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Crohn's Disease Forum

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Since many of us have been dealing with Crohn's disease for some time, some as much as 30+ years (bless your hearts!), I thought I would start this thread as a place where people could offer some of the tips and tricks they have discovered along the way to take care of some of those everyday nuisances that come with having this disease. It can be anything from diet to personal hygiene to stress management...anything goes. If you think it may help somebody else, post it here!

So I'll start this one off with my tip on butt cleaning:D Every morning when I shower, I use those Olay daily facials to clean my face. Then I soap it up and use it on my butt. Its smaller, softer and less abrasive than a wash cloth and since it's disposable, it's more sanitary as well. I think this is especially helpful for those that deal with leakage. I buy them in bulk at Costco...I panic when my stash is getting low!

Now it's your turn...
 
Great idea Shadycat.
The biggest one I can think of, is something I learned since coming to this forum.

After vomiting, DO NOT use mouthwash right away - instead, rinse with baking soda. The mouthwash (like Listerine) is acidic, and will eat away at the enamel on your teeth faster than vomiting alone.
 
I put a splash of mouthwash in my bag to lubricate and help with the smell :)
 
Always floss your teeth twice a day cos Crohns causes receding gums and your teeth might eventually fall out!!!
 
My BEST tip ever is to buy some Calmoseptine!! It is the BEST soothing butt cream I have ever used. I have written that about 239487 times on here, but I truly can't praise it enough. I have had the feeling of broken glass in my butt from wiping so much or leakage, and it heals it up overnight.
Do a search on here if you want more info.

I also agree with the extra change of clothes in your car.


Astra101 said:
Crohns causes receding gums...
Click to expand...
I have never heard that before! Why does it do that?
 
ah good thread idea shady.

haha my num 1 tip is black undies/pants/swimsuit as well, lol ames!

if you must travel to get to your doctor/hospital team, pack an overnight bag everytime. even for just a regular appt. you never know when they will want you to stay in the hospy for tests and what not.....better to be prepared with your clothes and such than to a)wear a gown the entire time, b)buy the things you need from the gift shop, or c)try to beg someone to being you some items.
yes it did take me all of those expereinces to learn that lesson lol.

umm OO if you are a crapper in your pantser ALWAYS have a jacket or sweater than you can tie around your waist in emergency (well in times that things are esp bad at least). may be annoying to carry around, but IME is much better than sitting on the toilet in a public restroom, with poo covered pants, trying to figure out how youre gonna make it out of there and back to your car with no embarrassing incidents...
 
Last edited:
"if you are a crapper in your pantser "

OMG kello...you come up with the best one liners!!!

With a hint of poo..and now this! Fantastic!!
 
[QUOTE



I have never heard that before! Why does it do that?[/QUOTE]

My dental hygienest told me, she said cos Crohns is anywhere from mouth to anus, and if we don't floss bacteria from our teeth, then inflammation during a flare could end up in our mouths and on our cheeks (it looks like white ridges apparantly) then eventually the gums will recede, with gum disease, which is irreversible. So Crohnies are more susceptible to gum disease
I am 46 and my gums are starting to recede, too late for me!
prevention rather than cure!
http://www.umm.edu/patiented/articles/who_gets_periodontal_disease_000024_4.htm
heres a link about it
 
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Astra is right! My sister is a dental hygenist and she is right. My gums have receded and thought it was from not brushing right or overbrushing. I had some roots showing and they just covered it with enamel. I also use sensitive toothpaste, and it works.

My tip is: Tenn wipes, they are big huge wet cloths for those messy jobs. I have small shoppersdrugmart one's too for every day. Women have to be careful if they dont get all the messes away from certain areas ;).
 
That is very interesting about the receding gums. I'll have to keep an eye out for that. And perhaps make a visit to the ol' dentist! We haven't yet found a dentist since moving up to Chicago. Guess we should start looking!
 
One of the tips above has just solved what's been turning into a major problem for me. Thank you, and please keep them coming! I'll add a tip as soon as I figure something out. :)
 
I have a question how did yall put pictures next to your places to post
bethy
ps it might to seem stupid but I'm not very computer savy
 
bethyd78 said:
I have a question how did yall put pictures next to your places to post
bethy
ps it might to seem stupid but I'm not very computer savy
Click to expand...

with difficulty :p seems you dont get automatic privilages after 50 posts..plus seems ppl cant change their AV atm cos of computery probs so either pm a mod and/or wait until everythings sorted.

:sorry:
 
Keep two wardrobes. I have a sick and a healthy wardrobe...skinny and healthy. My wardrobe ranges from a size 6 to a size 0.

Get moist wipes for the bathroom. Can be the wipes for cleansing or pain relief. Totally worth it when you go many times a day.

If you can't keep food down and weight on try drinking Boost or Ensure Plus 3 times a day. It helps me from turning into a skeleton.
 
Biggest one ive learnt is dont get too upset / stressed. yeh it can be very hard and embarassing at times but if theres nothing you can do to change it then why worry ... taking pity isnt going to help (tho if you feel that way talk about it and dont keep it in. Theres always family friends and this forum to help)
 
Just a Drop! Put a drop in the toilet before you go and you wont smell up the bathroom. It can save so much embarassment.
 
Lydia said:
Just a Drop! Put a drop in the toilet before you go and you wont smell up the bathroom. It can save so much embarassment.
Click to expand...

:ylol2: Ha I use it but only when my family is home lol. This morning I didn't and my dogs wanted out pronto! :ylol2:
 
I wonder if the Just a Drop stuff would work in my bag? I'll have read the label to see if it needs water to work or not (I don't have water in my bag, so wouldn't work if that's a requirement). Could be interesting.
 
I keep Cup a soup packets with me for some food, but easy to digest.
Keep water with you, you will get dehydrated quick.
Keep toilet paper in your purse.....you can never have enough and you will be mad when you are out...need to go...run quick to nearest toilet... and what do you know.... there is no TP!#(#I$O#O!
when you go anywhere always find out first where the bathroom is, even if you are feeling good. Coz when you need to go... you realy wont want to stop and ask ppl
I have not done this, and don't realy know if it works.. perhaps someone else can verify it. A friend told me she puts tick tacks in her ostomy bag to reduce smell?? I don't have an ostomy so perhaps someone who has can verify this.
 
If/when I venture out the house I carry a couple packets of personal tissues in my pocket
they don't draw much attention etc if they fall out the pocket cos well there tissues unlike trying to explain why you are carrying tp with u
and they do ok for emergancy tp

I also take an old back pack/bag with me which has all my necessary esentials in it
like tp spare clothes a plastic bag to put accident damaged clothes in, deoderant, spare coin for emergancies

no one seems to notice or care if ya carrying a back pack

guess you women can just carry a larger hand bag an do similar too
 
Tic tacs eh? Hmmm...haven't tried that...maybe I'll give it a go and let everyone know how it goes...
 
Baby wipes! So much easier on the bum than toilet paper. It leaves you feeling cleaner too.

I have many different sizes of clothing ranging from size 5 to size 9.
 
in a time when youre feeling good enough, draft up some charts in which you can record you weight, food intake, med schedule, fevers, # of bm's, etc. SAVE THEM to a file.

then when you are flaring bad and need to monitor your symptoms you can just print them out.

i find it helps me record things such as food intake if i have something already premade and im not jsut scribbling on random papers.
this is for both yourself, as you can see what you need to work on to help your body and also to shove in your docs face and show him that YES something is wrong.
 
Good idea Kell

perhaps someone could draughts one up using the crohns symbol etc- make it look pretty oficial an then post it up here as a pda file or something
maybe once the drs start seein a few of the same paperwork from different people they will realize we are trying to do something and actually research an talk to others with the disease
then they may pay a bit more attention
 
I just found out another tip!
I folded toilet paper 4 times, put a little squeeze of Calmoseptine in the middle, then folded it twice more and put it in my pocket for a day that I was gonna be out of the house ALL day. Then, if I had to go or had a little leakage, I'd have some. AWESOME!
 
kello82 said:
in a time when youre feeling good enough, draft up some charts in which you can record you weight, food intake, med schedule, fevers, # of bm's, etc. SAVE THEM to a file.

then when you are flaring bad and need to monitor your symptoms you can just print them out.
Click to expand...

That's a great idea, Kello. To add to that, if you're too lazy like me, sometimes it help just to go back and read all of your old posts to see what was going on with you at certain times. Who knew this forum could serve as a diary as well?
 
merrywidow said:
you can never have too much loo roll.
Click to expand...


You got that right! I was OUT before our last major blizzard and had to run to the store last minute to get more! What a rookie!
 
Like most people I try and avoid using the toilet in a "big" way in someone else's house. But occasionally, to my embarrassment, I just have to go. I do not necessarily want to spray perfume around afterwards, thereby announcing my specific purpose in the bathroom :)

So the very best way to elimninate ALL traces of unwanted odours is to burn a match afterwards. It really works, as it burns up the gases that create the odour.
These days I carry a small box of matches with me in my purse all the time.
 
When shopping, always take someone else with you. That way if you have to pass gas you have someone else to put the blame on. Janis loves me for this. That and it helps me get out of going shopping after a few times.
 
Was reading that post pirate an thinkin ah yea incase ya gotta run for the toilet they can look after ya shopping, ....... But noooo lmao. that's just gold mate
 
This has been huge for me...I always make my doc appts. as early in the morning as possible. I have found that later in the day, my doctors always seem to be running behind schedule and don't take as much time with me. Whenever my appt is early, he is still on track and gives me more time and attention. Also helps with time spent in the waiting room. It really seems unfair that this should be the case, but I have noticed a definite difference.
 
I have one

Do NOT buy toilet roll with Aloe Vera in it!!
It skids right off your arse!!!
 
or charmin or what ever its called these days as it blockes up the loo. no fun having a blocked loo!!
 
merrywidow said:
or charmin or what ever its called these days as it blockes up the loo. no fun having a blocked loo!!
Click to expand...


That is one of the reasons I dont use Charmin.. plugs up way to much! :voodoo:
 
Astra101 said:
I have one

Do NOT buy toilet roll with Aloe Vera in it!!
It skids right off your arse!!!
Click to expand...

I'm laughing so loud I think they are going to send the psych consult into my room!
 
Astra101 said:
I have one

Do NOT buy toilet roll with Aloe Vera in it!!
It skids right off your arse!!!
Click to expand...

Duly noted!
Hahahah!
Thanks, Joan, for the practical information and the giggle.
 
WE dont have that here in Canada. Oh well I have good tp that I use, having a septic tank you have to be careful. Thanks for letting me know.
 
If you are a girl, buy a really big purse so you can put an extra pair of pants, panties, socks (in case your socks get filled, you don't want to walk around squishing!), and a plastic bag (to put your clothes in if you don't want to throw them away, or if there is no trash can). Also carry around baby wipes. Those have come in very handy for me when I have to use a public restroom and all they have is John Wayne toilet paper!
 
If you're Canadian and on Humira or other expensive meds, use Safeway Pharmacy! They give you 7x Airmiles on any prescription purchase BEFORE insurance. So, even if you're covered by insurance or pharmacare, you still get Airmiles based on the entire price before coverage...

My Humira prescription alone gets me 1650 Airmiles every 3 months ($4800 prescription). That is ALOT of Airmiles; Methotraxate, maybe another 50. Misc, another 10.

I think one province is exempt, and not all provinces have Safeways... but worth checking into.
 
John Wayne toilet paper?
Now that I gotta see!!
My imagination is runnin riot!
 
MsSickandTired said:
If you're Canadian and on Humira or other expensive meds, use Safeway Pharmacy! They give you 7x Airmiles on any prescription purchase BEFORE insurance. So, even if you're covered by insurance or pharmacare, you still get Airmiles based on the entire price before coverage...

My Humira prescription alone gets me 1650 Airmiles every 3 months ($4800 prescription). That is ALOT of Airmiles; Methotraxate, maybe another 50. Misc, another 10.

I think one province is exempt, and not all provinces have Safeways... but worth checking into.
Click to expand...

Hey never thought of that, but safeway's food is very pricey... I used to get points with my prescriptions with Shoppersdrugmart. But they stopped that. I just might check it out. The only thing is I am still on meth but by injection and at the hospital so I dont pay for it anyways. :)
 
These are a few tips I've worked out for when I have cramps at night. I have this aloe vera heat lotion which I rub onto the cramping area (I suppose it's the same as deep heat, but a bit more natural) it feels a bit odd but it makes my cramps go away.

Also my sister made me one of those heat bags to put in the microwave, they're really easy to make, just have a pouch of material, fill it with pearl barley or rice, add some essential oil or fresh herbs and just remember when you put it in the microwave to put a small cup of water in with it so the insides don't burn. It stays warm for much longer than a hot water bottle, so means I don't have to keep getting up and down to reheat it.

I hope this helps someone out :)
 
hi Cara-lou - that's an excellent idea about putting a cup of water in the microwave with those heat bags... i once cremated a furry dog wheat bag in my microwave :(
 
Astra101 said:
John Wayne toilet paper?
Now that I gotta see!!
My imagination is runnin riot!
Click to expand...

lol not sure where this came from... but fyi:

John Wayne toilet paper = rough, tough, and don't take crap from nobody..... lol



anywhos.... my tip would be:

I love my flannel sheets - the really "good" ones...even in the summer time... I find that when I have night sweats (which is almost every night)...the sheets don't feel as "icky" as when you wake up in the middle of a puddle of wet cotton sheets....

Or the other thing I do, if I KNOW I am going to have a "sweaty" night... lay a nice big fluffy absorbant beach towel (again - one of the "good" ones, not from Walmart...lol ) down to lie on.... then when you get up in the middle of the night, you can just take it off and you still have a dry bedsheet underneath to get you throught the rest of the night.....

Works for me, anyway :$
 
My Butt Hurts said:
I just found out another tip!
I folded toilet paper 4 times, put a little squeeze of Calmoseptine in the middle, then folded it twice more and put it in my pocket for a day that I was gonna be out of the house ALL day. Then, if I had to go or had a little leakage, I'd have some. AWESOME!
Click to expand...



You can buy little packets of Calmoseptine for your purse! Also, Cottonelle wipes come individually packaged for purses too. :)
 
Mini Calmo and Cottonelle?

Where? Where? I need some!

*rushes off to Google*
 
Are these andrex wet wipes worth getting?? - or do they plug up the loo!

Gonna ask for the calmoseptine at Boots- fab tips guys :)
 
Hi Deb and :welcome:

Glad you found us! Do you think you might like to tell us a bit about yourself in the Your Story Forum so we can welcome you and get to know you. I hope you stick around.

Welcome aboard!!!

All the best,
Dusty
 
Thanks. I'll keep looking for the mini Cottonelle wipes.

I asked my pharmacy today about the mini Calmo packets and they won't bring them in ("we wouldn't sell them all") so I would have to pay $100 for the box of 144. Oh, well! I'll try somewhere else. :)

Debccmhc said:
The Cottonelle wipes are in the supermarket and drugstore, Target, KMart etc. My pharmacy gets the packets of Calmoseptine ( 60 cents/pack) :)
Click to expand...
 
Always, always, always remember to put the pin holes in the liners of your bag. If you don't, the first time you get bad gas, your liner explodes...not pretty. Only did that once....lol
 
Tiger Balm - helps so much with stomach pains so much. Havent found anything better.

This is what the website says:-
Tiger Balm White is effective for head aches, stomach flatulence, stuffy nose, itchiness, insect stings, and muscle and joint aches. Just rub the balm into your skin, and its pain relieving properties will work quickly to reduce swelling, aches, and other discomfort that irritates the body.

I carry a jar everywhere I go now
 

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