My CHS story
Hi everyone, I’m so sorry you are going through this. I know exactly how you feel and what you are going through. I hope posting my story and recovery timeline can be of help to you and help keep you strong.
I suffered in the prodromal phase for about 1 year. My stomach was in near constant pain. I threw up in the sink about once a week after waking up. If not in the morning, I frequently threw up at work after eating lunch. I threw up in my car after eating “bad food” at lunch driving home frequently. I remember heaving into a plastic cup behind the wheel while my stomach roiled and tore itself apart. Watching the directions on my dash. My mantra “only x amount of minutes until I’m home, can smoke, and lay down”. I had constant diarrhea, slowly lost weight and wasted away. The only thing that “helped” was marijuana. It temporarily helped with the pain and nausea. A friend suggested it might be CHS. I was an addict and in denial. No way it could be the marijuana, that was the only thing “helping me”.
I went to multiple doctors. Underwent one endoscopy before my CHS diagnosis. Got diagnosed with gerd and got medications to control stomach acid. No doctors suggested CHS (my PCP didn’t know it existed until I told her later about my diagnosis). I spent thousands trying to discover the root cause of what I convinced myself was a newly acquired “chronic illness” that I had suddenly developed.
Everything came to a head in March of 2025. I flew out of State to California for my grandmothers 90th birthday. I already wasn’t feeling well when I got in the plane. Throughout the very short flight, I felt worse and worse. My the time we landed, I knew getting ill was inevitable. I was shaking, sweating, pain roared through my belly, and I was going to heave into a toilet. The passengers were kind and let me get off as soon as I could. I rant straight into a bathroom, passing and wretched into an airport toilet. We spent about 1 hour at that bathroom, because I was too sick to leave.
When I finally felt I was “okay enough” to leave. I had my aunt drive us straight to a dispensary before going to my grandmothers. After all, that was the only thing that “helped”. After making my purchases, I sat outside the dispensary, smoking a pen and throwing up in the grass.
Within 24 hours of landing, it became apparent that this bout of sickness was different than any before it. Weed wasn’t helping. The zofran I had been prescribed wasn”t helping. I couldn’t stop vomiting. I would drink some chilled water. Within 15 minutes, it would come back up, still cold. I was dehydrated and losing strength.
My mom eventually took me to the ER. They suggested CHS. They put some fluids in me, and sent me on my way. I knew I was too sick to leave. But I didn’t want to fight with the medical professionals. I went back to my grandmothers and slept for 24 hours straight. Sleeping was the only time I wasn’t in pain or vomiting.
I inevitably landed back in the ER. I was so dehydrated on the drive there, I distinctly remember the rain that fell. I remember watching a ravine on the side of the road flowing with muddy water. The fantasy of sticking my head straight in, and drinking my fill. I wanted water so desperately, my mouth was dry and my head swimming. But any liquids I drank never stuck, they always came right back up.
At the ER the doctors and nurses tried to push fluids and send me back in my way again. I stuck up for myself and told them honestly that I felt too sick to leave. I asked to be admitted. I am lucky that they took me seriously and did as I asked. Many hospitals around the US are frankly sick and tired of CHS patients. We are often treated like junkies. It’s hard to blame them when patients are told what their diagnosis is, but they keep seeing the same people again and again in the ER because they are too addicted and stubborn to quit. (For proof of this, just look at this subreddit. So many comments of “on my __ episode” and “at the ER/hospital again”).
I spent the next 8 days in the hospital. I had fluids and electrolytes being fed to me in a constant IV stream. I threw up bile 15+ times some days. No pain meds helped. The only time I felt relief was when I got into a hot shower. Some days I took 8 showers. Each time I showered, I had to wait for the nurses to dislodge me from the IV stand, cover the IV port in plastic, and for them to ready the shower. Sometimes the nurses were very caring and diligent when I asked to shower. Others left me waiting in agony, nausea, and with a fading will to live for an hour + for this relief. Many times I thought to myself, if this is the end, I’m okay with that. If I could have lived in that shower at the hospital, I would have. But I also couldn’t sit in it 24/7 and not allow other patients to use it.
During my time in the hospital, I missed my grandmothers 90th birthday. I missed multiple days of work, and I had to push my flight home multiple times. I also had to tell my boss why I was absent, which was extremely embarrassing.
Thankfully, I survived. However, I am firmly convinced I would have died but for the care I received from the hospital. I told my doctor that opinion. He told me “I think you would have too”.
Unfortunately, my suffering did not end at the discharge from the hospital. Recovery was/is a long journey. What I am about to tell you next is a mix of my own experiences, and some educational guesses/theories as to why recovery is so difficult for CHS sufferers. I am not a scientist or a medical professional. Just someone who did a lot of research on CHS and trolled this subreddit religiously for strength and solidarity while recovering.
What nobody tells you about CHS recovery is that recovery is often dampened and hindered by two inevitable and unavoidable phenomenons. The first is that marijuana cessation invariably causes marijuana withdrawal. Marijuana withdrawal symptoms largely mirror the same symptoms of CHS itself. So not only are you suffering anxiety, shakiness, pain and nausea from CHS itself, but also the withdrawal symptoms. Prolific marijuana users (which most people with CHS are/were) can suffer withdrawals for weeks after quitting.
The second thing happening in tandem with cessation is the consistent flow of TCH that continues to plague your body and system from fat cells. It is well accepted and documented that THC is fat soluble. That means that abundant THC in the body is stored in the bodies fat reserves and cells itself. This is why it can take 30+ days for a prolific marijuana user to test negative on a marijuana drug test, even after they stop smoking or using. The THC remains in trace amounts in the bodies fluids because it is slowly leaking into you system from the fat cells themselves. Most people who get CHS lose copious amounts of weight during each phase of the disease: prodomal, emesis, and recovery. When you can’t eat without pain or vomiting, the body burns through its fat reserves, releasing the THC stored there. I theorize that this THC is just enough to re stimulate the endocannabanoid receptors in my stomach, throwing your whole body into a loop of retoxification, but not enough to stave off the withdrawal symptoms.
For these two reasons, CHS recovery is a long and arduous journey. For the first three months after leaving the hospital, i lived with near constant nausea. I threw up bile in my sink many mornings after waking up. I struggled to eat and hold food down. The constant ache and pit in my stomach haunted my existence near every day. Many of my favorite foods were off the table. Things like coffee, dairy, and cinnamon were too triggering to consider, and they caused additional emesis to occur on more than one occasion.
It took about 6-7 months for the near constant tummy pain to abate. This was the most difficult symptom for me to live with. It nearly broke me many times. Being in constant unrelenting pain is exhausting, depressing, and heart breaking.
It took about 8-9 months for my brain fog to lift. As someone who is literally paid to think and be smart, I struggled so much with this. I felt stupid all the time and my self esteem tanked.
My bout with CHS taught me many things. First, it taught me how lucky I am to have my partner. He flew to California to be with me in the hospital on a moments notice. He nursed me back to health once I came home. He was understanding with my inability to be intimate for months while my tummy couldn’t handle it. He went on walks with me to stay active and cooked me non triggering foods. He was my rock in recovery, and I’m so thankful I have him.
I also learned that I never wanted to risk my life like that again. I am proud to say that I am over 1 year sober from marijuana. I can see now that I was addicted to weed. I was smoking a 1 gram cart everyday 1-2 days. I spent hundreds on marijuana weekly. All the employees at the dispensary I frequently knew who I was, my name, and what I always bought. Getting high is NOT worth my life. I literally almost died. My friends and family rallied around me to help me during the experience. I never want to put myself, or them, in that situation again. Who’s to say they would do the same if this happened again? Empathy diffusion is a real thing, and I couldn’t blame them for losing it if I did this to myself again and again. They can’t care for my health and wellbeing more than I care about my own health and wellbeing, that’s just not healthy. It’s important that I honor the love, care, and empathy they showed me during my episode by never putting them through that again.
CHS stole so many things from me. My joy. Days living without pain. My money paying for hospital bills, 2x endoscopies and a colonoscopy, and marijuana. I literally paid for drugs that cost me thousands in medical bills. Thankfully I have good insurance, otherwise we would be talking $50k+ easily. It also took my pride. I had to tell my boss why I was missing 2 weeks of work. I also suffered from low self esteem and depression for months because of the pain and brain fog associated with recovery. It stole experiences and life events which can never be returned to me. I missed my grandmothers 90th birthday in the hospital. I was also too ill to travel to California when my grandfather passed away in May of 2025. I missed the funeral. My pride was wounded again when my dad told them why I had to miss it and that it was CHS. I also missed so many outings with co-workers and friends. I was in too much pain to hang out and attend social events. I worked mostly from home and was a recluse.
Being honest with you, I believe my irresponsible marijuana use and my illness likely caused permanent damage to my body. I can no longer enjoy food at spice levels I had enjoyed in the past. I have to be careful with my coffee and acid intake or risk getting “acid tummy” (heartburn) and having the ache and dull pain return for days on end. Popping tums weekly has become a way of life. Although this may also be a result of aging and being 30 now.
Sadly, when I stopped smoking weed, I also began drinking alcohol in unhealthy ways to cope with the loss. If I couldn’t get silly being high, I wanted another outlet of intoxication. It took me a couple night of binge drinking to realize that the recovery is no longer just a 1 day thing. It takes a week now of feeling like 2 months off of weed before I “recover” from the binge. I’m am currently on an alcohol break that I plan to keep up for at least a few months. I don’t think the body ever fully recovers from the type of damage and destruction I wrought on it with my marijuana use. I believe I now have to learn to live within the parameters of my bodies new limitations for at least the foreseeable future.
There is light at the end of the tunnel. You are alive. The pain, humiliation, nausea, and brain fog will alleviate someday. I won’t lie to you. Lying won’t help you. Recovery is a journey. It will take time. Probably more time than you or anyone would want it to be. I’m so sorry you are going through this. I know how heartbreaking living with your symptoms is.
Don’t give up and give in. Weed and getting high WILL NOT HELP. It will merely offer some potential temporary relief while simultaneously stacking additional time at the end of your recovery timeline. The THC withdrawal clock with start again. The THC will invade your fat cells, re-saturating them, and cause it to leak into your system, repoisoning you again and again for far longer than necessary. Getting high and this possible temporary relief (I say possible because at the end of my illness, additional marijuana was no longer alleviating any of my symptoms) is not worth your life/health, the added recovery timeline, or the trauma you and your family and friends will endure as a result of that poor decision.
I hope my story and unscientific opinions can offer you some solace and aid in your journey. When in doubt and needing extra support, I encourage you to reach out to this subreddit. I literally pulled it up for strength and solidarity multiple times daily in the first 3 months of recovery. I read every single new post, and many some myself. I do the same now, to try and help people like you. I believe in you, I care about you, please care enough about yourself to NOT relapse. My life and health and your life and health, are not worth getting high again for some potential temporary relief or to get high.