Crohn's Disease Forum » Your Story » Still no treatments and cannabinoid hyperemesis syndrome

12-15-2018, 05:06 PM   #1
Join Date: Mar 2018
Location: Glasgow, United Kingdom
Still no treatments and cannabinoid hyperemesis syndrome

I know it's not crohn's related, but it kinda is. So I did post about this a few months ago but i'll give a short recap... Since July/August I've been waking up with nausea and sometimes vomiting bile as soon as I wake up. I thought it was crohn's related, but an upper endoscopy in September revealed there's nothing wrong with my stomach (except a hiatal hernia), but no h. pylori and I've also recently had a stool test for bacterial infections and it all came back clear. About a week ago I managed to see another gastro doc by calling the hospital a few times a week begging for help. I said I was smoking cannabis a lot because I seen it help me, I genuinely believe if it wasn't for cannabis I would of lost a lot of weight, but as soon as I said that the doctor said with asking no other questions said that it was CHS. So per her advice I've stopped smoking cannabis and have already lost 10 pounds in a week. I'm in two minds about what to do but I really am going to stick to a period of sobriety and eat as well as I can even though the vomiting hasn't shown signs of alleviating

And how this related to crohn's. So there's not too much about CHS online, but two things I've learned is that it's very rare and is caused by mutations in the stomach lining... So I think there's a correlation between crohn's and CHS because people with crohn's already have mutations in their digestive tract. So people with IBD should be cautious about cannabis. CHS is associated with heavy chronic use of cannabis and I understand many of you may rely on medical cannabis for relief of their IBD, but just watch out for morning nausea and vomiting and also symptoms of gastroparesis (mainly you vomit food 4 hours after eating).

General update: I have no turned 21 and have been seeking diagnosis and treatment for 10 months. I have been offered steroids (only under the condition that "we want to see if your symptoms react to steroids like crohn's would" so i rejected them as I really think it's vital that I start a longer term med like an immunosuppressant because it can take months to work instead of short term meds like steroids which have horrible side effects. I've also had my IBD nurse appointments cancelled because I don't have a diagnosis as of yet. I'm also going to have an MRI of my small intestines and another upper endoscopy (that one I'm not looking forward too). So thanks for reading hope the CHS info had a positive effect.
12-16-2018, 08:56 AM   #2
Jonny84's Avatar
Join Date: Jun 2015
Location: Edinburgh, United Kingdom

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i've never understood why people with IBD choose to smoke cannabis, with all the negative side effects of smoking - especially for people with Crohn's. If Cannabis helps that's great but why not either eat it or get some CBD capsules and take them?
12-16-2018, 08:31 PM   #3
D Bergy
Senior Member
Join Date: Apr 2007
Stricture comes to mind as I had one with much the same symptoms.

Another one I had despite a few negative tests was H-Pylori. These tests are too often used as the last word on an infection. The truth is that they can prove very accurately that you have an infection. They cannot with certainty prove you do not. Some people react to a slight amount of H-Pylori way more than others.

It could also be a strangulated hiatal hernia.

All the above are more likely than the CHS diagnosis. As you mentioned, it is pretty rare.

Glad they are looking into it further. It shouldn’t be ignored.

Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
They are simply my opinions.

Crohn's Disease Forum » Your Story » Still no treatments and cannabinoid hyperemesis syndrome
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