Crohns / ulcerative colitis sufferers

mattyg said:
It takes me ages to come off prednisalone. They messed up when I was first diagnosed and forgot to take me off them. So was on for over 12 months.. They seem very conscious of this now and my last flair went on for Neal 12 months before they finally gave in and let me have them again. I respond quick when on but ht taper is not good... Coming down is ok its the last few weeks if i go too quick I rebound flair
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I had my colon removed in January so I didn't need to worry about a rebound flare! :D
 
DanTheMan said:
I had my colon removed in January so I didn't need to worry about a rebound flare! :D
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I said to my long suffering partner as a joke that I wouldn't get married until pigs can fly or the hole in my arse closes up


Then I got UC and that is now a possibility

Joking aside, Thats a pretty big op mae.. How's recovery going.
 
mattyg said:
I said to my long suffering partner as a joke that I wouldn't get married until pigs can fly or the hole in my arse closes up


Then I got UC and that is now a possibility

Joking aside, Thats a pretty big op mae.. How's recovery going.
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Ha, I've still got a hole for now! (and nobody tells you that you will still pass mucous from it occasionally)

Recovery is going well. It was emergency surgery as I had a massive, uncontrollable flare so I went into surgery in a less than ideal situation. I'm pretty much back to normal now after 10 weeks.

To be honest, life with a bag is pretty good. Nowhere near as dreadful as I thought. Spending ten minutes every 3-4 days to change a bag is much better than spending hours of my life stuck to the loo. Emptying is is simple as I just do it when I have a wee and it takes 30 seconds.

I do miss sitting on the loo and watching videos or posting on here though. :cool:
 
DanTheMan said:
Nice! I've heard so many horror storied about j pouch failure that having it done scares me. I'm 7 weeks post ileostomy surgery and I'm quite 'enjoying' life with a bag. It's so liberating being able to go anywhere without having to worry about where the nearest toilet is and I don't want to have j pouch surgery and end up back where I was prior to surgery.

Can I ask, how often do you go to the loo and can you hold it if necessary?
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Sorry hadn't logged in much recently.

Typically would say around 5-6 times, the bid offer is 3 to 9 I would say for me. I eat often (I do a lot of road cycling etc) and drink 5-6 litres of water a day as well. I can hold it yes.

There are exceptions, like say a curry takeaway can sometimes cause a little more frequency and also more urgency.

Typically eat vegetables, meat (fish/beef/pork/chicken), porridge etc.

Doesn't bother me, I cycle long distances, hike for ages etc and it doesn't get in the way
 
Flaring at the moment and just got the call for a bank of blood tests which mean visiting the hospital tomorrow :mad: mask up? Obviously hammer the hand sanitizer but don't fancy sitting in a waiting room :confused:
 
MOOGLEYS said:
Tool on IBD registry for assessing your risk from Covid-19. Also forwards details to your IBD team to keep them updated.

https://ibdregistry.org.uk/covid-19/
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Ah that's cool, thanks for sharing.

I think in my case (without any other relevant conditions) it basically told me what I already knew from the previously posted links/guidance - "moderate risk" based on the medication I'm taking.

Quite neat if someone has some other conditions too and that it can forward to the IBD team too. :)
 
Thanks Moogleys, Thats very helpful.

To those of you on azathioprine, are you still having regular blood tests? I’m moderate risk, and am trying to avoid going out anywhere if possible. My next blood test is due next week, am I’m thinking of asking my IBD team whether it’s best to maybe miss this one.
 
spp said:
Thanks Moogleys, Thats very helpful.

To those of you on azathioprine, are you still having regular blood tests? I’m moderate risk, and am trying to avoid going out anywhere if possible. My next blood test is due next week, am I’m thinking of asking my IBD team whether it’s best to maybe miss this one.
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No worries chaps hopefully it is helpful.

spp I would definitely give your IBD team a call about your blood test and see what they say.
 
spp said:
Thanks Moogleys, Thats very helpful.

To those of you on azathioprine, are you still having regular blood tests? I’m moderate risk, and am trying to avoid going out anywhere if possible. My next blood test is due next week, am I’m thinking of asking my IBD team whether it’s best to maybe miss this one.
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Sons on it, not due a test for 3 weeks. Really won't be keen on taking him at all. Will see what they say.
 
Just been in touch with my IBD nurse who informed me that my blood test isn't actually due until next month. She said to get in touch with her nearer the time and they'd decide if I needed it. Hopefully, things may start to calm down in May!
 
Nope, I think the stay in letters are for elderly and vulnerable people with specific conditions. Have not seen anything yet to suggest IBD peeps have the sort of risk that say peope with cancer, heart failure and diabetes etc... have.

Having said that, I’m self isolating anyway.
 
spp said:
Just been in touch with my IBD nurse who informed me that my blood test isn't actually due until next month. She said to get in touch with her nearer the time and they'd decide if I needed it. Hopefully, things may start to calm down in May!
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Possibly also (assuming things go ok) they’ll probs be better set up in May with better segregation for the non-covid parts of hospitals, better management of cases etc...

While not easy to predict these things they were hoping for a peak sometime in April IIRC.
 
dowie said:
Nope, I think the stay in letters are for elderly and vulnerable people with specific conditions. Have not seen anything yet to suggest IBD peeps have the sort of risk that say peope with cancer, heart failure and diabetes etc... have.

Having said that, I’m self isolating anyway.
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I was thinking more people who are on immune suppressants to be fair
 
dirtychinchilla said:
I was thinking more people who are on immune suppressants to be fair
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That’s most of us I’d assume? I mean most IBD drugs suppress the immune system in some way.

I think most of us are deemed to be “moderate” risk currently. Certainly IBD hasn’t been named alongside some of the other conditions that pose a high risk.

Within IBD there was a link with guidance for different medications and it was essentially some people taking steroids and newly commenced biological treatment that were deemed to be higher risk.

I do wonder what will be found re: Crohns meds as we get more data, obvs we know we can find it harder to shake off colds/flu etc... on the other hand re: the massive immune response seen in severe Covid19 patients would some Crohn’s meds actually help reduce that? Like might we find Crohn’s patients might have a mild to moderate infection for longer but perhaps slightly reduced chance of the massiveimmune response?

I guess lots just isn’t known yet but at least IBD isn’t named yet among some of the other conditions.
 
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