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MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 2/10/2010 5:31 PM (GMT -7)   
Well I have been a candidate for surgery for quite sometime and it is looking like it is getting to the envitable.  Since it is such a large portion that it will be an open surgery, and I have a chronic cough.  It takes me quite sometime to recover from surgeries, and I really do not have any support people that I can absolutely depend on (chonic illness has not been good for my friendship/relationship base and my living family is not that supportive or close <my parents are dead>).  I have been straining my brain about how deal with this.  I wonder if there are services that provide transportantion, meals, and just general help?  What are they called?   
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/10/2010 5:34 PM (GMT -7)   
(((Navy)))

If you lived in Australia, yes, absolutely :-(. I hope there's something for you there.

I think the surgery may be good news for you? You're in so much strife there: I hope this brings you better quality of life, once you're through the scary recuperation period.

Huge hug.

I.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


GDen
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Date Joined May 2009
Total Posts : 703
   Posted 2/10/2010 6:09 PM (GMT -7)   
Hmmm...

For transportation, I'd check if hospitals have a shuttle. Then there's cabs, busses, etc.

For meals/supplies, grocers around me offer home delivery. There's also Meals on Wheels (mowaa.org) but I don't know much about that.

I'd also check with social services -- I think many hospitals have offices. And maybe insurance would provide a nurse that visits at home.
Cimzia, Asacol


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/10/2010 6:45 PM (GMT -7)   
GDen, unfortunately it would be thru the VA over two hours away.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 2/10/2010 7:16 PM (GMT -7)   
Hmm, maybe a long-range bus like Greyhound then. Or charter something. How long after surgery before someone can drive? I'd be inclined to drive myself and park in the hospital's long-term parking. Maybe stay in a motel for a night or two after release if necessary. I'm curious what you figure out since I'd be in a similar boat if I need surgery.
Cimzia, Asacol


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/10/2010 7:51 PM (GMT -7)   
Unfortunately the closest greyhound comes is an hour away. But I think am going to check into this full service retirement community if they would take someone who is 30, for these kind of health issues.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/10/2010 7:57 PM (GMT -7)   
Navy, could you afford to stay in a hotel near the hospital for the first few days after discharge?

Perhaps your insurance / the VA / whatever would subsidise it, esp as you have so few transportation options.

This *really* isn't good enough, especially for a veteran.

Another huge hug, dearest of Navies. You know I sympathise and empathise.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/10/2010 7:58 PM (GMT -7)   
ps. The reasoning behind the hotel is that you would have meals and, hopefully, room service, and a bathroom only a few steps away, and the staff to help you get back to the hospital should you encounter some sort of problem.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/10/2010 8:27 PM (GMT -7)   
No answers right now, just thinking about you Navy...
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/10/2010 8:34 PM (GMT -7)   
As far as meals go, it might help you to lay in a stock of enteral feed, as these are complete foods that will tide you over and keep you nourished, even if you can't prepare or buy proper meals for yourself.

I know it's not an ideal solution, but it's a start...
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


vietvet
Veteran Member


Date Joined Jan 2005
Total Posts : 1510
   Posted 2/10/2010 8:59 PM (GMT -7)   
hey, navy girl! ya know, i always used to point at the holiday inn across the street from one of the hospitals in des moines, and say "it'd be cheaper to check in over there, and have a doctor come visit you in a $70 room instead of a $500 room here." i don't know how relevant those numbers are now, but i bet it's even more so. and if you're talking about an 'assisted living' facility, that'll really set you back.

will this surgery be at the VA? is it in a bad part of town? is there a hotel nearby? you do drive, don't you? like ivy said, if you could just get a hotel room, park the car there, have the VA shuttle come pick you up, stay a week or so in the hotel (whatever it takes), and then when you can, drive home. it won't be cheap, but it'll be a heck of a lot cheaper than 'nursing home lite'.

maybe sniper could ride up, and i could ride down, and we could have an 'intervention' for your brother. smhair nono

vv

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/10/2010 9:04 PM (GMT -7)   
it is the KC VA let's just say you regularly hear small arms fire there...lol It would just be my luck that I would get shot going home!  Oh well hope I do not get shot in the head, it would really mess up my hair, and possibly my very expensive brain! 


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 2/10/2010 9:08:58 PM (GMT-7)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/10/2010 9:07 PM (GMT -7)   
Oh, Navy.

I thought you were going to Mayo, or am I mistaken?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/10/2010 9:10 PM (GMT -7)   
I am still fighting for it, but it looks like I am going to have to have surgery before then, and I doubt the VA would pay for it there.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/10/2010 9:14 PM (GMT -7)   
I can't believe the VA doesn't let you stay in some sort of supported convalescent facility. Surely they're dealing with a lot of sick and wounded veterans now, and have such a facility?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/10/2010 9:24 PM (GMT -7)   
Navy, I am so sorry you are having to face all of this alone. Have you had any contact with the social services department of the KC VA? This site [http://www.kansascity.va.gov/services/socialwork.asp ] says they help with all the issues you have outlined.
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/10/2010 9:32 PM (GMT -7)   
btw, Navy, I hope you know how much we care about you.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 2/10/2010 10:11 PM (GMT -7)   
Well if you were not so far away I would cook some cajun food for you but I guess you will have to settle for MRE's..Hey, beats C rations . You could maybe make some meals up ahead of time and freeze them ? But you shouldn't worry too much , because if they do you at the VA you may end up with an operation on your expensive brain by mistake and not have to worry about anything again. Who knows ,if they take out your brain , you can run for congress..
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 2/10/2010 11:25 PM (GMT -7)   
 Navy could run for Congress? Heck come a little more north and we'll suit you up for Prime Minister!smilewinkgrin
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 2/10/2010 11:26 PM (GMT -7)   
Seriously the best of luck and prayers too coming your way!
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 2/11/2010 6:16 AM (GMT -7)   
Hi Navy, I haven't got any answers for you but want you to know that Im also thinking of you and hope that you get the help that you need take care Bev x wink
Diagnosed with crohns at 13 now 43
Reversal of temp stoma Postponed till ???????
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 2/11/2010 6:36 AM (GMT -7)   
Navy the KC  VA website has a social work department that says it helps veterans find access to such services as transportation. Might call the hospital and ask for social work -- those departments usually have a full list of local agencies that provide all sorts of services to patients and families.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/11/2010 7:28 AM (GMT -7)   
Aww Navy I wish I lived closer, I would take care of you. But since I don't, and don't have any other suggestions that haven't already been given, please know that I will be keeping you in my prayers and here's hoping that your surgery brings you some blessed relief. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 2/11/2010 7:48 AM (GMT -7)   

Is there a Visiting Nurse service in your region (perhaps under some other name)? I would contact your local social services department, as well as that of the VA, and asked what they might have available in terms of home help aides/visiting nurses who could be assigned to you for a few weeks after surgery for full or part days, as needed, to help you with wound care and activities of daily living.

I can see that the cough would make healing extra difficult. Is it caused by sinus problems? I do nasal salt water washes four times per day, or three at a minimum, and that completely controls my own chronic sinus problems; without this regimen I would be constantly coughing. It's a mild nuisance (takes about 5 minutes each time), but being cough-free is well worth it. Another thing I can think of that causes chronic cough in some people is the use of ACE inhibitors to treat hypertension. If you are taking a medication in that class, it might be worth asking if you could experiment with a different class of antihypertensive drug to see if the coughing disappeared.

I wish you well with the operation.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 2/11/2010 8:21 AM (GMT -7)   
(((Navy))). I sympathize so very much with where you are. If I were not here, my husband would be in your shoes - no family, and few friends (who are good friends, but who cannot support a chronically ill person indefinitely). I think about that all the time - that my husband is fortunate to have been diagnosed with this illness after we were together . . . he is a strong person, but I know it would have been very rough for him without me around. I wish I could come help, but alas, geography is not in favor.

I think hospitals themselves have some social programs that could offer some of these services. Also, there are local church groups that probably provide some of these services - I am not a church goer, but I know that social workers at the hospital do have some information available regarding groups who maybe able to help (and a lot of them were through churches).

I'd suggest a hotel with a kitchenette and room service - that way you have the choice of either cooking or ordering room service. The assisted care facility sounds a whole lot better though - I think that's an excellent idea if you can afford it. Also, the frozen food section at the grocery these days has a bunch of steam in a bag options. Pre-cooked grilled chicken that can just be heated up, pasta in a bag etc - though it may not be bland enough to support your post surgery needs. The other suggestion I like is the enteral nutrition - you can probably survive on it for 10 days until you're well enough to heat up a few things.

I hope surgery, though rough to recover from, will give you your life back. We are here for emotional support if nothing else. I hope some of the suggestions you've been given help.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life

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