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Multiple medical disciplines- how do you manage it all?

Posted by Denise @denisestlouie, Nov 26 6:42am

I have an appointment with my Gastroenterologist this morning. Before cancer I was diagnosed with Crohn's Disease (2022). Crohn's is an autoimmune disease and it can effect any part of the digestive system. My is in the ilium, the last section of the small bowl. Until 5 months ago I was on a biologic medication to suppress my immune system and that put Crohn's into remission. Chemotherapy does the same thing for me now.

Managing Crohn's while trying to be cancer free, to me, is most complicated issue I deal with when it comes to cancer.

Today's visit is with the nurse practitioner, who disclosed to me she was diagnosed with cancer and went through surgery and chemotherapy while she was pregnant. Her baby is 3 and perfect now. She will understand my delimna. Side note my oncologist shared that he sees a gastroenterologist for an Inflammable bowel disease. He gets it too. So I think I'm in good hands, but I worry anyway.

There is no good solution. The inflammation caused by Crohn's is known to increase the risk of cancer occurrences and the treatment for Crohn's is known to increase the risk of infections infections and cancer. See what I mean, complicated.

I'm hoping the nurse practitioner will offer several ways to deal with this. Because I will be receiving maintenance treatments for cancer for the next year I probably won't have the talk about starting immune suppressing medication until that's completed.

Geeze! I never envisioned I would be that old person going to specialist all the time. While on chemotherapy I have had at least 3 medical appointments every week.

It's all interrelated and yet to they are all siloed when it comes to treatment. I have asked for a nurse navigator or case manager social worker to help me with managing all this, but I'm not even sure they exist.

Has anyone worked with a person to help coordinate care from multiple disciplines? How did you get that arranged?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

val64 | @val64 | Nov 26 8:39am

I hope you find someone to help you manage this issue, but I'm not too optimistic.

As far as I can tell, the way the US medical system works is that doctors are obligated to follow a series of treatment guidelines issued by each specialty. These are determined based on clinical trials that suggest what will work best for the greatest number of people. This is called "evidence-based medicine" and is designed to make sure that patients with the same disease don't get wildly different treatments based on differing beliefs and training of their doctors. The doctor's job is to follow these algorithms, which keeps them from getting sued and is also what insurance pays for. Not only is it not their job to think, but thinking is actively discouraged.

The clinical trials these guidelines are based on do their best to exclude people with complicating medical conditions. You can bet that your last dollar that having cancer was an exclusion criterion for all the Crohn's disease clinical trials.

It sounds like you have a good care team who may try to think about how to deal with your competing medical conditions, but there is probably very little data out there to guide them.

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1 reply
Denise | @denisestlouie | Nov 26 9:25am
In reply to @val64 "I hope you find someone to help you manage this issue, but I'm not too optimistic...." + (show)
@val64

I hope you find someone to help you manage this issue, but I'm not too optimistic.

As far as I can tell, the way the US medical system works is that doctors are obligated to follow a series of treatment guidelines issued by each specialty. These are determined based on clinical trials that suggest what will work best for the greatest number of people. This is called "evidence-based medicine" and is designed to make sure that patients with the same disease don't get wildly different treatments based on differing beliefs and training of their doctors. The doctor's job is to follow these algorithms, which keeps them from getting sued and is also what insurance pays for. Not only is it not their job to think, but thinking is actively discouraged.

The clinical trials these guidelines are based on do their best to exclude people with complicating medical conditions. You can bet that your last dollar that having cancer was an exclusion criterion for all the Crohn's disease clinical trials.

It sounds like you have a good care team who may try to think about how to deal with your competing medical conditions, but there is probably very little data out there to guide them.

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Wow! Thank you. ,

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celia16 | @celia16 | Nov 28 5:09am

I understand your concern. In addition to my GP, I see multiple specialists due to my specific health issues, including type 1 diabetes, Salzman’s nodules, constipation, psoriasis, post covid syndrome, etc. I see all my providers, except for my primary, though Duke. That way all notes are available through my online Chart and I can PM them anytime.

My health insurance company has offered to provide me a case coordinator, but based on how they have handled some other matters, I prefer to do it myself. I think I do a good job, though it’s time consuming and stressful at times. I hope my need for care will decrease next year.

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1 reply
Denise | @denisestlouie | Nov 28 7:05am
In reply to @celia16 "I understand your concern. In addition to my GP, I see multiple specialists due to my..." + (show)
@celia16

I understand your concern. In addition to my GP, I see multiple specialists due to my specific health issues, including type 1 diabetes, Salzman’s nodules, constipation, psoriasis, post covid syndrome, etc. I see all my providers, except for my primary, though Duke. That way all notes are available through my online Chart and I can PM them anytime.

My health insurance company has offered to provide me a case coordinator, but based on how they have handled some other matters, I prefer to do it myself. I think I do a good job, though it’s time consuming and stressful at times. I hope my need for care will decrease next year.

Jump to this post

I have a nurse from the hr insurance company that is I speak with weekly. She does a check in every week or Two. I had the same service when I had a bowl obstruction. They don't coordinate care, but helps me process the next steps and follows to make sure progress is being made. It's a great service and it's not part of the determination process.

Give it a try. You paid for that service through your insurance premium

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