Hi...diagnosed with Crohn's over summer. Symptoms not awful, no pain or nausea, some blood in stool and on toilet paper. Took 1 1/2 mos. of budesonide and went on sulfasalazine. Had a horrible reaction to sulfasalazine and have been off since September and not on anything else. All was going pretty well but in the last few days, have had gobs of blood coming out of me a few times a day. Started back on budesonide two days ago but still seeing blood. I just went to bathroom and it is amazing all the blood coming out, gobs and the water is red. I have some prednisone here and just took that. How much blood is it possible to see? How bad can this get? Is this safe? I certainly was never warned of this.
How much blood is too much blood?
- Thread starter AgentM
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Please call your Gi
Do they know you took budesonide (oral steroid) with prednisone ( another oral steriod )?
Call the on call doc if you took both without the Gi telling you to do this ?
Also call and let them know about the bleeding
How much blood , how many times , what color etc...
Let the on call doctor know all about it
That is what on call docs are there for .
Call the doctor ASAP
Do they know you took budesonide (oral steroid) with prednisone ( another oral steriod )?
Call the on call doc if you took both without the Gi telling you to do this ?
Also call and let them know about the bleeding
How much blood , how many times , what color etc...
Let the on call doctor know all about it
That is what on call docs are there for .
Call the doctor ASAP
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^^^THIS^^^
I'm a scosche autistic on a good day, and downright unfathonable on a rough one, so this may not come out well
.... its why I don't post much on forums
Blood in the stool is some scary ****
Itss' crazy how just a little, teeny, tiny bit of blood will make the toilet bowl look like one of the darker verses in the chapter of revelations
It is what it is
We all go thru it at various times during the desease and treatment, and others will chime in with beter advice than I on that topic
the color of the blood and the other stuff in the bowl will tell many tales, and the folks here have more experience than doctors on stuf like ythis because we live it
but, straight up man,
you have got to call your g.i. clininic RIGHT NOW
I get that the blood is unsettling, but if you were mostly asymptomayic and had a relatively mild case
(look aroundnthis board, there's some folks that really suffer deep and hard)
something has changedd and needs to be looked at STAT
You and I, we're in the same boat
Bad comunication with the dosctors had put me in a spot or two this part year
they have made choices that didn;t work for me and some of the results we downright didastrous
things really went the wrong way, andd only got worse
One particurarliy bad day I was watching the sunset wondering how much more it could hurt, how much worse it could get,wondering why my doctors sucked so bad and i did damn near the exact same thing you did
... self medicated ...
gotta tell ya it cause me problems in my gut and in my clinic
the call to the clinic sucked, their attitude about it sucked, sitting in the waiting room sucked, talking to the dr sucked, the nurses sucked
... I stepped outside for a cigarete, and talked to an old dude also having a smoke
"dude, done messed up some, but you got this,
just gotta fight harder, make these folks listen and work together,
right now, you need some help on a personal level
make the call and get some help"
it was at that point i made the decision to fight and fight hard
had to reach out to some mental health resources, and that was really tough for me
i just didnt know where else to turn, and i needed help, so yep, made the call
best damn choice i ever made!
took three different "professionals" before i found someone that gets what chronic medical condidtiions can do to a mans soul, but i just stuck with it and told them the truth, the whole truth and nothing but the truth
i decided to make the doctors work for me
i was not just going to sit there and listen, do what they say
i was going to ask questions, and lots of them
but, right now, you gotta tell the clinic what happened
make the call
I'm a scosche autistic on a good day, and downright unfathonable on a rough one, so this may not come out well
.... its why I don't post much on forums
Blood in the stool is some scary ****
Itss' crazy how just a little, teeny, tiny bit of blood will make the toilet bowl look like one of the darker verses in the chapter of revelations
It is what it is
We all go thru it at various times during the desease and treatment, and others will chime in with beter advice than I on that topic
the color of the blood and the other stuff in the bowl will tell many tales, and the folks here have more experience than doctors on stuf like ythis because we live it
but, straight up man,
you have got to call your g.i. clininic RIGHT NOW
I get that the blood is unsettling, but if you were mostly asymptomayic and had a relatively mild case
(look aroundnthis board, there's some folks that really suffer deep and hard)
something has changedd and needs to be looked at STAT
You and I, we're in the same boat
Bad comunication with the dosctors had put me in a spot or two this part year
they have made choices that didn;t work for me and some of the results we downright didastrous
things really went the wrong way, andd only got worse
One particurarliy bad day I was watching the sunset wondering how much more it could hurt, how much worse it could get,wondering why my doctors sucked so bad and i did damn near the exact same thing you did
... self medicated ...
gotta tell ya it cause me problems in my gut and in my clinic
the call to the clinic sucked, their attitude about it sucked, sitting in the waiting room sucked, talking to the dr sucked, the nurses sucked
... I stepped outside for a cigarete, and talked to an old dude also having a smoke
"dude, done messed up some, but you got this,
just gotta fight harder, make these folks listen and work together,
right now, you need some help on a personal level
make the call and get some help"
it was at that point i made the decision to fight and fight hard
had to reach out to some mental health resources, and that was really tough for me
i just didnt know where else to turn, and i needed help, so yep, made the call
best damn choice i ever made!
took three different "professionals" before i found someone that gets what chronic medical condidtiions can do to a mans soul, but i just stuck with it and told them the truth, the whole truth and nothing but the truth
i decided to make the doctors work for me
i was not just going to sit there and listen, do what they say
i was going to ask questions, and lots of them
but, right now, you gotta tell the clinic what happened
make the call
Thanks so much for the very thoughtful replies! I did call the clinic and they tested my blood, which was fine. However, I do have a big problem with all the bleeding. It's been 11 days now and it looks like a murder every time I go - 10x/day. They gave me prednisone which I stopped taking for a few days because I got a sinus infection from getting dehydrated. This is unbelievable, totally unbelievable. The GI is going to do a sigmoidoscopy to see what's going on. I've been on Proctofoam which was OK until it wore off mid morning. I started Uceris last night but still lots of blood. Ugh!
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Does the doc know you stopped the prednisone ?
Steriods shouldn’t be stopped unless your gi tells you to specifically stop it .
Good luck with the scope
Steriods shouldn’t be stopped unless your gi tells you to specifically stop it .
Good luck with the scope
I tapered off before I stopped but am starting again today. I took the budesonide instead so atleast I had something. Sinuses are a little better today but today the CPR test result is up to 7.1 (from 2) and the Calprotectin is at 1113. I'm freaking out a bit!
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But did you tell your Gi ? Did your Gi tell you to stop oral prednisone in the middle of a flare ??
Did your Gi tell you to start the oral buesonide again and not take prednisone?
you are actively flaring which is why your Gi wanted you on oral steroids such as prednisone to treat that flare .
When you stop the steriods the inflammation gets worse and harder to calm down the next tune you start prednisone orally.
Buesonide only treat part of the Gi tract and not the whole thing .
Did you Gi tell you to switch from prednisone to oral buesonide ?
Your Gi needs to be directing your treatment .
If you don’t agree with the treatment plan then please seek a second opinion
But continue the meds as prescribed until your second opinion Gi tells you a different plan
flares can led to iv steriods ,inpatient stays or worse .
Your Gi is trying to calm the inflammation down but if you don’t agree with plan -talk to your Gi before you stop or start ANY meds .
Did your Gi tell you to start the oral buesonide again and not take prednisone?
you are actively flaring which is why your Gi wanted you on oral steroids such as prednisone to treat that flare .
When you stop the steriods the inflammation gets worse and harder to calm down the next tune you start prednisone orally.
Buesonide only treat part of the Gi tract and not the whole thing .
Did you Gi tell you to switch from prednisone to oral buesonide ?
Your Gi needs to be directing your treatment .
If you don’t agree with the treatment plan then please seek a second opinion
But continue the meds as prescribed until your second opinion Gi tells you a different plan
flares can led to iv steriods ,inpatient stays or worse .
Your Gi is trying to calm the inflammation down but if you don’t agree with plan -talk to your Gi before you stop or start ANY meds .
Yes...there's two doctors involved...one for flares, other GI. Flares told me NOT to take prednisone but use foam although I told her I had started prednisone. GI nurse also added that prednisone is not likely to get to area where I need it. Both GI and Flares doctor know about prednisone and budesonide. GI had me on budesonide over the summer. GI also knows I went off the prednisone. GI said to start prednisone again at 20/mg day, no mention of the fact that I had stopped it causing a problem as you said. Why wouldn't she have told me that?
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Prednisone doesn’t cause a problem
There are long studies over many years ...where each flare gets harder to control with steriods
So it’s not a short term thing
Where you take steriods once stop and next time they don’t work
It’s many flares over many years (decades )
Sorry for the confusion
Foam Uceris is topical - Ds has used it before
Prednisone is systemic
Some docs use both
Some use one or the other
Flares are part of crohns
But can be minimized somewhat with the right maintenance. Ds has tried them all and takes Stelara plus mtx right now
Unfortunately what that med may be that actually works varies greatly by person
Why two Gi ?
Can they talk to get a unified game plan for you ?
That would be very confusing
Ds has multiple specialists but only one of each
Including only one Gi - even if he is flaring -same Gi
There are long studies over many years ...where each flare gets harder to control with steriods
So it’s not a short term thing
Where you take steriods once stop and next time they don’t work
It’s many flares over many years (decades )
Sorry for the confusion
Foam Uceris is topical - Ds has used it before
Prednisone is systemic
Some docs use both
Some use one or the other
Flares are part of crohns
But can be minimized somewhat with the right maintenance. Ds has tried them all and takes Stelara plus mtx right now
Unfortunately what that med may be that actually works varies greatly by person
Why two Gi ?
Can they talk to get a unified game plan for you ?
That would be very confusing
Ds has multiple specialists but only one of each
Including only one Gi - even if he is flaring -same Gi
Oh, I see, so from flare to flare the prednisone might not work as well. That's good to know.
Too bad there is such a variation in what works. Makes it very difficult. I had a terrible reaction to sulfasalazine and the doctor was puzzled as to why. My CRP went from 2 to 51 and I felt horrid.
One dr. does the flares and one is the main GI. I don't know why, I thought it was strange as well. It's a big hospital and maybe they don't have the time but need the flares doctor to help. I am now taking orders from the main GI.
Too bad there is such a variation in what works. Makes it very difficult. I had a terrible reaction to sulfasalazine and the doctor was puzzled as to why. My CRP went from 2 to 51 and I felt horrid.
One dr. does the flares and one is the main GI. I don't know why, I thought it was strange as well. It's a big hospital and maybe they don't have the time but need the flares doctor to help. I am now taking orders from the main GI.
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5-ASA are the lowest in the pyramid of drugs
Least effective and least risk - sulfanazine fallls in that caregory
immunosuppressants are next
6-mp/aza are one class
Methotrexate (pills or injection ) other class
these work for some as monotherapy
biologics
Remicade infusion (iv ) every 4-8 weeks
Easy dosing and works in 6 weeks
Long safety record for crohns decades
Used in kids and adults
this is anti tnf alpha drug
Humira is same category injection
Every two weeks
takes three months to work
Cimiza /simponi similar to remicade /humira
Used less
Lower success rate in crohns
injection /iv
entyvio-iv takes 8-12 months to works
Seems to work better on colon or UC disease
Stelara -iv to start then injection every 4-8 weeks
Takes 8 months on average to work
Blocks IL-12/23
Works better on small intestine than colon
Xeljanz is a JAK inhibitor (pill) that has other side effects as a parent I am not fond of ...
But I think is approved for UC not crohns
As far as reactions
Ds has had anaphylactic reactions to food more than once as well as two different biologics (one iv remicade -and one injection for auto inflammatory condition)
At two different times - steriods were given as well as an epi pen and he was good
He has been on a total of 5 different biologics in 10 years (3 for crohns plus 2 for auto inflammatory condition)
He has been perfectly fine on humira after remicade reaction and later Stelara-no issues
Same with biolgics for auto inflammatory
He had the reaction abd then switched to a similar biolgics 3-4 years ago abd no issues
I would have a long discussion with your Gi before ruling out a whole class of drugs based on injection /iv
it’s hard
Good luck
Least effective and least risk - sulfanazine fallls in that caregory
immunosuppressants are next
6-mp/aza are one class
Methotrexate (pills or injection ) other class
these work for some as monotherapy
biologics
Remicade infusion (iv ) every 4-8 weeks
Easy dosing and works in 6 weeks
Long safety record for crohns decades
Used in kids and adults
this is anti tnf alpha drug
Humira is same category injection
Every two weeks
takes three months to work
Cimiza /simponi similar to remicade /humira
Used less
Lower success rate in crohns
injection /iv
entyvio-iv takes 8-12 months to works
Seems to work better on colon or UC disease
Stelara -iv to start then injection every 4-8 weeks
Takes 8 months on average to work
Blocks IL-12/23
Works better on small intestine than colon
Xeljanz is a JAK inhibitor (pill) that has other side effects as a parent I am not fond of ...
But I think is approved for UC not crohns
As far as reactions
Ds has had anaphylactic reactions to food more than once as well as two different biologics (one iv remicade -and one injection for auto inflammatory condition)
At two different times - steriods were given as well as an epi pen and he was good
He has been on a total of 5 different biologics in 10 years (3 for crohns plus 2 for auto inflammatory condition)
He has been perfectly fine on humira after remicade reaction and later Stelara-no issues
Same with biolgics for auto inflammatory
He had the reaction abd then switched to a similar biolgics 3-4 years ago abd no issues
I would have a long discussion with your Gi before ruling out a whole class of drugs based on injection /iv
it’s hard
Good luck
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Fwiw Ds was dx at age 7
And tried
Pentasa -1month
6-mp
6-mp plus allopurinol-8 months
Methotrexate injections- 3 months
Remicade -8 months
Humira
Humira plus mtx (pills ) -5 years
And now Stelara plus mtx (pills ) over 3 years
He will be 17 soon
And tried
Pentasa -1month
6-mp
6-mp plus allopurinol-8 months
Methotrexate injections- 3 months
Remicade -8 months
Humira
Humira plus mtx (pills ) -5 years
And now Stelara plus mtx (pills ) over 3 years
He will be 17 soon
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Pentasa is a newer generation pill of sulfanazine
It only treats the surface layer of the intestine
And not the through thickness
UC affects the surface
Crohns affects full thickness
It only treats the surface layer of the intestine
And not the through thickness
UC affects the surface
Crohns affects full thickness
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Remicade he had an allergic reaction (murine -mouse protein in it )-
Other biologic auto inflammatory kineret had allergic reaction to ecoli in it
Other biologic auto inflammatory kineret had allergic reaction to ecoli in it
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Kineret is a biologic against iL -1 which is attached to ecoli as the protein
https://www.kineretrx.com/pdf/An-Introduction-To-Kineret.pdf
He started long after he was diagnosed with crohns and the medicine did not make his crohns worse .
His kineret daily injection was held by the hospital for a few days since he was in steriods . When he restarted the med -allergic reaction
https://www.kineretrx.com/pdf/An-Introduction-To-Kineret.pdf
He started long after he was diagnosed with crohns and the medicine did not make his crohns worse .
His kineret daily injection was held by the hospital for a few days since he was in steriods . When he restarted the med -allergic reaction
