I want to do a 15 page term paper on IBD

I think that's great that you want to write about what you care about.

The only ideas that jump to my mind are:

*  The INSANE cost of treatments for this disease.  Basic Asacol can run $500-$800/month... and have you heard the price of Remicaide?!  I don't have personal experience, but I heard it can be $4,000-$8,000 per treatment.  This is for people just trying to live!

*  The "shame/embarassment" factor with bowel diseases and how that might affect publicity, funding, research.

*  I think your idea of disability is a perfectly valid question to explore.

Just some ideas.  Good luck on your paper!

How about temporary disability. In other words, the disability would be effective only during flareups. The paperwork might be more, but I used to wish I had a disability card when I was flaring. Now, I don't need it anymore--at least not until the next major flare, which I hope never happens.

A topic that interests me is alternative treatments. Should doctors be required to learn about alternative treatments in addition to western medicines?

Judy2 said...
How about the ethics of doing a colectomy at patient request when the disease is being well controlled with medication. This is more of an ethical question, while some of the others are more strategic questions.

I think a lot of this has to do with insurance. My GI did not want to give me a colonoscopy when I was symptom-free, but the moment I told him I saw some blood, he wanted to do one.

I agree with Judy on this...I think it's just as much (if not more) of an ethical question as it is an insurance question. I think a lot of surgeons would hesitate to do a colectomy on someone like me (ie, in a very solid remission), even in I said I'd pay out of pocket. There are quite a few risks associated with any surgery, even minor ones, and a colectomy is anything but a minor surgery.

I don't think that "normalcy" can be maintained by medication. If you were going to discuss what "normal" is in a paper in an ethics course, you'd have to be very careful and that in itself is a topic of many phd papers. Medication obviously has serious side effects and patients should have a right to make an informed choice between their options (including surgery). If I were writing it, I would perhaps look at the idea of informed choice, ie. do doctors who have patients who have successfully used diet to treat their IBD have the ethical duty to inform patients that it is a potential treatment (albeit one that they don't know much about, don't use, hasn't been tested). Many GIs for example don't inform crohn's patients of the option of elemental diets as a treatment option because it's "old science" or it is difficult to comply with so they figure their patients won't bother. This despite the fact that they've been shown many times over to induce remission at the same rates (or perhaps slightly higher) than steroids. I think you'd have too examine what the role of a GI/Doctor is and should be ( I guess this is where the "Christian ethics" aspect of it would come in - I don't know anything about that).

Oops. I misread the post. I thought Judy said "colonoscopy," not "colectomy." Yes. That is a good topic.

I believe people should be able to have the choice of taking medication or getting their colons removed. It's one thing if the medications did not come with side effects, but anti-inflammatories general do. I would choose getting my colon removed.

Also, when it comes to Health Insurance through companies sometimes people with IBD (as well as with other disorders/diseases) won't be covered for a year because it is a pre-existing condition.

Umm..you could also discuss kids/teens with IBD and school and the ethical aspects of teachers/the school allowing students use of bathroom facilities, water bottles at desk, etc.

that's really all i can think of off the top of my head.

hope that helps

killcolitis said...

I don't think that "normalcy" can be maintained by medication. If you were going to discuss what "normal" is in a paper in an ethics course, you'd have to be very careful and that in itself is a topic of many phd papers. Medication obviously has serious side effects and patients should have a right to make an informed choice between their options (including surgery). If I were writing it, I would perhaps look at the idea of informed choice, ie. do doctors who have patients who have successfully used diet to treat their IBD have the ethical duty to inform patients that it is a potential treatment (albeit one that they don't know much about, don't use, hasn't been tested). Many GIs for example don't inform crohn's patients of the option of elemental diets as a treatment option because it's "old science" or it is difficult to comply with so they figure their patients won't bother. This despite the fact that they've been shown many times over to induce remission at the same rates (or perhaps slightly higher) than steroids. I think you'd have too examine what the role of a GI/Doctor is and should be ( I guess this is where the "Christian ethics" aspect of it would come in - I don't know anything about that).

Absolutely normalcy can be maintained by medication.....I'm leading a normal life with medications. Thankfully! Now, if one is given medications that ends up causing a patient to not be able to function as normally as possible and continues to add other meds causing other problems...that could be unethical.

The same could be said for doctors giving medications such as prednisone where other meds such as 5ASA, both oral and rectal, could be given as first-line with less side effects over the long-run. Not that steroids don't serve a purpose.

Food isn't a treatment for UC or CD....a doctor would be remiss in stating so to a patient. But it could very well be a supportive process in helping a patient figure out what might be a culprit in comfort or allergy or intolerance.

UC is different than CD.....but even patients without IBD can have food sensitivities, allergies or intolerance symptoms. Actually, I'd be offended if my doctor made my disease all about food and delayed actual treatment with meds.

There are also misdiagnosis.

I totally agree with the informed decision making, much must be up to the patient, however. I, for one, refused an ERCP based on the possibility of triggering PSC into an active state as well as possibly causing pancreatitis. My GI suggested the test and referred me to another specialist. I would have probably had the test done had I not read only one small article that I was given by a friend who did research for me.

I think a doctor cannot be the be all and end all and a patient not taking responsibility for their health. A doctor, as well, has an ethical right to say I cannot treat you because there is nothing more I can do for you...or you are interfering with your treatment by not making changes that will improve your health situation.

q