Primary Physician treating Crohn's?

[Keralin]

My ex-GI doctor left me high and dry during a period of remission - he didn't think I needed to be on anything to prevent relapse, but here I am two months later amidst a pretty yucky flare.

I am new to the area and have so far only seen my Primary care/internist doc, but she had me start prednisone and protonix right away, rather than wait for a GI consult (I'm still being referred to GI). If my pain gets worse, I'm to go directly to the ER. Apparently I'm at high risk for an obstruction based on the amount of inflammation shown on the CT.

She seems to be as knowledgeable about IBD as my jerkface gut doctor. With any luck, the gut peeps up here are a whole lot better than they were in SC. I'm thinking of sticking with her, and just going to GI for scopes, since that's all they ever seem good for anyhow. "Got a hangnail? Let's look at your colon!".

Does anyone else manage their Crohn's or UC through their primary physician, rather than their GI doctor?

 

[Lam123]

In the beginning I did. I had a family dr that was excellent and knew quite a bit about crohns. So I felt comfortable allowing him to manage it. Then my current GI opened an office in my area and my family dr highly recommended him, so I transferred over to him. Since then my family dr retired, my new family dr could not manage the crohns, he's a new dr and knows nothing about crohns and the meds. I went to him once with joint pain and he told me to take aspirin for a few days! Since then I only go to him for issues other then crohns.

 

[Wildanimalpark]

Our internist is excellent and I find her to be very helpful for quick response to a new issue. She has ordered IV hydration IV steroids, pain meds, etc when my daughter is vomiting and diarrhea for several days. We could not manage without her. She has also ordered liver toxicity test when she was so sick with the 6MP and provides refills for Zofran.

She has never ventured into the actual Crohn's meds but we are still seeing our GI for the main management of Crohn's

PS: Where were you in SC?

 

[Keralin]

Good to know. I don't think many would prescribe outside of the mickey mouse drugs used to treat it, and pred is a pretty universal drug used for a bunch of stuff. Hopefully that's all it will take. I have some decisions to make as to where I'd like to receive specialty care. I have 3 referrals: gi, nephrology, and endocrinology. I can stay within the military treatment network, or I can drive the hour to Johns Hopkins and have everything done there. All I REALLY want to do it sleep. Ha.

Wild: I was in the Columbia area, and I went to the MUSC digestive disease clinic periodically. I had a less than desireable experience with my specialist there (not going to name any names), and thus I wouldn't recommend them. I don't enjoy being treated like I'm a cretin. Maybe I'm overly sensitive, but being called a 'layperson' seems sort of derogatory to me. That was also their overall attitude. Perhaps I'm in the minority and other people have had better luck. Just figured I'd throw that out there..

How old is your daughter? It's possible that the pediatric GI doctors are much more amiable, and easier to work with.

 

[Wildanimalpark]

We were referred to MUSC and also had a terrible experience. HE did not review her latest test results or anything in her records and said he wanted to do a single balloon endoscopy. I asked what he based that on and he said her past CT and I asked if had viewed her latest pill cam results or knew that she had two resections since that CT....... " well it will give him a chance to see how everything looks!" We made the appoint for this to be done in three weeks while I drove four hours home no better off than when we left home. I started reading about the SBE and saw that the proficiency rating starts at apx. 150 scopes. He has done five. I called and cancelled the appointment. Four days later my daughters temp went to 103.5 and her blood pressure dropped. I drove to Atlanta Scottish Rite to avoid being stuck in the same care rut we had been in for seven months. She was admitted to PICU with plummeting blood pressure and heart rate. She was treated for sepsis and on day four with c-diff. Greenville Hospital doctors never tested her for c-diff but when you look at the 8 high risk causes for c-diff my daughter met five of the eight. She probably had c-diff since her last surgery and 26 day hospital stay. After 10 days we came home still on Flagyl to treat the c-diff when the nurse from MUSC called to see if we would be down for the SBE on Tuesday...... I said I had cancelled the appointment and she said that was in the records but that my GI was down there and he wanted to do the SBE with Dr.Q. I said she just got out of PICU and she has C-diff and her GI knows this as he had to fax her TPN formula. The nurse said she could not even be seen at MUSC until she had two negative samples for c-diff.

I wonder who the great doctors were looking out for.. my daughter our adding another notch to the SBE proficiency ladder. We have a new GI.

 

[KMod]

Keralin- I rely on my primary care doc as my GI is about 3 hours away. I live in very rural southeastern Colorado so my option are limited. My GI handles Crohn's specific meds (remicade and now Humira) but not much else. My primary care doc does all my bloodwork/labs and prescribes my anti-nausea/pain/anti-diarrhea meds as needed. I know that both doctors are in touch with one another about my case and communicate on a regular basis about all my prescriptions, tests, etc. It seems to be working out quite well. I used to live in Connecticut where I was being treated just by a GI but since moving here I almost feel that my care is better. Two heads are always better than one!

 

[Keralin]

Holy smokes, that's awful! They're quite proud of the fact that they're #1 in South Carolina, but hey, look at the competition .

When they (musc) told me they wanted to do an SBE on me, I ran directly to my GI doc in Columbia. It freaked me out. I didn't think I could trust them, because being 85 pounds, I didn't think I could handle another prep. I basically begged that they do another pillcam instead because it's less hard on my various bodily functions. "but we need biopsies.". Sure you do...

My GI doc, of course agreed with them, because he seems to be somewhat of an MUSC fanboy.

I have ckd now, and I can't help but wonder if it's the result of having so many scopes done when I may have been to ill to undergo them safely.

It is a teaching hospital, so maybe they just like to use patients as chalkboards, hence the excessive and somewhat risky procedures they do.

Anyhow, I'm sorry you all had to go through that. I can definitely empathize. Hopefully other people considering them for tertiary care will see this stuff and do a little risk management and make sure it's worth it.

 

[Keralin]

KMod- I totally agree! It's nice when doctors take the initiative to communicate with one another regarding patients.

My old primary doctor and GI doc didn't get along at all. GI told me I should fire my PCP, and vise versa. They were like a crotchety old married couple.
"Why did he do ___?", "why isn't she ___?" "tell him he needs to ___!!" "tell her to refer you to ___", "Does she even care??" "I don't understand him."

And of course, when I relayed messages between the two of them, nothing ever got done because what I said was never taken as fact. I'm the patient, therefore a dummy. A 5 minute phone call is all it would have taken. I was too exhausted from dealing with my own crap to babysit my healthcare providers, so I guess I should have been more responsible, fired them both, and started over fresh. Lesson learned.

I didn't think I would have to find doctors who had compatible personalities, so you make a good point.