Colchicine toxicity & Behcets gastro symptoms

[SCMW]

A few years ago around the time I had the diagnosis of Behcets I had rectal bleeding. I had a flexi sigmoidoscopy and not the full colonoscopy and no issues were identified other than a few piles.

I’ve currently been having looser and looser stools to the point where I am getting a breakthrough on clothing etc.

Has anyone had this symptom as part of Behcets or as part of colchine toxicity? I’m trying to work out what’s happening and think I will need to ask to go back to gastro. In terms of how much I’m affected, quite often it is as soon as I get up and probably once or twice more in a day. Any info welcome.

[Icefire]

Hi there,

My stools are loose if I eat gluten. I've not been eating it for a few years but recently got cross contaminated and it has taken a while for my tummy to settle. It's so bad at times it's hard to decipher weather tummy bug or gluten! Dairy can also be a problem. For a while I couldn't eat eggs, peas or some nuts but seem to have grown out of that over time thank goodness.

I've recently discovered that emulsifiers are really bad for gut health and appear in everything. (Especially gluten and dairy free alternatives). Real whole food is key to health.

I was prescribed colchicine but never took it for fear of making gut symptoms worse. I manage for now by keeping a close eye on nutrition, sleep and stress.

To help get over the last bout of unsettled tummy I have started taking a super strong probiotic. I can't quite get my head round how 8 'good strains' can make the difference when our micribiome is made up of hundreds of different strains and species but it seems to have worked in this instance. The company 'research' claims resolution in a certain number of ulcerative colitis patients so I'm giving it a whirl. I recently read that Behcets should be considered a type of inflamatory bowel condition.

This is my current thoughts. I often look back at posts and think ' well that was wrong! 🤣

Good luck, I hope you find resolution.

X

[Jacktomo95]

Hi,

I have had the same symptoms in the past before my Behcets diagnosis. Likewise also had colonoscopy and flexi sigmoidoscopy but nothing was found just slight inflammation. I still have the occasional issues with either constipation or then bouts of stomach pain and diarrhoea (which definitely isn’t pleasant) but found buscopan helps a lot with the cramps also was advised to take a probiotic which I do daily now and that helps too!

The only side effect I experienced from Colchicine was severe cramping in my legs. Consultant stopped them due to the risk of toxicity. However he had told me to look out for severe diarrhoea or leaking stools etc so might be worth asking their opinion on if it’s related to the medication.

Hope this helps or even makes sense 🤞🏼

[gillianTS]

Definitely had toxic issues with colchicine. I had been feeling unwell gastric issues, diarrhoea, cramming, skin issues, my GP's did not believe it was colchicine and after several GP appointments and through huge concern for my own health I made direct contact with my then consultant who, within the hour, instructed me stop stop taking colchicine immediately and get my blood checked asap at the GP. My blood test returned with high toxic reactions to colchicine, GGT levels were over 350, cannot recall exact figures. It took over 3 months for my GGT levels to return to the normal range, which is 0 to 37, and a further 3 months before my consultant tried me on any other drugs for Behcet's. So my advice is to get a liver and kidney function blood test carried out asap.

Your GP might want to reduce your dose thinking it is this but do not let them fob you off, get you blood checked. Colchicine is a great medication for many Behcet's patients however it is also toxic for others, some only have the odd skin irritation with hives but even this is a form of toxic reaction.

I now have this on my medical records at hospital and GP as suffering from allergic toxic reaction. I believe my gastric issues have been worse since this happened.

Colchicine is not working well can build up levels in your body raising the risk of side effects. On the major side of the build up of colchicine can leads to profuse vomiting and diarrhea, which can be bloody, followed by hypovolemic shock and multisystem organ failure within 24-72 hours. Coma, convulsions, and sudden death might also occur.

Just in case you consume grapefruit and grapefruit juice, this can increase levels of colchicine in your blood and should be avoided if taking colchicine medication.

[Frogge]

I had trouble with colchicine. I took it once at the beginning of my Behcet's diagnosis and it didn't really make a big difference, but I didn't want to go on azathioprine, which was the only other option they gave me. I am a teacher and worried about having a worse immune system on that while teaching in the world's biggest petri dish. So I just stopped taking anything for Behcet's. Then about 4 years ago, I was flaring for a continuously long time, so we decided to try colchicine again. I got such bad diarrhea that it just came out of me and I had no control over it at all, day and night. I tried to continue for 2 weeks and then gave up and just dealt with the flares instead. I hate colchicine.

[Lizzie46]

hi yes i had same problem so take colchimax now which is colchicine (i was told!) with something added to stop the diahrea. also you can try and take alternate days and see what works out best for you. i use green clay powder regularly as that is good for the gut anyway. best of luck with it all. it is a horrid disease and as mostly invisible,, hard to deal with sometimes.

[josnuggles]

Hi. I'm exactly the same, but had much worse issues on top. I didn't even think about colchicine, so big thanks for that.I love my tena ladies. Protection at all times.

I don't have a behcets doctor at the moment but will certainly discuss this with them when I find one.

Please keep us updated and good luck

[muttiof3]

I took colchicine for a good 20 years. A fairly low-dose, and it seem to keep everything under control. However, colchicine does not play well with many things.

One of the things I discovered my body didn’t like when I was taking colchicine is turmeric. If I took turmeric, while taking colchicine, I would get, truly, uncontrollable diarrhea. It took me a while to figure out that it was the turmeric that was causing the problems and not a flareup another thing colchicine caused problems with was when I had bloodwork done, my liver numbers would always be up, and after a couple years of my numbers not going down, and I was eating right and not drinking, I decided to go off colchicine. My life is about the same not being on colchicine except now I can take small amounts of turmeric, I can eat grapefruit, which I love, and my liver numbers are normal. It wasn’t a fatty liver after all… but the colchicine.

p.s. It seems like colchicine didn’t play well with most supplements. For instance, magnesium. Every time I thought about taking a supplement, I would look it up first and it never failed that it would be recommended to not take if taking colchicine.