Living on the toilet

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I will ask my gi about the bile acid treatment

Good luck i hope it works buddy :D
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:
 
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
 
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.
 
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
 
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
 
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. :(
 
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.
 
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.
 
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)
 
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.
 
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.
 
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 :D
 
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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.
 
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.
 
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
 
No sorry haven't been on that one. Wish you luck. On my Remicade one they made me wait an hour.
 
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.
 
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!

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 :D
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:
 
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 :)
 
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.
 
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 :p

Hope everyone is doing well <3
 
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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.
 
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:
 
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.
 
Yep never brag on doing better...wow issues but it makes sense since different holiday food and stresses. Oh well should be better soon.
 
Heyo people :D

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 :p
 
Heyo people :D

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 :p
Good to see you, Edgey. I hope things get better soon.
 
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!
 
Heyo people :D

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 :p

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.
 
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
 
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.
 
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.
 
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.
 
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
 
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 :mad:

quick opinion and rant lmao sorry
 
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
 
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:
 
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:
 
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 :mad:

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:
 
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. :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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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:
 
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.
 
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.
 
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.
 
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. :pika:

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: )
 
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.
 
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
 
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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