How do you know when to go to the hospital.....?

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WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 1/5/2009 11:03 AM (GMT -6)   
Folks,
I have already gone 8 times this morning. Blood has increased dramatically. All of this got worse after I saw the new GI at Beth Israel. He took me off the asacol, told me to taper the hydrocort enema (even though I still bled 2x a day with an avg of 3 BM's) and switched me to sulfasalzine. (4 pills 2x a day). This was on 12/24.
 
This morning I called my GI and have not heard anything back. I know 6MP is the next step but I am bleeding so much and have a lot of pain in my stomach - spasm pain when I go.
 
I just left my old GI a message...because she usually gets RIGHT BACK TO ME. I am going to be embarassed to tell her I went to someone else....but I need help bad.
 
Any advice?
 
I have not taken the sulfasalzine this morning. I did a hydrocort enema last night too.
 
I feel like I did a year ago when I was hospitalized....
sever ulcerative proctitis - march 05 diagnosed
current status - trying to see what works - still bleeding!!!!!
hospitalized - 3/08 for 6 days of IV steriods
colazal - 9 pills  asacol - 12 pills, 4 pills 2x a day - sulfasalazine (started 12/24/08)
canasa 2x per day, nightly hydrocortisone enemas - tapering
VSL#3 Primal Defense Ultra Probiotic (2x per day)
fish oil, calcium w/ vitamin d 2x a day, curcumin, prenatal vitamin & extra vitamin c and b12
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/5/2009 11:19 AM (GMT -6)   
I'd try your GI's office once more. Ask to speak with a nurse and tell them it's an emergency. If you can't get a response, I'd go to the ER.

Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 1/5/2009 12:09 PM (GMT -6)   
I've never been hospitalized, even when going 15-20 times a day with tons of blood. If I were having severe pain, I would go but that's never been the case for me.
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


benjwl123
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/5/2009 12:21 PM (GMT -6)   
I have been in the hospital for 3weeks and counting . What prompted me to go was the fact that I lost count about how many trips I was taking to the bathroom, I was dehydrated, throwing up, could not eat and had no color in my face and no energy to do anything. None of the meds were keeping things at bay. It really depends how you feel you are and if you need to be seen before the doctor can repsond then I would listen to my body and go to the ER if I felt my dcotor was not responding in a prompt manner.
Diagnosed with UC since 1999
Current Meds:
 
Sulfasalizine 500 mg tabs 2x's daily
Rowasa enema 2x's daily
Colocort Enema 1x daily
Prednisone during active flares
Imuran 6 months in 2006 (Joint Pain) Stopped
Florastor Probiotoic
Bentyl for cramping
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/5/2009 3:08 PM (GMT -6)   
I have had severe flares and pain like described, but only went to the hospital when I was severely anemic and horribly weak. Then I only stayed two days. Even when we were talking surgery (before I got 5-ASA protocol) I was not admitted, and didn't want to be. I'd rather suffer privately at home.

The ER can be miserable, I hope you can get admitted without having to go through the ER if you want to be hospitalized. Is there anyone with you?
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days. 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 1/5/2009 3:15 PM (GMT -6)   
     I believe your next step is prednisone.  It is the only drug that helps me attain remission.  Hate to take it, but ...oh well.  I would go to the ER if I were you.  Do not be embarrased because you got a second opinion.  I am still with the same GI who diagnosed me ten years ago when I was first hospitalized, but he knows I have seen a proctologist, another GI doctor and GI surgeon within those ten years for other opinions.  He wasn't thrilled either, but he got over it.  It is your health, not the doctor's and you have every right to seek other opinions.  Some doctors think they are Gods, if that is the case I would look elsewhere.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 1/5/2009 7:38 PM (GMT -6)   
I went to my old GI this afternoon since the new Dr. at Beth Israel never called me back or didn't for 6 hours. My old GI said that of course I would get worse since he decreased my meds (tapered cortenema and put me on sulfasalazine from asacol). She said to go back to asacol and my enema to see if I get better or get back to my baseline where I was before I saw the new GI who switched my meds. She said my next step is 6MP...but I have to willing and ready....which means that I would have to not try to conceive for a few years....WHICH I AM NOT READY TO GIVE UP ON.

Anyway, thank you all for your replies and support. I am not sure what the flip to do. Stay with old GI who thinks cortenemas are not that bad.....and who wants to see me get pregnant...or new GI who said cortenemas are terrible and wants me to go on 6MP for my proctitis.

Its like a double edge sword. I am soooo depressed right now and sad and lost and confused.
sever ulcerative proctitis - march 05 diagnosed
current status - trying to see what works - still bleeding!!!!!
hospitalized - 3/08 for 6 days of IV steriods
colazal - 9 pills  asacol - 12 pills, 4 pills 2x a day - sulfasalazine (started 12/24/08)
canasa 2x per day, nightly hydrocortisone enemas - tapering
VSL#3 Primal Defense Ultra Probiotic (2x per day)
fish oil, calcium w/ vitamin d 2x a day, curcumin, prenatal vitamin & extra vitamin c and b12
 


pant pooper
Regular Member


Date Joined Dec 2008
Total Posts : 27
   Posted 1/5/2009 9:01 PM (GMT -6)   
Good God please go to the ER I had this several times and the longer you take to go to the hospital the longer your stay will be, the hosptal is the worst experince,and if you are loosing that much blood its only going to be worse

yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 1/5/2009 11:35 PM (GMT -6)   
wishful, I am so sorry to hear how sick you have been, and will keep you in my prayers. It sounds like your 2 docs are making you even more confused. It does sound like your old doc is a bit more caring, but that is obviously a choice you have to make. You take curcumin, I would try it in a drink form, Haldi is what I drink, and I think in the liquid form it is more effective/absorbable, you can find it online or at most whole foods markets. Good luck.

-------------------------------------------------------------------------------

yuckygut

diagnosed 1998

now off prednisone and colazal

drink 1 Haldi daily to remain in remission

Sulley
Regular Member


Date Joined Jun 2007
Total Posts : 38
   Posted 1/5/2009 11:45 PM (GMT -6)   
the time that i was hospitalized, i called my GI's office but he was out. I had the on-call call me back and told him my symptoms. he told me that he would call the hospital so that i could be admitted without having to go through the ER. when i got there they took me up to my room where i met a very nice guy with crohn's disease who had some very very bad problems.

try to get admitted without having to go through the ER.
pan-UC dx'd June '06, remission for one year, now flaring. 7/8-7/9 in hospital, 2nd colonoscopy showed it was left-sided this time.
 
4x2 asacol
3x3 750 colazal
50mg 40mg 30mg 20mg 15 pred on 8-06-07
2x1000 canasa
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/6/2009 9:18 AM (GMT -6)   
WishfulMA said...
Anyway, thank you all for your replies and support. I am not sure what the flip to do. Stay with old GI who thinks cortenemas are not that bad.....and who wants to see me get pregnant...or new GI who said cortenemas are terrible and wants me to go on 6MP for my proctitis.

I'm puzzled. Why is 6MP - a powerful, systemic immunosuppresant drug - less dangerous than topical, localized steroid enemas?


Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 1/6/2009 10:51 AM (GMT -6)   
I agree....I am puzzled too. 6MP and remicade are both big decisions and obviously if I decide to take either of them, I am going to have to move onto adoption. I am so confused and scared!!!
sever ulcerative proctitis - march 05 diagnosed
current status - trying to see what works - still bleeding!!!!!
hospitalized - 3/08 for 6 days of IV steriods
colazal - 9 pills  asacol - 12 pills, 4 pills 2x a day - sulfasalazine (started 12/24/08)
canasa 2x per day, nightly hydrocortisone enemas - tapering
VSL#3 Primal Defense Ultra Probiotic (2x per day)
fish oil, calcium w/ vitamin d 2x a day, curcumin, prenatal vitamin & extra vitamin c and b12
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 1/6/2009 11:20 AM (GMT -6)   
6MP and Imuran are not as bad as they sound. My GI in Michigan - whom I loved! - told me he has had several patients conceive and deliver healthy, full term babies.

Enemas are great when you can use them - they deliver the meds right to where needs them and you absorb less than an oral medication. I think the second doctor was a idiot to tell you to come off of them - especially for proctitis!

I find I fear most what I don't know or understand. I would suggest going back to your old docs regime (give it a week to kick in) and starting some research to see if 6MP is as bad as you think it is. I know there are GIs out there that are okay with women having babies on these meds - but YOU need to be sure about it.

Also - you are an extremely caring person - an adopted child would be blessed to have you! So whatever you decide to do, it will be okay!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Mild Flare
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and a probiotic
Remicade: 1st infusion 06/17/08:  Next infusion: 12/02/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/6/2009 12:48 PM (GMT -6)   
WishfulMA said...
I agree....I am puzzled too. 6MP and remicade are both big decisions and obviously if I decide to take either of them, I am going to have to move onto adoption. I am so confused and scared!!!

So, did you ask GI #2 why he/she recommended 6mp over Asacol/steroid enemas? Did you discuss your desire to start a family?
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 1/6/2009 1:09 PM (GMT -6)   
Feel free to visit the Crohns board to talk to women who have had babies on Imuran and Remicade and Humira
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 1/6/2009 1:23 PM (GMT -6)   

GI #2...the Dr. from Beth Israel in Boston, said that obviously the 5-ASA meds/cortenemas are not helping me since I am still bleeding...but having only 2-3 movements a day. He said the risk assosciated with long term steriod use from the enema (which is like taking 10mgs of prednisone) is greater and more dangerous than 6MP or remicade. He is also a "HE" so he doesn't understand that I have been TTC since 2007 w/ IVF. I had a miscarriage in Jan. 08 and thats when I flared up. I have been sick ever since and nothing has really put me in remission.

 

GI#1...is a female and understands my desire to get pregnant.

 

dakotagirl - how is the remi treating you? did you feel better after your 1st infusion?

 

Thanks Fitzy23...I will!!!


sever ulcerative proctitis - march 05 diagnosed
current status - trying to see what works - still bleeding!!!!!
hospitalized - 3/08 for 6 days of IV steriods
colazal - 9 pills  asacol - 12 pills, 4 pills 2x a day - sulfasalazine (started 12/24/08)
canasa 2x per day, nightly hydrocortisone enemas - tapering
VSL#3 Primal Defense Ultra Probiotic (2x per day)
fish oil, calcium w/ vitamin d 2x a day, curcumin, prenatal vitamin & extra vitamin c and b12
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/6/2009 4:02 PM (GMT -6)   
I tend to disagree with a topical, local steroid application being worse than a systemic immunosuppresant, but all GIs have their opinions and they vary widely, in my experience. A healing implant enema, as described in the book Listen to Your Gut, might be an option for you. You may also find FissureHeal helpful since your diagnosis is proctitis.

I'd also suggest trying a different probiotic as Primal Defense contains spore forming soil based organisms whose long-term affect is unknown and I believe there are other ingredients than can make symptoms worse for some IBDers. After an initial improvement, I became rapidly sicker on PD and felt better almost as soon as I stopped taking it. Asacol also has a record of making some people feel worse and bleed more. I actually did much better on sulfasalazine, but it sounds like you might be allergic to it. It may be worth asking your doc about another ASA.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 1/6/2009 7:43 PM (GMT -6)   
I really don't know that the remi is doing much for me. I know there are a lot of people that it has helped though. Somehow, possibly through a combination of things (remi, switching to lialda from asacol, and starting effexor again) I am doing well now. (probably need to adjust my sig!)
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Mild Flare
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and a probiotic
Remicade: 1st infusion 06/17/08:  Next infusion: 12/02/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 1/7/2009 12:26 PM (GMT -6)   
Princesa - i used to take VSL#3 and stopped and switched to primal defense. What probiotic do you recommend? I have a Rx of colazal here at the house....I wonder if i should switch to that?? Though I tried that before as well.
sever ulcerative proctitis - march 05 diagnosed
current status - trying to see what works - still bleeding!!!!!
hospitalized - 3/08 for 6 days of IV steriods
colazal - 9 pills  asacol - 12 pills, 4 pills 3x a day - sulfasalazine (started 12/24/08)
canasa 2x per day, nightly hydrocortisone enemas - tapering
VSL#3 Primal Defense Ultra Probiotic (2x per day)
fish oil, calcium w/ vitamin d 2x a day, prenatal vitamin & extra vitamin c and b12
 

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