Share Facebook
Crohn's Disease Forum » Treatment » Living on the toilet


 
01-24-2017, 03:05 PM   #1
Edgey
 
Edgey's Avatar
 
Join Date: Jan 2012
Location: Wolverhampton
Living on the toilet

Hey guys,

just curious to get all your advice and opinions on the matter of going to the toilet, do you go too much or too little?

if so how do you treat it?

making a thread on this because i feel when I'm not in pain and catch a short break (current situation) that I'm being held back by the toilet so i still can't go out my house.
I found myself browsing the threads for a similar situation but couldn't really find one so i though it'd be a good idea to make a thread on it.
For me personally i feel diet contributes a minuscule amount to my situation i just keep going to the toilet, I've tried loperamide and questran neither work too well if at all some days only way they do work slightly is if i dont eat at all and take those

Last edited by Edgey; 01-24-2017 at 06:04 PM.
01-26-2017, 05:21 PM   #2
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Most of the time, I go too much. Sometimes I take Immodium. Other times, I just ride it out. I has a nutritionist once tell me that you can eat all the right things and still have a bad day.
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
01-26-2017, 05:55 PM   #3
Lizzie
Senior Member
 
Join Date: Jun 2011
Location: East Midlands

My Support Groups:
There's actually a faecal incontinence support group on this forum, where you will find people now and then sharing their experience of going to the toilet far too much. It certainly holds me back from leading the life I would like to lead, and there seem to be a lot of us whose biggest problem is not being able to be more than a couple of minutes away from a toilet. My GI won't let me use anything like loperamide, but when things are terrible she puts me on steroids to calm it down (and suggests biologics, but no way would I go for them).
01-26-2017, 08:12 PM   #4
Lisa
Adminstrator
 
Lisa's Avatar
 
Join Date: Apr 2010
Location: New York

My Support Groups:
Having to use the toilet that much is a sign your disease is not under control. Are you on medications at this time? If so, they may need to be changed, if not, sounds like you should be going to the doctor.
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
01-26-2017, 08:33 PM   #5
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I agree

01-26-2017, 08:40 PM   #6
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Edgey,

I think you need to talk to the GI. Sounds like a flare, or the start of one to me. Inflamation does strange things. I also would suggest vegetarian omega 3's as directed on the bottle. SISU is the brand I take, non GMO soft caps. I have noticed less flare ups.

All the best,

cmack
01-26-2017, 08:47 PM   #7
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Edgey,

You can pm me any time. I have had an undiagnosed form of IBD for a decade at least now. Maybe we can share some helpful advice. Sometimes I feel chained to the toilet myself. I have a few tricks up my sleeve though!


cmack
01-26-2017, 09:22 PM   #8
Edgey
 
Edgey's Avatar
 
Join Date: Jan 2012
Location: Wolverhampton
Having to use the toilet that much is a sign your disease is not under control. Are you on medications at this time? If so, they may need to be changed, if not, sounds like you should be going to the doctor.
my disease has never been under control lol no medication has worked for me currently about 8 weeks into vedolizumab just passed the loading dose faze, see how this goes.

Edgey,

I think you need to talk to the GI. Sounds like a flare, or the start of one to me. Inflamation does strange things. I also would suggest vegetarian omega 3's as directed on the bottle. SISU is the brand I take, non GMO soft caps. I have noticed less flare ups.

All the best,

cmack
Thanks for the advice i'll try it out

Edgey,

You can pm me any time. I have had an undiagnosed form of IBD for a decade at least now. Maybe we can share some helpful advice. Sometimes I feel chained to the toilet myself. I have a few tricks up my sleeve though!


cmack
i'll take you up on that
02-01-2017, 06:16 PM   #9
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Edgey,

Hope you are doing better.
02-05-2017, 03:40 PM   #10
Edgey
 
Edgey's Avatar
 
Join Date: Jan 2012
Location: Wolverhampton
Edgey,

Hope you are doing better.
Same old pretty much i bought some omega 3 as directed by you but i can't seem to get the vsl#3 anywhere lol looks like I'm gonna have to go to the big pharmacies up town which is a whole other mission in itself lol i guess i could ask my GP if i should take them too.

Thanks for the help bud but it appears nothing is working for me lol as usual, the lost cause i am

I started Vedolizumab on the 5th of December I'm not sure how long it takes to take affect.
02-05-2017, 04:34 PM   #11
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hey Edgey,

It may take time for improvements to happen. Sorry to hear the VSL#3 is so hard to track down. It really helped me. Ask the doc maybe he/she has a lead on where to get some.

Best wishes,

cmack
02-06-2017, 03:28 PM   #12
Anymousgirl
 
Join Date: Feb 2017
i donno
02-06-2017, 07:23 PM   #13
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hey Edgey,

I'm thinking about you bud. I sure hope you are OK.

cmack
02-06-2017, 07:28 PM   #14
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Edgey,

Once you get the right treatment you will get better.(eventually) Hang tight buddy! I'm hoping and praying for your remission. Maybe a new Doc wouldn't hurt either. Something to think about.


Wishing you all the luck you can handle,

cmack
02-06-2017, 08:09 PM   #15
Edgey
 
Edgey's Avatar
 
Join Date: Jan 2012
Location: Wolverhampton
Edgey,

Once you get the right treatment you will get better.(eventually) Hang tight buddy! I'm hoping and praying for your remission. Maybe a new Doc wouldn't hurt either. Something to think about.


Wishing you all the luck you can handle,

cmack
hey,
i got diagnosed when i was 16 and im now 23 and still no treatment has worked lmao and yeah i've only just switched hospitals at the start of my vedolizumab treatment, once again thank you cmack

Edgey
02-06-2017, 09:07 PM   #16
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Edgey,

My first serious bout was at age 27 (38 now). I probably had it most of my life (or all of it). I always had these gastro problems and rectal irritation but chalked it up to a bad hot dog at the hockey game or some other thing I ate. I'm disabled now but just as much as I'm disabled, I'm still able more than disabled! There are still a lot of things that I can do. Some I can't. Oh well life has a funny way of going about things. I'm along for the ride. I like to look at what I can do, not what I can't. Rah Rah, and all that stuff. I know you are hurting right now. Things WILL get better!

I'm on your side bud,

cmack
02-07-2017, 10:44 AM   #17
Edgey
 
Edgey's Avatar
 
Join Date: Jan 2012
Location: Wolverhampton
Edgey,

My first serious bout was at age 27 (38 now). I probably had it most of my life (or all of it). I always had these gastro problems and rectal irritation but chalked it up to a bad hot dog at the hockey game or some other thing I ate. I'm disabled now but just as much as I'm disabled, I'm still able more than disabled! There are still a lot of things that I can do. Some I can't. Oh well life has a funny way of going about things. I'm along for the ride. I like to look at what I can do, not what I can't. Rah Rah, and all that stuff. I know you are hurting right now. Things WILL get better!

I'm on your side bud,

cmack
Thanks bud glad you can see positives of everything lol I guess I've kind of learnt that too with time, hope all goes well in future for you.
I get some serious acid reflux with this Vedolizumab going to book an appointment with my GP tomorrow and maybe get some omeprazole or something I'm also taking weight gainer shakes (lightly working out) because I'm skinny due to my disease lol but I'm not sure that's wise?
I'm just eating everything I can eat and hoping I put weight on lol but its soo slow
02-07-2017, 11:14 AM   #18
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Edgey,

You are probably dehydrated too. A person can lose a lot just from water weight. Stay hydrated. Can you drink Gatorade or Powerade? It might might help you feel a bit better maybe up your energy a little too.

Hoping things improve for you bud,

cmack
02-07-2017, 11:58 AM   #19
Edgey
 
Edgey's Avatar
 
Join Date: Jan 2012
Location: Wolverhampton
Edgey,

You are probably dehydrated too. A person can lose a lot just from water weight. Stay hydrated. Can you drink Gatorade or Powerade? It might might help you feel a bit better maybe up your energy a little too.

Hoping things improve for you bud,

cmack
yeah I try to drink 1.5litres of water a day not always successful but I drink like 10 litres of tea lmao and I've been through a faze where I was living off of red bull lol and that caused a cavity In my tooth lol
and thanks once again ;D
02-07-2017, 01:13 PM   #20
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Edgey,

I always aim for at least 2 litres usually more like 3L. In the summer I go for about a gallon but it depends how big you are and how much you sweat etc. The runs can dehydrate you pretty quick too though. Keep that in mind.

My GP says That I should drink more water than anything else and that I should never drink artificial sweeteners as they are in his words"Liquid Poison." I took his advice and am doing better than I have been for years. I also adopted a vegetarian diet and take 1000 IU of vitamin D3 on any day I can't get a sunburn, as well as 1200mcg of B12 daily. As far as the diet goes that helped me too. I drink a little too much coffee...kind of like you with the tea. Hahahaha! Remember caffeine is a diuretic though and it will dry you out. I just have to make up for it with an extra litre of water LOL!( I prefer filtered water Brita as our water is gross tasting) It's funny after a while of drinking lots of water, it seems to be what you want more than anything when you get thirsty.

My Doc is new as of last year (to me). Before that he was overseas for two tours of duty in the Canadian Medical Corps in Afghanistan and Iraq (Officer in Command of his unit). Cool guy, he sets a great example as he does all the things he recommends as well. I like that kind of guy. Do as I do, not do as as I say kinda deal. We also are both martial artists so that's cool too we both admire Bruce Lee (TRUE). We also share workout tips. I swear I should book an hour visit instead of 15min because I think we get carried away talking almost every visit!

He is even giving me a chin up bar next visit. Just cause he likes me and he got a new one as the old one won't work in his new house.

Yeah I once had quite the thing for monster energy or Red Bull too. I quit that kind! It's like crack in a can! and expensive too! LOL

I just thought I would share these things with you as you seem like a really nice guy.


Wishing you all the best,

cmack
02-07-2017, 03:14 PM   #21
Edgey
 
Edgey's Avatar
 
Join Date: Jan 2012
Location: Wolverhampton
Edgey,

I always aim for at least 2 litres usually more like 3L. In the summer I go for about a gallon but it depends how big you are and how much you sweat etc. The runs can dehydrate you pretty quick too though. Keep that in mind.

My GP says That I should drink more water than anything else and that I should never drink artificial sweeteners as they are in his words"Liquid Poison." I took his advice and am doing better than I have been for years. I also adopted a vegetarian diet and take 1000 IU of vitamin D3 on any day I can't get a sunburn, as well as 1200mcg of B12 daily. As far as the diet goes that helped me too. I drink a little too much coffee...kind of like you with the tea. Hahahaha! Remember caffeine is a diuretic though and it will dry you out. I just have to make up for it with an extra litre of water LOL!( I prefer filtered water Brita as our water is gross tasting) It's funny after a while of drinking lots of water, it seems to be what you want more than anything when you get thirsty.

My Doc is new as of last year (to me). Before that he was overseas for two tours of duty in the Canadian Medical Corps in Afghanistan and Iraq (Officer in Command of his unit). Cool guy, he sets a great example as he does all the things he recommends as well. I like that kind of guy. Do as I do, not do as as I say kinda deal. We also are both martial artists so that's cool too we both admire Bruce Lee (TRUE). We also share workout tips. I swear I should book an hour visit instead of 15min because I think we get carried away talking almost every visit!

He is even giving me a chin up bar next visit. Just cause he likes me and he got a new one as the old one won't work in his new house.

Yeah I once had quite the thing for monster energy or Red Bull too. I quit that kind! It's like crack in a can! and expensive too! LOL

I just thought I would share these things with you as you seem like a really nice guy.


Wishing you all the best,

cmack
yeah Its not recommended to drink so much water as it fills you up then you don't eat as much lol but I suppose like you say water weight maybe there is a balance, I should aim for 2L or something higher maybe.

I agree about the artificial sweeteners but sometimes its hard to avoid them if you wanna eat everything you see in order to put weight on lol, I've also been vegetarian and it did nothing for me. I think diet is only a partial issue as long as I steer clear of junk food I seem to be ok but my crohns is still active I guess also I have supplemented on vitamin D3 for quite some time as the prednisolone messed my bones all up but I don't take them now as I think my bones are ok now, I hope lol and I have a b12 injection every 3 months so I think I'm all good there too

yeah I generally drink decaf now just to feel like a normal person haha we also have an osmosis under the sink so filtered water is what I drink.
Sounds like a great GP my GP is a do as I say kind of guy interesting you should say about the martial arts thing I too wanna learn MMA it's just being house bound and all I can't do nothing I wanna take my driving lessons too but can't.

I have a multi-gym and a bench and pull up n dip station up my shed I go up there daily (sometimes have a day off) and work out and you're really not lying I think crack in a can is the best way its explained lol

Thanks bud you seem like a really nice guy too but then again you're after all Canadian haha

Sorry if any of this sounds dumb, I've just woken up from a nap
02-07-2017, 03:35 PM   #22
GI Jane
Senior Member
 
GI Jane's Avatar
 
Join Date: Jan 2017
Location: Yakima, Washington

My Support Groups:


Until a couple weeks ago went 10-20 times a day depending. Probiotics the good ones helped me some. I have a hard time with just water so I do the herbal tea. Also do a lot of smoothies you can add a lot of calories that way, coconut oil, nuts, banana high calorie ice creams. Avocado and cheese with eggs can add a lot with seeds.

I'm praying the Vedolizumab works for me too. Keeping fighting the battle.
02-07-2017, 04:31 PM   #23
Edgey
 
Edgey's Avatar
 
Join Date: Jan 2012
Location: Wolverhampton


Until a couple weeks ago went 10-20 times a day depending. Probiotics the good ones helped me some. I have a hard time with just water so I do the herbal tea. Also do a lot of smoothies you can add a lot of calories that way, coconut oil, nuts, banana high calorie ice creams. Avocado and cheese with eggs can add a lot with seeds.

I'm praying the Vedolizumab works for me too. Keeping fighting the battle.
Lmao love the image

yeah I found Questran helped me a lot but not to the extent where I can go outside without risk lol yeah I'm going to speak to my GP tomorrow about VSL#3 tomorrow as everyone is recommending me to do so :P and thanks for the advice and sharing

Yeah I've also done some shopping myself this week trying to buy those types of food I'm doubtful that it'll work for me as nothing else has lol but i wish the best for you (vedolizumab)
02-07-2017, 05:17 PM   #24
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Good one GI Jane,

Funny as all get out! Brought a smile to my face! LOL!


Thanks Edgey,

You don't sound dumb at all. Rather smart actually. I think you are doing a great job of trying to do the right things for your body. 2L of water is probably plenty, too much and you can lose all the important minerals your body needs. Why does everything have to be so complicated for us sickies?

wishing you success,

cmack

Last edited by cmack; 02-07-2017 at 05:51 PM.
02-08-2017, 12:41 PM   #25
Edgey
 
Edgey's Avatar
 
Join Date: Jan 2012
Location: Wolverhampton
Good one GI Jane,

Funny as all get out! Brought a smile to my face! LOL!


Thanks Edgey,

You don't sound dumb at all. Rather smart actually. I think you are doing a great job of trying to do the right things for your body. 2L of water is probably plenty, too much and you can lose all the important minerals your body needs. Why does everything have to be so complicated for us sickies?

wishing you success,

cmack
Been doctors today I enquired about the VSL#3 but he said you can't get it on prescription which I already knew but he couldn't recommend anywhere to get it from so I think I'm just going to order Online and hope it arrives at my door chilled (its freezing outside anyway as i live in England) he gave me something for my acid reflux too but I have to wait until tomorrow to collect it from the pharmacy so I'm still on the waiting game lol but everything is looking OK I guess hows everyone else doing?
02-08-2017, 12:59 PM   #26
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Having a c diff test. Waiting for Humira to kick in.

02-08-2017, 01:34 PM   #27
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Got my fingers crossed ronroush. Hope you get good news.

Keep us posted bud,


cmack
02-08-2017, 01:36 PM   #28
Edgey
 
Edgey's Avatar
 
Join Date: Jan 2012
Location: Wolverhampton
Having a c diff test. Waiting for Humira to kick in.
Hope the test comes back in your favour.

I don't know if the Humira worked for me at all but if it did it eventually stopped working for me but I was so tired when i was taking it, drained me so much.

Just hope you have a positive response to it, just try supplement on everything and anything while you're on it I guess lol

all the best
Edgey
02-08-2017, 01:36 PM   #29
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
How long does it take for the results of the test Ron?

cmack
02-08-2017, 01:37 PM   #30
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Thanks, Edgey

Reply

Crohn's Disease Forum » Treatment » Living on the toilet
Thread Tools


All times are GMT -5. The time now is 04:19 PM.
Copyright 2006-2017 Crohnsforum.com