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Crohn's Disease Forum » General IBD Discussion » Does anyone else have lots of other illnesses?


03-18-2015, 06:57 AM   #1
cantthinkstr8t
 
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Does anyone else have lots of other illnesses?

I feel like I have become a collector of illnesses. Most doctors are relating it to my Crohn's.

I got a phone call from my regular doctor yesterday and a scan I had showed a strong possibility of thyroid cancer. I know there is a correlation between colon polyps(I have had them at every colonoscopy) and thyroid cancer but geesh.

I am tired of hearing I am young and have that going for me. I would rather be 5 years or even 10 years older and healthy. My husband always tells me, at least we are catching it early. I would rather not "catch" it at all.

I know have a doctor from almost every field out there. Sorry if this isn't appropriate on the forum, I just had to vent.
03-18-2015, 10:59 AM   #2
kikig
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i hear you. sometimes i just wish i could hire a project manager, dump the management and scheduling of appointments/follow ups on that person and not worry about it.

its even more difficult when doctors start to deal with you on a segment basis -

for example
doctor: i'm a shoulder doctor and you have a rash there, here is a cream
me: i have the same rash on my leg
doctor: legs aren't my speciality, you need a leg doctor
me: i'm not a specialist on any of it, but all of these things are mine
doctor: <shrugs shoulders>

and then they look at you like you are crazy............
03-18-2015, 11:48 AM   #3
UnXmas
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I don't have a huge number of illnesses, but one of my illnesses affects just about every part of my body and causes every symptom imaginable (and probably some unimaginable ones), and I have a specialist doctor in every field.
03-18-2015, 04:44 PM   #4
cantthinkstr8t
 
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i hear you. sometimes i just wish i could hire a project manager, dump the management and scheduling of appointments/follow ups on that person and not worry about it.

its even more difficult when doctors start to deal with you on a segment basis -

for example
doctor: i'm a shoulder doctor and you have a rash there, here is a cream
me: i have the same rash on my leg
doctor: legs aren't my speciality, you need a leg doctor
me: i'm not a specialist on any of it, but all of these things are mine
doctor: <shrugs shoulders>

and then they look at you like you are crazy............

Same here! I went to a neuro today because I have nerve damage and my orthopedist called him. He said, "So, you have nerve damage, what do you expect me to do about it."

Really??
03-18-2015, 04:45 PM   #5
cantthinkstr8t
 
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I don't have a huge number of illnesses, but one of my illnesses affects just about every part of my body and causes every symptom imaginable (and probably some unimaginable ones), and I have a specialist doctor in every field.
I have one in every field also. It seems like it is never ending.
03-19-2015, 06:45 AM   #6
kikig
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Same here! I went to a neuro today because I have nerve damage and my orthopedist called him. He said, "So, you have nerve damage, what do you expect me to do about it."

Really??
Ugh, yeah, I know that attitude.

Sometimes I feel like I am just being passed around, cause I look too complicated, and that might involve reading my case history as well as accepting sort of responsibility

At this point, I don't waste my time if I think they are no good.

I once walked out of a thorasic surgeon appointment for this reason, and I refused to pay.
To be fair, he didn't try to make me pay, as I had barely sat in the seat for 2 mins
03-19-2015, 08:29 AM   #7
UnXmas
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At this point, I don't waste my time if I think they are no good.
That's exactly what I do - I'm not going to bother with a doctor I don't trust. But I'm also gradually collecting good doctors. I have a few doctors I've had for years and years. But I'm continually getting new problems - my illness is progressive, so every year I get a few new symptoms, and the symptoms I already have get gradually worse and worse - so I often need a new doctor from another field. But I learned a long time ago that trying to get help from a bad doctor just isn't worth it. So if I've seen three doctors already about one particular problem and none of them have been any good, I don't care, I'm sill not going to make do, I'm going to see a fourth doctor and hope this will be a good one. Luckily one of the good doctors I've been seeing for years is my GP, who handles referrals, and she understands and will keep doing referrals for me. She's not always happy about it, but she wants me to keep going for appointments and tests and everything else I need, and she knows the easiest way to make sure I do is to find me the right specialist rather than trying to make me go back and see one I didn't like.
03-19-2015, 11:31 AM   #8
2thFairy
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Same here! I went to a neuro today because I have nerve damage and my orthopedist called him. He said, "So, you have nerve damage, what do you expect me to do about it."

Really??
I really REALLY despise doctors who do that! Another doctor referred us to them, not that we just showed up and said "fix me!" AARRRGH!!!!!!

I've been through that too many times to count!
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03-19-2015, 02:45 PM   #9
violet222
 
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Agreed - keep doc shopping until you find one you really like.

But realize that no matter how hard you have it, it could always be worse. We live in a time and in a country where these conditions at least have treatments. It hasn't always been so.

Could our medical system be better? Yes. Should it be better? You bet. Am I still grateful to at least have what I do have? Very much so.
03-19-2015, 02:47 PM   #10
UnXmas
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But realize that no matter how hard you have it, it could always be worse. We live in a time and in a country where these conditions at least have treatments. It hasn't always been so.
A lot of conditions don't have treatments.
03-19-2015, 02:53 PM   #11
violet222
 
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This is a Crohn's forum. There are lots of treatments for it.

And there are lots of treatments for lots of diseases. Do all of them work? Of course not. (Me, I get weird allergic reactions with no apparent explanation.) But again, I'm grateful I live in a developed country and I have at least mediocre health insurance. Not everyone even in the US can say this.

If you'd rather look only on the negative side, that's your choice. For me, it doesn't help. I need to see the good and the bad to stay sane.
03-19-2015, 02:58 PM   #12
baistuff
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A lot of conditions don't have treatments.
Thank you for making this point. I completely agree that empathy and bedside manner are extremely important. However, I have lost count of the number of patients who seem to expect we can simply fix anything. If after multiple visits, asking the same question over and over again, still having unrealistic expectations- well, there is not much left to say.

Sometimes depending on the patient, brutal honesty can be mistaken for lack of caring. Again, bedside manner and empathy are just as important as clinical knowledge- but please keep expectations realistic. I'd much rather see a doc who is completely honest than a sweet doc who sugarcoats everything.

Many things, like nerve damage- don't have much that can be done about them.
03-19-2015, 03:11 PM   #13
UnXmas
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This is a Crohn's forum. There are lots of treatments for it.
This is a thread about other illnesses.
03-19-2015, 03:54 PM   #14
baistuff
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This is a Crohn's forum. There are lots of treatments for it.

And there are lots of treatments for lots of diseases. Do all of them work? Of course not. (Me, I get weird allergic reactions with no apparent explanation.) But again, I'm grateful I live in a developed country and I have at least mediocre health insurance. Not everyone even in the US can say this.

If you'd rather look only on the negative side, that's your choice. For me, it doesn't help. I need to see the good and the bad to stay sane.

This is not what the discussion was about at all. Crohn's and many other illnesses do have plenty of options. This discussion was about other illnesses and evolved into dropping doctors over perceived attitudes. Sometimes, yes, docs give terrible answers or at least are very unsympathetic- totally unacceptable.

Sometimes though there aren't good answers. It's not about being negative or positive. It's about being realistic and honest. Lying or even misleading patients IMHO is simply terrible.
03-19-2015, 04:32 PM   #15
lookame
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Right now my husband and I are down to one car so I have to rely on my mom to drive me to my appointments. my mom is now realizing how sick I really am and she hates that I am requiring so many appointments.

Currently I see a hemetologist, my GI, my PCP, an optometrist and while on Remicade I saw a a specialist for drug induced lupus. It sucks..
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03-19-2015, 05:04 PM   #16
lisadc1
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Yes, and they have all shown up together! EEK...diabetes, 20/20 vision to bifocals, thyroid issues with a mass getting ready to be measured again, kidney stones, polyps, pancreatits, of the course the stubborn crohns, and a partridge in a pear tree...
03-20-2015, 04:15 AM   #17
UnXmas
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This is not what the discussion was about at all. Crohn's and many other illnesses do have plenty of options. This discussion was about other illnesses and evolved into dropping doctors over perceived attitudes. Sometimes, yes, docs give terrible answers or at least are very unsympathetic- totally unacceptable.

Sometimes though there aren't good answers. It's not about being negative or positive. It's about being realistic and honest. Lying or even misleading patients IMHO is simply terrible.
I'm sorry if my comments appeared to be insulting all doctors. Personally, I haven't stopped seeing a doctor because of his/her attitude alone. My disagreements with doctors have been over diagnosis and treatment issues. One recurring one has been that doctors believe me to have anorexia because they don't believe my digestive problems can account for my weight loss. When I was a teenager, this went as far as me being admitted to a psychiatric hospital. I've also had doctors diagnose me with Munchausen's, and attribute my digestive symptoms to Irritable Bowel Syndrome. So now, if a doctor doesn't believe something I say, or suggests I have psychiatric problems when I've come to see him/her about a physical problem, I find another doctor before it goes any further. But only last year I was in hospital and a gastroenterologist was convinced my weight loss was deliberate, ignored it when I began having symptoms of a blockage, and I ended up with a perforated intestine. But I know I shouldn't generalise and suggest all doctors would treat patients similarly.

Last edited by UnXmas; 03-20-2015 at 05:33 AM.
03-20-2015, 04:27 AM   #18
UnXmas
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But just to add:

I went to a neuro today because I have nerve damage and my orthopedist called him. He said, "So, you have nerve damage, what do you expect me to do about it."
I really REALLY despise doctors who do that! Another doctor referred us to them, not that we just showed up and said "fix me!" AARRRGH!!!!!!

I've been through that too many times to count!
The kind of experience 2thFairy describes does, I think, justify patients being annoyed with their doctor. When you've maybe taken a day off work in order to attend the appointment, or driven a long way to get there, and then waited while the doctor runs an hour late, only for the doctor to tell you that of course they can't help you and seem surprised that you would come to see them for the purpose of being helped, it's annoying. If they know they can't help, why tell the patient they need to come to the appointment?

Btw, I didn't realise other people had this experience, I suppose because it doesn't happen with Crohn's as Crohn's symptoms are treatable, so it's not something usually described on this forum.

Last edited by UnXmas; 03-20-2015 at 05:35 AM.
03-20-2015, 05:48 AM   #19
UnXmas
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To try and being this thread back on topic: I see the following (though in some cases I've seen far more than one specialist from each field):

GP
Gastroenterologist
Dietician
Colorectal surgeon
General surgeon
Neurologist
Rheumatologist
Urologist
Gynaecologist
Endocrinologist
Physiotherapist

Plus last year I saw some pain management specialists and some kind of specialist in infections while in hospital, and I'm on a waiting list to see an occupational therapist who's supposed to come and put some extra equipment in my bathroom to stop me falling over in the shower.... or something. And of course I've seen quite a few psychiatrists.
03-20-2015, 06:36 AM   #20
cantthinkstr8t
 
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I may not like my GI's bedside manner, but I see him b/c I know he is one of the best in his field. He also appealed my insurance's denial of a med I need to take.

What I do not appreciate are other doctors that relate everything to Crohn's and say once I am "cured" from that, my other issues will go away.
03-20-2015, 09:38 AM   #21
baistuff
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I'm sorry if my comments appeared to be insulting all doctors. Personally, I haven't stopped seeing a doctor because of his/her attitude alone. My disagreements with doctors have been over diagnosis and treatment issues. One recurring one has been that doctors believe me to have anorexia because they don't believe my digestive problems can account for my weight loss. When I was a teenager, this went as far as me being admitted to a psychiatric hospital. I've also had doctors diagnose me with Munchausen's, and attribute my digestive symptoms to Irritable Bowel Syndrome. So now, if a doctor doesn't believe something I say, or suggests I have psychiatric problems when I've come to see him/her about a physical problem, I find another doctor before it goes any further. But only last year I was in hospital and a gastroenterologist was convinced my weight loss was deliberate, ignored it when I began having symptoms of a blockage, and I ended up with a perforated intestine. But I know I shouldn't generalise and suggest all doctors would treat patients similarly.
No need to apologize. You have been through the wringer and then some.


It bothers me to no end when docs dismiss, ignore or don't believe patients. Drop any doc like that like a hot potato. But that doesn't mean if a doc gives an answer a patient doesn't like, it does not always mean s/he is being dismissive condescending or uncaring. If a thorough workup and investigation is unrevealing, sometime it is indeed helpful to look at functional causes instead of organic. That is actually part of being thorough. Most of these issues boil down to communication- but we need to remember that communciation is a 2 way straight. Docs get dismissed and ignored by patients all the time.
03-20-2015, 11:39 AM   #22
my little penguin
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DS sees
Allergist
Rheumatologist
Opthamologist ( unrelated to crohns )
Neurologist
Nephrologist
Dermatologist
Gastrientrologist
And of course a Pediatrician

We gave up on fixing things years ago
Just try to get /stay at functioning levels
It takes time and the more doctors you get the harder to balance risks from med A that doc A wants against med B that doc B wants since A and B shouldn't be combined .

Good luck
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03-20-2015, 11:59 AM   #23
wildbill_52280
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yea people are just trying to cheer you up.

just learn more about health and nutrition and try to turn this around.

fecal transplants are just around the corner read about them in the link below and the great potential they have, there is hope.
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03-20-2015, 12:15 PM   #24
UnXmas
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yea people are just trying to cheer you up.

just learn more about health and nutrition and try to turn this around.

fecal transplants are just around the corner read about them in the link below and the great potential they have, there is hope.
Which post are you referring to and how are faecal transplants going to help? cantthinkstr8t started this thread about possible thyroid cancer. Nutrition and faecal transplants aren't going to do much good.
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