preparing to be more housebound and disabled - need advice and opinions

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ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 9/4/2008 7:35 PM (GMT -7)   
Here's what I've done so far. Have I missed anything?

Please let me know if there's something you think I ought to have considered, and haven't, as I'm here by myself and really struggle to get out once the Crohn's starts to get bad.

With luck I won't need to have done all these preparations, but I'd feel more secure being prepared than not.

I've:
* ordered in enteral feed (a bit like Boost / Ensure) to drink if I can't eat
* got a mobile phone so I can call for a taxi, wherever I am, if I can't drive or walk
* am getting in extra groceries so I don't need to go to the shops as often as I normally would
* have a light vacuum so cleaning will be easier
* have worked out how to pay bills by phone, so I don't need to go to the post office
* have sent birthday parcels etc so I don't need to go to the post office for a while

Once I get some space in my freezer I'll make some pureed soups and put them aside for days when I don't feel up to cooking.

I know how to order Meals on Wheels, but I'd prefer not to have to rely on them, as their meals tend to make me sick.

Is there anything else I should do? Anything people here have found that they've needed once they became housebound, and wished they'd got for themselves when they were mobile and more able to?

Thanks,

Ivy.
Co-Moderator Crohn's Forum.


FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 9/4/2008 7:42 PM (GMT -7)   
Ivy - I have never been in your situation and want to send some extra hugs your way. Might I suggest you post on the anxiety board too? I remember reading there that several people are housebound.

Here is what I think you might be forgetting -
Some entertainment? Buy, rent, borrow some movies and books. Do you have any other hobbies? Would you like to learn any? Painting, knitting, etc. Get some stuff that you can do for fun without moving much.

Do you have plenty of toilet paper, baby wipes, soaking salts, creams? Do you drink pedialyte? Eat saltines, jello, etc? Those are things I rarely have in the house until I need it.

Do you have any family or friends there? If not you should come move to the states near some of us so we can take care of you while you are ill!!! Maybe let people from your church know you will be facing a rough time and maybe they could call and check on you here and there and bring you anything you forgot.

Oh, do any of your meds need refills soon. Do you have any pain meds you might need?

Hope that helps! Know that I am thinking of you and hope that you do NOT end up housebound. Just curious, which bothers you more, the digestive tract or the joints?
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 9/4/2008 7:53 PM (GMT -7)   
Jelly! That's one thing I hadn't considered. Thanks, Fitzy. Hate the stuff - too much association with colonoscopies - but it is useful when one can't cope with anything else. Thanks.

I'm working on the hobbies (I've pacted to think about it and start preparing) and I have shelves of books to read, so that's ok.

What's pedialyte, and what are saltines?

Meds are ok, as I can get them delivered. But I do need to think about painkillers.

I know this sounds like overblown anxiety, but trust me, it's justified. I got myself into huge strife about eight years ago with a bad Crohn's flare and no help. Everything got complely out of control and I was unable to take care of myself. I was living in the city and, even though I was an involved and active community member, nobody seemed to want to get involved or help. My mother had to come and rescue me and bring me home, but she has died, so I'm alone now.

I've been fairly housebound and isolated for eight or nine years, but I've made a few new friendships since I've been on Humira. They're fairly new friendships, though, and I don't want to dump too much responsibility on people. The person who is my main rock and friend is about to go overseas, so won't be here to call on.

Thanks,

I.
Co-Moderator Crohn's Forum.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/4/2008 8:00 PM (GMT -7)   
ps. I should say that I've qualified for one of the two community care places available for younger people in our town - a set of in-home services to keep very frail, ill and disabled people out of residential care - but, though I've been put on the high-priority list, I can't actually access the help until someone who is using one of those places already dies or goes into care.

So, I'm stuck by myself until a space becomes free...
Co-Moderator Crohn's Forum.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/4/2008 8:25 PM (GMT -7)   
Saltines are plain thin white crackers with just a little salt on top that you usually get on the side with soup. My mom used to give them to me when I was naseaus. They are bland but take the edge off of hunger.

Pedialyte is a drink sold near the baby food and formula that is used to keep infants and toddlers with the flu hydrated. It is full of electrolytes and no sugar unlike sports drinks. I love it and will drink an entire bottle a day when flaring or on a liquid diet.

Do you live near a college or high school? Many require or promote community service now. My college recruited students to help an ill member of the neighboring towns community. She needed help with child care while her husband was hospitalized and she too had an illness. Maybe if it gets to that point you can call the local schools and ask if anyone would like to volunteer to run errands for you.

You could also try the business number for your local hospital or fire station or even police station to find out if there are any community service programs that help the housebound.

I am very worried about you and hope you fare well.

By the way, I was not suggesting that you are suffering from anxiety. I was suggesting that due to anxiety some people are housebound and could give you suggestions over there on what they wished they had.

Adding to the list:
- soup
- ginger ale
- tea
- instant rice
- dramamine or benadryl (motion sickness and allergy med respectively) to knock you out if you can't sleep
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/4/2008 8:36 PM (GMT -7)   
Thanks, Fitzy. Do you have Sakata crackers there? Are Saltines the same thing?

I live in a rural community and anybody who is physically ill (rather than mentally ill or physically disabled) has a hard time accessing services, because 99% of funded help is mandatorily given to those over the age of 65. I've gone the complete circle working through all the community services - several times, even - and the only help available is the care package I mentioned above. I was able to access help there because they give priority to people who have fallen through the cracks everywhere else.

I'm aware that community service is big over there, but Australia is a bit behind the US, and only the expensive private schools seem to be on board so far. The rest are still stuck in the stranger danger / molestation / litigation mindset. Even the Scouts and Guides, who used to be bastions of this sort of service, have pulled out of home-based help in order to protect the kids from molestation etc.

I **am** a Guide (aka Girl Scout), so you'd think I'd be the obvious person for them to send help to, but it doesn't happen these days...

Ginger ale and lemonade - thanks. Forgot about those.
Co-Moderator Crohn's Forum.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/4/2008 8:48 PM (GMT -7)   
"STRANGER DANGER!" One of my favorite lines from Ralph Wiggim from the Simpsons. So sad that our world has come to that. Glad I gave you more suggestions and keep us posted. Oh yeah, and if you want to move to Maine I promise I'll take care of you lol!! The winters are very cold here though. But snow can be fun!
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/4/2008 8:48 PM (GMT -7)   
ps. One good thing is that **apparently** I "only" need to get back to a CDAI score of 300 to get back on Humira. I start to flare in the few days before each Humira injection and the nurse told me that, since I have a relatively short-lived response to the drug, it may only take me a month or so to get sick enough to requalify.

Anyway, I worked out that 300 is d approximately 10 times a day, and moderate pain, and a few extra symptoms. 10 bms a day isn't as bad as the 30-40+ I was having before.

Still, a month's a long time when you're struggling...
Co-Moderator Crohn's Forum.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/4/2008 8:49 PM (GMT -7)   
Snow would be fun - I've never seen it falling!

Thanks, Fitzy :-)

Ivy, off to the doctor's...
Co-Moderator Crohn's Forum.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/5/2008 10:02 AM (GMT -7)   
Wow Ivy I am so sorry for all you are going thru and to go thru it alone has to be very difficult for you. Please know that I will definetly keep you in my prayers. I know easier said than done, but try to keep a positive attitude. I pray your doctor visit today will maybe provide you some more answers to your situation. (((HUGS)))
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/5/2008 2:16 PM (GMT -7)   
Hi Ivy do you have a crohn's society over there ? I was thinking you could call them and ask if there is any support for those who are having flares. I am glad to hear that you might qualify soon for more Hum. Gee we all will be keeping our eyes on you. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/5/2008 4:11 PM (GMT -7)   
LOL. Done the Crohn's society, gail; nothing's available. As I said, if you're chronically ill and under 65, not mentally ill and not disabled, there are few options for getting help.

Looby, what are boilings? Are they boiled lollies?

Online shopping isn't an option here but there is a shop where I can phone an order through and have it delivered.

Frustrating being in an area with so few services.

I.
Co-Moderator Crohn's Forum.


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 9/5/2008 4:29 PM (GMT -7)   
don't really have any ideas to add...just wanted to offer support and hugs.
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/5/2008 4:34 PM (GMT -7)   
Thanks, closure. Hopefully all this preparation won't be needed. Still, better prepared than not...
Co-Moderator Crohn's Forum.


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 9/5/2008 4:40 PM (GMT -7)   
No items other than what was mentioned above. I wish you lived closer. I would help take care of you through this. You poor thing. I am so sorry you have to go through all this!! (((Hugs)))
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 5mg every other day- I am almost off!!  YAAHH!!! :-)
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin twice a day
                           Cipro
No Surgeries
 


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/5/2008 5:55 PM (GMT -7)   
Fitzy had all my ideas, but I wanted to offer my hugs and support. (((((hugs)))))
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.....


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 9/5/2008 6:35 PM (GMT -7)   
maybe some type of therapist or something to help you with the feelings that you must stay home. ?

i think the brits call saltines, soda biscuits? try looking up saltines on the web and that should give you a better idea... good luck ivy
randynoguts 



     http://www.geocities.com/randynogutsweb/


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/5/2008 6:50 PM (GMT -7)   
From what I recall you are pretty isolated geographically, so I can understand the need to stay at home. I cannot think of anything that has not been already discussed but wanted to send you hugs.
(((((((((((((((IVY)))))))))))))))
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Tj1
Regular Member


Date Joined Jul 2008
Total Posts : 71
   Posted 9/5/2008 11:06 PM (GMT -7)   
Ivy sorry you are having to go through this. Just wanted to let you know you are in my thoughts and prayers and to send you a big (((((hug))))).
 DX'd with UC 2000.
 DX'd with CD 8-9-08
 
 allergic to Asacol
 Colazal made it worse
 Prednisone 20mg X2 daily   
 Flagyl 500mg X2 daily
 First Remicade infusion 8-9-08
 
 Toprol XL --  Hypertension
 Insulin   --   Diabetes 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 9/6/2008 3:47 AM (GMT -7)   
You can buy a small freezer for about $100. You could put your soups in there and
any other frozen food you might buy.
Food in cans is better for me because our power goes off and it's still running 101
degrees.
Quality paper plates, cups, and glasses will save dish washing.
Have plenty of stuff like TP, paper towels, soap, bleach, garbage bags. Think
carefully what you might need. It's so awful to run out of of one of those items.
Candles, flashlights, battery radio
Get to know a neighbor if possible. Help each other.
You could hire a girl to come in and clean a bit or go to the store.
I'm always trying to prepare too. My arms don't work well and I experience Chronic,
Intractible Pain.
Pamela Neckpain
P.S. I wish you well with this. Don't forget those Boilings! smurf

Veronica Ballerina
Regular Member


Date Joined Nov 2007
Total Posts : 69
   Posted 9/7/2008 4:09 PM (GMT -7)   
ivy6 said...
I've:
* ordered in enteral feed (a bit like Boost / Ensure) to drink if I can't eat
* got a mobile phone so I can call for a taxi, wherever I am, if I can't drive or walk
* am getting in extra groceries so I don't need to go to the shops as often as I normally would
* have a light vacuum so cleaning will be easier
* have worked out how to pay bills by phone, so I don't need to go to the post office
* have sent birthday parcels etc so I don't need to go to the post office for a while
Hello, I have been housebound for a while that is what I have been doing.
- If I am not ok to eat i don't, I just drink my Ensure/Modulen, It is better, you will not get unfed.
- Groceries, I buy all by internet, I have 4 "shopping carts" saved in my favorite virtual grocery shop, when I need I just pick one of them, change one thing or another and pay, they delivery here in my home.
- If you can get someone to help you with the cleaning!
- I pay all my bills in the internet banking, very safe and I do not have do leave my home.
- Get your mind busy! I have subscribed in this site http://www.sharedtalk.com/ this is a site where you create your profile and say that you are a native english speaker, you can also say that you would like to learn another language, there are a lot there, then you share with the other users, so they teach you the language you want to learn and you teach them english, is very nice, if you have a microphone you can talk we people from all over the world or if ou rather you can just use the text chat, take a look.
- Download Movies and TV series http://movies.katz.cd/
- I am alrealdy graduated in Computer Science and have a Master degree on it, but I was think to back to college, Maybe a degree in languages, a distance education college, so I do not have to leave home!
Hope ou get better!


Veronica Nunes - 27 years - Brazil

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