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I have now destroyed son #2

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Ulcerative Colitis
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Posted 4/17/2016 12:08 PM (GMT 0)
Just another thought - Before he is discharged, he can ask (or demand) paper copies of all his blood results. They will give it to him, even the pathology reports if he asks specifically. Just a thought. That's only two or three pieces of paper really. That way he can always keep them if he needs them in the future if he ever goes to another GI or something happens.

Not that it matters but I was out on day three as well. Blood in stool and mushy. My follow up was a month or so from then, and I was told to go to the hospital if something happens in between. It was upon my follow up that the GI discussed other meds.

Provided he doesn't get worse over time, I think they might be wanting to determine if he is steroid dependent - so I think this is when he tapers down to 25mg/day, if symptoms increase at that time then they call it steroid dependent and move to different med selections.
Posted 4/17/2016 12:25 PM (GMT 0)
Good thoughts Mark, this is a USA hospital, so I have no idea if demanding will do any good or not.
I will tell him to give it a shot.
I really need to find out what the mystery drug is.
If it is a 5-asa or some other anti-inflammatory bowel drug, I am fine with that, if not then?
As far as I am concerned they should be hitting the colon with max meds, to induce healing.
OM
Posted 4/17/2016 1:34 PM (GMT 0)
The feeling that you are unable to do anything is the worst, but I do think that he has a right to paper copies of all of his records. I sure hope he is out with pred, a 5ASA and some stype of enema as well. I agree with hitting it hard to start. Does he have anyone at home to help him out? Flaring and caring for yourself is hard to do well.
Posted 4/17/2016 4:06 PM (GMT 0)
Ah the mystery med is  Lialdia, or asacol, but of course not on his formulary list.
But I am relieved, apriso,balazide and dipentum on list.
Of course they all fire off in gut, different ways and possibly location.
Seems to me he needs from top of colon.
Todays stools not great more liquid and possible increased blood.
I think she is basing inflammation off of CRP, not sure my son of course did not get
correct test name, but doc is not easy to understand, and I have talked to her.
Said initial value was 8 and now under 1, so I am guessing CRP.

 He will be out at 12.


of course here it says crp much more useful in crohns as opposed to UC-always something

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856093/


http://www.ncbi.nlm.nih.gov/pubmed/18566104

OM

Post Edited (Old Mike) : 4/17/2016 10:54:22 AM (GMT-6)

Posted 4/18/2016 4:01 PM (GMT 0)
Still think he should have an endoscopy before long, and wondering about this GI.
If he is still flaring on the pred taper, he needs other meds asap. I am in the hit it hard and fast camp. Rectals too. His immune system is mounting an impressive response. What CM said made sense too though, if they wanted to continue the scope when her was a bit better, then there wouldn't be so much drug interference for the diagnosis.
Boy, they pushed him out quickly. I hope he continues to progress nicely. Is his urgency bad, or mainly frequency?
Posted 4/18/2016 4:42 PM (GMT 0)
They will eventually need to look at what is going on, after sometime on meds.
No urgency, as far as I know.

I think they booted him out fast due to reduction in inflammatory blood markers, but

are they the whole story on mucosal healing.

You can tell somewhat by stool quality,frequency and blood, of which as of yesterday

were not good. Transit time is down.


OM

Post Edited (Old Mike) : 4/18/2016 11:06:28 AM (GMT-6)

Posted 4/18/2016 6:57 PM (GMT 0)
Cipro and flagyl combo has always helped me the a week of rafaximin is good too. I'm late to post, but sorry to read about all this going on :(
Posted 4/18/2016 11:08 PM (GMT 0)
Now we are going to run into some insurance problem, doc I think perescribed lidalia
not on the list, apriso on list but it is for maintenance and not to induce remission.
Might have to force an exemption don't know. No other brand names on list.
I can see a mess coming.
OM
Posted 4/18/2016 11:13 PM (GMT 0)
Lialda isn't on my insurance formulary, but my doctor called and asked for me to continue on it since I respond well to it. My insurance ok'ed it without any trouble at all since it had been on the list before.
Posted 4/19/2016 12:12 AM (GMT 0)
That is good to know momto2.
I know they don't like to pay for brand name drugs, but the list is too limited.
My son is already stressing over this, I might suspect the doc is messing with the ins company
I hope.
OM
Posted 4/19/2016 12:15 AM (GMT 0)
My GI wrote a convincing letter to get my ins to cover VSL DS.... so hopefully your son's GI is a persuasive writer!
Posted 4/19/2016 12:18 AM (GMT 0)
Went to Yale if that helps but from China.

She has sense, did not go more than half way during the scope, tooooo dangerous.
OM

Posted 4/19/2016 12:58 PM (GMT 0)
The stress re insurance coverage is as bad as the stress from the disease sometimes. It is unpredictable, not necessarily rational, requires extreme patience and persistence. My husband is the one with UC and I did most of the footwork on the insurance since it was so inane. I don't know how you do it when you also are sick. I would set aside one hour at least for when I needed to get on the phone about a coverage issue, took good notes, and did my best to be nice.

Doctor's office will hopefully be persistent with the follow up and appeals if medication denied, but you need to keep on top of them too.

Ironically, our insurance company recently approved the Xeljanz prescription ($7K/month) off label, but stopped covering Asacol HD.

Good luck.
Posted 4/19/2016 3:51 PM (GMT 0)
Yea Suzy, I am glad I am on medicare.
I when I select my drug plan I comb through all the ones and pick which ones have the best
selection of IBD meds.Just in case I might need them.

Anyhow the mystery drug is really Delzicol, I can see why the doc picked this or asacol HD,
because of the high dose per pill of active compound as opposed to apriso which is only for maintanece
or some of the others that have lower abounds of mesalamine. Of course sulfalazine is on his list, cheap
generic today, that is what I started on in 1980, but can have more long term side effects, I even
had some difficulty with it from the sulfa part.
OM
Posted 4/22/2016 11:33 AM (GMT 0)
This popped up this morning.

A big analysis of all the 5-asa trials vs sulfa drugs. Not a big difference in any of the drugs,

less side effects from 5-asa, you just need to get at least 2.4 grams of the drug into you.

For me it is a timely analysis.

OM

http://www.ncbi.nlm.nih.gov/pubmed/27101467

Posted 4/22/2016 12:24 PM (GMT 0)
Wow, very interesting, OM.

I was on sulfasalazine when first diagnosed, and a large dose. Never had any trouble with the sulfa component. But when Asacol came out, my GI switched me to it, thinking it would be better. I never noticed a difference, except in my pocketbook, although we have excellent insurance coverage back then, so my personal cost wasn't that much.
Both of those did pretty well for me for decades.
Posted 4/22/2016 4:53 PM (GMT 0)
How is he doing? Symptoms improved? Still just on prednisone?
Posted 4/22/2016 6:26 PM (GMT 0)
Still on 40mg pred, 9 delzicol. Started mesalamine on 20th, not sure if he had any in hospital.
Still D with a little blood, some perhaps stool mixed in with D.
Good spirits, much stronger, but muscle mass severely depleted. Feels good.
No going that often, eating like a horse, but that may be from pred.
I am waiting to see stool formation as a additional sign of healing, and of course no blood.
The time line is getting a little fuzzy but lets see went in on 11th,scoped on 12th, initial diagnoses
c diff, start vanco and flagyl, 13 I think verified no c diff, stop vanco maintain flagyl, believe start
solumedrol, last wed the 13th so he has been on steroids only 9 days,or started steroids on 14th not sure now.
Getting info was like pulling teeth.
Old Mike
Posted 4/22/2016 11:04 PM (GMT 0)
I was down for a bit switching over to win 10, not liking the edge browser so stayed
with ie 11, which I like.
I seem to be fully functional now,will so how this goes.
OM
Posted 4/28/2016 10:25 PM (GMT 0)
Still D but less blood I guess, he is starting to stress himself with the business again.
Chinese gi doc starting to scare me,he went yesterday.
Did not know what med he was on, since the other doc in the hospital prescribed.
Then when he left she forgot to write script, then she changed from mesalamine to azulfadine.
She also mentioned Humira this soon, but she thought he got out of hosp 3 weeks ago but he got out
on the 17th.
Too much typing on computer with these doc's, drive me nuts, also scaring the crap out of me.
But azulfadine only cost him 15 bucks for 180 pills, I guess insurance kicked in but he should have paid
zero, I am sure he blew over 5 grand max out of pocket in hosp.

Oh my.
Old Mike

Post Edited (Old Mike) : 4/28/2016 4:29:30 PM (GMT-6)

Posted 4/28/2016 10:34 PM (GMT 0)
Old Mike

Have him take a look at his discharge papers. I just went to our small local hospital ER and in my papers I was given info about logging into the "patient portal" and found my blood test done there. Still waiting for results of the culture. Notes from radiologist also there from ultrasound too.

My ER visit was not UC related but I think this is the future of patient care, results posted online.
Posted 4/28/2016 11:11 PM (GMT 0)
yes I know he can get results from the hosp patient portal ,while he was in there, still need
to do that so I can read pathology report and other stuff.
The gi doc is doing pretty much by the book, UC treatment.
We will see.
Oh she mentioned to him again that I am not a doctor.
Oh boy if we ever meet,of which I hope not, we might just clash.
OM
Posted 4/29/2016 12:04 AM (GMT 0)
hey OM -

it was probably mentioned somewhere in this thread, but just curious - does he have a wife or someone there with him ? where is he geographically ? are you not able to travel to his location to do some "clashing" ?
Posted 4/29/2016 12:47 PM (GMT 0)
Stud:
He is a single guy,lives in Nevada I am on the East coast.
Will have to get out there at some point.

My worry is that since he does not have formed stool yet that his colon might
be shot. The colon can regenerate from a lot of damage, but there might be some point
of no return. Really need to read the pathology report comments.
OM
Posted 4/29/2016 1:34 PM (GMT 0)
Flights to Vegas are cheap Mike. I'd go visit, I'm sure a visit would help you both, and perhaps you can get the answers you seek (go home w/copy of his case file). Maybe life and being across the country has made you two a little less close, now's a good reason to reconnect...
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