Anybody with a doctor that actually HAS Crohns?

[Naps22]

Does anybody have a doctor that actually HAS crohns? Someone who has actually been through the pain and suffering and has real hands on experience with how to take on this miserable disease? I just feel that I could trust a doctor that actually has Crohns more than a doctor who didn't. Because sometimes I wonder if these doctors are really giving us the best advice by telling us to do risky surgeries and to go on certain drugs that aren't even tested for long term side effects.

 

[JillianB82]

My does not, but he really seems to be understanding of my pain/symptoms & is always having me try new things till we get it right

 

[crohnsappleadams]

There probably aren't a lot of doctors with Crohn's disease to be found. The rigors of medical school or performing surgery don't pair well with stress-induced diarrhea and crippling pain. You won't find a lot of pilots with IBD either for the same reason.

If you have a specific doctor that you don't trust, go with your gut (pun intended) and find a different one. Give your doctors a chance though. The overwhelming majority of them are pretty good at what they do.

 

[kello82]

i used to!
when i was in peds and went to the childrens hospy of philly my GI had crohns as well and even was on humira himself when he prescribed it to me.
hes one of the top childrens GI's...really really great guy.

 

[D Bergy]

I think my Doctor near Chicago that prescribed my initial prescription for Low Dose Naltrexone had Crohn's. I never asked him, but someone else told me he did.

Dan

 

[cheeky]

haven't had a doctor who suffers from crohn's but my ophthalmologist told me that his wife has crohn's (and he's super great).... also, when i first went to the hospital for my eyes, one of the doctor's doing my eye check up said her brother has crohn's.

 

[xX_LittleMissValentine_Xx]

I dont know if mine has crohn's but he has something. After my colonoscopy he spoke to me and said he had one once. Mind you, that might not meen he has anything. Well he had a colonoscopy, that much is fact!
He doesnt have a very good bedside mannor, I dnt know what that tells you.
xXxXx

 

[Sparky]

Don't think mine has chrohn's, but he's fab. Seeing him for the first time in ages next week, and I know he will be lovely, and easy to talk to, and understanding - he's enormously respectful of the pain that CD patients deal with daily.

Last time I saw him, I had a friend's baby with me (she was all of 3 weeks old). We did my appt whilst I fed the munchkin, and I remember thinking how very easy/relaxed it all was. We were discussing my colonoscopy (without sedation), and he was just lovely - in awe of me having the procedure without drugs (because I'm petrified of having a cannula in my hand!), and I felt very confident that he knew exactly what sort of pain CD patients deal with.

 

[ThatGuy2006]

My doctor does, as well as his two sons. He had to actually take a year away from med school in order to get it in check

 

[daisy_dueller]

My regular family doc has a severe case of IBS...that's about as close as it comes...sometimes he talks about it like he knows exactly what I'm going through...I'm like...not so much dude.

 

[bwightman]

There probably aren't a lot of doctors with Crohn's disease to be found. The rigors of medical school or performing surgery don't pair well with stress-induced diarrhea and crippling pain. You won't find a lot of pilots with IBD either for the same reason.

If you have a specific doctor that you don't trust, go with your gut (pun intended) and find a different one. Give your doctors a chance though. The overwhelming majority of them are pretty good at what they do.

Funny that you mention pilots...my dad is a retired airline pilot who has Crohn's. It went undiagnosed/misdiagnosed until he was 42, but he managed to work through all the pain and diarrhea until he was diagnosed and treated properly. He finally went on disability after 27 years of flying when they finally had to switch his meds to something that wasn't FAA approved.

Actually, how he managed to go to work every week in the state he was in while I was growing up is a major inspiration to me. I figure if he could go fly planes during a flare-up (or even in general), I can certainly go to work and sit behind a desk for 8 hours! He had a resection in 2002 and is now the healthiest he's been probably since he was a teenager.

 

[crohnsappleadams]

Funny that you mention pilots...my dad is a retired airline pilot who has Crohn's. It went undiagnosed/misdiagnosed until he was 42, but he managed to work through all the pain and diarrhea until he was diagnosed and treated properly. He finally went on disability after 27 years of flying when they finally had to switch his meds to something that wasn't FAA approved.

Actually, how he managed to go to work every week in the state he was in while I was growing up is a major inspiration to me. I figure if he could go fly planes during a flare-up (or even in general), I can certainly go to work and sit behind a desk for 8 hours! He had a resection in 2002 and is now the healthiest he's been probably since he was a teenager.

That's pretty awesome. I assume he had an understanding copilot. I can't see any other way that would work.

 

[bwightman]

Airline crews basically change on a monthly schedule. That being said, there were copilots he worked with regularly, since they bid on the same schedules, but the schedules and crews generally change every month.

I think he just developed a really high tolerance to pain. Since my diagnosis, we've chatted a lot about dealing with symptoms, and he's always told me that he just did his best to ignore the pain and symptoms and get on with his day. I have no idea how he managed to do it, but I guess when you've got a family to take care of, you just do what you have to do. Like I said, major inspiration!

 

[cheeky]

yeah your dad is awesome.

 

[crohnsappleadams]

I can usually pull off a long roadtrip (12+ hours) without more than one stop, provided I stay very hydrated and pinch a quality loaf right before I set out. Still, with a car there are more options than there are with a plane.

 

[kello82]

*sigh*
i used to be able to stick out the pain of holding in poo for quite a long time.
then, my butt muscles started failing me. at that point it doesnt matter what your pain tolerance is...your body decides for you just how long you will last.
when you get in under the 10 second range, then its some serious problem.

 

[sra2]

I was actually wondering this myself...I'm just about to start my first year as a junior doctor....anyone else have any tips? FY1 is hard enough without crohn's!

 

[shazamataz]

I was actually wondering this myself...I'm just about to start my first year as a junior doctor....anyone else have any tips? FY1 is hard enough without crohn's!

You really ought to specialise in gastro!

I wonder too how people manage to work full time in demanding positions with this!

While i don't have any major Cd problems at present i have had fatigue for years and it has certainly, I feel, seriously limited my potential career-wise, and I am certainly nowhere near where I thought I would be at my age.

Some people do seem to have an amazing strength of character though and can do perhaps even more than regular folk because of sheer determination - I seem to have missed out on that gene!

My GI does not have Crohns and really seems to have no idea, however he did say he's had a colonoscopy as part of his training!

 

[Peggy]

My gp dose not haVe crohns but as both myself snd my husband have it, They all say you two will make us rich one day. I must say that nither of us had it when we married 37 years ago, But at least we understand eavh other when things are not so good. Peggy

 

[bella_sky]

OH how awesome it would be to have a doc that has Crohns and understands all of this!!

 

[Guest1]

This whole thread makes me sad not because you guys are wishing for a doc with first hand knowledge but because we are apparently hugely lacking in GI docs with much sympathy. Family practice docs seem to me to have much better bedside manner. Seems like something happens to the specialists. Either they are cold and aloof, just plain mean, or at best they give the appearance of trying to understand but either don't want to take the time to really listen or just can no longer get down on the patient level. There are a few out there like Shantel's doc but not enough. Has anyone seen that movie about this with William Hurt as the doc? I think it was called The Doctor.

Agreed. I've gotten more sympathy with my son's pediatrician in casual talk than my GI who gets paid $300 for a 10 minute poking session.

 

[jooles6377]

I had a doctor that had Crohns and his best line was 'you are lucky your not as bad as some really serious cases and as bad as me at my worst' I have since seen a more symphathetic speacialist who helps me and my more mild symptoms. It has gotten worse now and he is helping me more than that clown.

 

[cheeky]

re: GI's with poor bedside manner, i've totally been there, but my new GI is awesome... except now that my new GI's office is in the hospital, it's a lot busier than the other GI

My gp dose not haVe crohns but as both myself snd my husband have it, They all say you two will make us rich one day. I must say that nither of us had it when we married 37 years ago, But at least we understand eavh other when things are not so good. Peggy

wow, that's so interesting that both of you didn't have the crohn's and coincidentally developed it later.

 

[Procyon]

I'm pre-med. So maybe I will be a doctor with Crohn's in the future, God willing my ability to put up with the stresses required to get there. =X

 

[ColorsofHeaven]

I am going to school to become a DR. and I have Crohns Disease. I am in remission and my Dr. had a brother who had Crohns Disease.

 

[ColorsofHeaven]

I had a doctor that had Crohns and his best line was 'you are lucky your not as bad as some really serious cases and as bad as me at my worst' I have since seen a more symphathetic speacialist who helps me and my more mild symptoms. It has gotten worse now and he is helping me more than that clown.

Sorry, to hear that. That sounds terrible that a Dr. did that to you. I have had Dr's make fun of me before and others that didn't believe me either. I'm glad you found one that cares. Sometimes it just takes some shopping around to find a good Dr.

 

[joelsprechman]

Yes, Dr. Paul Capobianco D.O. has Crohn's Disease. He's a medical doctor and Professor of Osteopathic Medicine. He practices Integrative Medicine and know's a lot about Alternative treatments

 

[Ozboz]

I don't understand why but we pay big$$$$ to dr's and most of the time from what i read on this forum most GI doctors are either useless on their own agenda or don't care I have been to 3 myself and had bad experiences each time o e i had but h retired was amazing

 

[ronroush7]

My doctor doesn't have Crohns but his father does which makes him more understanding.

 

[hauermich]

i used to!
when i was in peds and went to the childrens hospy of philly my GI had crohns as well and even was on humira himself when he prescribed it to me.
hes one of the top childrens GI's...really really great guy.

I took my son to CHOP a few weeks ago for a second opinion and met a female ped GI who has Crohn's and is on Humira for 10 years. It made me feel a little better about possibly starting biologics if his current treatment fails. I loved her and the hospital but it's almost a 2 hour drive for us and she concurred with his current doctors plan so we are staying with his doctor for now.

 

[hauermich]

i used to!
when i was in peds and went to the childrens hospy of philly my GI had crohns as well and even was on humira himself when he prescribed it to me.
hes one of the top childrens GI's...really really great guy.

I took my son to CHOP a few weeks ago for a second opinion and met a female ped GI who has Crohn's and is on Humira for 10 years. It made me feel a little better about possibly starting biologics if his current treatment fails. I loved her and the hospital but it's almost a 2 hour drive for us and she concurred with his current doctors plan so we are staying with his doctor for now.


Sorry for the double post....I can edit but can't find how to delete

 

[dejavucandace]

haven't had a doctor who suffers from crohn's but my ophthalmologist told me that his wife has crohn's (and he's super great).... also, when i first went to the hospital for my eyes, one of the doctor's doing my eye check up said her brother has crohn's.

Sorry cheeky but just wondering what your eye symptoms were? As it seemed you were implying Crohns related. I did read that some Crohns patients have inflammation of the eyes. I feel like that could be what I have, especially since every other test I have had for the problems have come up empty.

 

[mere282]

I had a pcp with UC but I think her case was mild cause she was always asking me about my meds.
She came in to play with keeping on me to get a proper diagnosis