Am I expecting too much from my GI?

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Regular Member

Date Joined Apr 2016
Total Posts : 49
   Posted 1/12/2018 5:05 PM (GMT -6)   
I’ve just about had it with the new GI I’m seeing. I switched to her in the spring because she’s associated with a university hospital and is a specialist in IBD. She made me wait so long for the initial appointment and then again for the colonoscopy even though I was having symptoms, and I swear that contributed to me getting so sick and needing to be hospitalized. Meanwhile, I saw her once while I was in the hospital for 9 days. Didn’t even call to check in and see how things were going. When they submitted the Humira prescription they did it for the wrong dose, which lead to me calling them for 2 weeks and trying to get them to fix it. Most of my calls and messages went unanswered because, as one nurse told me, they didn’t understand why I was calling or what the problem was.

I had a follow up appointment scheduled for the 4th, which had to be cancelled due to the snow storm. I had to call them to reschedule and they tried to give me an appointment in May!! I just started the Humira in September, and I assumed that it would be important for me to be seen before May. They were finally able to squeeze me in with the nurse practitioner for this coming Monday.

My husband had the flu last week, and now my daughter has it. I’ve been taking tamiflu to hopefully prevent it, but I was wondering how I should proceed with my next Humira dose. Should I hold off until my daughter is symptom free and the incubation period is over, or just take it if I’m not showing symptoms. I feel this is kind of an important question, but my message through the portal was read, and never answered, so I called today and never received a call back. I had to take my next injection tomorrow and now I don’t know what to do.

I’m just so frustrated with the doctor, and the entire office staff. Is this just how these offices work? Or am I right to be expecting more from them??

One of the reasons I chose this practice is because the GI has a lot of experience with pregnancy and IBD, and I’m hoping to get pregnant soon. Now I’m worried that I won’t even be able to eat in to see her, or get any questions answered, if I have issues during pregnancy.

Regular Member

Date Joined Apr 2016
Total Posts : 49
   Posted 1/12/2018 5:09 PM (GMT -6)   
Also, if anyone has a suggestion on how to handle the Humira situation, I’d really appreciate it. I’m due to take the injection tomorrow, and have no idea if I should hold off or do it.

And if anyone has any recommendations for a good GI on Long Island, that would be great.

New Member

Date Joined Jan 2018
Total Posts : 17
   Posted 1/12/2018 5:52 PM (GMT -6)   
I can't tell ya what to do about the injection scheduled for tomorrow, but the concerns about the doctor are easy to resolve - find another doctor ! Regardless of your current doctor's supposed qualifications, if the doctor is uncommunicative it's tough to discuss and develop a treatment regimen.

Veteran Member

Date Joined Jan 2010
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   Posted 1/12/2018 7:00 PM (GMT -6)   
Why would you stay with a doctor that is giving you wrong dose of RX, not replying to your calls to correct that and generally treating you like crap? If this was a relationship you'd get the message that this person wants nothing to do with you.

Bad office staff? That's the doctors responsibility because the staff is who you interact with 90% of the time.

Good doctors will be hard to get an appointment once they have filled their quota. New doctors will not have a track record so they won't best listed in the "Best Doctors of YourCity". I just switched to a new primary doctor, I saw how well he treated my husband in a severe bronchial event and kept him out of the hospital. My previous doctor I only got to see the nurse because she only works 3 days a week, if I got in trouble I'd be told call 911.

Good luck.
Diet=gluten-free modified Paleo+potatoes+low dairy, low grain, no seafood (IBS),low fiber diet
In remission April 2010 after 10 years of UC after no remission ever
gluten-free =bleeding stopped, dairy-free (less IBS) started remission path+food diary
daily: Balsalazide 750mg and 2 Ginkgold tablet
rarely: VSL#3, mesalamine enema, Canasa supp, Citrucel

Regular Member

Date Joined Aug 2015
Total Posts : 468
   Posted 1/12/2018 8:35 PM (GMT -6)   
I agree that seems subpar. If you really want to stay with her for her qualifications maybe check to see if they have a my chart system for email. I have much quicker and better results via my chart than phone.

As far as hospital stay...I had a great GI in another state and he called me personally a lot with results and questions. However I was hospitalized for 3 weeks and never heard from him. After he explained I understood. He said hospital staff at universities are teaching establishments. He doesn’t like to interfere with the hierarchy they have and teaching going on. He monitored my chart daily but stayed out of the day to day. He actually believed the hospital staff is more skilled at emergency approach than he was. Sounds reasonable since they deal with the most severe cases.

I’m not on humira so I can’t advise but I was told to maintain my remicade unless I have symptoms. I would definitely wash hands as much as possible and invest in disposable masks! The tamiflu should help!
Female 45 years old- uc diagnosed 7/13
Remicade every 6 weeks since 8/15
Imuran 150 mg, viramin d, probiotic, estrogen, pepcid ac
*hysterectomy, endometriosis and ovarian cysts removed---made a world of difference with uc symptoms!!

Regular Member

Date Joined Jan 2017
Total Posts : 395
   Posted 1/12/2018 9:52 PM (GMT -6)   
My doctor isn't quite that bad and I am considering switching. That doesn't sound very much like there is good communication. I talked to the office manager after I was told by the doctor to follow up in two weeks and then had desk staff tell me that it didn't matter what the doctor said that I would just wait until someone canceled. She scheduled me right then and said I shouldn't have been told that. I have since had better success with the staff. In bigger offices with multiple staff you can sometimes figure out a person that does better and then ask for them. Just some things to try until you can find a new doctor or decide to stay.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, 40 mg pred, waiting on Entyvio due to reaction Humira. Veg, gf, no cows milk, multi, cal-mag, Aroga, Purrium

Veteran Member

Date Joined Jan 2004
Total Posts : 8360
   Posted 1/12/2018 10:37 PM (GMT -6)   
say adios to all those buffoons and find a decent doctor and staff -

and screw the fancy degrees, qualifications, and plaques on the wall -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

Regular Member

Date Joined Apr 2016
Total Posts : 49
   Posted 1/12/2018 11:54 PM (GMT -6)   
Thanks for all the replies. I just wanted to make sure I wasn’t overreacting and getting upset over things that happen at most practices. Clearly that’s not the case. I’m going to voice my concerns at the appointment on Monday, and will most likely start looking for a new doctor.

I ended up calling the on call doctor to ask about the Humira injection and was told to take it as long as I’m
Not having any symptoms. Just in case anyone else experiences a similar situation.

Forum Moderator

Date Joined Feb 2003
Total Posts : 16792
   Posted 1/13/2018 2:16 AM (GMT -6)   
Crispix, I just read a post in the crohns forum. One of the members is on Remicade & her husband & daughter both have the flu. Her dr advised her it was fine to get her Remicade infusion as long as she was having any of the flu symptoms, which she was not.

We are beginning to see a bit of a trend with the big teaching hospital specialists & with big name specialists. Calls not returned, staff not helpful & long waits for appts, which indicates patients needs are not being met. All of those diplomas hanging on the wall mean nothing if you cannot get care. If the specialists are pretty seasoned attitudes tend to be on the dismissive side. Keep in mind, these drs work for us, we pay them. Yes, your insurance pays them, however, you pay for your insurance.

I went through 4 gi's before finding number 5. Number 5 was a keeper.
Moderator in Chronic Pain & Psoriasis Forums

Regular Member

Date Joined Nov 2017
Total Posts : 70
   Posted 1/13/2018 6:15 AM (GMT -6)   
Yup SEEING you specialist seems to be a thing of the past these days. Since the new insurances came into effect, in the US, and with hospitals having their own staff and making it difficult for private physicians to use their facilities....sadly, your case seems to be the norm now. BUT...why have a GI doctor who won't take the time to treat you?! I have a great GI doc, but it is not easy to get an appointment quickly. It's usually a month away! If you are really sick, in pain, or desperate, they will try to work you in. I realize they are busy and filled up with patients, but it certainly makes it difficult on a patient who is sick. In my case, the office staff are kind and try to be helpful, but when you do get an appointment, it's with a physicians assistant. THEN you may be seen by the doctor. It is frustrating, and can get expensive. You pay for an office visit, see a P.A., then get another office visit to see the doctor. Just be sure to make a written list of question you wish to ask when you do FINALLY see your doctor. They allow about 10 or 15 minutes per patient, so make the visit count. Only God knows when you'll get another one. It doesn't hurt to search for a GOOD G.I. in your area. Look for censures issued by a medical board and patient reviews. Good luck and feel better soon.

Forum Moderator

Date Joined Aug 2012
Total Posts : 13220
   Posted 1/13/2018 7:59 AM (GMT -6)   
Specialist doctors offices are often overwhelmed: too many patients and too few staff. Not an excuse but the reality. As such, you might have to be a hornet in their ear to get what you need. He/she who is persistent is most likely to get a response. Ridiculous that we need to do so but the reality says we must at times.

Are there other gasteroenterology practices near you? How long for an appointment? It's usually a process of a number of months to have an actual in-office consultation appointment at another practice and your records transferred over. Not as easy as saying: i'll drink pepsi today instead of coke and get it at any store lol. And then you're not guaranteed the new practice isn't just as overwhelmed...

Yes you deserve better care and quicker responses to your concerns. I've definitely gotten better care at the couple gasteroenterologist practices I've gone to. Not sure if you can ascertain the doctor to patient ratio in advance...
Moderator Ulcerative Colitis
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

A semi-finalist in the Olympic 15-meter bathroom-sprint. Aimed for the gold but just ended up getting brown...

Post Edited (iPoop) : 1/13/2018 6:08:33 AM (GMT-7)

Regular Member

Date Joined May 2016
Total Posts : 276
   Posted 1/13/2018 12:17 PM (GMT -6)   

My GI doc is an IBD specialist at a well known teaching hospital. I have his cell phone number and he answers text messages on the weekend. I also use the hospital portal system and get quick responses. I have had many phone conversations with this doctor as well. He is not getting paid for these conversations either. I got rid of the doctor that treated me the way your doctor is treating me. I would probably take the Humira if I were in your shoes. I would be more afraid of rocking the boat GI wise than getting the flu. You also said you used Tamiflu as well. Now you would be a great testament of someone on humira living with 2 people with the flu and not getting it!! That would give me great hope. Keep us posted.

diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, off prednisone since 12/26, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

Regular Member

Date Joined Apr 2013
Total Posts : 343
   Posted 1/14/2018 10:54 AM (GMT -6)   
I hear what the OP is saying about having a GI who doesn't have time to properly treat you. I'm looking into a Concierge Doctor facility right now. I need to find a team who is willing to take the time to get to the bottom of what's wrong. It's pricey, but not as expensive as taking $700 a month Lialda & $125 rectal foam that isn't doing a darn thing for me and I still have massive D and rectal bleeding along with a GI who I have to wait months to get into, doesn't return calls, acts like I'm an idiot but he has never ordered a scope to even know for sure what is wrong. It's so frustrating!

Veteran Member

Date Joined Feb 2017
Total Posts : 501
   Posted 1/14/2018 5:14 PM (GMT -6)   
I'm not trying to excuse un-returned phone calls or messages because that's unexcusable in my book. But as far as wait times for new patients, IBD diseases are on the rise and the medical colleges need to train more GIs. Here's what my GI told me, who is a fairly new in the field: There is a quota for how many fellowships they award each year to train new GIs. I thought he said 1500 for the whole U.S., which is a REALLY small number, especially when IBD disease is on the rise. He said the "older" GI generation didn't want to add more fellowships because they didn't want to lose patients ($$$$) to other GIs. I don't think they foresaw that the need for GIs was going to explode on them. My GI said the newer generation of GIs are trying to change the # of fellowships but it's going to take time -- and then they have to be trained.

I never knew there was so much politics involved in training doctors for specialties. I don't think my GI had any reason to lie about this and it makes sense. Sad for us patients, though.
UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam as needed
Supplements: Zinc, L-glutamine, Probiotics: Reuteri pearls, VSL #3, Folic Acid, CoQ10, turmeric, boswellia, milk thistle, NAC, reservatol, colostrum, glycine
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)

Veteran Member

Date Joined Feb 2015
Total Posts : 565
   Posted 1/15/2018 10:47 AM (GMT -6)   
Valid issues. Problem is always everyone wants the best doctor, and then that doctor gets swamped and the more patients they have the worst the attention each patient gets.

Simple supply and demand. Give a newer GI with less experience a try, they may be the next superstar in training/waiting but just doesn't have the patients for reviews yet. Could be your golden ticket if you get in early and he makes quality time for you.

Veteran Member

Date Joined Sep 2005
Total Posts : 5162
   Posted 1/15/2018 10:57 AM (GMT -6)   
In your situation I'd look for a GI that specializes in IBDs & Pregnancies. There are GIs in NYC that specialize in that, I'm not sure about LI. It will be well worth the travel time to find the right GI for your situation.

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!

Regular Member

Date Joined Apr 2016
Total Posts : 49
   Posted 1/16/2018 8:53 AM (GMT -6)   
Thanks for all the feedback.

As an update, I saw the nurse practitioner yesterday, and really liked her. She was very attentive and answered all my questions. She said that I can send any messages directly to her, and she’ll make sure they’re answered. She also said that I can make my appointments with her, especially if I’m having symptoms or issues, and she’ll get me into her schedule in a timely manner, and if needed, she’ll have the doctor come in and consult. I’m feeling much better about staying there for the time being.

Regular Member

Date Joined Apr 2016
Total Posts : 49
   Posted 1/16/2018 9:02 AM (GMT -6)   
countess18 said...

My GI doc is an IBD specialist at a well known teaching hospital. I have his cell phone number and he answers text messages on the weekend. I also use the hospital portal system and get quick responses. I have had many phone conversations with this doctor as well. He is not getting paid for these conversations either. I got rid of the doctor that treated me the way your doctor is treating me. I would probably take the Humira if I were in your shoes. I would be more afraid of rocking the boat GI wise than getting the flu. You also said you used Tamiflu as well. Now you would be a great testament of someone on humira living with 2 people with the flu and not getting it!! That would give me great hope. Keep us posted.

I haven’t gotten the flu at this point. My daughter has been fever free since Thursday afternoon, so I’m hoping I’m in the clear by now. I’m still taking the tamiflu and I took my Humira injection on Saturday. My daughter had tested positive for flu B and rhinovirus (which is the common cold), I seem to have gotten the cold, but not the flu. Which I’ll take, since we’re leaving for Disney tomorrow.

I think the tamiflu probably helped, and my daughter was also on tamiflu, which I’ve read can decrease some of the virus shedding.

Hopefully everyone else is staying healthy!
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