• 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.

Anyone else go against their doctor's advice?

It makes me very uncomfortable to do so, but so far, I have, twice. When he wanted to put my son into remission by allowing him to eat 20% food with his Peptamen. But, I advised my son to stop food (thanks to you guys) for 6 weeks. I did it again, after the 6 weeks were over, when he advised that my son ONLY have 20% food and continue with Peptamen. Instead, we tapered off the Peptamen and now my son is only eating food. He's been eating about 3000 calories a day and some days, wants more but I want him to take it easy.

I'm still nervous everytime I hear him go into the bathroom, fearing the discomfort will start up again. Crohn's is like having a seriel tormenter in your home. It may not be hurting you right then, but it's always lurking. :(
 
Wel................that's a bit of a loaded question.:eek:

My first thought was when reading the title is.............No you shouldn't go against your Gi's advice.

My second thought was..................but sometimes you have to make decisions base on what you've learned/studied AND what you believe will work for your child.

This forum is great.
I love that we can come here a get a sneak peak into the lives and treatment of others with this disease.
What we have to remember is that it is JUST a sneak peak.
Gi's however (flawed they may appear) are for the most part, educated in this area.
I guess the real question is....what kind of relationship do you have with your GI?
Does he/she listen to your reason/concerns/studies?
Do YOU listen to his/her reasons and such?

If you find yourself going "against" the recommendations too many times
then it's time to find another GI that you can work with.
 
Disagreed and we went with my preferred treatment - yes. Son was on 1500 mgs/day Pentasa and after a year, though he was doing "well", his inflammation markers were barely above normal and he wasn't gaining the weight the doctor wanted. His doctor was recommending either 6mp or exclusive EN feeding.

However, my son has already been under the supervision of the Onocology Clinic as he has swollen lymph nodes all around his abdomen and near his liver - based on information received from parents here, I just didn't feel as if my son was so sick that it required the heavier drugs. I asked if we could raise his dose of Pentasa (as I had seen other folks with higher levels). She agreed - it went up to 3500 mgs/day - we are two years later and (touch wood) all is well...

Recently I was in the hospital (for me) and the doctor (cardiologist) treating me said, "We are going to give you this medicine and see how it goes. We don't call it a medical *practice* for nothing... We think this medicine is going to do the trick. If not, we will adjust it."

I thought long and hard about that statement - knowing it is true... but I have never thought of myself as a Parent in practice - know what I mean?
 

my little penguin

Moderator
Staff member
The key is you need to discuss your concerns with your Gi.
They can only treat effectively if they know what's going on .
That means if you don't agree then discuss what you want to do and why.
Above all make sure your Gi knows what you are doing BEFORE you do it.
That way they can counsel you on why that may or may not be a good idea.
Doing things blatantly against medical advice is never recommended.
There can be serious consequences which as a parent you may not be aware of .
It can also cause issues if the doc thinks the child is doing xyz and then tries to treat accordingly in an emergency when there may not be time to discuss what was really being done.

As others have said communication and trust are key
If you don't have those then you may want to find a second opinion.

( not a doc just a mom so please talk to your doc about ANY medical advice)
 
I wouldn't say I went against the GI's wishes, more like I delayed the treatment plan since everything was going well otherwise and the treatment he was wanting to use didn't guarantee to fix what was actually wrong. It took me around 6 months to finally get round to agreeing after much soul searching and research. I can almost see the GI roll his eyes as I put up yet another objection to his plans :smile:
 
Yes I've gone against my GI's advice, but to honest, for various reasons our relationship is deteriorating and trust is gone. I refused NG feeding because I viewed it as a temporary solution and when the tube was out the problem would return unless he could figure it out. He got quite snippy with me lol.
 

crohnsinct

Well-known member
Nope! Not because I haven't wanted to but more because the guilt if something went wrong would eat me alive. This way if I follow docs advice and something goes wrong at least I can blame him/her.:ytongue:

O.K. and yes all those other very practical reasons like they need to know what is going on so they can treat accordingly in the future and emergency decisions etc.

I do however second guess him and discuss and weigh in with my opinions and preferences. He listens and he has even gone with my preference on occasion and it has worked out. I even asked for certain blood tests to be run at infusion, they called doc and doc said give her what she wants. We have a good relationship. Time is too short to be farting around with a doc you don't trust, respect or have a good relationship with. I would try to talk to him and if you can't move to another doc.
 

Tesscorm

Moderator
Staff member
I'd fall into the same 'balance' camp... I don't blindly follow what the GI recommends and will question and question and suggest and then get his feedback but, at the end of the day, my knowledge is miniscule compared to his... If I think his opinion has a chance of being wrong, how much GREATER is the chance that I am the one who will be wrong?? I also do not have his practical knowledge (although, I do believe, sharing our experiences here does offer us a bit of 'practical' knowledge).

While I don't completely agree with the GIs opinion that we had NO option but to add remicade recently, I do completely understand his reasons for wanting to add it and his assessment of risk by not adding it made sense to me... so it was a coin flip... go with my opinion or his? I chose to bet on his reputation, knowledge and experience with some hope that God will lend a helping hand.

I also think the answer to the question 'go against GI?' must take into consideration your circumstances... extent of disease (ie severe inflammation throughout or mild patches in limited areas), do you trust your GI, what issues are you dealing with (past experiences with meds, etc.)...
 
Last edited:
I don't have any god and I've out diagnosed doctors before. One of my children came down with a very rare, very scary condition (but very curable) when he was 2. A couple years later, another of my children seemed to present the exact same symptoms, but when I mentioned it to the doctor, he told me I was totally wrong and it looked nothing like the same thing, in a very arrogant manner, but it turned out he was wrong and it was the same thing. My daughter, the nurse sees doctors make mistakes all the time and she told me some of the most confident ones are often the ones making the most mistakes. And because of lawsuits, doc's are often forced, not to do what they think is right, but what will save them from being sued.

I also know that no doctor is going to care as much, or be as focussed on my child as I am. So, unless it's something too technical for me to understand, I am more likely to go with my opinion over the doc's.

I've regretted not doing so, a few times, too. Like when my son got to the hospital, he was so malnourished and weak, I was surprised that they wanted to scope him so soon. Well, his heart rate fell super low during the procedure, scaring the docs and I think it was a mistake to do it so soon. Could have let him put on a few lbs first, as everyone was already pretty certain that he had crohn's.

I wish it weren't that way and I could just trust them and the system, but I can't.
 
Last edited:
I think it is difficult, but not impossible to find a doctor that you trust. I trust our GI wholeheartedly. Even when I disagree with him (like when he was confident A had IBS and not IBD....) I still trust him. Sure, he could be wrong. He is human. But I chose him because he specializes in Pediatric IBD and is knowledgeable about my child's condition, even though she doesn't present typically. He is dedicated to making her feel better and I really believe that. I may be an expert on my child, but he is an expert on IBD so we have to work together to give A the care she deserves.

Amy - I really hope you are able to find a doctor you can trust. It really is a weight off your shoulders when you do.
 
I totally trust my ped GI.. he adores my son and absolutely has his best interest at heart. That being said, it's MY son.. so if I dont' agree with treatmetn, I speak up and we resolve it.

Amy, you have been here at Children's Colorado as well, and interestingly the docs here do NOT do EEN.. they believe kids should eat and get a great deal of their nutrition via EN, if that is the route we go. My doc didn't recommend EN.. he wanted a biologic. however, my son really was not at that point, in my mind. So when I suggested EEN, the compromise was EN. and son is doing amazingly well..next up, deciding what meds to put/keep him on. He's still on 50 mg azathioprine. I've wanted him off, b/c of the lymphoma issue, but feel that MTX is not the way for us right now.. so I'm pushing to try out LDN.. we'll see what the outcome of this meeting is.

So while I don't think docs are always right, I do feel like my doc and I have a very mutually healthy respect for each other, adn I always consider what he has to say.. and weigh it very carefully by my feelings, research, etc.. before making the ultimate decision on which treatment, etc to proceed with.
 
That's a hard one.

I have disagreed or more appropriately, misunderstood at times what my GI wanted to accomplish or why they wanted to take the course they did. I guess I have been lucky because we usually discuss my concerns and are able to come to a point where we agree. I have found that GI's are hesitant to push. When I push back, I don't want him just to back down. I want to hear why he thinks I am wrong. I want all the information.

The only thing I have ever really insisted on was having some tests run earlier than the GI wanted them done.

It is important for me to mention that I have had the highest degree of respect for both of the GI's we have worked with. If I felt he/she didn't really know the speciality well or acted defensive that would change how I felt about their opinion. I think if I disagreed with the treatment plan I would need to have the GI on board with what I wanted to do or I would need to find a new GI.

Sorry this is such vague advice, I am just giving you my thought process about the situation. It may not relate in anyway to what you are going through.

(((((Hugs)))))
 
I would just love to be able to have the expertise of a pedi GI ! Still working on finding the best combo of GI and paediatrician. Oh to have a choice of experts.
 
I totally trust my ped GI.. he adores my son and absolutely has his best interest at heart. That being said, it's MY son.. so if I dont' agree with treatmetn, I speak up and we resolve it.

Amy, you have been here at Children's Colorado as well, and interestingly the docs here do NOT do EEN.. they believe kids should eat and get a great deal of their nutrition via EN, if that is the route we go. My doc didn't recommend EN.. he wanted a biologic. however, my son really was not at that point, in my mind. So when I suggested EEN, the compromise was EN. and son is doing amazingly well..next up, deciding what meds to put/keep him on. He's still on 50 mg azathioprine. I've wanted him off, b/c of the lymphoma issue, but feel that MTX is not the way for us right now.. so I'm pushing to try out LDN.. we'll see what the outcome of this meeting is.

So while I don't think docs are always right, I do feel like my doc and I have a very mutually healthy respect for each other, adn I always consider what he has to say.. and weigh it very carefully by my feelings, research, etc.. before making the ultimate decision on which treatment, etc to proceed with.
Actually, we were sent home from Children's with instructions to do EEN, but when my son began to have difficulty, we were told to add 20% food.

With my history, I'm probably never going to blindly trust any doctor, but I see no reason not to trust my son's current doctor, as much as I would trust any doctor.

I do believe Crohn's is mysterious enough that treatment is often a matter of opinion, rather than fact.
 
He's been eating about 3000 calories a day and some days, wants more but I want him to take it easy.

:(
We are wanting to follow SCD also. What is your son eating that he gets 3000 calories a day? My doc is all for the diet if I can show I can get him enough calories. Could you post what he eats?

Thanks!
 
We are wanting to follow SCD also. What is your son eating that he gets 3000 calories a day? My doc is all for the diet if I can show I can get him enough calories. Could you post what he eats?

Thanks!
It would be easier, if my son ate meat, but this is pretty much what he's been eating every day:

350 smoothie with 3 oranges, 1 banana and 1 T almond butter.
440 6 lg eggs (he eats these 2 at a time throughout the day)
50 Cup of cooked carrots
100 bunch of spinach, cooked with 1 t butter
400 - 500 yogurt + honey to taste
300 - 400 watermelon
100 - 200 cantaloupe
100 pineapple
50 zucchini "pasta"
150 marinara sauce (made from roasted veggies & olive oil)
100 homemade applesauce
150 half an avocado
200 16 oz well cooked string beans with butter
80 olive oil
230 2 oz medium cheddar

It will be better when we can add almond flour, lentils and black beans to his diet.
 
Top