advice for visiting Crohnie in hospital?

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UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/30/2008 8:50 AM (GMT -6)   
Hi. Later today I am going to visit my friend in the hospital, who has Crohn's. She is really struggling emotionally, so I want to be supportive, which is why I am coming to you guys to ask if you have suggestions on what I can say to her? here is her situation:

She has had Crohn's for about 12 years (she is now 27). She has had 3 surgeries, fistulas, obstructions, all of that.... she had a few good years on remicade but that eventually gave her an obstruction that required surgery a few months ago, so now she is on humira. But, she was admitted to the hospital last week with what appeared (from the CT) to be a ruptured ovarian cyst. Except, GYN couldn't find anything wrong with her from the GYN point of view for last 5 days, so now GI has been called in. her belly is distended, she is nausous and unable to urinate without a catheter.... she is feeling very ill and very frustrated and they pulled her off humira during all this to figure out what's going on.

because I have UC, and I have always taken comfort in knowing i could have my colon removed, but I know that isn't the same "cure" for crohns, so i can't throw that out there as an option. The reality is that she has one of those cases of Crohns that is very hard to manage, and now they are talking about having her apply for disability, which is freaking her out. so, I am wondering if any of you have advise for me to make her feel better??? thanks so much for any thoughts...
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/30/2008 8:55 AM (GMT -6)   
I think the best you can do for her is offer support and help once she is released from the hospital and be a good listener. Good friends are hard to find and I am sure she will appreciate your visit and your continued support and friendship through her chronic illness. Some people tend to turn away from friends who are ill, your presence will be a comfort to her.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/30/2008 9:06 AM (GMT -6)   
I doubt that anything you say to her will help her feel better but just knowing that you are there for her will. It sounds like your friend is struggling with many things but just let her know that you will help her with things when she gets out if she needs it.
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Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/30/2008 9:17 AM (GMT -6)   
The best thing is a good ear and a gentle hug. Suebear is right; sometimes others who don't have an illness tend to shy away so you might be her biggest ally right now. What a great friend you are; especially seeking out ways to make her more comfortable. Hey, just thought of this...maybe you could post this on the Crohn's forum for more insight?

Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/30/2008 9:26 AM (GMT -6)   
I've been asked to visit with a friend of a friend who's also been struggling with Crohn's and was in the hospital over the holidays. I'm going to talk to her about the book Listen to Your Gut by Jini Patel Thompson who's also a Crohn's sufferer. Jini has spent years trying different methods and treatment options and has compiled alot of invaluable information to help others manage IBD and gain remission. She's also available for one-on-one consultations, which could be very helpful for difficult cases.
Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/30/2008 9:45 AM (GMT -6)   
thanks. I did post it to crohns also and am about to go see what they have to say. it is just you all are such a great group of minds, figured I had to start here....
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/30/2008 6:46 PM (GMT -6)   
thanks to all of you for your feedback. my friend called me, literally as I was in my car on the way to the hospital, to say that GI had figured out what was wrong, and that she was being discharged. She was crying and very distressed. Her husband then got on the phone, and said something about trying to determine if she needs surgery. I didn't get the whole story because they had to go. what I am wondering now, as I wait to hear from her, is if hospitals will discharge a patient in need of surgery? If it is non-emergency surgery, will they discharge and schedule it and then bring her back in? wouldn't it be easier to just do the surgery while she is there? thanks.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 1/31/2008 8:15 AM (GMT -6)   
Hi UC,
A hospital would not normal discharge somebody whom needs surgery.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/31/2008 8:48 AM (GMT -6)   
UCinNC, did you hear anymore from your friend? I hope she is doing okay.

Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 

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