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Ulcerative Colitis
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Posted 11/14/2007 1:58 AM (GMT 0)
Hi! My name is Meghan and my mother was diagnosed with ulcerative colitis in April of this year. At first they thought it was C.diff but it turned out to be drug induced UC. Since then she has lost almost 60 pounds and all her hair, which we thought was attributed to something else not the UC. She is severely anemic and can barely stand up some mornings. I'm not really sure where I am going with all this....I just need some help... really she does. They have her on and off prednisone . but that seems to be the only thing they have tried even though I know that there are other things to try. She has been in and out of the hospital so many times in the past six months I can't even count them. She traveled 8oo miles across the country for my sister's college graduation and when I saw her she didn't even look like my mother. And when I talk to her she is a shell of the woman that she used to be. If anyone has any words of wisdom or some positive stories please share them with me. Any tips would be greatly appreciated. I have already read so many posts that she shed light onto her situation and I thank you for sharing.
Posted 11/14/2007 2:36 AM (GMT 0)
My dear, my heart goes out to you and your mother.

Is your mother seeing a gastro -enterologist (GI) who can treat UC? And how old is she. This disease can affect many organs in the body. People here has UC induced hair loss, arthritis, eye problems ane on and on. Fatigue is a severe issue felt by most UCers. It tend to be lifted when the disease is controlled.

Make sure you suggest probiotics for your mother. This is something she can do without a doctors order and most of us take them daily even when we are feeling well.

Much luck is helping your mohter. You will find people here are very kind and helpful so keep us posted on how your mother is doing.
Posted 11/14/2007 12:10 PM (GMT 0)
Hi, welcome to Healingwell. I'm so sorry to hear that your mother was diagnosed with UC. So she hasn't tried any other medication other then Prednisone??? If this is the case then it's time to find a new doctor! Uc can be a managable condition if the proper maintenance is taken. Many of us take 5-ASA's which are anti-inflammatories for the colon. Such as Asacol, Colazal, Pentasa and rectal 5-ASA meds Rowasa, Salofalk, Canasa. Please visit www.ccfa.org for more information about UC and what the treatment options are. Plus too, if your mother is taking any Nsaids such as Aleve, Motrin or Advil - have her stop ASAP because they promote intestinal bleeding. Also, she might want to try a low residue diet to help her colon heal by not working so much.

Once again, welcome and if you should have any other questions, don't hesitate to ask.

Posted 11/14/2007 3:27 PM (GMT 0)
Thank you so much for replying. My mom is seeing a gastroenterologist, a meatologist, a cardiologist, etc. She is seeing a lot of doctors. I am an RN and I ave suggested the probiotics to her and I think she is going to discuss it with her doctor to see if it is some thing she should try now or when her UC is at a less severe stage. she is 45 years old and I just want to be able to have my mom back. so I appreciated the responses! thank you!
Posted 11/14/2007 5:50 PM (GMT 0)
Hi, Gigi! Sorry to read that your mother has such bad UC. I recently posted a Website where drug options are discussed for different levels of UC inflammation/med response-- it's now on page 3 here: "New online IBD article summarizes current medical treatment options". Since you're an RN, it should be helpful reading. The doctor who wrote it is very concerned about getting patients off Pred. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)

Posted 11/14/2007 7:17 PM (GMT 0)
In my experience, most gastros don't recommend probiotics or any other non-phamaceutical treatment to their patients. This is one of those cases where you really have to do your own research and lots of trial and error. I'd highly recommend you and your Mom both read Listen to Your Gut by Jini Patel Thompson. This book is written by an IBD patient has controlled her disease and achieved remission by trying a variety of alternative approaches. Another very informative and educational book is Optimal Digestion.

If you're not happy with the treatment she's received from her current gastro doc, I'd urge you to find another one or at least get a second opinion. There are some very poor ones out there. It's up to you and your Mom to be active participants in her healing.
Posted 11/15/2007 12:00 AM (GMT 0)
I just wanted to tell you welcome and i hope you find all the help you need. You have found a GREAT site, i'm still new here and i love it. So good luck w/ mom and take care. Jolene
Posted 11/15/2007 12:15 AM (GMT 0)
60 pounds? She's lost 60 pounds in a year (or less) and no one is getting her well yet? That's incredible. Really. And they've tried nothing but prednisone? That's incredible.

If I were you, I'd march her into the hospital and tell them you and your mother are NOT LEAVING until she gets some adequate level of care.

You say she has drug-induced UC. Well, that is C-diff. It is very common to test negative for C-diff when you really have it. The prednisone would mask some of the problems with c-diff until she goes off of it and then it would erupt again. Same with UC. She needs to be treating the UC (if that's what it is) with more than a course or two here and there of prednisone. She's lost all of her hair?

I just find this really incredible, shocking. It sounds like you are physically distant from your mom. Is anyone living near her who can go to her GI or GP with her and throw a hissy fit until they fix her?

This is such a scary story. I'm so sorry you and your mom are going through this. She really needs one of you (her children and/or a friend or other relative) to step in and advocate for her. It's obvious she's getting wholly inadequate care.

Mitz
Posted 11/15/2007 3:08 PM (GMT 0)
Well put, Mitz! RE "drug-induced UC"-- I wasn't clear as to what Gigi means by this. Was it c-diff or some high-toxicity drug(s) other than antibiotic that had previously been prescribed for an earlier medical condition. / Old Hat

Posted 11/15/2007 7:20 PM (GMT 0)

Welcome to Healing Well.  I am so sorry about your mom.  It really is hard to see loved ones sick and not themselves.  Maybe she needs to see a different GI?  Being there for her and supporting her will  help in ways you can't imagine.  Good luck.

Stacy

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