update...back from the hospital.

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hamley
Regular Member


Date Joined Sep 2008
Total Posts : 52
   Posted 9/13/2008 8:58 PM (GMT -6)   
So I had a horrible, dreadful morning last week with cramps and blood and the whole nine yards.. I went back to the ER in pain because I didn't know what to do.  Three days later, and another colonoscopy later, I am out with new medicine and feeling okay.  They discontinued my Rowasa, which must not have been working, and put me on Asacol.  It seems like a lot with the dosage, but so far I think it's helping.  I was so disgusted while in the hospital because the nurses didn't think that I should have been there... they don't understand how painful a "mild flare" even is!  I would hate to think what the more serious flares are like.  I had one doctor actually tell me that I "just can't keep coming back here"...can you believe that?!!  What an awful thing to say.. He recommended going to a family doctor next time I'm in that much pain and bleeding.  what they hell is the family doctor going to do?!   And then he told me that I should think about taking a semester off from school!  At the beginning of my senior year, that was just what I wanted to hear.   This world today is disgusting..most doctors, I have found,  just want their money and for you to be on your way. 
 
hoping this flare ends soon...
 
just had a semi-regular bowel movement that was actually brown! yay!!
 
 
Female- almost 21!
Diagnosed 9/1/08
Rowasa 4g
Hyoscyamine .125mg
Percocet 5-325 mg


mommafreds
Regular Member


Date Joined Sep 2007
Total Posts : 41
   Posted 9/13/2008 9:11 PM (GMT -6)   
Congrats on being semi-regular..I was in the hospital over the summer. I did not want to go but went because I was having a large amount of blood and was dizzy and short of breath. The GI doctor filling in for my doctor told me "I have seen much sicker patients"(I was thinking "you idiot, do you think I came here for the good food and comfy beds?") Ends up the next day my blood count was so low I got 2 pints of blood. But even when he went to discharge me he made a comment on how I didnt look or act as sick as some UC patients. I had other doctors come in and tell me how serious my disease and symptoms were and how I should come to the hospital when I was bleeding like that. Go Figure. Sorry you were treated that way.
DIAGNOSED 2004 PANCOLITIS
CURRENT MEDS: PREDNISONE 20MG (DOWN FROM 40MG)DAILY
AZATHIOPRINE 100MG DAILY
ASACOL 400MG 4TABS THREE TIMES/DAY
PROBIOTICS: FLORA-Q AND ALIGN
ANTIDEPRESSANT: BUDIPRION 150MG DAILY
SUPER B COMPLEX WITH C VITAMIN DAILY
OSCAL WITH D TWICE DAILY


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/13/2008 10:38 PM (GMT -6)   
I'm sorry you had a bad experience with the ER and doctors. The last time I went to the ER, the doctors were so nonchalant and discharged me 2 hours before my parent could pick me up; I just had to sit in the waiting room feeling like crap. And yes, unfortunately, a lot of doctors just do it for the money. Healthcare is often a business, not a service. 
 
I'm glad the Asacol is starting to help!
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 9/14/2008 8:12 AM (GMT -6)   
That is the exact same reason I have never gone to the ER for my Uc flares. There have been times maybe that I should've gone but didn't. I know that I never look "sick" from my flares but I feel like I'm dying on the inside. And many docs say I look good until I tell them exactly what is going on. All the times I've gone to ER (one time by ambulance), the docs were usually pretty good but then again the times I went were for real emergencies such as severe adverse reaction to medications. And nothing as obscure as a Uc flare. Most ER docs just don't know how to deal with Uc and it's sad that they think we have to be crawling on our knees in extreme pain crying our eyes out before they think we are serious enough to treat. I'm so sorry that you had to go thru that. Especially while feeling so horrible - it's sort of like a slap in the face eh?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


hamley
Regular Member


Date Joined Sep 2008
Total Posts : 52
   Posted 9/14/2008 9:17 AM (GMT -6)   
It feels a lot better to know that I'm not the only one being treated like that-- thanks for all your replies. I can't believe we have to put up with this when we go to the hospital for help! I will think twice now before going to the ER...which is sad...
Female- almost 21!
Diagnosed 9/1/08

mild UC- left sided
Meds:  Rowasa 4g
Asacol 400 mg two 3 times/day
Hyoscyamine .125mg every 4 hrs
Percocet/ Vicodin as needed
multivitamin





 


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 9/14/2008 10:22 AM (GMT -6)   
Hamley

Sadly, you have a chronic disease which gets little notice or sympathy, even from some in the medical field. I wish it were different but......
I have had this disease for over 46 years. Fortunately my disease symptoms seemed to have lessened as I age. But I got sick in my junior year in high school and missed three months of school. My worst years were the next 20. Of course there were not as many choices in meds back then. And no Internet to find other people who actually understand the emotional and physical trauma this disease can give a person.

Interestingly enough, as my friends are aging, they are beginning to deal with chronic illnesses. I have a friend who was recently diagnosed with Type II diabetes. And now suddenly all of our friends are talking to her with empathy and sympathy about how to live with a chronic disease, and understanding her frustration with the costs of meds for chronic illness. Now these people totally have ignored my IBD. In fact, even though I have explained the disease to them, and explained that there are a few things I cannot eat (for me it's chocolate) it is as if they do not believe I am sick because I don't look sick, I don't usually discuss my symptoms in depth (seriously who wants to talk about bloody diarrhea?). So one year at the birthday gathering for me, guess what kind of a cake they got? CHOCOLATE (even though my friend that now has diabetes has known me since we were kids and that chocolate is the one thing I cannot really eat without getting sick). And even though they all know that IBD is chronic, until my friend told them about her diabetes they never mentioned the programs out there for people with chronic illnesses.

Now my friend (who btw compared to me is well off) is constantly whining about the cost of meds for her diabetes. I have been taking several drugs all my life for IBD, and now suddenly the cost of drugs for chronic disease is an issue.

Sorry, I had to rant too. I know exactly what you mean. There have been times when I have been in excruciating pain or discomfort and unable to leave the house....and no one sees what we go through. Now when we are out, I don't say to people "Oh my stomach hurts and I have urgency pain and I have to get to a bathroom." I go, and I take care of it in privacy. My friend now gets shaky and everything stops to meet her needs........I understand that a person with diabetes can go into shock but also I understand she has been told to keep food with her at all times.

Sometimes I just have to get this stuff out or I will explode.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/14/2008 10:27 AM (GMT -6)   
Yes, it is sad!  Now you found out the Asacol is not for you either. 
I am 68 and this morning very frustrated also.  I know I would go to the ER if I was in severe pain or losing a lot of blood - also bad chest pains - but otherwise ride it out here.  I sure hate feeling "too sick" to go to the doctor!
Anyway, hamley, hang in there.  I had to quit Rowasa and Colazal because of side effects.  I was fine for two weeks - nearly in remission - then went to NP at gastro doc.  She suggested trying the Rowasa which seemed to have worked for a while - every other night.  Well, I tried it Friday night (got in about 1/3) and have been sick every since.  Today back to square one with bloody D.  This is no fun at any age.  BUT - there are so many options - don't give up on the doctors - see a new one if you have to - get help - it just takes a lot of patients unfortunately! 
ElaineNY
68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
colazal
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Rowasa every other night for now.
 
 
 
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 9/14/2008 4:03 PM (GMT -6)   
I have a good one for ya.  When I was admitted to the hospital on May 3rd, it was 11pm.  A few hours before that I was in contact with my GI doctor who happened to be on call that Saturday night.  My chief complaints were....pain in rectum radiating down into my legs, bloody diarrhea and BP of 216/96. OOOOK.  I knew a Saturday was probably the worse day to try to get ahold of a doctor and I thought maybe I could "tough" it out to Monday.  But the blood pressure concerned me.  I even doubled up on my BP meds an hour before that.  He called back right away and said to keep a watch on the BP and if it didn't go down to go to the ER.  Well, it didn't go down and I had my husband drive me to the ER at 11pm.  The doctor in the ER ordered a CT scan of my abdomen, blood tests and started an IV to bring down my BP.  Before admitting me at 2:30 am, he called my GI doctor, who wasn't aware that I had gone to the ER.  Early the next morning, my GI doctor came ranting and raving into my room....mind you...I am sick as a dog....wanting to know WHY I came into the hospital!!!!  Well, I gave him a piece of my mind....I told him exactly WHY I was there...what I felt like saying was ..."Look, pal, if you don't like being awaken while on call, why in hell did you become a doctor...oh wait..I know why...the money."  When he left, my roommate said..."if that guy were my GI doctor...he would be history."  Well, his associate took care of me my entire time in the hospital, ten days to be exact, guess he was too embarrassed to show his face.  His associate also did the colonoscopy and told me I was NOT a candidate for Remicade which my GI doctor had been pushing.  Okay...update.  When I was released from the hospital, I called my GI's office and asked to make an appointment with his associate.  OMG...what an uproar that must have caused.  His associate called me back and said since I had a ten year history with my original GI doctor he felt very hurt that I was asking for the associate.  I mentioned how rude my GI was when I was admitted and that he never even came up to see me while I was in the hospital.  However, this guy didn't flinch...sooooo....I am back with my original GI doctor and he now kisses my tuckus.    When I went to see him that first time after my hospitalization I laid it on the line...told him how rude he was to me...told him he hurt my feelings..told him what my roommate said, etc.  At least we cleared the air, hugged and we both feel better..end of story.
    

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/14/2008 5:03 PM (GMT -6)   

I love doctor stories!  I so prefer my NP - Rachel - she spends more time with me and always consults the doctor but really understands a 68 year old white haired lady who is hurting.

Here is a good one for you....

I was referred to one of two GI doctors in our small town.  I went by myself to see him.  He is from India and dark skinned.  He ordered a colonoscopy and prescribed Canasa while I was waiting for tests, etc.

The day of the colonoscopy and endoscopy my husband took me so as to drive me home.  He had never met this doctor.  I had the test and this hospital the doctors go to the waiting room, ask for my husband and tell him all is ok.  Then when I was more alert we met with him in a small office.  While waiting for the doctor my husband told me the doctor came out and told him I had a couple polyps and he one was large and he biopsied it.  Of course, we were concerned as I never had polyps before.

My doctor came in as we were worrying about the test.  He said hello and then had to leave for a moment.  My  husband says "that is not the doctor who talked to me - he was white hair and very light skinned".  Then my doctored came in and told us I had UC - leftsided and mild or moderate right now.  We discussed treatment and other tests he did - biopsy, c-diff, etc.  My husband said "what about the polyps?"  He said there were none.  Apparently, there was a mixup (no kidding!) and we reported it to the hospital.  We laughed then but not so funny thinking the worst for a short time.  GEEZ!  My husband goes to the VA hospital and I wish I could - it is wonderful there! 

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
colazal
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Rowasa every other night for now.
 
 
 
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 9/14/2008 6:02 PM (GMT -6)   
Good one kops....here is another one.  This happened to one of my friends.  She and her husband are "full-timers".  In camper lingo that means they live in their motor home, six months in FL, six months in upstate PA.  Since they are originally from PA they schedule their yearly tests with their physicians in Altoona.  Linda (I'll call her by her name) had a mammogram, pap smear, bone scan, etc..  On their way back down to FL she received a call on her cell phone to return to Altoona asap..that she had advanced bone cancer.  Her husband darn near crashed the motorhome.  She was completely flabbergasted since she had NO symptoms.  Turns out...she did NOT have bone cancer...she didn't have cancer at all.  She went in to the hospital where they performed MRI's, CT scans, etc..  NADA.  She really doesn't know what happened.  I think they got the test results mixed up with someone else.  I would have gotten a lawyer for that one, wouldn't you?  She said she was just soooo relieved that she didn't have cancer.  Yeah, but all those extra tests and extra costs!!!  Not to mention the anxiety that put her and her husband through.

hamley
Regular Member


Date Joined Sep 2008
Total Posts : 52
   Posted 9/14/2008 6:09 PM (GMT -6)   
Jjc2007  - the chocolate cake would have done it for me!  How rude!  I also LOVE chocolate..and am now nervous to eat it.  I keep finding people and doctors who really downplay that it is a serious disease.  what ashame.  thanks for your story!
 
 
Female- almost 21!
Diagnosed 9/1/08

mild UC- left sided
Meds:  Rowasa 4g
Asacol 400 mg two 3 times/day
Hyoscyamine .125mg every 4 hrs
Percocet/ Vicodin as needed
multivitamin





 


hamley
Regular Member


Date Joined Sep 2008
Total Posts : 52
   Posted 9/14/2008 6:11 PM (GMT -6)   
Christine1946 - that is AWFUL! I would have sued the hospital for every penny!! If I were the doctors I wouldnt even be able to look her in the face after that.. I hope she got some apologies after that!
Female- almost 21!
Diagnosed 9/1/08

mild UC- left sided
Meds:  Rowasa 4g
Asacol 400 mg two 3 times/day
Hyoscyamine .125mg every 4 hrs
Percocet/ Vicodin as needed
multivitamin





 

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