• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

What would you tell your doctor or nurse?

Hello Everyone!!! I haven't been on here in a very long time, and I have missed it! I am back and looking for your help. Soon, I will be giving a short talk to a group of health care professionals (mostly nurses but also some docs) about what it was like to be a patient and what it's like to live with crohn's. I work as a nurse and having to be on the other side of the bed as a sick patient was eye opening to me. What I wanna know is.......

What is it that you think is important for your health care professional to know about living with crohn's??

This doesn't have to be something medical or some sort of fact it could just be something from a patient's perspective that a person without crohns' or uc wouldnt know or understand????
 
Hi,

I would suggest that they need to keep an open mind about the patient's symptoms and experiences. Every patient is different. There is nothing worse than being told that a particular pain or symptom can't be due to the Crohn's or the treatment. The most experienced Doctors that I've met acknowledge that the patient's body is very good at telling them something is going on. The fact that it may not fit with their understanding does not mean to say that it's not real.


Mark
 
Great answer Mark. I think doctors tend to take a textbook approach to treating patients and that's what makes treating this disease so hard. Also, I think it's important for them to try and understand the mental impact this disease has on people. They need to try and put themselves in the patient's shoes. How would they handle it if these things were happening to them?
 
Tell them to be thorough in their testing. That is really all I can say. If my G.I. doc in 2005 had been thorough, i.e. did the upper G.I and a small bowel series, and got the colonoscope into my illeum. I may have not needed surgery last October. I would not have gone through 5 years of treatments for IBS when I should have been treated for Crohns.
 
I would also say be thorough and listen to the patient. We all know our own bodies and what is usual for us and what isn't . Run tests, lots of tests, until there is a positive diagnosis. Give information and allay any fears - when I was diagnosed I was given no information whatsoever, just told I had Crohns and here's some meds, pretty much that was all.
 

Astra

Moderator
I feel strongly about the mental side too, I was fobbed off with IBS for many years, and the thing that was so distressing and frustrating, was the notion that I was neurotic, depressed, mental and it was all in my head! Also, I was attention seeking, paranoid and it was psychosomatic, I made these things up! Also, that I had to be positive.
I've absolutely hated that bloody word ever since!
It wasn't just the GP, it was the practice nurse and even the receptionists started having a pop! I've actually read my medical notes, I was appalled at some of the rubbish that they had wrote way back then. They also handed out tranquilizers like they were Smarties! So glad that that has been kicked into touch.
Eventually I got a new sympathetic GP who referred me to gastro, the rest is history.
 
Hi,

I would suggest that they need to keep an open mind about the patient's symptoms and experiences. Every patient is different. There is nothing worse than being told that a particular pain or symptom can't be due to the Crohn's or the treatment. The most experienced Doctors that I've met acknowledge that the patient's body is very good at telling them something is going on. The fact that it may not fit with their understanding does not mean to say that it's not real.


Mark
Spot on Mark

I always felt with 99% of Dr's they were going by a 'check list' of CD symptoms.I only ever met one consultant who struck me as really open minded & tried to look at the whole picture.
He was the Dr who told me what the rashes on my legs were (erythema nodosum).He told me 15-20% of CD patients got that due to CD.He was so interested in it he asked my permission for the hospital to take photos of it,which i was happy to agree to.I had those rashes for 20 years.The only time they nearly went back then was when i was in hospital on steroids for a lengthy spell under his care.
The other symptom he talked to me about was the severe pitting of my thumb nails.He told me this was due to iron defiency anemia.
CD can give patients various external manifestations,which in my experience, very few Dr's understand.
I too have read all my medical notes from the last 21 years(cost £50),i found it very narrow minded.When i read the post op report from my right side hemi 13 years ago i thank god everyday i'm still here as i was in very serious trouble with perferation in my bowel
 
I would tell them to be open minded about non pharmaceutical treatments. Even as simple as probiotics or vitamin D. I read on here a lot that doctors, and mine is one of them, that don't believe in this kind of treatment, and that it is just a waste of money, dispite all the evidence of positive results.
 
I would tell them to be open minded about non pharmaceutical treatments. Even as simple as probiotics or vitamin D. I read on here a lot that doctors, and mine is one of them, that don't believe in this kind of treatment, and that it is just a waste of money, dispite all the evidence of positive results.
Fog Ducker

I agree 1000% with your post
 
What is it that you think is important for your health care professional to know about living with crohn's??
About all the people who don't require the Dr's pills or treatment and get on just fine, and the HUGE impact diet and lifestyle has on the disease, both on provoking it and preventing it.
 
Agreed with the diet and supplements aspect of treating the disease. While I love my GI, the only thing he contributed to my diet plan was to stay away from things with skins and seeds. I learned most of what I know about food from this forum. Not to mention it seems most doctors don't know how diet might even be different for a person with strictures than for someone without strictures.

So, perhaps having a list of support groups patients can look into. SO many people feel they have to deal with this alone (whether they truly are or not), and having a support group is important.

I think doctors should have established relationships with nutritionists that are familiar enough with Crohn's to help patients stick to a healthy, balanced diet that is specific to the type of disease they have. Nothing is more frustrating than feeling like you are restricted to only a handful of foods because you haven't been educated on things like how much fiber is "low fiber," how to remove the insoluble fiber from foods so you can still eat them safely (ie food preparation alternatives), the importance of vitamins, etc. etc.!

I guess doctors need to be more helpful in the things that effect our daily lives outside of medicine. Great, we have medication that's treating our disease, but sometimes we need to learn how to live again albeit in different ways. :) Holisitic, if you will.
 

ameslouise

Moderator
I would tell my doctors that living with Crohn's hits many aspects of your life. Like Marisa said above, have a relationship with a nutritionist you can refer your patients to, and also have a relationship with some mental health professionals you can refer your patients to. The unpredictability of the disease can wreak havoc on your mental health!

- Amy
 
Well, I may be a bit late for your talk but....
I really hate when I go to the doc because I feel like crap and they say "But you look well". Then proceed to tell me that nothing can be too bad. Urggggg.
Michele
 
Top