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Ulcerative Colitis
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Posted 3/21/2011 3:49 AM (GMT 0)
Hi Turtle,

Stay strong I know how tough it is not knowing if anythig is going to work. I can tell you my bleeding did not stop for a while even with the IV steriods and an expensive liquid antiobotic in a syringe I took orally to treat the c-diff. They did have me do a steroid enema while in the hospital 2 times a day. After 19 days I was going stir crazy but I was lucky that the staff were excellent. One thing I found is if I layed down or on my side it caused me to go to the bathroom more. I was a side sleeper so it really caused sleeping issues. It actually took months for me to be able to lay down and sleep and the healling process took several months.
Posted 3/21/2011 9:54 AM (GMT 0)
Turtle it took 10 days for the IV steroids to control my daughters symptoms.
I think if the damage has built up over some weeks/months into a massive flare - the steroids need more time to improve your outward symptoms because the healing process cannot be rushed.
Sue
Posted 3/21/2011 9:27 PM (GMT 0)
Hi everyone, here's another update:

Colonoscopy was at 7 am today. The doc went in 15cm and terminated the procedure due to "friable ulcerated mucosa." So back on NPO (I have had only 1 meal since Thursday!) and using steroid enemas starting tonight. I guess this is the "bowel rest?"

I'm hooked up to iv fluids again. My hemoglobin level is stable. MY stomach is growling from hunger. How long will they keep me NPO? I havent seen my GI since the colonoscopy today and I am so frustrated that they're not telling me anything. I got the info from the scope write up that the resident gave me.

My actual GI who I love is back in the office tomorrow (her colleague covered since I was admitted) so I'm hoping starting tomorrow she can give me more info and we can discuss next steps.

On top of it all, my bestfriend's father passed away last night from a car accident and I'm a wreck bc he was like a dad to me when we were kids. I need to get better and get out so I can be with our families.
Posted 3/21/2011 10:28 PM (GMT 0)

turtle521:

So sorry to hear about your friend's father but please take your time.  You are no good to any friends or family if your not taking care of yourself.  Be patient.  Your colon is so bad that the colonoscopy procedure had to be aborted.  This is telling.  You will be in there for a while by the sounds of it.  Again my heart goes to your friend's family and to you but please pause and get yourself better first.

MyUC

Posted 3/22/2011 7:36 AM (GMT 0)
I was on NPO for 3 months. It really depends on how quickly your intestine gets better. I don't remember ever having a growly stomach but I was on the maximum legal dose of morphine. I do remember being able to drink as many clear liquids as I wanted.
I hope your doctor does early rounds so you can have your questions answered right away. You may also want to ask for an anti-anxiety medicine. Steroids can make grieving even harder. I am so sorry for your friend's father's death.
SZm
Posted 3/22/2011 12:50 PM (GMT 0)
Turtle,

They had stop my exam as well because I was so enflamed. I think I went a week and a half without food just ice chips and the liquid bags they gave me through a pic line in my arm one was yellowish and later in the evening lipids. All I can tell you as bleak as it looked for me I got through it with time and am now in remission. stay strong. It takes time for your intestine to heal.
Posted 3/22/2011 1:13 PM (GMT 0)
So sorry you are stuck in the hospital and also dealing with the loss of a loved one. I had a severe flare 2 years ago. I was on 40 mg of prednisone for 7 weeks with no improvement, in fact, I only got worse. I was passing a lot of blood and going 20+ times a day. The toilet water was red. I had the choice of going in the hospital for IV steroids or trying Remicade. I chose the Remicade as I needed to work, take care of my cats, etc. I live alone. The Remicade had an immediate effect, by the next day I probably only made 3 trips to the bathroom. My GI took a different approach to the Remicade then most. I only had 3 infusions to insure I was in remission and ween off the oral prednisone. I did flare again about 5 or 6 months after my last Remicade infusion but I was able to get that flare under control with oral prednisone, Rowasa, and switching from Asacol to Lialda. Maybe you could give the Remicade a try. I know it is not an easy choice. I am not sure I would use it again but I am glad it was there to get me out of a monster flare. Hope you improve soon.
Posted 3/24/2011 9:01 PM (GMT 0)
Hi, it's been a few days since my last post and I'm happy to report that I have turned the corner.  I started clear liquids yesterday and been digesting it well, and will start solids tomorrow (low residue).  Less bleedy, no urgency, and less BMs.  Looks like the iv steriods and cort enemas are working!

The docs all agree that belly area feels great and sounds good and they are actually surprised at how much I've improved.  I guess the bowel rest really helped.  If the solid food and oral prednisone works tomorrow and all is good, I will be discharged Saturday.  I've been here since Thursday so I'm happy to go home.  I miss being home with my husband and my dog!  But I'm thankful I finally stopped being stubborn and got admitted and looks like I'll be leaving with a healthier gut.

The plan is to start Imuran next week, and then do another colonoscopy in a few weeks. I have about a month off from work to either work from home and just relax, so I'm going to use that time to really monitor what foods helps or aggrevates, and start probiotics and do yoga.  My work is very stressful and I think I really need something I can do everyday to keep me balanced.  I do not want to ever be in the hospital again.

Thanks everyone for all your support. This forum has been a godsend, especially very recently. 

Posted 3/24/2011 9:06 PM (GMT 0)
Turtle - it's so good to hear your report! I've been wondering how you were doing.
I've done the hospital/bowel rest/ iv steroid thing, too.....

I hope you continue to improve, and I hope the next weeks are fruitful for you in terms of learning about yourself.... how wonderful you can take that time!

Keep us posted. :-)
Posted 3/25/2011 5:49 AM (GMT 0)
Good to hear! Take the time off work and just rest, your body sure needs it :)
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