Is bypassing the intestine the only answer?

[Jenny06xx]

Back on the subject of diarrhoea!!

This is a big problem for me , an has been my main symptom for 8 yrs .
Lately though I live by the loo ! I say lately I actually mean the last 2 years !
I've tried every pill an powder going an find the only thing that slows it down is opiate based meds ( codeine, dihydrocodeine , lomotil etc )
Is there anything else I can do to make life easier ?
Or Is the only option to have a stoma and bypass the intestines entirely ?

It seems extreme to think of stomas for diarrhoea, but I do have a stricture an have been told eventually I need a resection or worse anyway , but as far as stopping the diarrhoea what else do u all know of that could help at all ?

I shouldn't have to take opiate pills to avoid toilet trips but it's the only way ATM .
I've tried immodium an ended up on 14 a day !
Then questran powders ( they hurt my stomach bad but I was undiagnosed at the time )
Lomotil ( just not strong enough an couldn't take anymore )
Calcium tablets ( didn't notice any difference at all )
So now it's just my painkillers that do the trick to slow things down or avoid eating at all so I don't suffer !
Any advise or suggestions ?
do any of u with a stoma still find toilet problems just as bad or worse ?
Is there another option I don't know of ?
Would a resection solve my problems ?

 

[Misty-Eyed]

Hi Jenny. Is the diarrohea the only symptom you're getting a the moment or are you also getting stomach pain with it? Also, where about is your crohns located?

It sounds to me like your crohns isn't under control if it's so bad. You shouldn't have to be dealing with it without your GI doing their best to get it under control. What have they said about it?

I had my stoma formed 6 week ago and yes, life is a lot easier with it. I can decide when I want to empty my bag and when it needs emptying, there is no physical feeling that I need to, if that makes sense. Saying that, dehydration issues are still a problem. Obviously as you know, it's a major life change and shouldn't be taken lightly. You'll probably find that the nhs will refuse you for the operation unless it is deemed crucial. Not only is the op very expensive but also all the gear to go with it afterwards! Plus they would very rarely operate on you unless you were extremely ill of had run out of medication options.

Speak to your GI and make it very clear to them that you can no longer go on like this. Hopefully they'll come up with some solutions!

 

[Jenny06xx]

Hey Hun thanx for your reply x

No my main symptom is severe pain an diarrhoea .
My crohns is in the small and large intestine
Plus I have a stricture ( not sure exactly where it was spotted when I had a pill cam an the cam got stuck there !) he only got 2 hrs of pics before it got stuck but saw lots of ulcers etc aswell , so I'm assuming from my pain just to the side of my belly button on the right plus only 2 hrs pics that my stricture is roughly there .
I also have lots of pain at the illeum area an that was where my colonoscopy showed problems aswell .
Plus burning type pain on the lower left side not sure what that's from though.
I've been advised that a resection is likely but we didn't go into detail my gastro is awful and currently I'm waiting to see another 1 , 6 mnth wait though ! An that's even with him saying he wants to see me lol

I hate living by the loo an stuck on pred and dihydrocodeine , it's horrible having to plan everything around the loo or panicking about where the loo is !

So if I have the resection could it b that it may solve my diarrhoea issues or help them ?
Or am I looking at uncontrollable diarrhoea even if I do have the bad bits removed ?
I know I'll never b free of pain but if I could just make life easier by controlling the diarrhoea without opiate meds that would be an amazing help .
Jen xx

 

[Misty-Eyed]

Jen that's awful. Sounds like you're having a really tough time of things at the moment!

It really does sound like you have very active Crohn's at the moment and I don't think a 6 month wait is on at all! I only see my GI every 6 months when things are picking up! I'm really surprised they haven't mentioned any other meds to you. Using pred in the long term is really not good. Especially when they have so many other drugs they can give you. Infliximab, etc.

If you have the resection done, I'm not sure how your diarrhoea would be afterwards. But obviously while they are inside you, they'd have a good look around anyway at the state of the rest of your intestines.

Are there any IBD nurses at your hospital? I always call them when I'm having problems and they make an appointment with my GI within a couple of weeks. Either that or I pester my GI's secretary until she makes me an appointment!

I hope you get it sorted soon!