When even doctors don't have answers.

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Had yet another follow-up appointment with my PCP yesterday as well as a metric ton of blood work.

PCP is not happy that my main GI doctor has not reached out after all the messages and calls that have been sent in the last 30 days.

He is working on filling out the paperwork I need to done for my insurance but it will take a bit.

The other GI doctor that I saw said my case is very complex. My surgeon said that more is going on than just what surgery was done for.

Another GI wants my main GI to look over everything but nothing has been done by the main GI.

Big thing is that after my PCP looked over all the notes from the people that I have seen in the last month he feels that it is getting to the point where I will need to see more specialists in order to get answers to what is going on.


Right now I am a mess. No energy, feel sick all the time, and cannot even do basic stuff most of the time.

PCP finally noted that I am depressed over all of this.

More tests are coming, I am going back to see a physical therapist for a consultation (They want me to go to PT to see if there have been any changes if things are worse, and decide what is next)It is more that than want time to get my GI doctor to decide what they can, should do.

PCP feels that I am heading in a bad way and that if things do not get better soon that he is going to have to insist that something else be done.

There are a lot of things my doctors are very worried about that are going on with me and the big thing is that surgery may fix things but if one thing they are worried about is going on then it will be very bad but surgery will then be needed anyway.

I am glad that my PCP is seeing that things are not better, in fact, they are worse. So, now he is going to push for my test to get this all figured out.

The big thing that all my doctors are worried about now is that something neurological is going on which would be very bad.

Yea, so stuff still suck but I feel that doctors are working to get me answers as soon as they can.

 

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Sending Prayers @ThatFLGuy. God is with you at all times. Keep pushing and hanging in there - I pray that things will work out for you.

Keep thinking positive; and let the doctors do there job, we will always be there for you thick and thin as you have for all of us. I hope good news is around the corner for you. Don't give up.

Blessings In Christ,
Honeeecombs

 

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@ThatFLGuy Why don’t they just get on with the next surgery so you can get some relief? To hell with all the years of testing and doctors messing in your life while never giving you answers. Sometimes we have to accept that there are no reasons or explanations (especially when it comes to mental health, pain, and certainly urinary issues, and just get on with procedures. I can’t believe they’re delaying you even more; that sucks and seems like a waste of time and deliberate torture against you. I hate your doctors and your hospital system on behalf.

When you say they’re worried you have something neurological wrong, do you mean something MS, or???

 

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@snow

Doctors have a few really good reasons not to do a proctocolectomy on me being a male, at my age, and with the possibility of other issues.

Sexual dysfunction is a very big issue in men and a proctocolectomy can last a lot longer than prostate surgery. My surgeon is worried that even a proctocolectomy will not fix my spasms due to where they are. He is sending me back to physical therapy with the idea of getting seen than re-assessing things when I see him again in December.

From a neurological standpoint, doctors are very worried about other things, MS or something else.

They were waiting for blood work to come back to see if this is all a nutrition thing. Sadly I got the lab work back and it seems all within normal range. (Doctors have not reviewed it yet but the charts give normal ranges so)

I have never felt like it had A, B, or C as far as neurologically. The issue with saying that is I actually have been diagnosed neurologically issue. Both Dyslexia and Dysgraphia are neurodivergent. I was diagnosed with both as a child which is why I was in special education classes until my junior year in high school (Graduated from HS in 2004) A laptop saved me from never graduating.

The other Neurodivergent condition that I likely have is autism. (This is based on assessments by both my mother and sister whom both specialize in ADS and special needs and both have advanced studies in learning disability diagnosis, but I was never tested by a psychologist. Aspergers is listed on my last few Individualized Education Program, IEP from high school)

The issue is that to most, I seem normal but my family knows how bad a turn things have taken since this all started.

Doctors want more tests to find out what is going on. Now that blood work has come back I feel that things will have to move into the neurological tests.

I just want to get on with it. Some of my doctors did not want to do the paperwork that I need for my insurance but after I explained to my PCP that the only thing that has been charged since my ostomy is that I am not crapping my pants now, he caved and is going to do the paperwork.

Now if I could just get my insurance and the group filing my social security to reply to stuff than I will fell less stressed.

 

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@ThatFLGuy;

I hear you there buddy. It seems to me that it is purposely made hard to get any sort of social services here in America.

I love our country - and will always love it - and i am thankful that I have an advocate who is working with me to get the paperwork done. From everything my mother and I have done; it's like doing a mountain full of paperwork and sitting in waiting rooms just to easily be denied or to tell you to come back another time; which never comes.

Hang in there man; you will prevail. Luckily with God and my family - I am getting assistance to head in the right direction; and i will pray you will get assistance too.

Blessings In Christ,
Honeeecombs

 

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@ThatFLGuy I understand everything you said and can relate to some of it. ADHD and OCD are definitely neurodivergent disorders I’ve struggled with my entire life. I’ve worked in therapy on and off - for 31 years now - to manage the above since I was 15. I’m always depressed and extremely anxious. I was first diagnosed with ADHD when I was 4 because I could never sit still, talked too much, and bothered all the other kids in preschool with my endless inquisitiveness. I was also way too smart, a symptom of ADHD, though not a symptom of plain ADD (the H in ADHD means hyperactive, while plain ADD means not hyperactive); what the two have in common is that it’s nearly impossible to pay attention to things you don’t care about. But when it’s something you care about, you get way more hyperfocus abilities than the average person typically experiences in their entire lifetime. Like anything else, ADHD has it’s pros and cons. I love the pros but truly despise the cons.

I really hope you don’t have MS or something like that. But even if you do, you still need the surgery! ASAP!!!! I hope your doctors aren’t saying anything like that your neurodivergent symptoms have anything to do with your physical symptoms. That’s bullshit! You’re not making up your cramps because you may have autistic traits. Mental is different from physical, unless you have a brain tumor or something.

I think your doctors have already messed with you plenty and already done all the tests and measures like PT. There is no reason to be repeating it all over again now; nothing will change except that your suffering and depression will carry on for even longer. What jerks! They know damn well that all of this does nothing but delay your disability approval and chance at recovery.

Lack of sexual function, by the way, which I have after cancer forced me to get a hysterectomy, is pretty awesome, actually. The world stops being about sex. It’s liberating. It’s definitely weird and it’s an adjustment, but who cares, sex serves no real purpose other than ultimately for procreation anyway, and useless, very short term pleasure. So much of people’s time and energy is preoccupied needlessly with sex. It becomes crystal clear once you’re no longer “in the game” that the game was never worth playing to being with. It’s just a distracting game with no meaning that takes up a HUGE part of the lives of those who are sexually active. You don’t have to chase around or care what you look like any more to impress others - though it still feels nice to take care of yourself for yourself. It’s a huge sigh of relax, actually. You have to remember: not only will you not have function, but you will no longer have any craving, either, and doesn’t that sound awesome? No longer having to constantly be a servant to the pleasures of the flesh? No more porn, no more flirting, no more sun, no more dating, best of all. Life is very simple after losing that unending drive. So being asexual definitely has its pros, too.

Being asexual does mean perpetual loneliness necessarily. There are dating websites for ACES (those who are asexual but still crave the emotional intimacy of a romantic relationship). One day when I’m ready, I’m going to look on an ACES site for a guy with no prostrate.

 

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@snow

I use the term neurodivergent simply because from a medical standpoint, they have no documentation on my issues with Dyslexia and Dysgraphia. (My sister works for the county that I graduated high school from and if I do not still have the documents in my school file back in Florida then she is going to get them for me.)

I agree with what you are saying about doctors. I had to go so far as to spell out everything going on, still going on to get them to send paperwork to places that I needed it sent to. (They really did not want to do my disability paperwork)

The next surgery is a huge step because it will make a lot of things so there is no turning back.

Looking at a list of MS symptoms, everything that I have fits them. Even the time in which blood family members that have it started showing symptoms.

The big issue is that I feel my surgeon wants more answers before we do the big surgery because he feels like something else outside of what he deals with is wrong. GI is worried that I have something else going on that will lead to needing supplemental nutrition. This is due to the fact that stuff is not breaking down. They already talked about me trying meal shakes and if that does not help then they have to decide if the only option is a supplemental nutrition program. None of that is easy but it would make sense due to how long stuff has been wrong with my digestion.

The big what-if factor that none of my doctors want to see happen is that if they do the big surgery before knowing in my digestion is off the big surgery will make it so I would have to maybe IV or a J-port so that no actual digestion is happening (IE not whole foods all liquid feeding)

That I do not want, I love to eat. But in the end, I would do just about anything to not feel like I do.

As for the other side effects of surgery, I do not care about that. I have not even dated since 2006. Yea, right now I have someone that I talk to in real life that also has an ostomy and knows everything else and accepts me. There is more to a relationship than just sex and there is not 100% that do not get their function back. But my luck sucks so I don't worry about things that I cannot control.

In the end, I just want this all to get figured out and luckily I see my old physical therapist next month so that will help to get her to say "Hello, nothing has changed so do something".

 

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@ThatFLGuy I like your plan, a lot. I can understand some of why they want to do their tests differently before the procedure now because yes, caloric intake is a big deal.

I’m glad you have a good friend to talk to on the phone.