Frustrated

I am an RN and have worked in healthcare for many years. I also have had severe Crohn’s disease for many years. I have become increasingly frustrated with GI doctors. They don’t make referrals, they don’t treat pain, they don’t treat infections, they don’t treat anxiety or depression, etc. They order labs and CT scans. They do upper and lower endoscopy. That is it.

A friend of mine, who is a nurse practitioner in a big city, recently told me, “I can’t find a GI doctor, I can refer my patients to, that gives a sh*t about patient care.”

Rheumatologists, dermatologists, and other specialties that treat autoimmune diseases make referrals, treat pain, treat infections, anxiety, and depression. This is unacceptable and needs to change. There are many, many extraintestinal manifestations of Crohn’s disease that GI doctors totally ignore. I would like to hear other opinions on this. The survey on this site shows over 50% had pain above 6/10. That is unacceptable and very debilitating.

Please at least bring it up to your GI doc, maybe we can push for better care.

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Comments

View Comments (9)
  • Sickforever
    9 months ago

    I am so sorry to hear this! I pray somehow you can get the treatment you DESERVE! Best of wishes.

  • tanyag
    1 year ago

    Sorry to hear you are having such poor care. I hope that in a near future you get better options for care. My specialist does not treat the whole patient either I find they tend to stick to treating the Crohn’s. Occasionally if I can convince them they will prescribe something. My pain is chronic is a 5/6 but it is not all Crohn’s I suffer from chronic migraines and may have hidradentinitis suppuritiva. Best wishes

  • Sickforever
    1 year ago

    Frustrated isn’t a strong enough word for me. My GI doctor is useless to me ! I can honestly say my primary care doctor helps me more the my so called specialist. I also am not ashamed to say I see another specialist for my depression and anxiety because my GI doctor doesn’t believe that having depression or anxiety has anything to do with my Crohns disease ! I currently am looking for a new GI doctor but have yet to find not associated with the other’s I have already been to !!!!

  • Gram214
    1 year ago

    I certainly agree that GI doctors don’t give a “Rats Pa Tutti ” about treating anything but your digestive system. I have extra intestinal manifestations since forever…
    Only problem is I’m beginning to think all my Dr.s are like cardboard cut outs anymore. Can anybody tell I’m beyond frustrated right now ? Anyone experience sitting in the room with a Dr. and he barely makes eye contact ..just types on his keyboard. GI..and all the rest included.
    I’m a month overdue for my Remicade…can’t find anymore funding for the rest of the year . Now my new primary care Dr .says he has decided he will not prescribe any of my pain drugs after this month ? I am just about ready to throw in the towel. I’m 66 years old for Gods Sake ! I can’t take it !

  • Sickforever
    9 months ago

    I am so sorry to hear this! I pray somehow you can get the treatment you DESERVE! Best of wishes.

  • Sickforever
    1 year ago

    Gram214 I am really sorry your going through the same thing as me ! I can only hope you can find a good primary care doctor for your pain meds. With all these new federal regulations on pain medications they make us all feel like we are drug abusers ! Every GI doctor I’ve been to WILL NOT prescribe pain medications !!!! I think that is ridiculous !

  • Gram214
    10 months ago

    Hi! I’ve been sort of ” out of the loop ” for awhile. I’m back to say I have made a little progress. First of all..I no longer need to beg for funding for my biologic drug. I changed Medicare plans and now I’m good ! Tell me why in all the years of going through what I did..somebody couldn’t have told me about having the wrong type of plan ?
    Also..my primary who no longer will prescribe opioids referred me to a ” pain management specialist ” who is very willing to keep me on my current regimen . There is one drawback however. I must travel about an hour further just to see him. I guess to most people this doesn’t seem like a big deal but I can’t drive and my husband shouldn’t ! Sigh….

  • SusanHU moderator
    1 year ago

    That is incredibly frustrating Gram214 – I’m sorry you’re dealing with that. I had a couple of thoughts/questions if you don’t mind. 1. Trying to find new doctors can be time consuming and exhausting but sometimes it can be helpful. Is that an option where you are? 2. Have you discussed your frustration with your doctors (or even the nurses!)? Again it’s really difficult but they may not even understand the affect they’re having. :/

    In the meantime, we’re here for you and we completely understand by you are beyond frustrated!

    Keep us posted! You could also post about this in forums or our Q&A – perhaps other community members will have advice. =)

    Susan (InflammatoryBowelDisease.net Team Member)

  • Meagan Heidelberg moderator
    1 year ago

    Hi GJeanne.
    Thank you so much for sharing with us! We are so sorry to hear that the GI doctors are not treating as they should be. This is definitely something that should be looked into. Pushing for better care is as equally important as being your own advocate! Would love to see an improvement!

    Best – Meagan, InflammatoryBowelDisease.net Team Member

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