Crohns / ulcerative colitis sufferers

So probably not Crohns related, they now think its Covid related, an inflammatory syndrome similar to Kawasaki disease, moving him to St Marys in London to give him a hemoglobin infusion, apparently around 200 cases of this in the UK. :(

Had a positive Covid test just after Christmas, but little to no symptoms other than a brief loss of smell.
 
A couple of my friends now suffer with this and it can be quite bad. One was close to having to go into surgery and avoided that by a very narrow margin, thankfully for him because the cure is basically removing the affected intestine and then giving you a stoma. Then not much longer after that I had problems with my guts and it turned out to be diverticulitis, I got an infection in my large bowel which perforated and had to be rushed into surgery and now it's me who has the stoma. Thankfully it looks like it'll be temporary while inside heal and then have a reversal as soon as surgeries open back up.

So somewhat sympathetic for people going through this or similar, it really sucks.
 
I have just spent most of the night reading all 56 pages of this while on pred.

Had Crohns for 25 years and have it in my dudoneum very rare only 0.5% of people have this.

It's only my 3rd time on prednisolene, how long do you folks usually note it takes to work?

Also very interested in the future of crohns, many pages of reading this discussion were on diet some chap kept questioning why don't we change what we eat.

Of course when you get pain from eating something you soon stop eating that particular food, that is very clear.

Now my main interest is the future of crohns, technology moves faster and prednisolene has been used for 70 years.


We are due some medical breakthroughs maybe between now and 30 years from now.



On my wide awake research the last few nights i discovered this

https://www.healio.com/news/gastroe...safe-effective-for-treating-strictures-in-ibd

A ballon dilation looks also effective.


So stuff is happening, what's next. Even when you research future in anti aging, some of this future treatment may hold the keys to better treatments for crohns.

I know we are not scientists but we hold the clues.

I think it's about making the intestines and gut heal so as someone with crohns making a drugs that heals damaged intestines with minimal side effects and future complications would be a huge leap.

If you can heal damage you avoid the need for surgery.
 
A couple of years ago my IBD nurse decided it would be a good idea to try and reduce my Asacol from the max dose I had been on for 3 years to the normal maintenance dose. Well that didn't work and within a few weeks I had a flare. (99% sure it was the reduction in meds). She then wanted me to try "Asacol" enema's which I did for a few months with zero effect (apart from me sleeping in the spare room so I didn't "leak" on our nice mattress) Then they tried Pred foam which didn't do anything either.. I suffered with this until I decide to speak to my GP.. I told him I didn't want oral Pred but I think I'm at the stage where if I dont get some I'm gonna give up and just live on the toilet.

We arranged a sigmoid and the IBD apologised for letting it go on for so long and that she would listen to me much better in the future.

3 days later (after a pred script) all symptoms gone. But weeks of useage and then the dreaded taper.

I know pred is horrible but i respond really quickly
Its depressing knowing a flare up for me will mean months in the spare room, No intimacy with the mrs and pretty much unable to leave the house. but it can all be "fixed" within days..

Anyhow. Hope your all ok. Booked in for Jab #2 next monday.. I think i was in a higher group due to BP issues too
 
I know there have been many developments in medicine to treat IBD, mainly the monoclonal antibodies such an infliximab and vedolizumab, but I don't think we're any nearer to a 'cure'.

It's interesting when you read the clinical trials and studies for those types of drugs as they show a clear benefit, however I know so many people who have taken them and either still have flares or the drug has lost effectiveness over time as their body built up immunity to them.

I think more progress has been made in the surgical side of things (refining the j pouch technique, surgery for strictures as posted above) but its clear we're a long way off fully understanding these diseases.

Usually when I've taken pred, I've started on a 20mg dose, reducing 5mg every week if it's a mild flare. For worse flares, it was always an 8 week course, starting at 40mg and reducing 5mg each week.

If pred works, it really is a wonder drug, however the more courses you have, the more risk of longer term side effects.
 
Interesting how it works for both of you fairly fast.

I'm on 40mg per day and as of day 4 I can't feel it working, I'm sleeping fine and eating normal too that is unusual maybe they are a placebo.


Are any of you guys in biological treatments, I'm wondering how well they work.

I always have my certain foods I avoid even when I feel 100% for example fish and chips would get me no matter how many weeks I have been feeling good.

When your on these biologicals do you feel like your disease free? You can eat and drink anything with no problem, or are you still aware the crohns is there ?


Interesting how prednisone is still the forefront drug to treat inflammation after 70 years, would think that in this modern world medical developments would be faster.
 
DanTheMan said:
I know there have been many developments in medicine to treat IBD, mainly the monoclonal antibodies such an infliximab and vedolizumab, but I don't think we're any nearer to a 'cure'.

It's interesting when you read the clinical trials and studies for those types of drugs as they show a clear benefit, however I know so many people who have taken them and either still have flares or the drug has lost effectiveness over time as their body built up immunity to them.

I think more progress has been made in the surgical side of things (refining the j pouch technique, surgery for strictures as posted above) but its clear we're a long way off fully understanding these diseases.

Usually when I've taken pred, I've started on a 20mg dose, reducing 5mg every week if it's a mild flare. For worse flares, it was always an 8 week course, starting at 40mg and reducing 5mg each week.

If pred works, it really is a wonder drug, however the more courses you have, the more risk of longer term side effects.
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I've been on Azathioprine, which worked for about 10 years...then it stopped working so well. Then I went to Humira, which didn't seem to agree with me, then to Infliximab, which was OK for a couple of years but my funding was not renewed, and now I'm on Stelara, which seems to be working. Definitely not a one size fits all solution from my perspective.
 
WesternBuddy said:
Interesting how it works for both of you fairly fast.

I'm on 40mg per day and as of day 4 I can't feel it working, I'm sleeping fine and eating normal too that is unusual maybe they are a placebo.


Are any of you guys in biological treatments, I'm wondering how well they work.

I always have my certain foods I avoid even when I feel 100% for example fish and chips would get me no matter how many weeks I have been feeling good.

When your on these biologicals do you feel like your disease free? You can eat and drink anything with no problem, or are you still aware the crohns is there ?


Interesting how prednisone is still the forefront drug to treat inflammation after 70 years, would think that in this modern world medical developments would be faster.
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Pred has always worked well for me after a few days, keep at it, I've got my own out of date stash too just in case, I needed some late last year and couldn't get a doc to prescribe them, so out of date ones it was >_<
 
Pred worked great for me until it and everything else just stopped working. Even high does IV steroids did not do anything. Pred always took a few days to kick in and then it worked pretty fast. I’m still taking Pred now but not for IBD it unfortunately mucked up my Endocrine system so now I take it as a replacement therapy.
 
dirtychinchilla said:
I've been on Azathioprine, which worked for about 10 years...then it stopped working so well. Then I went to Humira, which didn't seem to agree with me, then to Infliximab, which was OK for a couple of years but my funding was not renewed, and now I'm on Stelara, which seems to be working. Definitely not a one size fits all solution from my perspective.
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Absolutely, some medicines are a wonder drug for people, whereas others don't have the same response. It's such a complex disease.

Your story sounds familiar, lots of us seems to stop responding to the various medications, some sooner than others. Like MOOGLEYS, when I had the flare that lead to surgery, I was on the maximum IV dose of hydrocortisone and it was doing nothing. Its strange how the body just stops benefitting.
 
Very interesting to read that last few comments.

I can feel the pred in my head now but not in my stomach, sort of feels there may be change feels like internal brusing rather than inflammation like I have been kicked and bruised not the usual hot on fire.

Do you folks take omeprazole with it?

And there is an interesting mix of medication in the above comments.

I'm interested to know how old you folks are and how many good years you have had and how many bad times you had where you feel like you need the hospital or doctor to step in and help.

I'm almost 40 diagnosed at 16, had to stay in hospital twice and surgery twice during this time.

So I guess I have had 6 really bad months in 25 years.

Even in remission I can't eat or drink everything and anything, certain foods would set it of no matter how good I have been.

Drinking alcohol and eating my stomach really does not like that, and as many of my friends organise meals and drinks that can be fairly annoying.
 
DanTheMan said:
Absolutely, some medicines are a wonder drug for people, whereas others don't have the same response. It's such a complex disease.

Your story sounds familiar, lots of us seems to stop responding to the various medications, some sooner than others. Like MOOGLEYS, when I had the flare that lead to surgery, I was on the maximum IV dose of hydrocortisone and it was doing nothing. Its strange how the body just stops benefitting.
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Yup, I'm luckily enough for Azathioprine to be this wonder drug for 14 years now. I hope it keeps working forever like this
 
I hate this disease, suddenly the Azathioprine isn't doing its job so I've had 4 flares up in the last 5 weeks, not eaten anything different than what I had in the last 6 months, my flare ups aren't as painful or vomity as before I started taking Azathioprine but it's still pretty painful and vomity :(
 
Minusorange said:
I hate this disease, suddenly the Azathioprine isn't doing its job so I've had 4 flares up in the last 5 weeks, not eaten anything different than what I had in the last 6 months, my flare ups aren't as painful or vomity as before I started taking Azathioprine but it's still pretty painful and vomity :(
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Get your IBD clinic to do a blood test to make sure the AZA is going to where it should be. I was on 100mg but it did nothing. I'm now on 25mg as Its now getting shunted to where its supposed to be by the use of Allopurinol (non medical terms)

I've never had short flare ups.. Mine usually take months to get back under control. Last 2 have taken 12 months


This disease is so frustrating.
I dont have to watch what i eat. My disease doesnt seem to be diet focussed (unless I eat something that gives me a bout of food poisening) But when I do flare I can't leave the house and I'm sat on the bog every 10 mins with about 5 secs notice and the flare takes months to get under control
 
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mattyg said:
This disease is so frustrating.
I dont have to watch what i eat. My disease doesnt seem to be diet focussed (unless I eat something that gives me a bout of food poisening) But when I do flare I can't leave the house and I'm sat on the bog every 10 mins with about 5 secs notice and the flare takes months to get under control
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Definitely frustrating I'm usually in bed for 2 days vomiting and stomach cramps, stuck on the toilet for another and then it takes 2 or 3 days to recover to 100% my flare ups are violent for the 2 days in bed but fortunately I recover quicker after the vomiting subsides, can't imagine what it would be like to carry on for months

I'm back to being terrified of what to eat now though, think I'll just stick to cheese or egg sandwiches for life :( I did originally think it was some cola and dr pepper that gave me a flare up but I cut those out, cut out the vaping too just incase and still getting them. Fortunately I've got my regular check up with the Gastro team on Friday so I'll be bringing the recent trauma up with them and I'm on monthly blood tests too so surely they would have picked it up if the Aza wasn't working properly ?
 
Minusorange said:
Definitely frustrating I'm usually in bed for 2 days vomiting and stomach cramps, stuck on the toilet for another and then it takes 2 or 3 days to recover to 100% my flare ups are violent for the 2 days in bed but fortunately I recover quicker after the vomiting subsides, can't imagine what it would be like to carry on for months

I'm back to being terrified of what to eat now though, think I'll just stick to cheese or egg sandwiches for life :( I did originally think it was some cola and dr pepper that gave me a flare up but I cut those out, cut out the vaping too just incase and still getting them. Fortunately I've got my regular check up with the Gastro team on Friday so I'll be bringing the recent trauma up with them and I'm on monthly blood tests too so surely they would have picked it up if the Aza wasn't working properly ?
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I think your monthly blood tests are for kidney/liver function not to check on the AZA.

Which reminds me I've not had a blood test for ages.. Our local hospital went to appointments only.
 
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