Weird Crohn's Part 2 OR NOT?

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imaboveitall

imaboveitall

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Feb 9, 2012
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It feels wrong when threads I start get over 3 pages so I keep starting new ones as things change...:shifty-t:

Now The Saint seems to be coming around to what I've been saying...that V's malaise was not from IBD.
The latest LFs being higher and her presentation not aligning is why.

V HERSELF said she thinks the pred helped because it made her retain so much fluid that her blood volume expanded and therefore the cardiovascular aspect of her dysauto resolved.
DUH. Ding ding we (maybe) have a winner. She kills me.

So after emailing about this The Saint said, "let's do another trial of Florinef but higher dose" and see if that does it.
If it does, then we know it was dysauto all along and not IBD causing the weakness.
He's still down with naltrexone if this doesn't work.
Thank GOD for him. What doc emails back and forth about this on a Fri night/Sat morn?
:medal1:
 
God, I hope Stephen's new GI is a Saint too! :lol: I've looked up his bio and he seems very accomplished, involved/led international projects and research, etc. re the genetic role in IBD but NOWHERE does it say he emails patients in the evenings! :lol:

How wonderful if either the Florinef or LDN did the trick for V!!! :D
 
I feel so good about this plan, it was like a heavy lead cloak was lifted off me when I knew I could d/c Humira. Every time she took it I felt a sick dread. I'm glad it didn't work and I could justify d/c. :dance:

So either it's all dysauto and a relatively safe fix, or it's IBD and we have the pred to naltrexone plan to fix, which we know now that pred works in her case, so a huge relief.
Yay us. :yoshijumpjoy:
 
It feels wrong when threads I start get over 3 pages so I keep starting new ones as things change...
Click to expand...

Don't go looking at my threads then! :eek2: :lol:

It's so fab you have a Dr Wonderful in your corner...:thumleft:

And what about V! Kudos to Sherlock! :award2:

Dusty. :Flower:
 
Dusty, I know, isn't it hilarious? She put it together after her BP was in normal range for the first time at PT. :biggrin:
 
I SO hope this new plan works for V!! Love hearing that she continues to feel well. My only concern is that you might go through some sort of withdrawal if you aren't able to continue your weekly poop sleuthing :ylol2:.
 
HA Shelley... The Saint still wants weekly poo...why I dunno as he admitted the LF isn't reflective of her disease level...he's adding calprotectin...I think he may be oddly fixated on either the poo or these poo tests...:shifty-t:
 
:rof: on the weekly poo.
We have not had to "do" a sample yet since Ds blood seems to reflect if he is really bad.

Hope the new plan works for V.

:goodluck:
 
Don't I know it...and he isn't a young feller, he is around 60 and has health issues himself...God love him, he told me he's placed an NG tube in himself to demonstrate to a scared kid how painless it is...offered to for V but she was like, that's ok....:biggrin: I wish all could have a doc like him.
 
Wait, J...is *he* obsessed with the poo...or is it you?!? :p I'm sure there is a medical term for this- fecal fixation??
 
HE is the Fecally Fixated one, not I...I just benefit from his FF. :shifty:
He's still doing weekly LF and has added calprotectin even though he now says LF likely isn't valid in her case...so what does THAT tell you? :ywow:
 
hahaha! Suppose there's a support group for those with fecal fixation? nah, just become a GI...
 
Heya Shelley, thanks for thinking and asking :heart:

The very DAY she started the higher dose Florinef she started to feel bad again BUT it turned out to be a viral thing and I have it too. Where's my friend...:voodoo::voodoo: ah that feels better...

It's a really bad bug, we both still are sick seven full days later here and now the 12 y/o who gets sick maybe every five years (I honestly can't recall when last she went to the doc other than yearly ck up) has it so I know it's a bad un.

Sooo no way to assess Florinef effect until the bug is gone and we can see how she feels at baseline.
But I'll tell you, knowing the pred worked literally like an instant fix makes me feel so much better. I know we can always use it if these other things keep failing, and even maintain her on a low dose long term if need be.

I know you can relate to this one, I hate waiting and limbo states...stabby time again for us both :voodoo::voodoo:
 
I'm sorry you all haven"t been feeling well! Hopefully, the viral bug high-tails it out of there and this week finds you feeling better.

It's good to know you have pred to fall back on. Hoping you don't need it though! Limbo sucks the big one for sure!
 
Oh dear that does sound like a horrible bug. Hope you all feel better soon! It's not like our poor kids have enough to deal with without getting "regular bugs"!!
 
Sorry you couldn't get a "true" idea if it was working
Sending healthy vibes your way and lots of luck the new drug improves things.
:getwell:
 
I hope things settle soon hun for all of you!...:getwell:

Dusty. x:heart:x:heart:x
 
(Had posted this comment on the wrong thread... :blush:)

But wanted to say I love your new pic in your signatur! She's such a pretty girl!! :)
 
We love pred, pred loves us

Hey friends,
Started old V back on pred 60mg x 2days, dropping by 10mg/ day after that down to 30mg day for two weeks.
Within SIX HOURS of the first dose, she said the constant "brain fog" had lifted.
The right lower back pain (TI?) she'd had for a week or so...gone.
Energy better, not great yet but way better.

Just giving all an update.
Much love and THANKS to all you great girls for listening and caring :ghug:
 
That's great! I had been looking down the list to see if you had updated lately - not stalking honest :ysmile:.
Must feel so nice for her to feel good again!
 
Thanks for the update hun...:hug:

So fab to hear that V is starting to feel better again...bless her!

I know you have said many a time that you wish V could have surgery, what has the GI said to you about, particularly in view of the fact that Humira is not working?

Dusty. xxx
 
Dusty's Brain, my love, he isn't into surgery, old school in that way, he says "once they start cutting they usually have to keep cutting", I do NOT agree, that's the only point upon which he and I disagree.
Her symptoms aren't bad enough that I think a surgeon would do it either; if I could hire one myself I would. I have doc pals but none are surgeons or they'd do it for free. :wink:
 
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Great news!

Surgery? Hmmm...that is assuming all that is bothering her is really from her IBD and not the undiagnosed something else huh? I still think you are going to find that mysterious thing that the Prednisone is treating. Call me crazy but years ago my mother suffered from auto immune hepitistis (sp)...had horrible joint pain...they tried everything...was at her ropes end then one day she got strep throat and got some wicked antitbiotic and bam joint pain gone. They never did find out what was causing the joint pain but that was years ago and no pain since!
 
So glad V is feeling better again!! Whatever it is, I'm glad you've at least found that the pred can alleviate the symptoms! :thumleft:
 
Yep, Cinc, I said as much to The Saint. At the very least, I think pred which causes fluid retention is expanding her blood volume, ergo, cardiovascular aspects of her dysauto are relieved. Her cortisol (I've asked for it be checked three separate times) is always borderline and it of course boosts that, and suppresses inflammation. It addresses all of her issues at once.

The plan last week was to see if Florinef could do what pred does but it didn't, even at a higher dose, I think because inflammation is a PART of the picture and Florinef doesn't fix that.
The TI is indisputably inflamed and has been unrelentingly so for almost four years now. Surgery would take at least that part of the problem away. Then perhaps lesser drugs like Florinef would help her be normal.

Don't you all love the back/forth, up/down style this disease has? What fun...:hallo3:
 
Damn and blast. I wonder if he would ever come around. Just me thinking out loud hun so this is not aimed at you :) ...

To me V's symptoms are persistent and they do impact significantly enough on her day to day functioning for surgery to at least be considered. I know I am preaching to the converted! :lol:

Plus, what if, even if a teensy bit what if, the other issues that V is experiencing are EIM's of her Crohn's. Can they truly be ruled out as not being related???

There ya go, no solutions just more questions! :eek2:

Dusty. xxx
 
^^^
Yup, what she said.
I know you love your doc...

...but any chance of consulting another GI?

All of the GI's we've met are fantastic about working in conjunction with each other.
 
Her CDAI is so low there's no way ins would pay for it even if a rogue surgeon agreed. She's also barely been on any meds, impossible to argue she's exhausted all options. Her global health is excellent, nutrition excellent, growth/development excellent. Labs barely off and TI "moderately" inflamed, no stenotic areas, no scarring, no stricture, no ulcerations; there's no way they'd resect that bowel.
But I would if given the chance.:shifty-t:
 
Ugh, everything else aside I keep forgetting about the insurance aspect of things. :(

Dusty. xxx
 
Yeah, and the bowel is just too healthy to justify removal. In four years there's been no progression, just status quo.

She's feeling good on pred; she has the opposite reaction from common, i.e., eats LESS, sleeps MORE, feels stable and happy, brain fog is relieved. She needs a cortisol boost, I'm convinced of it. God, how I wish I'd tried this ages ago. I told you gals doc friends have been telling me to put her on pred for years, though The Saint never has pushed for it. I wish I'd listened.
 
Well, at any rate I am glad she is feeling better now.
Wish you had a clearer picture, though. :(
I guess we are lucky insurance wise...we can see as many GI's as we want as long as they are in network (which, of course, none of the large childrens hospitals are).
J, hindsight is 20/20. Don't beat yourself up. (((HUGS)))
 
Ditto! Don't second guess yourself. You do the best you can at each stage and I repeat...the way this disease is and changes daily and with kids systems changing and maturing...there is no way you could be sure if you tried it back when, it would have worked. How many times do you hear the stories of this or that drug working great then a long time later they stop working. It is working now and that is what is important!
 
The second or third opinion would be covered; The Saint, God love him, has asked if I want to take her up to DC to see a fella there, or Northern VA, or back to UVA where she saw the Guru. He gave me names of all three.
I just know enough medicine myself to know that no doc would support sx at this time in this case.

Angie, yep, I only care that I have a drug now that has her out of bed. Honestly. I am so sick of dealing with illness, and worry, and sadness, and her missing months of her life, whatever fixes that I'll do. I really thought Humira would do it; but I'm a lot more comfy with pred, even long term.
I know you guys understand. Desperation to get them better overrules all else.
 
Hey all,
V's back to normal and at SCHOOL :study: again!
That's after five months of homebound tutoring.
Still on 30mg pred/day and ZERO adverse effect.
ZERO.
Paradoxical reaction if anything, i.e., sleeps more and better sleep pattern, eats WAAAY less and better (lots of protein no carbs), perfect mood. no hyped up feeling, no weight gain (lost 3lb), brain fog lifted, feels perfect.
This is atypical I know and I believe is due to her having chronic hypocortisolism.

Ok I'm gonna go catch up now.
Much love and thanks to those who emailed me worried...now I feel like a fair weather friend. :eek: :ghug:
 
V's doing so well you may have to find a new 'smiley' friend!... say goodbye to :voodoo:
 
That is awesome news! So would pred. be the generally prescribed med for chronic hypocortisolism? And please bear with me here but a few questions, all these meds no matter the class are used to hopefully induce remission but just a remission of symptoms? I mean if the Remi takes away ab pain, joint pain etc but a colonoscopy or CTE still shows moderate inflammation in his TI do they consider that remission?
I'm so glad V is able to get back to school, I know they miss the social interaction and C has even said the structure of schedules(amazing from an happily unorganized 15 year old boy!!) Hope it all continues onward and upward!!:ybiggrin:
 
Yay, that's great news!!! We were all worried about you - wondering where you had got too. Nice to know it was good stuff keeping you busy! :ybiggrin:
 
Thanks girls! :D

Clash, if inflammation is present that is NOT remission, period.
V was in "clinical remission" for three years, i.e., she felt great and had no symptoms. But her TI was inflamed all the while so she was not in "biochemical remission".
Yes, pred, Cortef and Florinef are used to treat Addison's. V does NOT have an Addison's dx but her peak a.m. cortisol is always borderline low. This is why I think she is doing so well on pred.
 
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I'm so glad the pred is working for her! I had been wondering what docs considered remission, I mean as long as there are no symptoms does the med remain the status quo until symptoms reappear I just want to make sure I understand all the lingo when the next Dr. Appt rolls around so I will be on the same page as the GI! Thank you so much and so sorry for hijacking the thread! Congrats to V again!
 
Clash, NO, absence of symptoms does not mean status quo shall be maintained.
The Saint ALWAYS wanted to put old V on drugs, always. Even though she felt awesome and lived like she had NO disease at all, he knew she did and was always worried about progression to the point of stricture.
He however deferred to us because he is a Saint like that and never pushed nor made us feel wrong for going against his way.
Dusty's kids are an extreme example of what can result from undertreatment. I have read of many cases on here of little or no symptoms, even normal labs (V's were close to normal all along) and extensive disease co-existing.

I focused on QOL. I knew I was risking disease progression by undertreating. Knew it. But as long as she felt great, I refused drugs.
I'm just thrilled she is doing well on pred, but again that has to be due to low cortisol so not extrapolative.
Interestingly, she has had NO progression. In almost four years now, her disease level remains the same.
 
I just feel like we are in that freaky limbo right now, one loading dose of Remi in, but 8 weeks of 40mg of pred before Remi and now tapering. The pred did not decrease the inflammation but his symptoms were not as severe as pre meds. Now during the taper I notice things that seem to be the start of symptoms coming back but I don't know if i trust myself because I feel hyper observant. So summary becomes hate pred-nasty side effects, scared to taper what if symptoms come back, cant wait to taper and hope Remi is working...how can I possibly decide anything rational at this point! Ughhh! It is so good to read all the posts from you guys, comforting experience and knowledge. Thanks again!
 
Clash - so sorry hugs to you at this confusing time. O responded to Prednisone and when tapered little symptoms here and there. I tried not to get too crazy about it although our IBD nurse might say differently. I just emailed her once a week the details of each day and let hem decide whether to be concerned. Eventually the blood taken at infusion told them what they needed to know and doc has decided she is responding to Remi but we need to support it with something else.

When is your son's next infusion? Those blood results should give you a better picture. Do you have a good relationship with nurse at docs office. Maybe just call her with an FYI. Haha...I am about to do the same..update on Olivia's thread.
 
So glad V is feeling well and back at school!!! Feeling good just in time for summer woohoo!

Noticed you were MIA....need to let a soul sister know before you do that again. Otherwise, she worries needlessly ;-)
 

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