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


 
04-07-2018, 05:51 AM   #151
Edgey
 
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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

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.

Take Care.
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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Currently on:
stelara
multi-vitamin
loperamide
questran

Last edited by Edgey; 04-07-2018 at 02:00 PM.
04-11-2018, 08:02 PM   #152
Edgey
 
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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
04-12-2018, 11:14 AM   #153
GI Jane
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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.
04-12-2018, 11:25 AM   #154
cmack
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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.
04-13-2018, 07:49 AM   #155
Edgey
 
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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.
04-13-2018, 11:45 AM   #156
Lynda Lynda
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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.

Have a great Friday.

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. Every day is a new "adventure." ( But I do feel a couple of pounds lighter now - oh, I had better weigh myself )
04-13-2018, 11:49 AM   #157
Lynda Lynda
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Edgey : Good Luck with your lessons !
04-13-2018, 12:22 PM   #158
cmack
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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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