Living on the toilet

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Edgey

Edgey

Joined
Jan 20, 2012
Messages
84
Location
Wolverhampton
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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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.
 
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).
 
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.
 
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
 
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
 
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.
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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
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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
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i'll take you up on that :D
 
cmack said:
Edgey,

Hope you are doing better.
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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.
 
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
 
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
 
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
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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
 
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
 
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
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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:
 
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
 
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
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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
 
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
 
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
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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 :D

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

Sorry if any of this sounds dumb, I've just woken up from a nap :ylol2:
 
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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.
 
GI Jane said:
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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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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 :p 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) :D
 
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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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
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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:
 
ronroush7 said:
Having a c diff test. Waiting for Humira to kick in.
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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
 
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
 
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
 
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 :/
 
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.
 
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
 
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
 
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
 
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
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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
 
GI Jane said:
Ranitidine is what I take for acid reflux.
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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
 
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
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What time do you take it? I was recently told to take it in the morning.
 
ronroush7 said:
What time do you take it? I was recently told to take it in the morning.
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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.
 
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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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
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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.
 
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
 
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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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!
 
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?
 
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.
 
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:
 
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.
 
cmack said:
Hey Edgey,

How are you bud?
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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:
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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.
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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:
 
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
 
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 :p

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 :D
 
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 :p

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 :D
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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?
 
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
 
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?
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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
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yeah well one can only hope lol and its good to hear that you're doing well bud :thumright:
 
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.
 
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.
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That is interesting because I had my terminal ileum removed.
 
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.
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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 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
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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
 
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
 
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 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
Click to expand...

I get a lot of protein from chickpeas. I also drink organic soy milk and it seems to help keep the muscle on.
 
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
 
Coconut oil in smoothies with peanut butter and yogurt and banana adds a lot of calories and is good for you.
 
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
Click to expand...

yeah thanks for the advice bud
yeah i think i need to up my weight and work my way up on reps again :p
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.
Click to expand...

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
 
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.
 
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.
Click to expand...

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:
 
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
 
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.
 
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. :(
 
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 :)
 
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
 
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
Click to expand...

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

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