info about Dr. Steinlauf because he IS an IBD specialist. The reason you couldn't get an appointment with him for 2 months is that he's very popular, therefore very busy. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)