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


 
09-04-2017, 12:40 PM   #121
Edgey
 
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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
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09-05-2017, 10:27 AM   #122
GI Jane
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No sorry haven't been on that one. Wish you luck. On my Remicade one they made me wait an hour.
09-05-2017, 12:01 PM   #123
aypues
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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.
09-05-2017, 03:25 PM   #124
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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 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 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
09-05-2017, 06:09 PM   #125
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I'm really not a fan of medical facilities either, I hope the pens come in soon. Best of luck to you bro!
09-08-2017, 09:40 AM   #126
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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
09-08-2017, 11:57 AM   #127
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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.
12-15-2017, 08:22 PM   #128
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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

Last edited by Edgey; 12-15-2017 at 10:05 PM.
12-20-2017, 08:19 PM   #129
GI Jane
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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.
12-20-2017, 10:16 PM   #130
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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!
12-22-2017, 10:18 AM   #131
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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.
how much cheese do you have to eat and how many hours before and that's great to hear, glad you're doing well. Personally i think I'm in remission just this Bile acid
12-22-2017, 11:29 AM   #132
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how much cheese do you have to eat and how many hours before and that's great to hear, glad you're doing well. Personally i think I'm in remission just this Bile acid
Not great but doing better with the stomach since the blood clots appeared.

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12-26-2017, 12:47 PM   #133
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Yep never brag on doing better...wow issues but it makes sense since different holiday food and stresses. Oh well should be better soon.
03-26-2018, 10:59 AM   #134
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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 :P
03-26-2018, 11:27 AM   #135
ronroush7
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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 :P
Good to see you, Edgey. I hope things get better soon.

03-26-2018, 01:31 PM   #136
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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!
03-29-2018, 09:18 AM   #137
GI Jane
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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 :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.
03-29-2018, 02:59 PM   #138
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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
03-29-2018, 06:23 PM   #139
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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.
03-29-2018, 09:10 PM   #140
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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.
03-29-2018, 09:42 PM   #141
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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.
03-29-2018, 09:50 PM   #142
Lynda Lynda
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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.
03-30-2018, 05:24 AM   #143
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I feel like I am still learning, Lynda
03-30-2018, 09:54 AM   #144
GI Jane
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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
04-06-2018, 03:27 PM   #145
Edgey
 
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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
04-06-2018, 03:50 PM   #146
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Maybe you need to seek out another opinion, Edgey.
04-06-2018, 07:15 PM   #147
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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
04-06-2018, 08:35 PM   #148
Lynda Lynda
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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.
04-06-2018, 08:44 PM   #149
Lynda Lynda
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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.
04-06-2018, 09:00 PM   #150
Lynda Lynda
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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.

Take Care.
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