Crohns / ulcerative colitis sufferers

MOOGLEYS said:
Looks like I’m having a flare. My Anxiety is going mad and I have diarrhoea, no hunger and lots of abdominal churning noise constantly....

Blood test tomorrow and then need to talk to docs about anxiety meds’ and nurse about colitis meds.

Blehhhhhh.........
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I'm almost 12 months into a flare. I've had my Azathiaprine dose lowered as it wasn't working and have had Allopurinol (Gout medicine) added to help shunt the AZA to where it should be. I've been on Pred foam enemas for nearly two months. They took about 3 weeks to start working but I'm at a stale mate now with them as they have got me so far but not quite 100%. I had been on 40mg Pred and after a week I was symptom free but 3 days after tapering off I got the gut gurgles and wind.

I too am at the hospital tomorrow to see my IBD nurse.

Fingers crossed for you mate.
 
mattyg said:
I'm almost 12 months into a flare. I've had my Azathiaprine dose lowered as it wasn't working and have had Allopurinol (Gout medicine) added to help shunt the AZA to where it should be. I've been on Pred foam enemas for nearly two months. They took about 3 weeks to start working but I'm at a stale mate now with them as they have got me so far but not quite 100%. I had been on 40mg Pred and after a week I was symptom free but 3 days after tapering off I got the gut gurgles and wind.

I too am at the hospital tomorrow to see my IBD nurse.

Fingers crossed for you mate.
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Same to you mate.....

Steroids have worked well for me in the past as well but the coming off is a pain. I had to taper slowly for months to stop my symptoms returning.
 
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LeMson said:
Moogleys what are you anxious about? Just the flare or anything else we can help with?
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I’m pretty sure my guts and anxiety are linked and if one flares so does the other. I had a bad flare last March and that was the first time I had Anxiety. No idea why tbh I might be Anxious thinking it’s more than Colitis tbh I don’t know.

I found a combination of meds and cbt brought things under control and by June I was pretty much as normal again and came off the Anxiety meds in Nov and have been fine up until now. No idea what started it might just be time for another flare....

The gut noises and trapped wind feeling is pretty bad right now my guts are constantly gurgling and churning. I have lost my appetite but still eating just not my usual amount which tbh is probably a good thing...lol.

Will get back on my meds combination and see how things go. The Anxiety is far worse for me feeling wise it’s horrid so hoping the meds and doing some cbt gets that under control and hopefully my guts will follow.....

All good fun....
 
Really sorry to hear that Moogleys.

I've finally got my initial appointment at the hospital on the 29th and can't wait to hopefully get some proper help. Things got so bad that I had a couple of minor accidents at work that's still pretty embarrassing. The doctors have got me on quite a hefty dose of buscopan and some anti diarrhoea tablets but all that does is bung me up for a few hours and make me feel really nauseated. Then when I do go again the pain is awful, naturally I don't take them unless I absolutely have to.
 
My GP sent me for a Sigmoidoscopy when I eventually got to see my proper GP. From him, to being diagnosed was only a week or so ( I think) then about another 3 days of Steroids and I was as good as new...Kinda.

Mines worse when I eat. It seems to kick start a chain reaction. As soon as food goes in. Old food wants to come out. I'm like a baby
 
For me the Anxiety is doing me in no idea where it comes from maybe just part of the package. I found last time once that was better controlled my colitis also settled down too. I hate the feelings it gives and the panic so imagine it must do havoc to my Bowles.

Thought I had done away with it after the last time but alas it seems not.
 
My Anxiety has seemed to calm down a bit now which is nice and have not used any meds for it. Guts are still wonky and getting lots of gurgling and wind. Had a blood test and all ok so could be a bit of ibs caused by the Anxiety as my inflation levels are all normal.

Taking Wind eze which helps and have to just wait it out and let everything try and sort itself out..

All good fun Head and Gut issues.... lol
 
Can't help much I suppose but chin up guys. I'm pretty grateful that whilst my Crohn's is active, I am still maintain a fairly normal active life...whatever normal is these days.

Edit - Moogley, tried meditation/mindfulness for the anxiety? Worth a shot.
 
Well this flare up has been ongoing now for just over 12 months.
Started the usual way.

Turns out the Azathioprine wasn't doing what it was supposed to so they have lowered that does and added in some Gout medicine that will shunt the AZA into doing what it should.

I still have the mega urgency. (which most people will never understand, I can go from not needing the loo to not being able to get off my chair without crapping myself within the space of about 3 seconds) But now I also have wind and when I say wind I mean a hurricane. One with a lot of mucous. So again its fart on the bog time.

My mrs was amazed at the amount of air she hears gushing out from the bathroom. This enormous amount of air gets expelled at least 7 times before 11 am. Sometimes I'm woken in the night by wind and its a trip to the toilet. Sometimes I need to sit back down on the pot several times after feeling I've emptied myself.

This year has been tough with little let up in my symptoms.
 
Mine is pretty much the same as yours at the moment. I also have a fistula so cannot use anal meds or anything other than Asacol tabs according to my consultant. Having surgery for the fistula in Dec then deal with the colitis flare after.....

The wind and gurgling in the morning is bad for me too.
 
I had a similar experience with azathioprine not doing what it should whilst simultaneously making me feel very lethargic. It's a constant balancing act which I wasn't prepared to play so I gave up the azathioprine completely.

As for the wind / urgency, it's something that people without an inflammatory bowel condition will never understand. I think the narrowing of the colon due to swelling, combined with your body producing more wind because of the colitis means a lot more wind trying the escape a much smaller space!

Even though I haven't had a flare for a good few years, the urgency and constant need to know I have an escape route to a toilet still dictates my life.

Hopefully the aza with start doing it's thing soon and ease the symptoms!
 
I was diagnosed with UC last October and instantly had a severe flare up which ended with a week in hospital in December. I was pumped full of steroids and antibiotics as well as 4.8g of Mesalazine tablets per day.
The flare up eased but the mesalazine has not managed to control my symptoms which seemed to get worse every couple of weeks, like being on a roller coaster!!
My IBD nurse has suggested a change in meds so I've been on the oral prednisolone steroids for the past week and I start Azathioprine on Monday (still taking the mesalzine too!!).
I'm worried about the possible side effects of the Azathioprine but need to try it.
Any tips for taking the Aza (e.g. is it better to take them at night to avoid nausea)?
 
BigB@dJ@y said:
I was diagnosed with UC last October and instantly had a severe flare up which ended with a week in hospital in December. I was pumped full of steroids and antibiotics as well as 4.8g of Mesalazine tablets per day.
The flare up eased but the mesalazine has not managed to control my symptoms which seemed to get worse every couple of weeks, like being on a roller coaster!!
My IBD nurse has suggested a change in meds so I've been on the oral prednisolone steroids for the past week and I start Azathioprine on Monday (still taking the mesalzine too!!).
I'm worried about the possible side effects of the Azathioprine but need to try it.
Any tips for taking the Aza (e.g. is it better to take them at night to avoid nausea)?
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I have no side effects with AZA. In fact since being on it I've not had a cold. Which is the reverse of what most people say. They'll start you on a low dose to see how you react and then increase it.

The risks with AZA are small. But on the plus side we are monitored closely and I suppose a side effect of that is if we were to get something (even without the AZA issues) they will spot it early.

The Mesalazine will, if it keeps working, be lifelong although they will reduce it to a maintenance does of 1 x3 a day rather than the 2 x3 a day now.

I react quickly to the Pred. usually within 3-4 days. Within a week I'm almost symptom free. But they don't like keeping you on it for long. 12 weeks and then taper off. I taper down to 0.5mg as I'm known to have a rebound flare. I can dose for 3 months and then taper down for 2 months.
 
I was on Pred for 12 months lol, aza I didn't get on with, was in constant back pain with it, Methotrexate has been perfect for me though system wise :D
 
Been on and off (mainly on) steroids for 4 years now. Pred and Budesonide cause such bad side effects in the end I couldn't tolerate them any more, I'm now on Beclametazone (Clipper) which has worked better. The steroids have weakened my bones (osteopenia) and given me serious gut problems, so additional drugs needed.

Current Meds :
Adcal
Vit D
Lanzeprazole
Mesalazine
Azathioprine
Clipper
Vedolizumab

Weaning off steroids is hell, I'm on an anti inflammatory diet but unfortunately my autoimmune disease affects my liver and pancreas badly. And eating welll is almost impossible.

Surgery is going to be more dangerous because of the liver and trying to get off steroids not only makes me flair horrifically but also sets off my pancreatitis.

In short no one has a clue what to do with me or if I can / should have the surgery to remove my colon.

On the bright side the anti inflammatory diet I've been following (specifically tailored to my tolerances etc) has made the most impact of any treatment. NHS has been no help with diet so it's all research, trial and error.

Good luck to all those doing well and commiserations to my fellow sufferers.
 
Well I'm getting some suppositories as I cant keep the foam in. And they are organising another Sigmoid scope asap.

Typically been much better today. Only ate Maccys yesterday. Looks like my goto easy on the gut is Mcdonalds.......Great:rolleyes::mad:
 
I’m now 1 week post fistula lay open and my god the pain is unbelievable. I had an MRI and they found a fistula so operated they think it could be the cause of my flare and reacurring abscess. Having a fistula laid open whilst going to the toilet 15+ times a day is so painful it’s unreal.

Anyone else had any experiences with fistula surgery ?
 
No thank god but it's only a matter of time i suppose.

My gut has been a bit weird yesterday, lots of gas and "rabbit droppings" running to the loo every 45-60 mins. I haven't had any problems for the last 6 months

I wonder what it is :/
 
robgmun said:
No thank god but it's only a matter of time i suppose.

My gut has been a bit weird yesterday, lots of gas and "rabbit droppings" running to the loo every 45-60 mins. I haven't had any problems for the last 6 months

I wonder what it is :/
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I have honestly never felt pain like it. I’m pretty good with pain but this is another level I have had to resort to strong codeine tabs which marginally help but I’m sure will not help my guts so need to be careful. Hot baths and bucket loads of Sudocrem are helping more tbh...

Have you tried drinking plenty of water could be constipated ?
 
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