Crohns / ulcerative colitis sufferers

bledd said:
Touch wood, my j-pouch has been perfect for the past 24 months. Had it around 10 years now, it was fine for the first 2, then got really bad around the 4-8 years mark. It would flare up monthly for a week or two at a time.

My surgeon then 'widened' the join as he said my problems stemmed from it beginning to heal up/close over. Been living pretty care free for the past 24 months.

I feel for everyone in this thread, these illnesses are a horrific burden, they just sap the life out of you :(
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Delighted to hear it’s going well for you mate, very chuffed.
 
bledd said:
Touch wood, my j-pouch has been perfect for the past 24 months. Had it around 10 years now, it was fine for the first 2, then got really bad around the 4-8 years mark. It would flare up monthly for a week or two at a time.

My surgeon then 'widened' the join as he said my problems stemmed from it beginning to heal up/close over. Been living pretty care free for the past 24 months.

I feel for everyone in this thread, these illnesses are a horrific burden, they just sap the life out of you :(
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Glad to hear it's all going well for you, hope it continues :)
I've had my pouch getting on 18 years and it certainly hasn't been a smooth ride. I'm going through it at the moment, my frequency and urgency have increased and it can be really sore when I go.
At the moment I'm up twice a night, in total about 8 - 10 times a day. When I'm well it's once a night and about 5 - 6 a day.
It'll come good again.
 
When I was having flare ups, the best 'quick fix' I found was mebeverine. It had zero bad side effects for me, just massively reduced the swelling and removed the pain. It meant I could function in work and sleep all night. Then after a couple of weeks, it would usually clear up.

Wasn't a fan of metranidazol, felt dreadful and ached all over.
 
Pred puts me in remission faster than anything else I've tried....And it fixes my plantar fasciitis too. Which can be just as burdening sometimes
 
bledd said:
When I was having flare ups, the best 'quick fix' I found was mebeverine. It had zero bad side effects for me, just massively reduced the swelling and removed the pain. It meant I could function in work and sleep all night. Then after a couple of weeks, it would usually clear up.

Wasn't a fan of metranidazol, felt dreadful and ached all over.
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Never heard of mebeverine but it does look interesting. I suffer from pouchitis and rely on a constant low dose of metronidazole and full dose on flair ups. I need to get back to my consultant to discuss options.
 
I can't stand prednisolone, the last flare I had I refused to take it so they gave me budesonide even though they were not happy with it as it's more costly it fixed me right up in two weeks without any of the side effects. That was a year ago and that's the longest I've now been without any symptoms after years of flaring and chopping and changing drugs. I'm on azathioprine and asacol as well now for the last four years.
 
Does anyone else get really nauseous when on a bit of a flare? In fact I'm not even on much of a flare at the moment, but I'm feeling really sick all the time. No vomit yet, but feeling really bloated and spaced out.
 
chipperhead said:
It's definitely not ideal but it's about quality of life. Without it I have acute pouchitis with symptoms almost identical to a full UC flare up.
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Have you always had this or is it a recent thing? After my previous widening procedure, I've been tip top.

As the surgeon/doctors always say to me, there's no exact science to it and each patient is different.

@dl8860 , I've not once felt nauseous, but it's not uncommon.
 
Maccapacca said:
I can't stand prednisolone, the last flare I had I refused to take it so they gave me budesonide even though they were not happy with it as it's more costly it fixed me right up in two weeks without any of the side effects.
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I've fortunately only ever had budesonide, first time the GP got the prescription wrong - AFAIK there are different delivery mechanisms that target different parts of the gut and I suspect the GP wasn't aware of this and tried to save some money by prescribing a different variant to the one specified on the e-mail from the IBD team... so I then had to go back after being told about this at a consultation and have them prescribe the correct drug... costing the NHS another couple of hundred pounds or so.

Another time I had to request it from a GP the locum doctor, upon looking it up, remarked "oh yikes, I might get a bit of flack for this from the partners but if the IBD team say you need it then..."

It certainly does seem like a good way of avoiding pred and the possible side effects if it is feasible to be prescribed instead.
 
bledd said:
Have you always had this or is it a recent thing? After my previous widening procedure, I've been tip top.

As the surgeon/doctors always say to me, there's no exact science to it and each patient is different.

@dl8860 , I've not once felt nauseous, but it's not uncommon.
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I started getting pouchitis very occasionally about 5 years post op, by approx 8 years I was on 200mg Metrondiazole per day prophylaxis. Every time I try to reduce this I start flaring up. I've been on this dose for the last 10 years, however it enables me to carry on living my life.
I am interested in other options such as mebeverine for obvious reasons however I have been scoped numerous times and have had pouchitis confirmed.
My consultant is keeping an eye on me and also signs of long term Metronidazole effects such as nerve damage.
I was hoping after my Liver transplant due to PSC (which is UC related) the immunosuppressant meds would help dampen things down but they haven't.
 
Intense abdominal cramping... check, diarrhoea with blood...check, Anxiety showing it’s face....check.....

Looks like I’m starting a flare. :-(

Stupid illness.....

On a dose of steroids to try and get it under control.... eurghhhhhh ....
 
MOOGLEYS said:
Intense abdominal cramping... check, diarrhoea with blood...check, Anxiety showing it’s face....check.....

Looks like I’m starting a flare. :-(

Stupid illness.....

On a dose of steroids to try and get it under control.... eurghhhhhh ....
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Ugh feel for you bad mate. Do you take salofalk enemas? they help me...

Hope you get through it and the steroids knock it on the head quick!
 
WantoN said:
Ugh feel for you bad mate. Do you take salofalk enemas? they help me...

Hope you get through it and the steroids knock it on the head quick!
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Cheers mate. I’m using solafalk suppositories at the moment since my fistula surgery enemas are a bit painful to use.

Always happens to me when we have nice weather...... lol
 
mattyg said:
Have you tried the pred foam?? targets direct with non of the usual side effects

Not as effective though but it may help
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I do have some but since my surgery things are not happy down there so the plastic tubes can be a pain.

Happy to give the tab steroids a week just to get things hopefully moving although I have never had much luck with them in the past. It’s the cramps that’s killing me at the moment. Not had them like this before...

I recently came of my Escitalopram and I think they might have been doing more for my guts than head tbh. Need to have a chat with the consultant after the bank holiday see what she thinks.
 
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