advice for visiting Crohnie in hospital?

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UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/30/2008 7:49 AM (GMT -7)   
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.

so, 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.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 1/30/2008 8:31 AM (GMT -7)   
Hi UCinNC:

Support means remaining open and accessible. You can't fix what's wrong. She is in a tough spot right now and must be freaking out. Especially if talk of disability is starting to be discussed. Everyone deserves the opportunity to work and be productive and disability at such a young age can be absoultely devastating to one's sense of self worth. My suggestion is to allow her to express what's in her head and, even if it sounds crazy, don't challenge it directly. From my experience, denying my beliefs (that I wasn't really that sick, that I was responsible for getting sick when it was so bad that I needed hospitalization etc) only made me bottle them up. It did nothing to relieve my anxiety, which drove those dis-ordered thoughts. Over the years this grew into a huge problem for me and it has taken hard work to change the patterns of denial that began in the early years I coped with this disease.

After 30 years of fighting this disease, trying to control it through force of will and working very hard in a career I loved, I have had to accept the reality that I am no longer able to reliably work in the field that I love and maintain my health.

So, you can't make her better. You can only provide a non-judgemental sounding board. If she can be encouraged to talk through her worst fears, she will reach her own answers.

Thank you for being a friend who does truly care. Look inward to the struggles you have had with your disease, you will find ways to empathize with your friend so that she knows you understand. Sometimes that is the most important thing.
Belleenstein:

30+ years living with Crohn's.


meshice
Veteran Member


Date Joined Jan 2003
Total Posts : 734
   Posted 1/30/2008 9:46 AM (GMT -7)   
I don't know you, but you have to be a great friend to even post a question like this.
 
Just being there is sometimes better than saying anything or offering any suggestions. 
 
I know when I was sick and especially when I was in the hospital (7 surgeries within a year and a half) sometimes I didn't even want to talk, but it comforted me knowing someone was beside my bed.
 
It also helped me to focus on the future - when I was better.  Yes, I did not know when that would be or how long it would take, but it was my drive to get better.  To talk about things I would do and places I would go.  You could do this with your friend.  If you focus on the negative it only brings you down, so talk about positive stuff. 
 
Also, you don't have to talk about UC or CD.  It is bad enough that your friend feels bad, she doesn't need others telling her more about it.  So talk about things you both enjoy and just be friends without even bringing up the disease.
 
I am sure most of us need more friends like you who care and want to help!
"We can't beat this disease, YET, but we can't let it beat us!"
Mandy

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34


mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 1/30/2008 12:51 PM (GMT -7)   
I agree with Meshice...you are one heckuva friend to care so much about her that you seek advice on how to support her emotional well being. How fantastic. Well, you've already won half of the battle, you are obviously a very compassionate, supportive person and I'm sure that shines thru to your friends and family. Be empathetic to your friend, without sounding patronizing, let her know that you won't be intrusive but you will be there for her to talk too, that's really most important for her right now. Let her know that you accept and love her no matter what...let her vent about her frustrations, sit and listen, really listen.
Good luck to you and your friend!
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)


upt0106
Regular Member


Date Joined Dec 2007
Total Posts : 47
   Posted 1/30/2008 3:45 PM (GMT -7)   
when i was in the hospital, I really appreciated my sister in law coming over and just playing scrabble with me...if your friend is up for something like that, maybe you could give it a try. As others have mentioned, I think it's more about just being there, listening and showing that you care about your friend, than saying or doing anything specific.
---
-Male, age 31
-Diagnosed with Crohn's 2002 - 5 surgeries for peri-rectal abscess in 2002-2003
-Started Makers Diet 26 Jan 08
-currently on prednisone taper after landing myself in the ER with a partial obstruction


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/30/2008 4:28 PM (GMT -7)   
Once you do the obligatory hope you feel better soon-follow her lead.  Im guessing she won't want to talk exclussively about her illness.
Gossip-in a friendly manner of cource about mutaul friends and any funny or at least neutral events going on in their lives.
Bring distractions-a game you can play together if she is feeling up to it is nice but trashy light reading to fill the alone times is even better
Promise to come again and then do-better promise a day or a few hours of help when she gets home and then do.
Sj

UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/30/2008 5:45 PM (GMT -7)   
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.


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/30/2008 5:53 PM (GMT -7)   
In my opinion you don't ever want to do emergency surgery. If she is safe to go home and schedule the surgery she is going to have surgical staff including the doctor who are more familiar and more prepared for her case and less likely to be fitting her in as their fifth case of the day.

She may not want too many visitors for a few days but you might want to bring a casserol for the family and leave her a card saying you'll visit when she is up to it or a big comfy of some sort. Sj

UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/30/2008 7:17 PM (GMT -7)   
thanks, sj. I sent her an email and texted her and will call in the next few days. I figure I should give her some space right now. she actually lives about 2 hours away but she comes to my town because I live by a major GI clinic for the southeast US. so, my plan is to be diligent in following up with her but to also recognize she may need a little time for herself right now. I just feel so bad for her.
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.


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/31/2008 6:40 AM (GMT -7)   
Ditto,you are an awesome friend!! As a nurse,I see people in the hospital,and I actually see patients improve when they have family and friends there.Maybe bring her a care box,some books,favorite magazines,stationary with pretty pens,"quiet" crafts that she can do from bed or a chair,just some suggestions. I hope she feels better soon :-)

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/31/2008 12:45 PM (GMT -7)   

What a great friend you are, bless you.
My input..................as a patient and as a visitor

Be cheerful.The most important result of your visit may be to raise your friend's spirits and give her hope. Don't be the bearer of bad news. Try to restrict your conversation to topics that will make your friend feel better. A sense of humor can often put things in perspective. Medical research is continually learning more about the healing power of humor.

Have a normal conversation, friend to friend. Talk about the things you would talk about in your usual setting. And don't get so carried away by nerves or a desire to entertain that you fail to let your friend talk as well. The most important rule is this: remember it's not about you. Be ready to listen as well as talk.

Offer to pray. Ask, "Would you like me to pray? Accept your friends answer and respect her wishes. 

Remember the whole idea is to spend some warm, quality time with your friend.

With a friend as concerned and caring as you, I think you friend will enjoy your visit and support. 
Gentle Hugs to you
KItt


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 1/31/2008 4:18 PM (GMT -7)   
believe it or not, my parents snuck in my chihuahua to see me....i couldn't have been happier! but that won't work for everyone, obviously.

then, my best buddies came by and and we even played poker (i am an avid poker junkie, and i was lucky to have a nice sized room with a round table to play on). It was so nice just to have someone there....the funniest part is, even though i was loaded out of my mind on Dilaudid, I still pulled off a win. I am not sure yet if they just let me win, but the fact that they were there was enough for me to feel so much better.

you sound like the right kind of friend to have, so as long as you are just yourself, you will fulfill her needs.
"The things that make us feel so abnormal, are actually the things that make us all the same" - from PostSecret: Extraordinary Confessions from Ordinary Lives - by Frank Warren


meshice
Veteran Member


Date Joined Jan 2003
Total Posts : 734
   Posted 2/1/2008 10:03 AM (GMT -7)   

Where are you at in NC?

I am in the foothills, a little before you get to the foot of Black Mountain.  My GI is at Baptist in Winston Salem.  I have also seen drs and had surgery at UNC.

Yes, they do discharge before surgery especially if it is not an emergency and the hospital is full.  It would depend on how bad and urgent the surgey is.

Hang in there she (or her faimly) will contact you when they need you.


"We can't beat this disease, YET, but we can't let it beat us!"
Mandy

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/1/2008 10:17 AM (GMT -7)   
hey meshice, I live in Chapel Hill. My friend gets treated at the GI clinic at UNC. Koruda is her surgeon and Isaacs is her GI. you said you have had surgery at UNC.... with Koruda??? how was it? I ask because I am meeting with him next month to talk about surgery for my UC. Probably I am too healthy right now for a colectomy, but I am trying to educate myself since I don't seem to be responding very well to most medicines....
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.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 2/1/2008 6:38 PM (GMT -7)   
Since you are far away from where your friend is and it may be a while until she is back on her feet, you could send her a care package. You could put one together of things to keep her busy like trashy magazines, puzzles, crosswords, soduku, and quiet crafts as mentioned as well as some snacks/treats that are appropriate for a CDer. I'm sure as a UCer you are pretty familiar with what would be tolerated. Or you could have something sent from any number of websites. I have sent chicken soup to lots of friends who have been either sick or had a loss in the family and it has always been very well recieved (grandmaschickensoup, but there are others I'm sure). I think the big thing is just to touch base every so often so that she isn't feeling so alone. I know when I am at home recovering from being sick, I don't want to call my friends during the day for fear of disturbing their work day. But that really does make for a LONG day at home alone.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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