Please Help me!

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gypsy357
New Member


Date Joined Jul 2003
Total Posts : 16
   Posted 4/10/2008 11:52 PM (GMT -7)   
eyes  Long story short, had endo bad, left ovary embedded in bowel, diverticulitis, uc, treated till surgery with steroids, diabetic, makes it go sky high, had 18 inches removed, all the bad part...left side, 2006
Now just got out of hospital, been bleeding for 8 months, they gave me iv steroids, anemic, didnt do scope afraid of perforation.  Dr said body shut down, when i came home after 4 days, not remembering anything hardly, slept alot *at least no pain then* got so depressed, cried, didnt want to live, hated life, and I never do that, I do good to survive, but sugar was 500 cause of steroids, and I feel like ive been "burnt" from the inside out....yeast infections, thrush..Im falling apart.  What should I do..dr sent me home on asacol, endocort, enemas, suppositories..I have to live on phenegran, and im getting amuned to it i think.  I am staying nauseated, burns like fire when I do have a bowel movement..no blood but, feels like acid when i have movement.  Im sorry im so depressing sounding, i just dont know what to do, wheather to head back to the hospital or what...changed drs, so im new at this one...Does remicaid work?  I know this is a cronic condition, and i can live with that, but its horrible i went through the surgery, and now its back throughout myu colon.  And the drs in the er acts like you are there just for the drugs..which burns me up .  If they felt this pain, they would not hesitate...Thanks for listening and letting me vent...I trust you all better than drs! 
 
 

UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/11/2008 12:06 AM (GMT -7)   
I am so sorry to hear you are going through all of this. I can't imagine the pain and frustration you must be feeling. I really don't know the answers to your questions, but I just wanted to let you know not to apologize for the way you're feeling or to let those doctors make you feel like you don't deserve their care. You have every right to feel the way you do. Sending positive thoughts and courage your way. Take care.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/11/2008 5:52 AM (GMT -7)   
Gypsy, this is exactly why total removal of the colon is the recommended surgical treatment for UC. When only part is removed, the UC comes back in the remaining colon. I can't imagine at this point why your doctors aren't trying other drugs. Azathioprine or 6-MP help a lot of people who don't respond to 5-ASA drugs. Remicade has worked wonders for some of us. Have any of these drugs been tried?

With blood sugars of 500, you definitely should not be on steroids. Frankly, with the situation as you described it, I'm amazed that your doctors haven't recommended removing the remaining colon. This would cure your UC, get you off the steroids and allow you to sort out your other medical issues. You need to have a serious talk with your GI about treatment plans, and please consider consulting with a good colo-rectal surgeon.

And yes, I'm living proof that Remicade does work.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/11/2008 6:39 AM (GMT -7)   
I am sorry too. I don't think a doctor would remove only a part of your colon if you have UC. Are you sure you don't have Crohn's? Remicade does help some people, not all, but it did work for me for about 3 years. If you continue to feel this rotten, I would go back to the hospital. Steroids make everything seem very emotional and also heard they can cause yeast infections and thrush on this forum, I think. Don't feel guilty about going to the hospital or let the doctors make you feel bad about needing pain medication.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


gypsy357
New Member


Date Joined Jul 2003
Total Posts : 16
   Posted 4/12/2008 6:30 PM (GMT -7)   
thanks to everyone that replied...im feeling some better, using enema and suppositories, and upped my asacol. And yes, I have UC but yes, I do think it is turning into crohns. I am going to be more positive about my own health advocating. I am going to tell the drs that I deserve to be treated with respect and get the help I need. I am going to call my gi monday and see what else i can get done. Thanks for letting me vent...Im going to mention remicaide also.
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