How bad has your crohn's gotten.
- Thread starter kasper87
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Help Support Crohn's Disease Forum:
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- Aug 21, 2008
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kasper.....
I have a very complex case too, I was on so much medication last year, lost so much weight, the chemo and the organ rejection meds, had me down to say the least.
One thing I have to offer you is follow you heart, and remember hope is a wonderful thing! Don't give in please, Biologics are new and I failed them too. Yet I employed a oncologist that changed my meds around and for 9 months I have been symptom free after a nightmare of a story, which can be read here.
last september I was on forty (40) plus pills a day, now I am on less that 10....
I'll keep you in my thought and pray for your healing and hope....
I have a very complex case too, I was on so much medication last year, lost so much weight, the chemo and the organ rejection meds, had me down to say the least.
One thing I have to offer you is follow you heart, and remember hope is a wonderful thing! Don't give in please, Biologics are new and I failed them too. Yet I employed a oncologist that changed my meds around and for 9 months I have been symptom free after a nightmare of a story, which can be read here.
last september I was on forty (40) plus pills a day, now I am on less that 10....
I'll keep you in my thought and pray for your healing and hope....
- Joined
- Nov 12, 2008
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- 2,608
hey kasper
like kim said, try researching experts in your area.
but i agree, if your doc doesnt know what to do with you then its time to seek other opinions.
my weight was crashing too--83 lb at 5'4"--also dealing with the diarrhea and everything. i just had an ileostomy done on april 7th and have already come up to 95 lb. sounds a little drastic, maybe. but my situation was drastic.
despite othe complications, it has slowly been turning the overall health of my body in the right direction.
find a doc who will find solutions for you!
like kim said, try researching experts in your area.
but i agree, if your doc doesnt know what to do with you then its time to seek other opinions.
my weight was crashing too--83 lb at 5'4"--also dealing with the diarrhea and everything. i just had an ileostomy done on april 7th and have already come up to 95 lb. sounds a little drastic, maybe. but my situation was drastic.
despite othe complications, it has slowly been turning the overall health of my body in the right direction.
find a doc who will find solutions for you!
I called my PCP and demanded i get TPN and to admit me for the night or 2 so they can regulate the TPN and teach me how.
I need to gain the weight and it is a good treatment.
I have a G.I appt with one of the top 5 GI's in the nation here in the U.S.
It's in september and i wont last that long without nourishment.
Im taking control and dont care about having a line put in.. i got to do what i got to do and bulk up and get stronger..
i just hope i meet criteria.. veins etc..
I need to gain the weight and it is a good treatment.
I have a G.I appt with one of the top 5 GI's in the nation here in the U.S.
It's in september and i wont last that long without nourishment.
Im taking control and dont care about having a line put in.. i got to do what i got to do and bulk up and get stronger..
i just hope i meet criteria.. veins etc..
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- Nov 12, 2008
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- 2,608
kasper just be careful about infection ok?
a blood infection is NOT what you need right now, im not sure how often it happens with a PICC but i had a couple scares during the times mine were in. any fevers tell them right away!
im glad youre doing something though. finally you can gain some weight and not have to worry about making sure your guts are doing their job nutrition-wise.
a blood infection is NOT what you need right now, im not sure how often it happens with a PICC but i had a couple scares during the times mine were in. any fevers tell them right away!
im glad youre doing something though. finally you can gain some weight and not have to worry about making sure your guts are doing their job nutrition-wise.
fenway1971
Sports Crohnie
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- Aug 12, 2008
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- 1,753
hi kasper -
i echo other's thoughts here...follow your heart and instincts. it's your body and only YOU know what's wrong with it and how to make you feel better.
where are you in the US? are there other GI's nearby that can see you immediately?
i echo other's thoughts here...follow your heart and instincts. it's your body and only YOU know what's wrong with it and how to make you feel better.
where are you in the US? are there other GI's nearby that can see you immediately?
- Joined
- Mar 29, 2008
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- 861
PICC line infections are common. We've always got at least one on the floors. They're especially hard on us too because they're usually put in because a patient is nearly impossible to get blood from, and then on top of that we can't stick an arm with a PICC in it. Yet we have to get a lot of blood to do cultures with in addition to everything that would have been taken out of the PICC if it wasn't infected. We often have patients in here for an extra month or more just waiting for the PICC infection to go away.
My Butt Hurts
Squeals-a-lot!
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- Aug 2, 2007
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At my worst, I was 96 Lbs at 5'8". Luckily I never had too much pain, diarrhea 15 x a day was my worst symptom, and I had 10-20 seconds to get there. I'd wear my daughter's diaper like a big pad to go to the store last summer. My mom wanted to take me to Mayo too.
If your own doc wants to send you elsewhere, it's time to go see someone.
Hope the picc line works for you. Good luck!
If your own doc wants to send you elsewhere, it's time to go see someone.
Hope the picc line works for you. Good luck!
