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emptynester2010
New Member


Date Joined Jul 2010
Total Posts : 17
   Posted 7/22/2010 4:36 PM (GMT -7)   
Trying to get a feel for how often I should expect the gastroenterologist to be seeing my son. It seems like he always gets symptoms a few weeks after a visit and then it will be several weeks before he is scheduled for another appointment.  Should he call at the first signs of a flare up and should he expect to be able to talk to his doctor or be seen within a few days?   They have made him feel this is unreasonable.   If they won't see him should he go to an emergency room?  Isn't this all information that the doctor should have shared with my son?   Please no comments about making my son handle this on his own and why am I on here instead of him.  heard that all on my last post. 

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 7/22/2010 5:01 PM (GMT -7)   
emptynester - I don't have kids but I know it is hard to break that bond and stop caring for them. My mom worries about me all the time and while I do take care of my own stuff I see where you are coming from. No lecture from me! I have not had to see my gastro for an emergency type visit. But, the office has always been available by phone. Once I was diagnosed with them and started treatment if something was getting worse or not working I could call and have a phone consult by 5:30 that evening. Either the doctor or his pa called me back. If they thought they needed to prescribe me something they just called it in. For me this is great because less copays I have to pay seeing the dr every time I have a mini flare. I know with specialists it is harder to get in immediately. I can call my prmary care office and have an appt sometimes that day if it is serious enough but I doubt if that would happen with my GI. It is just the nature of specialists. I also think it is a trade off. They do not overbook which means that when i go to see them I am literally in and out. I kid you not when I tell you I had an appt one day with the dr at 3:00. i was in the room exactly at 3:00 and settled in with a magazine waiting for the dr. He was there like 3 minutes later. I was walking out the door at 3:10! By contrast my brother was admitted to the hosp with severe abdominal pains(diagnosed with diverticullitis) and he had to follow up with the gastro he saw at the hosp. His appt was at 3:30. he was there until 6:00! But the trade off was my initial appt with this office was two weeks after my PCP referred me and that was not even with the specialist. I saw the PA, who I also love BTW. Never refuse to see a nurse practitioner or PA. They can be just as good as seeing the dr.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Multigen


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/22/2010 5:42 PM (GMT -7)   
I find it helpful to set up contingency plans with my dr, e.g.:

"I often find I get sick x weeks after my appointment; is it all right if I can call you if it happens again? When would be the best time to reach you?"

And then, if he says it's all right to call, I make sure the receptionists know about it in advance, e.g. "he said it would be ok to call on _____ if I run into problems".
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 7/22/2010 6:01 PM (GMT -7)   
I see my Dr every 4-6 weeks and I feel like I am welcome to call with a question at any time. They call me back (sometimes it takes a day, which does annoy me, but often that same day) and answer me and never make me feel like I shouldn't have called, no matter how simple the question. If they are concerned, they will have me come in and squeeze me in that very day or within 2 days or so so less urgent matters. In a real emergency (I often have obstructions) they tell me to go to the ER and I know when to do that by now. I would not be happy if my Dr did not make me feel like I was important to them, as seems to be the case with your son. I don't know if it makes a difference but I Dr it located at John's Hopkins, just fyi.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/22/2010 6:06 PM (GMT -7)   
When I am not stable my rheumatologist sees me every 4-8 weeks (depending on how unstable) when I am stable it is every 3 months.
I can call my rhuemy anytime I have symptoms and get a phone call back from her-not someone in the office-the same day. Sometimes (if the doc isn't in the office that day) the nurse will call first with questions but my Doctor calls back-every single time.

I have never left her office without her telling me to call me if I have trouble.
That is why I now drive 90 minutes to her office instead of seeing the doc 5 minutes from my house.

grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/22/2010 6:24 PM (GMT -7)   
Hi, I am so not impressed with GI doc's at this point. Don' know if they are so busy with too many patients, not overly personable or insensitive to the needs of the patient. I called my GI on Wednesday and talked to the GI's nurse (was amazed at her answering the phone vs me leaving a message which is the norm). They have yet to call me back even though she promised a return call that afternoon so I am kinda in your boat - guess it will have to be an ER visit if something significant happens. Am thinking I have symptoms consistent with a partial obstruction which seems like a reasonable doc's office would take seriously. My primary care doc is all about information management- if I call she is effective and efficient and get answers to issues. My experience with GI docs seems to be opposite of this approach. Have mulled it over and feel like their brains are impaired from sniffing too many fumes. Am no so very impressed so hope you all can find a GI like some of the others have discussed on these message boards.
Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin.
 
 
 

Post Edited (grumpygi) : 7/22/2010 7:36:26 PM (GMT-6)


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8550
   Posted 7/22/2010 6:29 PM (GMT -7)   
I have a hospital appointment 2-3 times a year. Will be slightly higher this year, but only because my colonoscopy showed more severe disease than I think was expected.

I just hope that I don't get critically ill in between appointments because there's no way I'm seeing anybody from the gastro dept. in the meantime. It seems to me as though NHS hospital consultants go actively out of their way to discourage patients from calling. You're not given a telephone number, for example. Now, I never phone the hospital normally speaking. But a few weeks ago my GP wanted me to give up 6MP for a week. Decided to clear it with the hospital first, and ended up bitterly regretting the decision to even bother trying to get in touch. Long story short, it took ages to get through to the receptionist and when I did they hadn't even heard of my particular doctor, so I had to to give them the name of another gastro doctor whose name I knew but had never seen before. And then I was never called back anyway.

If I fall ill, then I just see it through rather than go to the doctor about it. No, I don't feel like anybody cares.

Edit: Grumpygi's post wasn't there before I posted, but in a nutshell I agree with the sentiment "pretty much the patient is on their own". It obviously does depend and some people seem to have quite supportive GIs. I got a bit self-pitying in my final sentence, but I would like to modify that by saying I do think my GP cares. But hospital treatment seems to be kind of aloof and distancing.

Post Edited (NiceCupOfTea) : 7/22/2010 7:37:56 PM (GMT-6)


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 7/22/2010 6:35 PM (GMT -7)   
All depends on the protocol of the GI I would think and where a patient is in their IBD. Cannot tell you how many times my Daughter has felt great at a regularly scheduled follow up appointment only to feel miserable days later. Her Ped GI was out of town a lot so it was usually Urgent Care time when he couldn't be contacted. But for the most part he was wonderful and treated her all the way through College (coordinated with Campus Health Services) and a little thereafter and even via email when she was on Study Abroad for 5 months in South America where she of course promptly flared!! He gave my daughter his private office number, his pager number and his personal email to use when needed. Sometimes response was quick and sometimes no response if he was on vacation or out of town at a Conference.

Now that she has been living in New York City for the past 4 years she has a GI who only has Office hours 2 half days a week so much of her contact with him is via phone when health is not going well. He is very, very prompt in getting back to her in trying to resolve the problem. He has even gone to bat to her when her insurance refused to pay for an MRI that he prescribed. It has all worked pretty well considering they don't see each other very often face to face in office.

From experience using Urgent Cares or ERs I can't say much gets accomplished, at least in my Daughter's case. They take notes, they do some blood work, they press here and there. They usually just say followup with GI. It's like they have no clue what to do with an IBDer
and don't want to prescribe much except for some IV fluids while there for 3 hours. In some cases it has been a major waste of time but at least an ease of mind that it could wait until GI could be seen and sometimes she'd be fine again before she even seen her GI.

emptynester2010
New Member


Date Joined Jul 2010
Total Posts : 17
   Posted 7/22/2010 8:38 PM (GMT -7)   
Thanks for the responses.  Glad to hear others have also had some poor reponses from the GI guys.  I have heard  that a lot of them are not really all that thrilled with having to treat IBD'ers.  They are out there scoping for $$$$ on the routine colonoscopies ordered for the over fifty crowd. 

mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 7/23/2010 3:48 AM (GMT -7)   
emptynester - I wanted to let you know that I also am my daughter's advocate for her Crohn's and I don't make any apologies for it. No one knows our particular situation and should not question it. My daughter would never get on a forum and talk about her problems. That's just the way she is. She deals with her health problems privately. She says it depresses her to discuss it. Researching what could help her has been my way of coping and has helped me when I feel helpless. Just because your child grows up doesn't mean you can or should automatically disconnect. So I hope everyone takes this into consideration before critiquing others.

As far as GI doctors go, I have plenty of stories myself but basically most of them apparently have too many patients to handle and seem to stay distant and give vague answers to everything. Our other doctors confirm my opinion of GI's. I am convinced they don't really know the answers to most of my questions. My daughter thinks they are mostly weird because she says, "What normal person would be interested in bowels?" I guess she has a point.

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 7/23/2010 5:07 AM (GMT -7)   
mastersmom, Good post! Exactly the way I feel! I have researched everyday for the past 11 years and pass on all the interesting stuff to my Daughter. It is my way of helping even though I can't always be there physically to help.

My Daughter has been lucky with her GIs. It was a little rough when we first started with her Ped GI because he was part of a huge Health System whose rules and regulations limited him much. Once he went into a semi-private practice it was a whole new world of what he could do and we were all happy.

My Daughter's current NYC Mt. Sinai GI is also an Immunologist, Researcher and Educator which is why he is only in office 2 half days a week, but he has not let my Daughter down yet
when she needs him. They may not always see eye to eye but she loves and respects him.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/23/2010 7:28 AM (GMT -7)   
My GI doc (after he had screwed up and this is my 7th GI doc) will see me without an appointment (meaning I can just show up and he will see me). Returns my phone calls within 24 hours, and has given me his cell phone number (I have never used it but it is nice to have).
I see him about every two months, but I have never been completely out of a flare.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


emptynester2010
New Member


Date Joined Jul 2010
Total Posts : 17
   Posted 7/23/2010 5:20 PM (GMT -7)   
Navy- by any chance do you live in Virginia?  Your doc sounds like a dram cone true. 

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 7/24/2010 10:32 AM (GMT -7)   
I find it's the secretaries who make me feel like it's unreasonable to get in quick, when in fact, they should always make room when people are desperately ill.

But if the doc can't see him, then your son needs a back up plan. He should have an extra supply of prednisone, a diet plan, pain killers, etc. He needs to know when he should go to emerg. too. (usually if there's blood in the stool or an obstruction or he is unable to eat and is feeling very weak).

I see my doc anywhere from every 4-6 weeks when really sick, or 6 months when a little or mod. sick. I usually call and get phone advice and pick up a prescription when I'm desperate. If my doc can't see me, I go to a walk in and tell the on call doc what I need (prednisone or mouth steroid for oral crohns etc.) or I go to my family doc.

I can usually get some kind of immediate relief by eating a natural diet and taking probiotics and digestive enzymes, and drinking chamomile or decaf green tea with honey. Cutting out all process food, sugar, wheat and dairy are often very helpful for lots of crohnies who are flaring badly.

Post Edited (Roni) : 7/24/2010 11:36:07 AM (GMT-6)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/24/2010 12:21 PM (GMT -7)   
No, he is at the VA hospital in KC, but after screwing up and treating me poorly for 2 years, I think he feels morally obligated to go the distance for me.  Plus he knows that I would never abuse the fact that I have his cell phone number, because I would think it is bad manners to call him on anything short of an obstruction (for me I have so much education that I am really speaking with an equal, and he knows that).  When he finally done the 18 foot endocscopy he found what he calls the worse disease he has ever seen in his practice, but the this is a guy who is my age, so not very old for a doc.  He has also refered me to doc at KU Med (a Mayo clinic guy, who has also spoken with some of the doc's up at mayo about me) with more experience then he has with with some of the new meds.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 7/24/2010 1:26:18 PM (GMT-6)


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 7/25/2010 1:30 AM (GMT -7)   
 
Haven't really put son's consultant to the 'test' regarding this yet  (he sees him every other month currently) however he has given us the names and numbers of all the gastroenterologists at the hospital (in case he is away) also have the number for the IBD nurse specialist should the need arise.
He has said that no-one should be in pain and that they would fit him in if he was.

emptynester2010
New Member


Date Joined Jul 2010
Total Posts : 17
   Posted 7/25/2010 4:05 PM (GMT -7)   
My son has a Dr. visit tomorrow morning. I am keeping my fingers crossed that the Dr will present some kind of plan for getting my son off of prednizone and getting him into remission. If not- time to try a new doc.
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