Need to stop going to the toilet!

[Edgey]

hey,

Haven't posted on here in ages as i forgot i had an account so many apologies

been through loads of treatments (no joke) and nothing has worked but after surgery i haven't since had pain (thank god) but i have a serious problem with the toilet i cannot go out at all because of it.
I have managed to go out before for a hour or 2 down the pub which involved not eating and plenty of imodium which doesn't quite go down well with alcohol and this was only one occasion and even then i felt i needed to go but i think thats me being nervous about the situation,

i thought i'd ask you guys if you have any solution to the problem?

I understand that this is my crohns acting up and maybe even stricturing my bowel further so anything that holds me back from the toilet isn't a great idea but i need to live lol

also infleximab is one of the many drugs i've tried and it paralyses my one side of my body and so forth (recovered from it) but they now want me to try this new drug that can cause PML and me taking those side effects from the infleximab it's seeming likely i'll adopt the worst symptoms from this new drug (can't remember the name something like nvizimumab) probably butchered that but i can't think right now lol.

I'm generally a clumsy mess now bumping into everything going dizzy in the shower having to sit down and all sorts now so somethings not right

But the toilet thing would be great if you guys can give me something to try to treat that issue
many thanks for your replies.

 

[Scipio]

If the new drug they want you to try is Entyvio, the risk of PML is very, very low, perhaps zero. It binds a target similar to, but not the same as, Tysabri, and Tysabri did cause PML. But both scientific theory and actual results agree that Entyvio should not have that problem.

During the extensive clinical trials and through the two years it has been on the market the number of cases of PML caused by Entyvio is exactly zero.

 

[Edgey]

If the new drug they want you to try is Entyvio, the risk of PML is very, very low, perhaps zero. It binds a target similar to, but not the same as, Tysabri, and Tysabri did cause PML. But both scientific theory and actual results agree that Entyvio should not have that problem.

During the extensive clinical trials and through the two years it has been on the market the number of cases of PML caused by Entyvio is exactly zero.

yeah that's was the drug vedolizumab my mom is against me taking it because a lot of people who also took infliximab didn't get the side effects i got (paralyzed and all) she seems to think i'll take the worst side effects and be that 1 lol but i'm 22 and i think i'll give that drug a shot then but my mom does have a point as far as i can see (i'm no doctor)

Thanks for the reply

 

[Edgey]

I try the Entyvio drug tomorrow and also start prednisolone, R.I.P me lol
i'll update the thread for anyone looking on how the drug works.

 

[ronroush7]

Hope it does good things for you.

 

[Edgey]

Just got back and everything went ok ish lol
30 min intravenous and 2 hour wait period and i had to eat there as i didn't want to pass out and as a result i nearly didn't make it home so i won't be doing that again.

But feeling wise was just general tiredness and a few hot flushes now and again.

 

[hauermich]

Have you tried probiotics? My son takes VSL#3, it is for UC but it helped his antibiotic diarrhea. I hope you find what works for you. My son is only 16 and has been miserable since his diagnosis last year. Still trying to find what works.

 

[Edgey]

Have you tried probiotics? My son takes VSL#3, it is for UC but it helped his antibiotic diarrhea. I hope you find what works for you. My son is only 16 and has been miserable since his diagnosis last year. Still trying to find what works.

I have tried numerous probiotics, not VSL#3 specifically but thanks i guess i'll give it a google

 

[Edgey]

Just a quick update i got really sick and it was coming out both ways lol
but only for a day pretty much called my nurse on the day.
Though i was going to have bad side effects like the infliximab, turns out it was only a virus (thank god) only had it for 24hrs.

On another note my doctor gave me steroids to go on while starting my new treatment (the usual prednisone) and i'm in two minds on what to do, the steroids cause me to gain a considerable amount of spots and stop working when i get down to 4x5mg as my body moves everything out too fast.
Or i could take them and deal with a few more spots and have a appetite boost for a short while (needed) but then again with me going to the toilet so much is the appetite boost so welcome?
Unsure on what to do

My mom also wants me to try this cannabis oil and i'm not in favor of that as of yet at least because if the Vedolizumab does work or the cannabis oil how am i to know which one worked? lol

 

[Edgey]

so i started prednisolone (about a week in) and they have done nothing what so ever?! nothing is working for me i can't catch a break everything is doing my head in personally think i'm too far gone and need an operation now...still waiting for the vedolizumab to kick in (doubtful).

calling it a day soon.

 

[ronroush7]

so i started prednisolone (about a week in) and they have done nothing what so ever?! nothing is working for me i can't catch a break everything is doing my head in personally think i'm too far gone and need an operation now...still waiting for the vedolizumab to kick in (doubtful).

calling it a day soon.

Wishing the best for you.

 

[Lizzie]

I think pred takes two or three weeks to start working, it did for me, so I wouldn't give up hope just yet if it's only been a week.

 

[Edgey]

I think pred takes two or three weeks to start working, it did for me, so I wouldn't give up hope just yet if it's only been a week.

been on them 3 weeks now i just came down to 5x5mg last week, hope is only a detriment at the moment lol.

Thanks for the reply.

 

[Edgey]

Heyo all,
So my doctor gave me Colestyramine to slow me down with going to the toilet so much but it turns out it this brutally disgusting powder lol i'm not sure but i think you can get them in tablet form? so I'm going to ring my local gp tomorrow and try get some in tablet form.

Anybody tried these before and have any suggestions? is it best in powder form?

Thank a lot

 

[Edgey]

good news I've tried this Questran today and it seems to have improved the toilet issue (its only day 1) it appeared my bowels movements may have been due to bile acids? but i'm passing a lot of gas right now lol but we will see tomorrow when i have to go out (vedolizumab injection)

 

[ronroush7]

Good luck to you

 

[Edgey]

well the Questran seems to have stopped working but it did work for 2 days and now nothing have no idea why....
anyone got any advice on how best to take it?
Thanks