Answers, but no resolution. Formal diagnosis?

[CityGardener]

I get ya, sir. I was diagnosed with Neurogenic Bladder as well and it never felt like a real answer. Just keep pushing through and hope it gets better? Best I can do is be empathetic.

Thanks Porkchop,
I appreciate you. It's such a "one size fits all" diagnosis and seems basically like them saying "meh, idk". Meanwhile i am stuck here wearing diapers, trying to hide it and not to humiliate myself on a daily basis.

Question for you: has your issue gotten worse over the years? Was it gradual, or did you drop off a cliff at some point? Have you been given any treatment options like the Interstim, or any medication combos ever help any, or no?

[ThatFLguy]

I get ya, sir. I was diagnosed with Neurogenic Bladder as well and it never felt like a real answer. Just keep pushing through and hope it gets better? Best I can do is be empathetic.

Thanks Porkchop,
I appreciate you. It's such a "one size fits all" diagnosis and seems basically like them saying "meh, idk". Meanwhile i am stuck here wearing diapers, trying to hide it and not to humiliate myself on a daily basis.

Question for you: has your issue gotten worse over the years? Was it gradual, or did you drop off a cliff at some point? Have you been given any treatment options like the Interstim, or any medication combos ever help any, or no?

O, How I understand this. What is listed as my diagnosis (Dyssynergic defecation) keeps me scratching my head. It is listed in a lot of places as an acquired behavioral problem. My GI doctor said most patients with this are kids. Yes, it is due to constipation but I have a lot more issues than what my diagnosis takes about. Now that my Physical therapist and GI are keeping up with my care they agree that Therapy is not having the results they hoped for. The last test that I had done indicated that there are far more things going on than just Dyssynergic defecation.

[CityGardener]

O, How I understand this. What is listed as my diagnosis (Dyssynergic defecation) keeps me scratching my head. It is listed in a lot of places as an acquired behavioral problem.

This drives me nuts! A behavioral dysfunction as a root cause? I can't just can't be sold on that.

[ThatFLguy]

O, How I understand this. What is listed as my diagnosis (Dyssynergic defecation) keeps me scratching my head. It is listed in a lot of places as an acquired behavioral problem.

This drives me nuts! A behavioral dysfunction as a root cause? I can't just can't be sold on that.

Yea... Like hello, I had almost two feet of my large intestine removed and have been constipated ever since. I hate this. I would and have tried everything to make this stop.

The thing is that this happens to a lot of kids. One of my nieces had issues when she was young with constipation which was likely this. But I am an adult that only a few times in my life ever went to the ER because of bowel issues. So, yea, this is something new and they got to figure this out.

[ThatFLguy]

To take it a step beyond.

I had an MRI Defecography study done on 2/10/2021

Several things on the study results were very alarming to my physical therapist. When I discussed it with my GI doctor it was like no big deal.


GI said this was not a big issue

My Anorectal angle (degrees): At rest: 102, squeeze: 98, maximal strain/defecation: 114.

(Reference values: Rest 108-127, squeeze -15-20, defecate +15/20) The reference value is what you should be between.

Realize that the squeeze went the opposite way. IE positive verse negative ...and the max strain is off the charts.

And those are not the only numbers that were way off. The MRI tech acted as he had never seen numbers like mine in someone my age without major issues. So, I am going to be talking to someone about this soon.

[CityGardener]

ThatFLguy: you sound knowledgeable of what's going on with your health. That should be helpful when dealing with these doctors. It'd be kind of like bringing your car to a crooked maintenance tech. They'll just sell you crap you don't need and never fix it.

[ThatFLguy]

ThatFLguy: you sound knowledgeable of what's going on with your health. That should be helpful when dealing with these doctors. It'd be kind of like bringing your car to a crooked maintenance tech. They'll just sell you crap you don't need and never fix it.

I feel like you almost have to be knowledgeable in order to get through all of this. Having a college degree has really helped me. I can do research and find actual medical journals to get information.

My goal is just to know enough to understand what is going on but also enough to make informed choices for myself.

It sucks when I go in knowing more than the doctor does about what is in my chart though.

[CityGardener]

I feel like you almost have to be knowledgeable in order to get through all of this. Having a college degree has really helped me. I can do research and find actual medical journals to get information.

My goal is just to know enough to understand what is going on but also enough to make informed choices for myself.

It sucks when I go in knowing more than the doctor does about what is in my chart though.

ThatFLguy,
SAME. I want to know enough to not be given bad advice, or options for treatment. Also, I want to ensure the doctors are doing their due diligence when working on my case. If I turn out to be a candidate for the Interstim system that will be something i will want to know everything about before i would go forward with the surgery. My Grandmother was sold the Pelvic Mesh treatment back in 2007 which turned out to be catastrophic due to the material the implant was made of. I very much trust and respect doctors, and medical device manufacturers, but they can get things wrong. You are taking a risk with any treatment. Medications, surgery, whatever it is. I'd like to be able to examine those risks for myself, in addition to the advice of a good doctor that i trust.

I might need to bug you about getting some white papers.

Thanks man! I hope you are having a good day today.

[ThatFLguy]

One thing that the past week has pointed out to me is that my issues are far worse after I have been up for a while. Also, my bowel issue gets worse after my first movement of the day. From that point on, it is almost certain that I will have an accident. I had only one-day last week without a bowel accident and I was bound up.

I have re-packed my carry backpack with a change of clothes and stuff to start living my life. As the weather gets nicer during the day I will be back to my baggy shorts and life will be a bit better.

I am going to stock up once I get taxes and stimulus money so I have less worry about that.

[CityGardener]

I have re-packed my carry backpack with a change of clothes and stuff to start living my life. As the weather gets nicer during the day I will be back to my baggy shorts and life will be a bit better.

Great idea!

I did some stuff today. I left the house to meet someone about an hours drive away, and do some shopping, wearing my "Ultimate Protection" which was definitely visible if you looked hard enough. My goal was to forget I was wearing it, and just go about my business. I went to 3 stores and was going to make one more stop, but decided that was enough for the day.

Cheers to "getting out there"