# Living on the toilet



## Edgey

*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  *


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## ronroush7

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.


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## Lizzie

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).


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## Lisa

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.


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## ronroush7

I agree


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## cmack

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


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## cmack

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


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## Edgey

Lisa said:


> 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.



cmack said:


> 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



cmack said:


> 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


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## cmack

Edgey,

Hope you are doing better.


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## Edgey

cmack said:


> 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 :lol: 

I started Vedolizumab on the 5th of December I'm not sure how long it takes to take affect.


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## cmack

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


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## Anymousgirl

i donno


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## cmack

Hey Edgey,

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

cmack


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## cmack

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


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## Edgey

cmack said:


> 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


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## cmack

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


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## Edgey

cmack said:


> 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 :sign0085:


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## cmack

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


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## Edgey

cmack said:


> 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 :ybiggrin: 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


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## cmack

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


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## Edgey

cmack said:


> 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 :ack: 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 :ybiggrin:

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 :shifty: 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 :ylol2:


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## GI Jane

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.


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## Edgey

GI Jane said:


> 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 :rof:

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  and thanks for the advice and sharing :thumright:

Yeah I've also done some shopping myself this week trying to buy those types of food :tongue: I'm doubtful that it'll work for me as nothing else has lol but i wish the best for you (vedolizumab)


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## cmack

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


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## Edgey

cmack said:


> 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 :thumleft: hows everyone else doing? :shifty-t:


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## ronroush7

Having a c diff test.  Waiting for Humira to kick in.


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## cmack

Got my fingers crossed ronroush. Hope you get good news.

Keep us posted bud,


cmack


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## Edgey

ronroush7 said:


> 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 :thumright:
Edgey


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## cmack

How long does it take for the results of the test Ron?

cmack


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## ronroush7

Thanks, Edgey


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## ronroush7

cmack said:


> How long does it take for the results of the test Ron?
> 
> cmack


Not sure.


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## cmack

I would think it should be fairly high priority! Hope they get you answers bud.

Praying for the best outcome,

cmack


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## ronroush7

Thanks


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## Edgey

Going to wait for Monday to order the VSL#3 as the post don't delivery on Sunday and I don't want it stuck somewhere in a warehouse, Waiting again.... lol


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## cmack

Edgey, 

I hear ya bud. The two things in life I care for least are.... #1 Waiting around      and    #2 Surprises


I thoroughly dislike them both.


Hang in there bud. Good thinking about not having live cultures (VSL#3) getting caught sitting in a warm warehouse though. 

Give me a shout any time bro!

cmack


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## Edgey

Started taking L-Glutamine too as I hear its good for people in my situation, going to order my VSL#3 today too.

Thinking about buying Apetamin for the appetite boost as I need it because I'm working out.
Don't know if it works though lol :/


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## cmack

Me neither. Hope you have some success.


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## Edgey

So i've been to my GP recently just to restock on some stuff and he said there are some studies that are suggesting nicotine helps with crohns but i assume it's in testing fazes?
had a quick google and some people are being treated with it.

Also a study in Germany tested something called "woodworm" and had some potential success. ( https://www.ncbi.nlm.nih.gov/pubmed/17240130 )


I always find out stuff like this though and it never works for me but I though it'd be worth a mention just in case any of your guys want to try it (through the proper channels obviously).
Of course this could be utter drivel but it's what I've heard lol.


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## cmack

Edgey,

I know smoking isn't good for healing. Or anything else really at all. Nicotine, by itself? I'm really not too sure. I have my doubts. It does occur in nature, so maybe it is OK if taken correctly. New one on me though.

Hoping the best for you bud,

cmack


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## Edgey

Starting to get a lot of acid reflux recently don't know what its down to but I've been to see my GP and he gave me Omeprazole which doesn't appear to do a lot like everything, nothing works lol

Seen my dermatologist too about the bit of acne I have and he didn't give me the desired medication because it coincides not so well with my Entyvio somehow.
He said I can take it when i come off Entyvio so it seems he's doubtful that the drug will work also lol


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## cmack

Edgey,

I hate the acne too. I still get it on my back and neck. Not too severely though usually. Try not to scratch or dig at it. I know it's hard, but you don't want the scars. I think sometimes stress brings it on. Or side effects of meds. I hope you find a solution. If you do please tell me about it. All I know is using Lubriderm 3in1 lotion (unscented) for men has helped recently. I guess we have to moisturize bro!

Wishing you well, 

cmack


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## Edgey

cmack said:


> Edgey,
> 
> I hate the acne too. I still get it on my back and neck. Not too severely though usually. Try not to scratch or dig at it. I know it's hard, but you don't want the scars. I think sometimes stress brings it on. Or side effects of meds. I hope you find a solution. If you do please tell me about it. All I know is using Lubriderm 3in1 lotion (unscented) for men has helped recently. I guess we have to moisturize bro!
> 
> Wishing you well,
> 
> cmack


Yeah I get it on my back n chest  i think the Prednisolone i was taking caused the acne to flair again. I never used to have acne before Prednisolone and the dermatologist gave me Lymecycline capsules to take in the meantime and some Duac cream which doesn't really work but I apply it anyway lol


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## GI Jane

Ranitidine is what I take for acid reflux.


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## Edgey

GI Jane said:


> Ranitidine is what I take for acid reflux.


Sorry I haven't been on here lately I've been sorting some minor issues out, is that better than Omeprazole because i still get acid reflux really bad its become sort of a big issue for me now  

Thanks for the response


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## ronroush7

Edgey said:


> Sorry I haven't been on here lately I've been sorting some minor issues out, is that better than Omeprazole because i still get acid reflux really bad its become sort of a big issue for me now
> 
> Thanks for the response


What time do you take it?  I was recently told to take it in the morning.


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## Edgey

ronroush7 said:


> What time do you take it?  I was recently told to take it in the morning.


My doctor didn't really give me any guide lines on how to take it.
I generally take it when i get acid and sometimes it lessens the issue but doesn't totally dissolve the issue  so maybe I'll try in the morning and night (i find i get more acid while lying in bed) (20mg) but maybe I'll make another appointment with him soon to discuss the issue further,

Thanks for the reply.


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## ronroush7

You are welcome


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## Jabee

I've taken several different medications (all PPIs) for reflux and crohn's. The two that have worked the best for me are nexium (esomeprazole) and dexilant (dexlansoprazole). Ranitidine (Zantac) is slightly different from PPIs. I suggest trying a few, and at different doses. Nexium 40mg twice a day worked well but now I take dexilant 60mg twice a day. You might find one or another works better for you, or that a higher dose of what you are currently taking works. I take them every day without fail; PPIs need to be taken every day to work properly. If I need something fast acting I take Gaviscon. Your GI should be able to help you figure out which is best.


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## GI Jane

Edgey said:


> Sorry I haven't been on here lately I've been sorting some minor issues out, is that better than Omeprazole because i still get acid reflux really bad its become sort of a big issue for me now
> 
> Thanks for the response


Yes I take it every day it is way better than Omeprazole for me anyway.  Wish you luck, it's worth a shot anyway to try it and see if it works for you because I was having some ulcers in stomach and bad acid reflux.


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## Edgey

Sorry guys will reply soon it's just I have a bladder infection and it's give me flu like symptoms I also have a temperature of 39.9 and I feel like I'm dying lol so cold yet I'm burning up.

They also gave me anti biotics that knocked me about walking into door frames lol but they have now been change and my urine has been sent off to check if it is an infection or the vedolizumab.

Sorry about grammar and stuff I can't think straight right now, probably can cook an egg on my forehead,
Be in touch soon


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## ronroush7

I hope you get relief soon.  Let us know.


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## cmack

Edgey,


I wish you the best. I hope the antibiotics work. Talk to me anytime.:ysmile:


Your friend who cares, 

cmack


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## Edgey

everything worked out and i'm as well as one can be with crohns now lol well have been a few days ;D
turns out it was a bladder infection and not my injection lol 
Although i don't think my injection is working  anyone know how long it should be to take affect?

Thanks for the replies guys ;D


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## cmack

Hi Edgey,


I am happy to hear that you are feeling a little better. I'm not sure about the injection.
I hope you get some answers soon.


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## Magnolia24

Noticed that acid reflux recurs for you... I recently read that a tablespoon of apple cider vinegar in a glass of water relieves acid reflux, tried it and it works for me.. It sounds almost stupidly simple, but may be worth a try.
Sorry you've had such a tough time with this illness. I hope you get to feel well again soon!


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## cmack

Apple cider vinegar has never hurt me. I only have the odd tablespoon or so, once in a while. I have no idea if it helped either. I get a craving for it sometimes. Weird or what?


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## GI Jane

Our body craves what it needs for sure.  I couldn't get enough milk after my spine injury and I normally don't like milk.  So apple cider vinegar is so good for you...good in deviled eggs.


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## cmack

Hey Edgey,

How are you bud?


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## Betterwithvideogames

Sadly, it's a bit of both, I've had Crohn's fir 2-3 years and sometimes I go too much and sometimes not enough, but it always takes me a LONG time to get everything or anything out. :facepalm:


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## SaxLady

Was browsing through some posts and saw you were trying to find VSL#3.  They can order it at CVS (you must have it special ordered) but they are quite expensive.  I get mine at Costco Pharmacy (they special order it) and the cost is much less, 87.00 for a one month supply which I get two months out of.  There is also a pharmacy discount card for 20 additional dollars off each order of it, but you need a Doctor to write you a prescription to be able to use that discount, and get online and print up the discount card from their website.    Most Doctors will gladly do that, which means you can count it as a prescription and use your medical savings account if you have one, to pay for it.


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## Edgey

cmack said:


> Hey Edgey,
> 
> How are you bud?


I'm doing okay my situation hasn't change too much still stuck in the house 



Betterwithvideogames said:


> Sadly, it's a bit of both, I've had Crohn's fir 2-3 years and sometimes I go too much and sometimes not enough, but it always takes me a LONG time to get everything or anything out. :facepalm:


i'd much prefer it to take longer to come out that why i have some freedom lol but yeah dude it sucks  hope you resolve your issues.



SaxLady said:


> Was browsing through some posts and saw you were trying to find VSL#3.  They can order it at CVS (you must have it special ordered) but they are quite expensive.  I get mine at Costco Pharmacy (they special order it) and the cost is much less, 87.00 for a one month supply which I get two months out of.  There is also a pharmacy discount card for 20 additional dollars off each order of it, but you need a Doctor to write you a prescription to be able to use that discount, and get online and print up the discount card from their website.    Most Doctors will gladly do that, which means you can count it as a prescription and use your medical savings account if you have one, to pay for it.



i'm not too sure if i can do that here in England but i have tried the VSL#3 with no change but i understand those things take time so i may look into that and ask my doctor, thanks for the information buddy :cool2:


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## cmack

Hey Edgey,

It is nice to hear from you, I'm sorry to hear you aren't feeling well. I hope things improve buddy.

Regarding the probiotics, I just saw my doctor and he said if you drink too much alcohol, (not recommended) or take Ibuprofen, (which is not recommended for us IBD crowd either) we need to take some more of the VSL#3. You don't necessarily need the whole course of it. You would take it for maintenance, say, every second day for a week or ten days. Then you take about one sachet a week thereafter.

The doc said that if you have to take antibiotics, you need to take the VSL#3 regularly every day for a couple weeks once the course of antibiotics is finished. He also said to keep in mind that the good gut bacteria lives on fiber and it is good if you can at least get a bit of fiber in your diet to help it survive. I know fiber isn't always an option...believe me.


Finest regards,

cmack


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## GI Jane

Hate being stuck in the house.  Thank God for Netflix.


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## Edgey

hey all quick update been to see the Gastro doctor and he thinks the reason for going to the toilet so often is to do with the plumbing ie bile acids...
Because I've had the ileum removed i no longer absorb it, apparently bile acids are hella good laxative lol.
But that's only what he thinks so i'm gonna attempt to take more sachets of questran a day and see how that pans out 
he also wants me to have another colonoscopy (dreading) but i guess its necessary 

Sorry for not posting on here, I've been sleeping a lot lately due to my injection i think and i also workout in my house (extra tired) 

gonna do some googling i guess

Hope everyone is doing ok


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## ronroush7

Edgey said:


> hey all quick update been to see the Gastro doctor and he thinks the reason for going to the toilet so often is to do with the plumbing ie bile acids...
> Because I've had the ileum removed i no longer absorb it, apparently bile acids are hella good laxative lol.
> But that's only what he thinks so i'm gonna attempt to take more sachets of questran a day and see how that pans out
> he also wants me to have another colonoscopy (dreading) but i guess its necessary
> 
> Sorry for not posting on here, I've been sleeping a lot lately due to my injection i think and i also workout in my house (extra tired)
> 
> gonna do some googling i guess
> 
> Hope everyone is doing ok


My understanding is my terminal ileum and a small part of my colon was removed when I had my resection.  Do you mean that bile acids are not absorbed without the terminal ileum?


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## cmack

Hi Edgey,

I'm doing pretty well thanks, I hope you are on the path to wellness. It's nice hearing from you buddy. I'm also curious about the same thing as Ron, about the bile. 


Best regards,

cmack


----------



## Edgey

ronroush7 said:


> My understanding is my terminal ileum and a small part of my colon was removed when I had my resection.  Do you mean that bile acids are not absorbed without the terminal ileum?


yeah exactly the same as me Ron and yeah that's what i meant, at least that's how he put it to me



cmack said:


> Hi Edgey,
> 
> I'm doing pretty well thanks, I hope you are on the path to wellness. It's nice hearing from you buddy. I'm also curious about the same thing as Ron, about the bile.
> 
> 
> Best regards,
> 
> cmack


yeah well one can only hope lol and its good to hear that you're doing well bud :thumright:


----------



## ronroush7

Edgey said:


> yeah exactly the same as me Ron and yeah that's what i meant, at least that's how he put it to me
> 
> 
> yeah well one can only hope lol and its good to hear that you're doing well bud :thumright:


Thanks


----------



## GI Jane

The nutritionist at the hospital told me it would happen and it is since I've been off oxy now.  She told me cheese with each meal helps and for some reason a marshmallow. Toast, pretzels also helps me.  I have to have a B12 shot monthly for life now too because of the removal of the TI.  Apples no skin or applesauce.  Rice and potatoes. Cooked carrots because of the pectin which helps the stomach too.  Probiotics too of course helps but the refrigerated live kind is best.


----------



## ronroush7

GI Jane said:


> The nutritionist at the hospital told me it would happen and it is since I've been off oxy now.  She told me cheese with each meal helps and for some reason a marshmallow. Toast, pretzels also helps me.  I have to have a B12 shot monthly for life now too because of the removal of the TI.  Apples no skin or applesauce.  Rice and potatoes. Cooked carrots because of the pectin which helps the stomach too.  Probiotics too of course helps but the refrigerated live kind is best.


That is interesting because I had my terminal ileum removed.


----------



## Edgey

GI Jane said:


> The nutritionist at the hospital told me it would happen and it is since I've been off oxy now.  She told me cheese with each meal helps and for some reason a marshmallow. Toast, pretzels also helps me.  I have to have a B12 shot monthly for life now too because of the removal of the TI.  Apples no skin or applesauce.  Rice and potatoes. Cooked carrots because of the pectin which helps the stomach too.  Probiotics too of course helps but the refrigerated live kind is best.


yeah i was told marshmallows are good to slow down too lol and i too have B12 shots but every 3 months, i find myself dead toward the end of the 3 months :yfaint:

I've been through all that diet stuff and they effect me in such a minor way its pointless for me to monitor them, think mine is literally bile acids tbf (soon see) :thumleft:


----------



## cmack

Hey Edgey,

You should tell the doc about the lack of energy after you shots. Maybe you need shots more frequently.


Your bud,

cmack


----------



## Edgey

cmack said:


> Hey Edgey,
> 
> You should tell the doc about the lack of energy after you shots. Maybe you need shots more frequently.
> 
> 
> Your bud,
> 
> cmack


yeah i think i spoke to the nurse about it and she mentioned having them every 10 weeks instead but I'm not sure if there was anything actually done about it lol and the vedolizumab play a big part in the tiredness i think for me, because when i get the injection first 2 weeks after i just sleep pretty much but we shall see if its actually working soon anyway


----------



## cmack

Hi Edgey,

I know B-12 really helped me with my energy levels. Talk to me anytime, I happen to think you are a very nice guy.


I wish you all the best bro!

cmack


----------



## ronroush7

It helped with anemia for me.


----------



## GI Jane

Ya I sure can tell I'm almost due another shot.


----------



## Edgey

Got another shot of Vedolizumab before i have a colonoscopy which is very annoying because if it is in fact not working i got to go through all that tiredness one more time for nothing  i'm just doubtful it is in fact working because nothing so far has worked for me lol

BTW you guys got any good tips to gain weight because I've got to about/nearly 80kilo/176lbs and i can't get any higher no matter what it seems i do lol and i need it while working out,
Thanks in advance


----------



## Edgey

GI Jane said:


> Ya I sure can tell I'm almost due another shot.


Same 15th mine is lol i can't wait, it may counter the tiredness of the vedolizumab :dance:


----------



## cmack

Hi Edgey,

Hang in there bud, I'm glad to hear you are a healthy weight. I hope the tiredness goes away soon.


All my best,

cmack


----------



## cmack

Edgey said:


> Got another shot of Vedolizumab before i have a colonoscopy which is very annoying because if it is in fact not working i got to go through all that tiredness one more time for nothing  i'm just doubtful it is in fact working because nothing so far has worked for me lol
> 
> BTW you guys got any good tips to gain weight because I've got to about/nearly 80kilo/176lbs and i can't get any higher no matter what it seems i do lol and i need it while working out,
> Thanks in advance


I get a lot of protein from chickpeas. I also drink organic soy milk and it seems to help keep the muscle on.


----------



## Edgey

cmack said:


> I get a lot of protein from chickpeas. I also drink organic soy milk and it seems to help keep the muscle on.



chickpeas would be good to add to the shopping list tbh, thanks lol


----------



## cmack

Hey Edgey,

I also notice when I hit a plateau, (no more muscle gain but lots of work). I change things up and instead of 2 sets of 8 reps, maybe lower the weight and go for three sets of 15. Or if you are doing high reps lower them from 12-15 back to 6-8 with a higher weight. If you mix it up you will find that you pass the plateaus. 

With weight lifting sometimes less is more as well, it gives us more time for recovery and we end up with better gains.

A couple more tips, concentrate on the muscle you want to work, hone in on it and activate it, (tense it up) before  and during your rep, it makes a real difference. Make sure to get plenty of rest and never skip leg day. 

Cheers,

cmack


----------



## GI Jane

Coconut oil in smoothies with peanut butter and yogurt and banana adds a lot of calories and is good for you.


----------



## Edgey

cmack said:


> Hey Edgey,
> 
> I also notice when I hit a plateau, (no more muscle gain but lots of work). I change things up and instead of 2 sets of 8 reps, maybe lower the weight and go for three sets of 15. Or if you are doing high reps lower them from 12-15 back to 6-8 with a higher weight. If you mix it up you will find that you pass the plateaus.
> 
> With weight lifting sometimes less is more as well, it gives us more time for recovery and we end up with better gains.
> 
> A couple more tips, concentrate on the muscle you want to work, hone in on it and activate it, (tense it up) before  and during your rep, it makes a real difference. Make sure to get plenty of rest and never skip leg day.
> 
> Cheers,
> 
> cmack


yeah thanks for the advice bud 
yeah i think i need to up my weight and work my way up on reps again 
but i want to get my diet perfect i might have to start meal prepping lol 



GI Jane said:


> Coconut oil in smoothies with peanut butter and yogurt and banana adds a lot of calories and is good for you.


yeah i've ordered some more peanut butter not really bothered with the yogurt because they just don't have a lot of calories in lol and as for banana i put one in my shake now and again depending on whether or not i'm feeling tolerating the bits in my shake :/ lol


----------



## cmack

I wish you the best Edgey.


----------



## Edgey

cmack said:


> I wish you the best Edgey.


oh i've jumped off the weight gain too because i found i was visiting the toilet more due to the milk so i've now bought an all in one protein powder,
Basically bcaas 35g protein and creatine per shake


----------



## cmack

I hope it helps. Keep us updated on the fitness. I'm curious to find out how it agrees with you and also if you notice any muscle gains. Time will tell. Cheers.


----------



## Edgey

cmack said:


> I hope it helps. Keep us updated on the fitness. I'm curious to find out how it agrees with you and also if you notice any muscle gains. Time will tell. Cheers.


my one arm is bigger than my other arm right now so i'm in a dilemma on what to do about it lmao i might use my day off just to work on that arm lol left arm is 12.5 inches and my right is 13 inches :rof:
but that half of inch looks so big lol i know i have small arms but considering i was really ill and 8 stone(112lbs) not so long ago and im now 12 stone (168lbs) i've come some way :dance:


----------



## cmack

Hey Edgey,

My left arm is slightly smaller as well, I work out on a heavy bag and my left arm can throw a wicked left hook and great jabs. For some reason it is stronger than my right in that regard. Nobody will notice it but you.  

You sound like you are making some pretty steady progress, keep it up. You have come a heck of a long way buddy! Right on!  Now if only I could figure out how to grow a mop of hair like yours.... LOL.  Enjoy your hair while you can my friend, may it grow that well forever. 


Cheers,

cmack


----------



## GI Jane

Yep common....left vs right hand dominant.  My boxing coach back in the day made me only hit left for weeks before it became natural......gosh I miss boxing.


----------



## cmack

I wish you could teach me some moves Jane.  I'd probably get my nose broken again. LOL
It's OK I have straightened it myself several times before. I think I should have been a plastic surgeon. I broke it mostly doing dive rolls. At first I really sucked at springboard.


----------



## GI Jane

It's a bummer huh ya i definitely don't have a "Hollywood" nose lol.


----------



## Edgey

quick update I've upped my questran to 2 x 4g sachets and it seems to have improved my toilet visits slightly so it appears that the bile acids were my detriment.

But still don't feel very safe going on long journeys also these sachets are becoming a burden (disgusting) but apparently there is a tablet form (colesevelam) so i'll put up with the questran for now and ask him about that when i next see him.

I do feel the sachets may work better though that's why hes put me on them but it'd be amazing to just pop a magic pill haha 

currently take per day: 
2x loperamide 
2x 4g Questran sachets 

Fingers crossed


----------



## cmack

Hey Edgey,

That sounds very promising buddy, I'm glad something is helping a little. Those bathroom visits of the unexpected variety are never pleasant. How are the new protein/creatine supplements helping so far for your workouts?


Best regards,

Chris


----------



## Edgey

cmack said:


> Hey Edgey,
> 
> That sounds very promising buddy, I'm glad something is helping a little. Those bathroom visits of the unexpected variety are never pleasant. How are the new protein/creatine supplements helping so far for your workouts?
> 
> 
> Best regards,
> 
> Chris


yeah its helped a little but like i said i'm still not entirely comfortable going long distances so a holiday is still out of the question  but none the less its an improvement and i started off well with the supplements but i haven't taken any in 2 days as its so hot i can't work out lol :shifty: lazy talk i know but i'm going back at it tomorrow for sure


----------



## cmack

Edgey,

You probably do need a rest. Things are improving that's the main thing.


Cheers bro,

Chris.


----------



## Edgey

Heyo ron,
Did you ask your doctor about that bile acid treatment because you seem to have had the same operation as me and the bile acid treatment seems to have worked for me not substantially but somewhat (better than nothing)

I'm gonna ask my doctor about 'colesevelam' when i next see him because this powder form (questran) seems unbearable after a while and the colesevelam is a tablet form so I've read. 

Hope it works for you buddy and whoever reads this in the same predicament


----------



## ronroush7

Edgey said:


> Heyo ron,
> Did you ask your doctor about that bile acid treatment because you seem to have had the same operation as me and the bile acid treatment seems to have worked for me not substantially but somewhat (better than nothing)
> 
> I'm gonna ask my doctor about 'colesevelam' when i next see him because this powder form (questran) seems unbearable after a while and the colesevelam is a tablet form so I've read.
> 
> Hope it works for you buddy and whoever reads this in the same predicament


I had my terminal ileum removed along with a small section of my colon.   How did the treatment help you,?


----------



## Edgey

ronroush7 said:


> I had my terminal ileum removed along with a small section of my colon.   How did the treatment help you,?


exactly the same as me ron 30cm to be approx and it slowed me down on the toilet oo: because i was visiting the toilet 10+ times a day


----------



## ronroush7

I will ask my gi about the bile acid treatment


----------



## Edgey

ronroush7 said:


> I will ask my gi about the bile acid treatment


Good luck i hope it works buddy 
Because for all i know im in remission lol just the bile acids act as a laxative.

A sign that it maybe would work is if you were good after your operation and could go out like myself about 6 months - 1 year i could go out safely without worrying about the toilet if your case is the same there's a strong chance it should work.

All the best :thumleft:


----------



## Edgey

heyo,

Had some sort of flair up i can't stop going to the toilet and its right annoying i just got over 12 stone something (175lbs) (80kg) and now i'm gonna lose it which is so so frustrating  might go doctors tomorrow and see if he can do anything but i doubt it :/ i have a endoscopy on the 10th so just as well i guess lol


----------



## cmack

Hey Edgey,

I think you will mainly lose water weight in the short term. I hope you feel better soon, maybe it's a stomach bug or something. I sure hope it isn't anything serious. Be sure to stay hydrated.

I'm thinking of you bud.


----------



## Edgey

Quick update 
Because I've been using the toilet so much recently my doctor emailed my gastro and I'm now back on prednisolone but to be honest they don't work for me no more  when i first started using them i saw a major improvement and i ate everything but now i doesn't do anything for me lol i feel anyway :s and hes upped my loperamide to 4x2mg a day and i'm still taking the disgusting yet useful questran although at this point its doing nothing at all lol, safe to say im not in remission.

Hope everyones well <3


----------



## GI Jane

I'm sorry Edgey prednisone sucks but works so well too.


----------



## ronroush7

Hope you are better soon, Edgey.


----------



## cmack

Feel better soon Edgey. I hope the prednisone starts working.


----------



## Edgey

hey 
having my endoscopy tomorrow but its at 3pm so when do i start drinking the solution? when would be best to stop eating and so forth?

I have read the slip with it but it says not to eat before 1pm today and that's like 26 hours without eating lol ima straight pass out and given how fast i go to the toilet i think i should be fine to start tonight (no sleep)

any advice much appreciated <3


----------



## cmack

Hey Edgey,

If it were me, I would try to follow the directions as closely as possible. I have a doctors appointment tomorrow as well, no food for me today either.


----------



## GI Jane

Edgey said:


> hey
> having my endoscopy tomorrow but its at 3pm so when do i start drinking the solution? when would be best to stop eating and so forth?
> 
> I have read the slip with it but it says not to eat before 1pm today and that's like 26 hours without eating lol ima straight pass out and given how fast i go to the toilet i think i should be fine to start tonight (no sleep)
> 
> any advice much appreciated <3


I always had to stop in the morning and didn't eat anything heavy the day before soups and stuff.  I always suck on butterscotch or other hard candies to get me through the solution.


----------



## Jabee

I've never had to drink anything for my endoscopies. For my colonoscopies I've had to stay clear liquid only from @36 hours before the procedure, then nothing on the day itself. For endoscopies it is just the usual nothing to eat from midnight before. I can have clear liquids up to @2 hours before. You should be able to have clear liquids until at most 6 hours before the procedure. They've just updated the advice here to the 2 hour period for both scopes and other surgeries. Definitely call your GI's office and ask! I hope the scope gives you some answers.


----------



## cmack

How did things go Edgey?


----------



## Edgey

cmack said:


> How did things go Edgey?


well i'd have posted yesterday but i had a day of sitting on the toilet acting like a pressure jet washer lol :rof: 

but i did have a flair up at the time and it says on the slip to not go ahead if you have a flair or something but my GI knew about this and was prepared to go forward so i did too
i didn't follow any guidelines i ate whenever :lol: i though because i was going so fast it wouldn't matter and it didn't to be honest he put on the results sheet it was crystal clear in there (not those exact words) lol :eek2:
but i was pretty ulcerated here and there but the join was the worst they couldn't pass through the resection but i think that was due to me being in a flair up but all in all i wasn't really pleased with the result  but hes having a sit down with a few other doctors to discuss further treatment so we will see.

that was my 2nd and last endoscopy lol its such an awe deal.

Also my local GP gave me prednisolone and only gave me one week of 6x5mg is that normal? because in the past i've always had to reduce them eventually to 1 a week :confused2:

Edit:
he put
Findings:
patchy colonic disease in the ascending colon and sigmoid colon-mayo III (deep ulcers)
Anastomosis shows an element of narrowing and unable to enter with colonoscope but deep ulcertaion could be seen at the anastomosis and beyond in the neo terminal ileum (ruttgerts i3)


----------



## cmack

Hey Edgey,

That doesn't sound too good, I sure hope the prednisone starts working. I guess at least now you know what is happening in that particular area so something can be done about it. I'm thinking of you buddy, be sure to keep in touch.


----------



## ronroush7

Doesn't sound normal to me, Edgey


----------



## GI Jane

Edgey said:


> well i'd have posted yesterday but i had a day of sitting on the toilet acting like a pressure jet washer lol :rof:
> 
> but i did have a flair up at the time and it says on the slip to not go ahead if you have a flair or something but my GI knew about this and was prepared to go forward so i did too
> i didn't follow any guidelines i ate whenever :lol: i though because i was going so fast it wouldn't matter and it didn't to be honest he put on the results sheet it was crystal clear in there (not those exact words) lol :eek2:
> but i was pretty ulcerated here and there but the join was the worst they couldn't pass through the resection but i think that was due to me being in a flair up but all in all i wasn't really pleased with the result  but hes having a sit down with a few other doctors to discuss further treatment so we will see.
> 
> that was my 2nd and last endoscopy lol its such an awe deal.
> 
> Also my local GP gave me prednisolone and only gave me one week of 6x5mg is that normal? because in the past i've always had to reduce them eventually to 1 a week :confused2:
> 
> Edit:
> he put
> Findings:
> patchy colonic disease in the ascending colon and sigmoid colon-mayo III (deep ulcers)
> Anastomosis shows an element of narrowing and unable to enter with colonoscope but deep ulcertaion could be seen at the anastomosis and beyond in the neo terminal ileum (ruttgerts i3)


I've had the one week prednisone before which was intense but worked.  Sounds like what mine was, am so glad I had my terminal ileum removed.  I am doing so much better.  Prayers to you.


----------



## Edgey

hey guys hope everyone's doing well 

quick update

haven't posted in a while as my last medication Vedolizumab didn't really work so i was in intermission while they find me another drug :/ so the IBD nurse phoned me today and said they have a meeting tomorrow to talk about my situation (among others) she said they want me to try this drug called Ustekinumab AKA Stelara but at the same time i'm gonna start treatment for my acne that I've suddenly gained (maybe because of the steroids) so i don't know if they clash reaction wise but I'm hoping not.

She said the first is a single infusion then after that it'll be a pen (i assume) injecting myself at home 8-12weeks just like when i took Humira (adalimumab) fingers crossed i don't get the same side effects as i did on the Humira.

Going to ring my dermatologist and ask if its still okay to take the Roacutane for my acne while on this other drug, My mom doesn't like the idea of any of this as I've either had a reaction to the drug in the past or they don't work like every drug I've been on lol my GP isn't happy with it but he hates toxins and stuff but i'll see how it all goes


----------



## ronroush7

Best to you,  Edgey.


----------



## cmack

Good to hear from you Edgey. I wish you the best with the Stelara. You deserve a break, maybe this will be the right thing this time. I'm praying for you buddy.


----------



## GI Jane

Edgey sorry about the medication not working....intivio seems to betray me at week 6 recently....don't want to increase the infusions so really watching my diet.....well except for that left over smores pop-tart my grandkids left at my house lol.


----------



## Edgey

So i'm starting Stelara tomorrow and was wondering if anyone knew how long the injection takes and how long you have to stay there afterwards in case of a reaction. Only reason i ask is because the hospital is a decent distance away and i need to sort transport out lol i can just called the hospital tomorrow but that'd be last minute which is usually my style anyway lmao


----------



## GI Jane

No sorry haven't been on that one.  Wish you luck.  On my Remicade one they made me wait an hour.


----------



## aypues

Edgey said:


> So i'm starting Stelara tomorrow and was wondering if anyone knew how long the injection takes and how long you have to stay there afterwards in case of a reaction. Only reason i ask is because the hospital is a decent distance away and i need to sort transport out lol i can just called the hospital tomorrow but that'd be last minute which is usually my style anyway lmao


about an hour for the infusion. plan for around 2 hours though, as it takes time to get the IV set up, and then they monitor you for 30 mins afterwards. Reactions are very rare to Stelara. I had nothing.


----------



## Edgey

GI Jane said:


> No sorry haven't been on that one.  Wish you luck.  On my Remicade one they made me wait an hour.


yeah i've previously been on vedolizumab and they made me wait 2 hours after the 30 minute infusion and it took them a while to prepare so i was in the hospital all day :mad2: but thanks for the reply  all the best!



aypues said:


> about an hour for the infusion. plan for around 2 hours though, as it takes time to get the IV set up, and then they monitor you for 30 mins afterwards. Reactions are very rare to Stelara. I had nothing.


yeah took them around 30-40 minutes to set the IV up then the infusion took 1 hour and i had to wait an hour after it. Practically in the hospital all day :yfrown: AGAIN lol yeah i didn't have a reaction so all went well so fingers crossed  
because the drug is new in the UK the company that was gonna send me the injection pens? for home don't have them yet so i have to go up hospital and keep having infusions which is a major inconvenience :ack:


----------



## cmack

I'm really not a fan of medical facilities either, I hope the pens come in soon. Best of luck to you bro!


----------



## Edgey

hey, any of you driving yet ? because I'm 23 and i'm yet to drive which is so frustrating I've saved enough money to drive just haven't been able to get around to it due to my 99 problems lol if so how did you go about taking your driving lessons ? 
Thanks in advance


----------



## cmack

I got my learners permit and then my father taught me. I also got a booklet with my learners permit and I read it until I had memorized it all. Almost every single question was in the booklet. There were a lot of different traffic signs to remember. I learned on a standard transmission and took my test with an automatic, although not all places allow this and will restrict you to automatic only if that's what you take the test in. Some other people I know hired a driving instructor though and that seemed to work out well. This was all in Canada of course. The things I found hardest were parallel parking and starting on a hill without rolling back.


----------



## Edgey

heyoo
haven't posted in ages still on Stelara and still going to the toilet lots (enough not to be able to go far) for all i know i could be in remission just this BAM(bile acid malabsorption) that my doctor so lightly mentioned i'm currently trying Psyllium husk as nothing else seems to work and its help slightly i guess still trying to find that needle in the haystack though 

Hope everyone is doing well <3


----------



## GI Jane

Cheese plugs me up when needed.  The Vedolizomab is working amazing with me.  My labs came back perfect for the first time in who knows how long.  The last colonoscopy a couple weeks ago looked great since the surgery too....sooooo yea....there is hope.  Hang in there Edgey there will be something that works for you...it's that whole dang "haystack" having to go through that sucks.


----------



## cmack

Good to see you Edgey. Nice pic, love the hat! ... Yeah, I'm addicted to Adidas.  I hope everyone has an enjoyable festive season. Cheers!


----------



## Edgey

GI Jane said:


> Cheese plugs me up when needed.  The Vedolizomab is working amazing with me.  My labs came back perfect for the first time in who knows how long.  The last colonoscopy a couple weeks ago looked great since the surgery too....sooooo yea....there is hope.  Hang in there Edgey there will be something that works for you...it's that whole dang "haystack" having to go through that sucks.


how much cheese do you have to eat and how many hours before :ylol2: and that's great to hear, glad you're doing well. Personally i think I'm in remission just this Bile acid :thumbdown:


----------



## ronroush7

Edgey said:


> how much cheese do you have to eat and how many hours before :ylol2: and that's great to hear, glad you're doing well. Personally i think I'm in remission just this Bile acid [emoji107]


Not great but doing better with the stomach since the blood clots appeared.


----------



## GI Jane

Yep never brag on doing better...wow issues but it makes sense since different holiday food and stresses. Oh well should be better soon.


----------



## Edgey

Heyo people 

I've put some weight on which is always a good sign, the bowel is operating as it should (for now) but my toilet frequency is still there although my stool isn't so bad just lately (it has fazes) i still can't go out for my house for long periods of time i think I've developed a nervous thing for it too which makes it worse and I've been to see the Gastro today and he said he hasn't got any treatments for the toilet frequency just the Colesevelam which I'm currently already on along with the Loperamide, so it looks like I'm jailed in my house forever it seems  can try look for a solution online but that's all hear say stuff :/ goodbye driving lessons lol oh and i can now bench 90kg lmao which is irrelevant but that's my 3 months in a jar haha.

Hope all of you are doing better <3 

Once again thanks for reading


----------



## ronroush7

Edgey said:


> Heyo people
> 
> I've put some weight on which is always a good sign, the bowel is operating as it should (for now) but my toilet frequency is still there although my stool isn't so bad just lately (it has fazes) i still can't go out for my house for long periods of time i think I've developed a nervous thing for it too which makes it worse and I've been to see the Gastro today and he said he hasn't got any treatments for the toilet frequency just the Colesevelam which I'm currently already on along with the Loperamide, so it looks like I'm jailed in my house forever it seems  can try look for a solution online but that's all hear say stuff :/ goodbye driving lessons lol oh and i can now bench 90kg lmao which is irrelevant but that's my 3 months in a jar haha.
> 
> Hope all of you are doing better <3
> 
> Once again thanks for reading


Good to see you, Edgey.   I hope things get better soon.


----------



## cmack

Hey Edgey,

I hope things improve further for you. It's good to hear from you bro. You should be proud of that bench press, great work dude! That's some serious power you are developing up front. Don't forget the back,  (I like doing pull ups to work my back). 

Cheers!


----------



## GI Jane

Edgey said:


> Heyo people
> 
> I've put some weight on which is always a good sign, the bowel is operating as it should (for now) but my toilet frequency is still there although my stool isn't so bad just lately (it has fazes) i still can't go out for my house for long periods of time i think I've developed a nervous thing for it too which makes it worse and I've been to see the Gastro today and he said he hasn't got any treatments for the toilet frequency just the Colesevelam which I'm currently already on along with the Loperamide, so it looks like I'm jailed in my house forever it seems  can try look for a solution online but that's all hear say stuff :/ goodbye driving lessons lol oh and i can now bench 90kg lmao which is irrelevant but that's my 3 months in a jar haha.
> 
> Hope all of you are doing better <3
> 
> Once again thanks for reading


Ya the only thing that helps me slow the flo is Oxy, even half a tab will work sometimes.  For me going back on the RICE diet helps too....just gets so boring....any oils or lactose kills me too.  My go to is childhood PBJ which works for me.  Well almond butter a lot of the time.  Take care it's so ebb and flow with this disease.


----------



## Edgey

GI Jane said:


> Ya the only thing that helps me slow the flo is Oxy, even half a tab will work sometimes.  For me going back on the RICE diet helps too....just gets so boring....any oils or lactose kills me too.  My go to is childhood PBJ which works for me.  Well almond butter a lot of the time.  Take care it's so ebb and flow with this disease.


oxy? whats that is there a proper longer name for it?
yeah any food that absorbs water or binds me is good so bread and eggs and so forth 
thank for the reply <3


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## cmack

Oxy is a type of opiate painkiller. There are a couple ones that start with oxy. I had a type of it for severe headaches before, powerful stuff.


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## GI Jane

Sorry too many years in the military always abbreviate lol. Oxycodone is what works for me, but can cause headache and pain in stomach if taken on empty stomach....but stops the flow.  Use on trips or flying and such for sure, that seatbelt sign is a death sentence otherwise.


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## Lynda Lynda

Jabee said:


> I've taken several different medications (all PPIs) for reflux and crohn's. The two that have worked the best for me are nexium (esomeprazole) and dexilant (dexlansoprazole). Ranitidine (Zantac) is slightly different from PPIs. I suggest trying a few, and at different doses. Nexium 40mg twice a day worked well but now I take dexilant 60mg twice a day. You might find one or another works better for you, or that a higher dose of what you are currently taking works. I take them every day without fail; PPIs need to be taken every day to work properly. If I need something fast acting I take Gaviscon. Your GI should be able to help you figure out which is best.


I have been taking pantoprazole for years every day and it is the only thing that has worked great for me, plus maybe Extra Strength Gaviscon added to that occassionally. Recently I went off my pantoprazole ( a family nurse practioner suggested the change ) for 3 days and took Zantac and Extra Strength Gaviscon each day and I felt so sick that I went to the ER ( but they did not do much for me at the ER anyhow. ) Tomorrow it is back to my pantoprazole.


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## Lynda Lynda

Wow, everyone here knows so much !  This is quite an education for me. I have had UC for 20 years but I probably know 1% of what you all know. Right now my gut is so sick and I can only drink liquids. I never thought I would look forward to a colonoscopy/endoscopy ( on April 4th.) I hope I get some answers soon. Thank You all for sharing.


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## ronroush7

I feel like I am still learning, Lynda


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## GI Jane

Between the removal of my bad section which wasn't to big and this Vedolizumab infusion every 8 weeks I'm doing really well.  All my labs are good.  Only bad stress and bad food affect me now.  I'll be praying for you on the 4th that's my next infusion


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## Edgey

How do people live going to the toilet 10 - 20 times a day, i mean i used to go 10+ and life was absolute rubbish i can go up to 6 now like and still can't go out anywhere unless there are toilets, i wanna start driving and stuff and have so many ambitions but i can't do nothing lol im a detriment to everything at the moment.

I spoke to my gastro doctor about my toilet and he said if it is bile acid malabsorbtion (which im already being treated for) and the current meds youre taking arent working theres not much we can do, so what do i do sit in my house for the rest of my life  

quick opinion and rant lmao sorry


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## ronroush7

Maybe you need to seek out another opinion, Edgey.


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## cmack

Hey Edgey,

I think you really might need another opinion, it doesn't seem right that this is the best they can do. I have read of a lot of people who use immodium or codeine to slow the bowel. This can be a very slippery slope with codeine though, been there. There must be other options, including diet. Also, I really believe that stress contributes to sudden, urgent bowel movements, maybe this is an area you could more safely address with medication. It seems you are stressed about the bathroom problems in public, I'm the same way, I get it. Feel free to pm me any time if you want to know what exactly I do to help with stress.


Your friend who cares,

Chris


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## Lynda Lynda

cmack said:


> I got my learners permit and then my father taught me. I also got a booklet with my learners permit and I read it until I had memorized it all. Almost every single question was in the booklet. There were a lot of different traffic signs to remember. I learned on a standard transmission and took my test with an automatic, although not all places allow this and will restrict you to automatic only if that's what you take the test in. Some other people I know hired a driving instructor though and that seemed to work out well. This was all in Canada of course. The things I found hardest were parallel parking and starting on a hill without rolling back.


I DID NOT have to parallel park for my driving test !  I had a late afternoon appointment and the Motor Vehicle Department was running behind that day ! I drove my parents car to the driving test and it was a "tank", a big, green Ford Galaxy 500 ( 1970 ? ) My dad taught me how to drive an automatic and sticK shift, he must have done a pretty good job because I have been driving for 40 years with no accidents. I have been driving a stick shift for 40 years, I almost don't know what to do if I drive a "fancy" automatic car !  My first car was a used 1972 Chevy Vega and I drove that poor little car for over 8 years. Oh, I'm rambling once again. :rof:


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## Lynda Lynda

GI Jane said:


> Ya the only thing that helps me slow the flo is Oxy, even half a tab will work sometimes.  For me going back on the RICE diet helps too....just gets so boring....any oils or lactose kills me too.  My go to is childhood PBJ which works for me.  Well almond butter a lot of the time.  Take care it's so ebb and flow with this disease.


I agree that "BRATT" diet works but so boring ( Bananas, Rice, Applesause, Toast, Tea. ) PBJ agrees with me normally. :sun:


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## Lynda Lynda

Edgey said:


> How do people live going to the toilet 10 - 20 times a day, i mean i used to go 10+ and life was absolute rubbish i can go up to 6 now like and still can't go out anywhere unless there are toilets, i wanna start driving and stuff and have so many ambitions but i can't do nothing lol im a detriment to everything at the moment.
> 
> I spoke to my gastro doctor about my toilet and he said if it is bile acid malabsorbtion (which im already being treated for) and the current meds youre taking arent working theres not much we can do, so what do i do sit in my house for the rest of my life
> 
> quick opinion and rant lmao sorry


Yes, I would get a second opinion. Never give up. It does get frustrating. I have enormous stress. I take Clonazepam for anxiety, but life-style changes are probably a safer way to manage stress. 

Right now I am also on the toilet about 6 times a day. But, hoorah, today I was outside my apartment running errands and an appointment and I did not have to run to a bathroom at all during that time. ( Wow, I had a boring 1 1/2 hour wait for a blood draw. )

You have to become assertive when battling these diseases, because after all it is your body, your health and your life. :hang:

Take Care. :rosette1:


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## Edgey

cmack said:


> Hey Edgey,
> 
> I think you really might need another opinion, it doesn't seem right that this is the best they can do. I have read of a lot of people who use immodium or codeine to slow the bowel. This can be a very slippery slope with codeine though, been there. There must be other options, including diet. Also, I really believe that stress contributes to sudden, urgent bowel movements, maybe this is an area you could more safely address with medication. It seems you are stressed about the bathroom problems in public, I'm the same way, I get it. Feel free to pm me any time if you want to know what exactly I do to help with stress.
> 
> 
> Your friend who cares,
> 
> Chris


this is already my second opinion and ive seen private doctors but theyve been naturopaths lol i've tried codeine and i take 2 immodium twice daily currently, before i had crohns when i was younger i used to go to the toilet 3 times a day but obviously i could hold it then so there was no issue so i think i need something really strong tbh lol yeah ive cut most fatty foods out and thats helped a lot tbh yeah and i do stress about it alot and i think that contributes a lot to it but i wouldnt know where to go about that issue  lol
thanks buddy much love always appreciated <3 



Lynda Lynda said:


> Yes, I would get a second opinion. Never give up. It does get frustrating. I have enormous stress. I take Clonazepam for anxiety, but life-style changes are probably a safer way to manage stress.
> 
> Right now I am also on the toilet about 6 times a day. But, hoorah, today I was outside my apartment running errands and an appointment and I did not have to run to a bathroom at all during that time. ( Wow, I had a boring 1 1/2 hour wait for a blood draw. )
> 
> You have to become assertive when battling these diseases, because after all it is your body, your health and your life. :hang:
> 
> Take Care. :rosette1:


yeah i find i can go out if i eat then wait for myself to go to the toilet a few times then im fine to go out for a few hours if that lol but i have no food in my body but i dont feel like im going to drop as ive ate a few hours ago but ive been having lots of appointments lately and lost a stone in weight lol (14lbs) is so annoying yeah im gonna go for my driving lessons i think and just not eat i have to sacrifice that much to improve my life.
Thanks for the response <3


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## Edgey

I think i am anxious every time i go out now (about the toilet) i get the sensation to go often when in fact when i'm home i don't need to go that often still may amount to 6 times a day but there are a few hours in between those toilet times and if i eat carefully i can go out and be fine for a few hours, just get anxious. 

but i'm worried if i go doctors about it and he gives me medication for anxiety i'm gonna be a zombie or does it not effect you like that?
and also if i put the issue to him he might say ask your gastro and i don't see any member of the gastro team for months at a time lol.

Also i've started sweating in excess which isn't usually the case for me, so i googled it and they said that could be a sign of anxiety :shifty-t:


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## GI Jane

Edgy, I truly believe in the Jordan Reuben diet.  I followed his book diet with the added supplements and was able to go into remission for years.  Problem is I love fat and sweets so went off it and all hell broke loose.  I know I need to do his program again just building up nerve and getting rid of the camels I bought when I was at the beach first....ya stupid...what's wrong with eating a carmel on the toilet lol.


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## cmack

I agree that could be anxiety, Edgey. I have tried SRI's SSRI's and they weren't really useful for anxiety. A low dose of diazepam or clonazepam may be worth a shot. MMJ is another option, it doesn't all make you feel high and dizzy. I wouldn't worry about being like a zombie. If you have undesirable side effects, they do tend to subside or else you just tell the doc and they start tapering you off. There is a lot of trial and error. You have to find the smallest effective dose so as not to be significantly impaired. I hope you find something that helps you.


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## Edgey

so I've started taking 2 sachets of Questran (Cholestyramine) in the morning before i eat and it works a bit but you have to take your meds 1 hour before drinking the solution and when i wake i got to the toilet like 2 or 3 times before the Cholestyramine starts to work (not sure if I'm taking it correctly) is it best with food or entirely before food?

I've tried a Loperamide with then and that seems okay but it isn't ideal going 3 times in a morning i'm gonna have to adjust my pattern to get up extremely early so i can go to the toilet 3 times then start my day which is a ball ache lol 
i also bought calcium supplements lol but they don't seem to do a lot lol

tried take a Loperamide before bed to solve the 3 toilet times in the morning but no success lol i understand i must got to the toilet in the morning lmao but 3 times within a certain time frame is too much lol

i think my metabolism is really strong because before when i did'nt/did have Crohns but toilets were normal id go 3-4 times a day easy lol

its so temperamental lol it'll become an obsession in the end where i'll try get it to 0 toilets a day and kill myself lmaooo but its quite depressing knowing i have to rely on tablets and stuff for the rest of my life 

but yeah that's my trail and error of the week lol
tune in next time lmaoo

EDIT: i still get the feeling that i need to go though now and again especially when out i panic lol i'm gonna book my driving lessons today also so i hope everything goes well.


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## Lynda Lynda

I take Clonazepam for anxiety,  but it is not for everyone. There can be "brain fog" and other issues with these kinds of medications, so if I feel I need to adjust my dose or change medications I will contact my doctor. I want to lessen my anxiety but I also want to be able to think for myself and make good decisions. Right now I feel that I am taking the proper "cocktail" of medications that work for me. There are also coping skills you can learn to help with panic ( Cognitive Behavioral Therapy.)  I am going to see my new "psychiatrist" today.:ack:  

Have a great Friday. ika:

Eek, was constipated terribly yesterday afternoon, so I only took one Cholestyramine Packet yesterday instead of two packets. Guess what happened this morning, yikes, a gusher of watery diarrhea.:stinks: Every day is a new "adventure." :ywow: ( But I do feel a couple of pounds lighter now - oh, I had better weigh myself :lol: )


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## Lynda Lynda

Edgey : Good Luck with your lessons !:ghug:


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## cmack

Best of luck to you bro, I hope you get some driving in soon. The one thing that stays the same is that everything changes, hopefully your predicament will change as well.


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## Edgey

Hey just a quick update to say I'm alive still lmao
I've since passed my driving test
found a stable enough (ish) amount of tablets that allow me out the house for awhile.
i still have to plan stuff obviously like where im going how far what im taking and when i eat but I'm able now lol.
i take 3 loperamide 2 sachets of questran and it carries me over until the next day.

got to get a car to drive still be its happening soon.
when i get driving i can consider working again because to and from isn't an issue then.

Thanks for the love, hope everyone's doing good <3


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## GI Jane

It's amazing how you forget things in your life but the driving test is never one of those.  Good job!


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## cmack

Awesome! Good to hear from you, Edgey. Keep in touch.


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