Compliance and Community

[k9ophile]

My PCP educated himself on the nutritional needs of DS patients and sees about a dozen. We met yesterday to go over my latest lab results. He told me I have the best and most consistent labs of any of his DS patients and asked my what I did to achieve this. I told him I stay connected with this forum.

You see not only do I find the best advice here, I feel that every time I check in I am reminded that this is a life long process with serious consequences for non-compliance. Even if all I do is read the R & R forum, I feel very much a part of this community. A community that knows when to take things seriously and when to go batshit crazy off topic. He told me he is growing increasingly frustrated with a non-WLS patient who is bi-polar. His bipolar patient quits taking medications when feeling good on the basis that feeling good means medicine is no longer needed. Apparently this patient has not realized that feeling good is the result of compliance.

As for my labs, my BUN was 33 with a BUN/Creatinine ratio was 40. I guess that explains my constipation. My poop analysis showed low Lactobacilllus and moderate microscopic yeast. His recommendation: more water, fiber, and yogurt with live cultures. The yogurt is a nice twofer, protein and beneficial intestine flora. I can do that!

He said he was putting me on his list. "Your shit list" I asked because my biggest complaint of late has been constipation. "No, I want you to do a podcast on compliance." Wow, I am so flattered!

 

[Spiky Bugger]

I want to beat the rush....may I have your autograph?

 

[southernlady]

Yeah for finding a gem of a PCP.

 

[Larra]

What a terrific pcp! Do you think he'd be willing to tell his other DS patients about our little corner of the www? It might help his other patients to be part of our community.

And regarding his bipolar patient, this is unfortunately a common problem with both bipolar and schizophrenic patients - they take their meds (or someone forces them to take them), feel better, and decide that means they can stop taking them. Or, with some meds, they take them, their mental illness is well controlled but the side effects from the meds make they feel so crappy that they stop taking them. These are difficult diseases and difficult patients.

 

[DSRIGGS]

What a terrific pcp! Do you think he'd be willing to tell his other DS patients about our little corner of the www? It might help his other patients to be part of our community.

And regarding his bipolar patient, this is unfortunately a common problem with both bipolar and schizophrenic patients - they take their meds (or someone forces them to take them), feel better, and decide that means they can stop taking them. Or, with some meds, they take them, their mental illness is well controlled but the side effects from the meds make they feel so crappy that they stop taking them. These are difficult diseases and difficult patients.

So very true. My FIL has some mental imbalance and has had several episodes over the years when he stops meds. He turns into a zombie and gets scary. I also have a cousin with schizophrenia who does the same thing. He ends up in bar fights and all kind of trouble when he does, but when on his meds is a holy roller. Mental health issues are hard.

 

[newanatomy]

You not only benefit from this site. You are a contributor that I love to read. Thanks for sharing!

 

[k9ophile]

What a terrific pcp! Do you think he'd be willing to tell his other DS patients about our little corner of the www? It might help his other patients to be part of our community.

And regarding his bipolar patient, this is unfortunately a common problem with both bipolar and schizophrenic patients - they take their meds (or someone forces them to take them), feel better, and decide that means they can stop taking them. Or, with some meds, they take them, their mental illness is well controlled but the side effects from the meds make they feel so crappy that they stop taking them. These are difficult diseases and difficult patients.

I will certainly let him know about this place, especially if I make it to the top of his list and do a podcast. My anecdotal evidence on the periphery of healthcare, has shown quite a few horror stories of non-compliance patients with mental health issues as well as life long conditions such as diabetes. Knowing this, I also know I need reinforcement of others lest I become another train wreck. This site delivers a community of "others" and matters a great deal. Amongst all the garbage available on the web, I am thrilled that this site exists. Wouldn't it be nice if all the bipolar, diabetic, and others who could benefit from the wisdom and friendship of others in cyber space found their own place in it?

 

[southernlady]

Wouldn't it be nice if all the bipolar, diabetic, and others who could benefit from the wisdom and friendship of others in cyber space found their own place in it?

Many diabetics HAVE found their own community...however it is an email list. Reason I know is I have been a member of it since 1997 (started on the Lehigh listserver and then eventually went to yahoo groups). It was started by an endo who is at Beth Israel Deaconess in Boston.

It was that list that taught me so much about diabetes...helped me keep excellent control for so long and helped me understand that insulin should NOT be the last resort since saving pancreatic function was best.

 

[k9ophile]

Many diabetics HAVE found their own community...however it is an email list. Reason I know is I have been a member of it since 1997 (started on the Lehigh listserver and then eventually went to yahoo groups). It was started by an endo who is at Beth Israel Deaconess in Boston.

It was that list that taught me so much about diabetes...helped me keep excellent control for so long and helped me understand that insulin should NOT be the last resort since saving pancreatic function was best.

That's wonderful! I suppose the knowledge and support you receive there has a big influence on the Why and How you administer this place. Well done you.

 

[hilary1617]

Well done @k9ophile ! I have to say this community is awesome. I also am grateful to have access to ACOR groups for my cancer-related issues.

 

[Susan in Tennessee]

This group has a core group of vets who are so diverse in areas of expertise, who keep up with new studies and are always ready to listen and help by sharing their past experiences with DS. It's nice to see your PCP recognizing your diligence, @k9ophile!

 

[harrietvane]

I find this place a lot more supportive, evidence based and with just generally more my type of folks than, ahem, other places. A lot fewer dramatic threads, tantrums, preciousness and such here!

 

[k9ophile]

I find this place a lot more supportive, evidence based and with just generally more my type of folks than, ahem, other places. A lot fewer dramatic threads, tantrums, preciousness and such here!

Ain't that the truth?!

 

[DuodenalSwitchaRoo]

Good job on the labs and showing your PCP how it is done.

As for bipolar patients not on meds.....*raises hands* guilty. My GP was fully informed of my decision and was supportive with the understanding, and a contract, that I would try others if things went tits up. So far, 4+ years stables. Bipolar meds helped me gain 140lbs over 4 years...thats a deal breaker now. Any med that mentions weight gain gets a straight NO from me. I seem more stable off meds, so I dunno, maybe Im an odd duck.

Glad things are going well for you. I too would be lost and deficient if it wasn't for the knowledge of those who went before me. The info here is priceless!



[ETA: I spoke to my GP today and we are exploring a possible misdiagnosis (Bipolar) as it's not normal to be worse on meds and stable off of meds for someone with Bipolar. I thought I would add that just on the off change someone with Bipolar reads this and thinks 'Hey, I can go off my meds.' Yeah DON'T. Take your bloody meds, your life depends on it!]

 

[Annabelle]

Good job. I also love this site it is so informative, without the negativity I've seen on other sites. I am new here but have learned so much already. My DS is brand new and plan on staying on here forever. this forum seems more like a family.