I get this quite a lot, material with a lot of pressure builds up inside and can't be released, although eating a meal usually forces it through.
It varies in degree but today it's the worst yet, I'm experiencing the most excruciating pain, I can barely think/speak, waiting for it to 'blow' and give me some release from the agony.
Anyone else experience this, even had scans or whatever to check, and actually found this to be the case? Or is it 'just IBS' -as usual?
Have you tried any Rennie Deflatine with this particularly episode? A build up of gas can really mess with the gastrointestinal nerves that us IBS sufferers are sensitive to. If I'm in extreme pain, often gas is the culprit.
You're right, gas is invariably the culprit, thanks. Have tried simeticone (Windeze, Rennie Deflatine), but it does not touch the sides. What's now really nasty is afterache (from the trauma) that can be as bad as what's being relieved.
Sorry to hear that. Did you manage to look into Linaclotide?
Yes, I asked, but because of past history with Crohn's, GP is blocked from prescribing it, and the locum put me on pregabalin, which doesn't seem to be doing anything, or if it is the signal is so weak against the current rather extreme symptoms. Via messaging (after it got so bad a doctor actually came to my house) he said effectively, can't help any more, can't suggest any more medication, no point getting me back to the GE team, fancy a referral to pain management team? Sorry about the 22 week wait to see anyone! Seeing another GP tomorrow I'll ask about the Linaclotide -needs to go to consultant level to get those apparently, so there is point in a GE consult and I'll push.
I've just looked at the research when I search for Linaclotide + Chrohns, I get this:
Linaclotide has not been studied in patients with chronic inflammatory conditions of the intestinal tract, such as Crohn's disease and ulcerative colitis; therefore it is not recommended to use Constella in these patients.
I found this research that was underway back in 2019:
medicalnewstoday.com/articl...
At the time I had an email exchange with Stuart Brierley the lead researcher. Lovely chap, but the research was only in the early stages and obviously he couldn't comment on my own situation. Interestingly Stuart was involved in the development of Linaclotide:
researchers.adelaide.edu.au...
Yeah, it wasn't that it was bad to use it of there is Crohn's, just they don't know. I'll look at those studies, thanks.
my son has ulcerative colitis badly and many people recommended hemp honey. But you need to get it from a good supplier. Hemp is better than plain CBD because it contains a spectrum of cannabinols which aid inflammation. It’s been known since Roman times. An American academic in North Carolina put himself in remission with it and wrote a booklet about it which you can buy on Amazon. I wish you well IBD is such a tough condition to work with - diet, stress reduction and exercise can all help but must be done consistently. Have you tried the SCD diet? It healed a friend of mine with severe Crohns. That plus high Vitamin B12 and initially steroids. She’s off everything and has been in perfect health for over 12 years.
Thanks Rozzy46. My niece has UC and apparently it's horrific when it hits. She's on some strong medication which usually keeps it under control and lets her look after her children and function very well in a good job. So there is hope for your son, but good luck, it must be very worrying. As I say it ought not to stop him.
I 'had' Crohns and had a big chunk of my colon removed decades ago.
The folk who stick things up me and down me say 'nothing to see here' so no Crohn's then.
What is in my notes is 'IBS diagnosis'. No physical signs, mostly the nerves playing games and generating horrid (and highly varied) symptoms.
But it's worth a try, and I take honey e.g. with crumpets so I'll look it up.
No haven't tried SCD but do low FODMAP. I am cautious with fibre but it is always encouraged for IBS folk.
Just curious, how did they actually diagnose you with Crohn.
It was a long time ago, about 40 years. I worked in Aberdeen, had a lot of problems, was passing blood (I guess in some pain, but nothing like this IBS), had various investigations of the day, including a hilarious method called 'barium enema'. Scottish doctor concluded Crohn's, I later had a right hemicolectomy when I moved back south, I can't recall what they said, but I had a 'fistula' which wasn't great. Much later a specialist in Sheffield questioned whether I had had Crohn's at all. I wasn't quite sure how to take that, like I was being called a fraud. And now no sign of it apparently. So it's a bit mysterious.
Does anyone else experience bloating and gas before they’ve eeven eaten anything?
Anyone else had positive experience with Aciclovir?
Mystery Symptoms - Anyone Else?
Like Sandpaper in my gut
