Directing my own care Letter

Did you give your GP a copy of your most recent c-scope? Just so he'd have proof of what you know.

StealthGuardian said...
Kudos to being your own advocate.

I have to admit I laughed a little when you said "clone". It's amazing that when you switch docs in the current system, there is small chance that you'll find an exceptional and open-minded one. Usually, people have to pay big bucks for that.

I'm concerned about antidepressants, however. Is there a reason you were prescribed it?

Interesting feedback was not sure what the crowd would think.

"Major depressive disorder (MDD) in adults & adolescents. Generalized anxiety disorder (GAD) in adults."

I think it was for the obvious GAD not the MDD. I just dont want to mess with my willy. I am not in a relationship but will get severance checks in Jan and new job new town could lead to something with a gal. Downtown never did that's for sure.

Starts fast and works but the downside really has me double concerned now.

Somebody said...


7.2  Cons
Few dosage options with the tablets. Some side effects (teeth grinding, TMJ, anorgasmia) can be way worse than with other SSRIs, and those first two can get really painful.

7.4  Best Known for
The Lexapro Yawn. It doesn’t matter that you’re not tired, you can yawn so intensely and so often that your jaw can pop out of its joints and you’ll need to see a doctor about that.
I’m sorry if reading this made you yawn, especially if you take Lexapro.

Dentist already showed my I am a grinder, right thru teeth and crowns, sheered everything so this is not good.

Anorgasmia ? Wow it will have to make me feel REALLY good to be worth that.

GI DOCS

Pretty much clones from what I see. They also do not need to put up with me.

Here let me show you the start...


LETTER to GP

Because Ulcerative Colitis cause is unknown and even the effectiveness of some medications is unknown I have had to be the 'curious patient'. This can be misunderstood by some doctors as a 'difficult patient' or even a patient who lacks confidence in the doctor.

I previously used Dr M who understood that for myself I need strong Prednisone tapers that start at least at 60 and may go for months before my body is ready to taper down. Ultimately he wanted me to try stronger remedies such as Imuran. However his unwillingness to treat a major side effect of UC, anemia to the point of having visual artifacts and anemia coupled with > 700 platelets causing issues made me decide it was time to try a second opinion.

I began being a patient of Dr J and we did a colonoscopy last month. This whole time I had been in a UC flare and she was unable to get me the new UCERIS drug which was supposed to be non-systemic prednisone so I just asked for prednisone to continue what the Emergency Room gave me when I had become dehydrated.

However Dr J does not know my history and her prednisone prescriptions start too low at 40 and taper too quickly never giving my body a chance to eliminate the inflammation. As a single parent with full custody I must be able to commute for an hour to Denver and work in the office. When a UC flare is bad it can cause 30 BM's per day and its impossible to be mobile or in the office. That is primarily why 60 mg is the right amount at the start of the flare.

I track the key bloodwork with weekly CBC's and CMP's through self-pay with BCH. I have bloodwork tracked in a spreadsheet going back 10 years. I know my body and what is working. Right now my body has next to no inflammation and I am lifting weights again. However I am still on 60mg per day and need to begin a taper to zero, abruptly stopping could be fatal because the adrenal glands are shutdown from exogenous synthetic cortisol ( prednisone ) and cannot 'jump start' over night regardless of how urgent the need is. Thus I greatly appreciate Doctor B'S long history with me and understanding of the whole issue I face. We are collaborating on a 'custom' prednisone taper as I monitor the bloodwork and keep him in the loop. With my regular self-pay weekly lab work and his full view of my health picture and long history this is completely safe
to deviate form Dr J's standard of care although it is clear she also holds a bias against use of prednisone in favor of strong biologics. Additionally when a person must use prednisone repeatedly in the same year it is with less effectiveness further underscoring the longer but safer taper schedule.

I have asked Dr. B to prepare 170 10mg prednisone taper for a 10m drop every week until zero. I have a number of things which reduce inflammation and therefore put less stress on the adrenals as they are asked to fully wake up and contribute.

I hold Dr. B, his staff nor XXXX YYYY Family Medicine in NO way responsible for any adverse outcome from this taper as I know my body and am also describing what the taper dimensions are, this is my call under his watchful eye.

To be clear I take full responsibility here and am lucky to have Dr B as my General Practitioner and have previous thanked him in a letter as the 'Best Doctor in the world'. He has helped me through many health and personal problems.

I am currently not anemic and my platelets, neutrophils and wbc counts have all plunged as I began using ASACOL HD prescribed by Dr J. This in addition to other foods and chinese medicines has set the stage for me to begin the taper off prednisone.

Taper requested.

( per day )

..

Post Edited (aguywithuc) : 12/12/2013 3:05:51 AM (GMT-7)

InSoFla said...
StealthGuardian,

I think you are very lucky indeed that you do not have a "clone"d GI, but a great GI!
We should all be that lucky!



Unfortunately, For the rest of us, we have to be our own best doctor.

Aguywithuc, kudos to you!
BTW, why not add LDN to the mix? I don't think you've tried it - is that correct?

No cloned GI using excellent GP

I keep asking, nobody will give it to me. GP gave me lexipro which I am leery about starting.

I'd be leery about an SSRI too unless I felt I really needed it, given that some 95% of body's seratonin is in the gut and the vast majority who go on SSRIs get stomach upsets in the first month. If you need it of course, then I suppose it is worth trying. Lexapro's cousin, Citalopram, is a heavily prescribed SSRI in the UK and many report fatigue on it, don't think us colitis people need any extra fatigue. Do you really think that you have GAD? Do you worry a lot about a lot of different things when really it would be more helpful to problem solve and accept uncertainty? 'Cos that's the GAD profile. You look like quite a problem solver to me! If you can train yourself to practice mindful meditation, it would probably be far more effective and less side effects in the long run.

I'm interested though that a lot of people seem to have said they found that the anti-depressant Wellbutrin (not an SSRI) alleviated their colitis symptoms.

"worry is a waste of your imagination" - I like that

London Lurker said...
"worry is a waste of your imagination" - I like that

Glad you guys like that. After my Sagittal Sinus Thrombosis paralysis in ICU for $64,000 and them talking about learning to swallow and walk again I loved this one -

"The only thing I cannot remember since my stroke are my former limitations' :)

Now people are freaked out at my long rich emails and its because when I bounced back 100% rapidly I have been so happy to have 2 working hands that I just type awayyyyyyyyyyyyyyyyyyyyyyyyyyyy :)

I was off the meds in half the time after demanding 2-hour MRI/MRV which showed 100% resolution. Pretty darned painful first 60 days let me tell you. But I followed strict protocol and resolved it, never had a problem since. THAT message board is a sad sad place, those people feel cutoff from life. Lively hear we are still kickin !

Good Indian saying :

"We become what we think about"

Be careful your thinking upbeat positive thoughts eh ?

Interivew 8 today and the company still has to meetup in a roundtable discussion next week to make a decision. 'Oh no everyone liked you - you made it through the entire process' whatever moving on.

OK well explosive growth Business Intelligence company with a secret new product to work on for customers that already love them but I need a fast-gig to replace this one - simple consulting contract etc. so working the openings up here by my house. That place was so far south I told him if work from home was no good I would buy a small plane and fly from this tiny airport to Centennial south Denver and have a beater car for the last 2 mile to his office. That or depart by car at 5:00 am everyday to avoid the nonsense on the main interstate thru Denver. I am a 2000 hour commercial pilot no way I sit in traffic clutch-in clutch-out for miles everyday passed mile-high stadium.

Got a lead on a great gig a few miles through the countryside around Boulder, near home, near daughter charter school and no hassle commute. Need 2 more irons in the fire by next week before year end shutdown.

Cheers

:)

I'm a bit envious of the knowledge and control you have over your UC. I'm sure you make your Drs day interesting

What blood work values do you track and what are you taking to support your adrenals?

Hey GuyWithUC,

We seem to have a couple things in common such as life long heavy weight lifting (what was your max bench press? just kidding lol), powdered psyllium seed works very well with your body chemistry, and you were the one who introduced resistant starch to the forum (at least I think it was you) and that along with navy beans has been helpful for me.

Anyway I find that adding more resistant starch in the form of a couple of spoonfuls of potato starch really, really helps me. Added it to my signature. I wonder if it will work for you.

BabeintheWoods said...
Hey GuyWithUC,

We seem to have a couple things in common such as life long heavy weight lifting (what was your max bench press? just kidding lol), powdered psyllium seed works very well with your body chemistry, and you were the one who introduced resistant starch to the forum (at least I think it was you) and that along with navy beans has been helpful for me.

Anyway I find that adding more resistant starch in the form of a couple of spoonfuls of potato starch really, really helps me. Added it to my signature. I wonder if it will work for you.

Only 300 lbs :) Small bones and I have lost 1-2 inches, L5 is broken and Dr said squatting may have compressed of some height but I bet its just prednisone bone shrink. Need a few thou for an HGH reinforcement treatment. Nothing in budget now.

Yeah I pushed pseed years ago. I am using Slender Sticks drink powder with RS2.

I tried some RS baking powder did not work out.

Which potato starch are you using ? If it works for you I bet it works for me given the other common hits.

:)

BabeintheWoods said...
I found this to help:

www.bobsredmill.com/potato-starch.html

So its just regular potato starch, not with any kind of effort to maximize RS ?

Can it be used as-is poured into sugar-free drinks to give them better thickness ?

Thanks !

Potato starch in of itself is one of the foods highest in resistant starch. A couple of spoonfuls right out of bag into juice or water or sprinkle it on some food. Hope it makes a difference. I must still avoid gluten and take probiotics but otherwise feel very close to normal.

Potato starch has no taste which is a huge improvement over the horrible tasting powdered psyllium seed which has been my "go to" wonder drug for the past few years.