- Joined
- May 10, 2014
- Messages
- 1
Hi Everyone,
I'm hoping to hear some experiences about switching GI specialists and have a few questions for you guys. My reasoning for switching is that I feel that my specialist isn't really concerned about my well being and hasn't seen me enough. I haven't seen her since my initial consult & then briefly after my colonoscopy where she diagnosed me and started me on the drugs (Beginning of February). I don't know what is typical in these scenarios, but considering all of the **** that I've been going through (I know I probably have it easy compared to some of you but bear with me I'm still relatively new to CD).
Now to be totally fair, my GI doc has a wonderful nurse practitioner who I am on a first name basis with, but I would really like to see the doc more involved. Maybe I'm being unreasonable?
How does one go about switching specialists? Do you ask for a new referral via your GP / primary care physcian?
In a hospital/research setting, if I am unhappy with one of the GI specialists, what are the odds of me getting a different one at the same hospital? (The hospital is close to me and a major IBD research centre in Canada, so those are big +'s).
Some history for you guys (for context):
Before seeing the doc I had made dietary changes (FODMAP) and done a course of metronidazole (family doc thought I had an infection, I very well could have) it seemed to help, was feeling quite good going into the colonoscopy and thought I couldn't possibly have Crohns.
Initial consult start of Feb before colonoscopy.
Diagnosed near beginning of Feb.
Conoloscopy followup appointment the doc recommends starting me on prednisone, imuran, humira, and refers me to dietician.
I start all of the drugs after a bunch of blood and stool testing and start feeling way better.
Start getting chills/fever/shaking from the prednisone. Speak with nurse practitioner about it, tells me it's normal and that if my fever doesn't improve to call back. It does, and the chills/shaking go away.
Start getting severe joint pain, talk to nurse practitioner, I'm instructed to stop my Imuran to see if it improves, it does. They get me to take Imuran for a couple days and see if it happens again. It does, worse, so I'm taken off the Imuran.
Finish prednisone taper, feeling great, goes downhill a few days later very suddenly after I ate a bunch of popcorn. I talk to the nurse practitioner and read on here that apparently popcorn is bad.
A week after the popcorn incident I'm still not feeling good. Talk to nurse practitioner. She orders stool and blood work.
My family doctor calls me out of the blue and demands he see me this afternoon. I go in concerned and he tells me I have a c. diff. infection. Prescribes metronidazole. I confirm with the nurse practitioner and she said metronidazole is typical, but that usually they use vancomycin. Didn't hear from GI doc at all.
I start on the metronidazole and start feeling nauseous. I puke a few times, saturday afternoon I start puking and can't stop. End up in the hospital dehydrated and unable to stop wretching. Emergency room nurse pumps me full of fluid and doses me with Zofran, no effect. Thankfully Maxeran stops the puking.
They keep me in the hospital for two more days, start me on liquid vancomycin and continue pumping me up with fluids. They give me a flexible sigmoidoscopy to check for complications from the c. diff. They find a healthy colon as far as the sigmoidoscopy can see (most of my ulceration was transverse colon and TI). The on-call gastroenterologist sees me and tells me they are going to keep me until I can prove I can keep down liquids and solids for a significant amount of time and sends a letter to my specialist. I'm released the next Monday afternoon and told to complete 10 days of vancomycin.
I call the nurse practitioner to ask a question about something and I fill her in with what happened over the weekend. This is mid/near end of week. Still haven't heard from GI doc.
I get brave and go to work on Friday, bad idea, I'm a mess/idiot etc. whatever
I take some more time off and rest, and limp through till the vanco is done.
Feeling better near the end of the vanco, though my body is a mess and I've lost even more weight. I'm about 145 now. (6 feet tall, this time last year I was 190).
My symptoms start getting worse again and I'm worried I have a recurrent infection. Talk to nurse practitioner, she orders tests, I test negative for c. diff earlier this week. Feeling better now pain/cramping wise, but my diarrhea is way worse for some reason, was running a fever all Thursday night after taking my Humira and called the nurse practitioner on Friday. My fever broke but she said she would run it by the GI so hopefully I hear something on Monday. I still have the bad diarrhea.
The final irritating straw that lead me to this post: The scheduling assistant calls me, tells me that my followup that was booked after I started my med at beginning of Feb needs to be rescheduled because the doctor won't be in that day. So that gets pushed back a week.
Tell me, am I right to be concerned about my care? I mean the nurse practitioner is awesome but I haven't heard a peep directly from my GI since I was diagnosed. I know it's only been a few months but it has felt like an eternity.
Sorry for the wall of text.
TL;DR: Last time I saw my specialist was when I started treatment, since then drug side effects, adverse reactions, c. diff. infection resulting in hospitalization etc. and I still haven't heard directly from my GI doc. Only the nurse practitioner.
I'm hoping to hear some experiences about switching GI specialists and have a few questions for you guys. My reasoning for switching is that I feel that my specialist isn't really concerned about my well being and hasn't seen me enough. I haven't seen her since my initial consult & then briefly after my colonoscopy where she diagnosed me and started me on the drugs (Beginning of February). I don't know what is typical in these scenarios, but considering all of the **** that I've been going through (I know I probably have it easy compared to some of you but bear with me I'm still relatively new to CD).
Now to be totally fair, my GI doc has a wonderful nurse practitioner who I am on a first name basis with, but I would really like to see the doc more involved. Maybe I'm being unreasonable?
How does one go about switching specialists? Do you ask for a new referral via your GP / primary care physcian?
In a hospital/research setting, if I am unhappy with one of the GI specialists, what are the odds of me getting a different one at the same hospital? (The hospital is close to me and a major IBD research centre in Canada, so those are big +'s).
Some history for you guys (for context):
Before seeing the doc I had made dietary changes (FODMAP) and done a course of metronidazole (family doc thought I had an infection, I very well could have) it seemed to help, was feeling quite good going into the colonoscopy and thought I couldn't possibly have Crohns.
Initial consult start of Feb before colonoscopy.
Diagnosed near beginning of Feb.
Conoloscopy followup appointment the doc recommends starting me on prednisone, imuran, humira, and refers me to dietician.
I start all of the drugs after a bunch of blood and stool testing and start feeling way better.
Start getting chills/fever/shaking from the prednisone. Speak with nurse practitioner about it, tells me it's normal and that if my fever doesn't improve to call back. It does, and the chills/shaking go away.
Start getting severe joint pain, talk to nurse practitioner, I'm instructed to stop my Imuran to see if it improves, it does. They get me to take Imuran for a couple days and see if it happens again. It does, worse, so I'm taken off the Imuran.
Finish prednisone taper, feeling great, goes downhill a few days later very suddenly after I ate a bunch of popcorn. I talk to the nurse practitioner and read on here that apparently popcorn is bad.
A week after the popcorn incident I'm still not feeling good. Talk to nurse practitioner. She orders stool and blood work.
My family doctor calls me out of the blue and demands he see me this afternoon. I go in concerned and he tells me I have a c. diff. infection. Prescribes metronidazole. I confirm with the nurse practitioner and she said metronidazole is typical, but that usually they use vancomycin. Didn't hear from GI doc at all.
I start on the metronidazole and start feeling nauseous. I puke a few times, saturday afternoon I start puking and can't stop. End up in the hospital dehydrated and unable to stop wretching. Emergency room nurse pumps me full of fluid and doses me with Zofran, no effect. Thankfully Maxeran stops the puking.
They keep me in the hospital for two more days, start me on liquid vancomycin and continue pumping me up with fluids. They give me a flexible sigmoidoscopy to check for complications from the c. diff. They find a healthy colon as far as the sigmoidoscopy can see (most of my ulceration was transverse colon and TI). The on-call gastroenterologist sees me and tells me they are going to keep me until I can prove I can keep down liquids and solids for a significant amount of time and sends a letter to my specialist. I'm released the next Monday afternoon and told to complete 10 days of vancomycin.
I call the nurse practitioner to ask a question about something and I fill her in with what happened over the weekend. This is mid/near end of week. Still haven't heard from GI doc.
I get brave and go to work on Friday, bad idea, I'm a mess/idiot etc. whatever
I take some more time off and rest, and limp through till the vanco is done.Feeling better near the end of the vanco, though my body is a mess and I've lost even more weight. I'm about 145 now. (6 feet tall, this time last year I was 190).
My symptoms start getting worse again and I'm worried I have a recurrent infection. Talk to nurse practitioner, she orders tests, I test negative for c. diff earlier this week. Feeling better now pain/cramping wise, but my diarrhea is way worse for some reason, was running a fever all Thursday night after taking my Humira and called the nurse practitioner on Friday. My fever broke but she said she would run it by the GI so hopefully I hear something on Monday. I still have the bad diarrhea.
The final irritating straw that lead me to this post: The scheduling assistant calls me, tells me that my followup that was booked after I started my med at beginning of Feb needs to be rescheduled because the doctor won't be in that day. So that gets pushed back a week.
Tell me, am I right to be concerned about my care? I mean the nurse practitioner is awesome but I haven't heard a peep directly from my GI since I was diagnosed. I know it's only been a few months but it has felt like an eternity.
Sorry for the wall of text.
TL;DR: Last time I saw my specialist was when I started treatment, since then drug side effects, adverse reactions, c. diff. infection resulting in hospitalization etc. and I still haven't heard directly from my GI doc. Only the nurse practitioner.
