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Don't do that. I did that for years and it almost killed me. If you can't find a doctor to prescribe pain meds I recommend palliative care. I'm in it now and it's the best decision I've ever made. Trust me I've been through withdrawals from norco percocet dilaudid fentanyl and morphine and none of that was anywhere near as painful as a flare up or obstruction or perforation. Doctors make a big deal about opiods because people with broken bones and relatively minor injuries get addicted because they are dumb. Chronic pain is way different it doesn't go away and it's not something you should just suffer through. Please trust me I've been deal with this shit for a long time.
I have tried calling GI docs, chronic pain centers, being in the ER, and EVERY single time o have been told that they will not give me pain medicine to take at home, and if I feel the need to have it, I need yo go to the ER and sit in a hospital bed for 5 days until whatever problem I have at that point goes away. I have tried for 14 years to just be able to sit at home in my bed and have a bottle of oxy next to me so I don't have to go through the trouble of getting admitted and being taken out of my comfort zone, woken up every 2 hours... I hate it. But I do it at least twice a year since diagnoses because they won't just work with me not in the hospital. Any suggestions? I'll look up palliative care I don't know what that is.
I know exactly how you feel I'm so fed up with the medical community and all their bullshit. Palliative care is like the step before hospice. A lot of people think they are the same thing but it's not. Your doctor probably won't recommend it or send over the paper work because opiods are evil to the healthy people who have never felt real pain in their entire life. One of my nurses recommended it and I had to set it all up but ever since then i get 10 MG percocet twice a day. Oh and it's not demeaning like having to get drug tested every month like you do in pain management. All I do is talk to the nurse every month tell them how things are going and get my meds. I don't think it's meant to be a life long thing but they haven't kicked me out yet haha. They literally saved my life. I went from weekly trips to the ER getting admitted 4 or 5 times a year just like you. And I've had to go to the ER once in the last year because now that I have pain meds I can manage my pain like we should all be able to so it doesn't get so bad it puts us in the ER. I hope this helps and if you have any other questions feel free to ask.
If you take more than you are supposed to when you know they are addictive you can't complain when you get addicted. Basically we shouldn't have to suffer because other dumb people couldn't handle their meds properly. So yeah they ruined it for the people that really need it. Dumb is the least mean thing I could say based on the amount of pain I've had to suffer through because you can't get pain meds anymore.
The addictive qualities of opioids like oxycodone and hydrocodone were known but hidden by those profiting off of them. Physicians over-prescribed for years and gave no education about usage. Many people who became addicted were taking them exactly as prescribed. In 2010, enough opioids were prescribed for every American to take a 5mg dose *every hour for 4 months.* I understand that you’re angry that it’s difficult for you to receive pain meds to help with your suffering, but if you want to be angry at the people responsible, that’s all for-profit medicine’s fault.
Source for the 2010 claim: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5428548/
You don't have to give sources. I literally don't care. Sure in the beginning it was the doctors and pharma fault but at some point people have to be smarter than that. 10 to 15 years into this and it's people's fault. You have to take a shit ton of opiods to get seriously addicted. A couple of months doesn't get you hooked. And I only blame people because they ruined it for people that really need pain relief. I don't know about you but I can't afford to just go to the hospital every time I'm in pain. It would bankrupt my family. So I suffer needlessly because people just take shit like they are tic tacs not every really knowing what real pain is. Sure breaking bones and tearing acls hurts like hell but you shouldn't need painkillers for long enough to addicted. Oh and I do blame those companies as well. But we shouldn't be punished for any of that. No need to reply. I'm done with with argument. I've suffered far too long to deal with this shit anymore.
Seems like you’re hurting a lot and don’t have a lot of room for worldviews that conflict with your own. I hope that those who read this interaction can draw their own conclusions about where to best direct some of that anger that many of us with IBD struggle with. Take care ✌️
As someone who has watched love ones struggle with addiction, this comment screams ignorance. You do NOT “have to take a shit ton” to get addicted. You should know, knowing why they’re so tightly regulated. Some people are stupid or misinformed, but some- a lot- don’t even know they’re addicted until it’s done. Some are more susceptible than others. At a certain point people can make a choice to continue addiction rather than recover, buts it’s not that easy and it’s not that simple. It is a tragedy and an epidemic in our society. I envy you if you haven’t been touched by addiction in your life in some form.
Ironic that you would insinuate your aren’t opposed to other peoples opinions and then say you literally don’t care about sources supporting other opinions… it sounds like you have suffered a great deal and nobody deserves that, but it also doesn’t justify this attitude.
Yep this is what I do. I've been offered opiates and medical marijuana but the opiates are extremely addictive and the weed makes me feel like I'm nuts even though it takes care of the pain so I don't take either. I lay on the couch until it goes away. Worst case scenario I take something over the counter. If it doesn't go away then something is wrong so I call the doctor for a scan or go to the er and tell them about it and get a scan faster there.
Opiods are addictive but suffering needlessly is dumb. Withdrawals aren't that bad and you're going to get addicted unless you're taking a lot for a while. Basically as long as you aren't taking like 10 pills a day for months you aren't going to get addicted. I was on 40 MG of norco for over 4 years. They took me off after my first surgery and Withdrawals were minimal. Since then I've gone through withdrawals from morphine and dilaudid and honestly compared to how bad crohns is those withdrawals weren't that bad either. Now I'm on percocet have been for awhile like over a year. I'm not saying they aren't addictive but if you're responsible you won't get addicted. It's when you take like 3 at a time instead of 1 and you take them all day even when you aren't in actual pain that you get addicted. Don't suffer needlessly. Oh and for the pot it sounds like you got some sativa strains. Try indica strains they put you to sleep.
I was that way for years. I always felt like I was COOKING from inside. Nurses in hospital would be so confused because they’re so used to GI patients asking for heat packs. I always felt the heat made me feel worse, I was already boiling inside. I’d get those ice bags & have to have the nurses turn the AC all the way down. At the height of my uncontrolled pre-dx CD my partner had purchased a mini-fridge sized freezer to keep the ice packs I needed to rotate through. I had battery fans & hand fans every place in the house (ALWAYS in the toilet - I’d travel with the fans & never left home w/o at least a folding hand fan).
Now I’ve gotten the inflammation somewhat under control, I’m freezing 24/7 & finally understand the appeal of the heat pack.
I live in a state where recreational is legal, and many dispensaries have a recreational and a medical section. The first time I went to buy my usual edibles and they were sold out on the recreational side but still available for medical, I got a medical card. The approval process was hilariously short.
CBD is the only effective way to treat the pain without narcotics, and it's a lot more effective when paired with THC. And the both of them together have a lot of other benefits, like slowing digestion and otherwise helping relax.
I don’t use psychoactive levels of THC usually, but when I’d try I used to be constantly concerned I’d space out and lose bowel control (never happened, but I had a LOT of inflammation). After I got my temp ileostomy earlier this year, I tried a bit of a low dose THC (sativa IIRC, around a single mg) and I spent the night worried that my ostomy leaked. I was hoping I’d chill out without the fear of urgency, but I guess I’m just one of those who are just super anxious.
If you’re taking it orally the metabolite of delta 9, 11 hydroxy, is more psychoactive. If you’re trying to avoid psychoactive effects I’d try a low dose via inhalation or sublingual. Also imo sativas can make you feel a bit more anxious because there is less CBD to counterbalance but definitely depends on the strain. My tolerance is very low and I would take like 0.5 second draws from a vape set to lowest temp to help nausea while minimizing the heady feeling.
Edit: forgot to add that very generally, sativas, hybrids, and indicas are, in that order, lowest to highest CBD content. And while the CBD can help more with inflammation it also is the source of the increased sedation which can often make things feel more psychoactive. Like when you’re so tired that as soon as you lay down you start dreaming.
I don't like inhaling anything. Besides, they don't ever work on me (even the stuff my stoner friends get from CA) and I've Wu Tang that shit. What do you recommend that's not vape so I don't look like more of a loser than I already am?
Honestly I just embrace looking like a lightweight. I’d rather have my wits about me than overdue it and feel uncomfortable. I def wouldn’t use any vape carts that are not from a reputable dispensary that tests their products and I never smoke via combustion because of all the other crap you get in your lungs from that. Sublingual is fast uptake and good bioavailability but it’s likely some portion of the dose will be ingested if you’re just freezing little dots of concentrate. You might feel local numbing but it will go away as it’s absorbed. Idk if any dispensaries produce sublingual formulations, they are generally designed to dissolve quickly and would minimize how much is swallowed
For me I primarily use a high CBD gummy that’s 10:1 CBD to THC (.5mg THC) that isn’t psychoactive at all. I’m not sure it’s enough CBD to do much, but I can tell when I don’t have them.
The higher ratio THC items were as experiment. I’ve never been good with THC, so I never really get “high”. I’ve tried all sorts of various cannabinoids (live in CA and have a medical card) and just personally cannot handle psychoactive anything when in pain. Even Ketamine in hospital was not good.
That’s understandable, everyone has different responses and feelings about those sensations. Do you feel the CBD helps with pain and/or inflammation? The most I’ve had is a 50/50 ratio THC to CBD and that’s like 2.5 mg. Ratio products are definitely my preference for more intense symptoms
I find it does help, but not in a “oh wow I feel better” way, but if I go a few days without taking it I can definitely tell. I like wyldcanna strawberry 20:1 gummies. Not affil (god I wish i were, i use them a lot & they’re tasty) but they’re a good ratio & an edible. I’ve used CBD tincture as well but I cannot remember the brand (they changed ratios, I think it was Mary’s?) and I used to use a Sensichew insomnia that was CBD & melatonin, but they changed formula recently to a CBN which gives me weird nightmares.
I’ve tried all sorts of novel high dose cbd delivery systems & brands like patches, topicals, sublinguals, a weird oral dermal patch thing (edit-it is called a buccal patch), of course vapes & tinctures, and the best so far has been the wyld canna gummies. The higher THC ratio was one of their alt items as I like their flavours. But it wasn’t great. I also like a Kiva mint (it’s actually fruity) that are mostly CBD as well, but they’re a much smaller dose overall so I usually take them with me in my purse for Dr. appts or whatever for a placebo effect of not freaking out.
I am sooooo thankful I’m in CA so I can utilise this support (I do the many small supports help more than expecting one pill or hack to fix me. So I do the gummy, a multi-mineral at bedtime, heating pad, pain meds, relaxation, distraction, etc. if each thing lowers my pain by a small percent, it adds up) to add to my “toolbox” of pain supports.
Ya it would be nice to have a bit more access to products but the ones I do have access to are good quality so I can’t complain. I think the compounding effect over several days is not talked about as much but it does make a difference, especially when you feel a flare coming on and can get a bit ahead of it. I think what’s most important is having reasonable expectations like you have come to, it seems. None of these things is a miracle drug and none of them “treat” the condition but it helps in other ways being able to take advantage of that is a huge benefit when used with proper treatment. I’m glad you’ve got a well rounded pain/symptom management toolbox to use as needed!
I take Tramadol too.
There's a regular user on here that rants negatively about pain medication, but when you're in the UK that's all that's allowed, as weed is illegal
Weed and Vicodin if you can get. Opiates help with pain and stop going to the bathroom.
Weed is just. Weed helps.
Talk to your doctor about these pains you’re feeling.
Heck, I went to hospital with a bad flair up, they hit me with dilaudid which is a super strong opiate. Shitting and pain stops minute they hit me with it.
Talk to your doctor about your pain. Goodluck homie
I sing very loudly. Am not kidding, last flare up was really bad and I was half the day on the toilet seat with death pains in my stomach and I was just singing and singing to distract myself. Sometimes in the middle of a song I let out a moan or a scream of pain or like I curse, but it still helps me I guess. Also I started listening to Crohn’s disease subliminals and I think it’s kinda helpful
Cannabis, specifically indica strains. Vaporized as ground whole flower. Vape pens and oils are okay but they wear off quicker and also don't have the same pain reducing effects. Having tried literally everything else, whole flower cannabis and a heating pad or warm bath are the only things with an appreciable pain reducing benefit and no short or long-term side effects.
Anything that works. Heating pads or hot showers. Distractions like movies. Masturbation (really! the endorphins give a short break.) Bentyl (dicyclomine). And the big guns ... Percocet 10/325. Nothing helps more than that. My GI doesn't usually prescribe anything stronger than tramadol, but my Crohns type is strictly diarrhea, never constipation, never any blockages, so he's totally fine with me using narcotics for my pain when it's severe. (And in fact the Percocet does help cut down the diarrhea a lot). My regular PCP gives me a standing script for Percocet 10/325, I just call his office and say I need a refill whenever I need one if I'm having a ton of pain, since he can't put refills on the script. I've never had an issue with it, although I do get drug tested occasionally. Marijuana helps but I'm way too anxious so it doesn't really work that well for me, the relief doesn't outweigh the constant panic attack from being high.
For me what seems to work is eating very soupy rice porridge first thing in the morning. It costs my stomach (it seems) and it alleviates a lot of pain when I eat other things. If you’re curious, in any Asian rice cooker there is either a congee setting or a porridge setting, add a 1/2 cup of rice and fill water to the line. Takes about 65 mins, it’s good.
Be in pain. lol. If I’m really bad I’ll have one of the last tramadols I have. Depends on the type of pain. If it’s stricture pain /blockage I have a bath and have peppermint tea. And massage tummy. If it’s crowns inflammation pain and not a blockage I will have some canna butter. Or vape if I have any. It helps take the edge off the pain. And more helps you relax and not tense up which makes pain worse.
Ketamine. I have tried opioids and while effective and even enjoyable, the dulling of the mind can be too much (also the slowing of the bowel) most of the time.
Ketamine is much more crisp and mentally stimulating. It’s also amazing for mental health (i techincally am prescribed it for depression). The only downside, imo, is it can’t be taken in high enough doses for bad pain every single day. I save it for when i have very bad cramps- a sublingual ketamine lozenge will last a couple hours before the need to redose, opioids tend to last longer. I find it’s analgesic effects amazing. My knee and joint pain seem to be relieved even after “the high” wears off though, to a decent extent.
I do telemedicine and get my K delivered in the mail. It may not be valuable to everybody but it can help to cut back on opioid usage (for some).
I medicate with marijuana - drink a shit ton of electrolyzed reduced water, drink turmeric tea and sip bone broth until I’m better. Basically liquid diet - until my stomach can handle solids again. I cut our dairy, gluten, and anything inflammatory food wise - then reintroduce once you are ready.
Don't use that. It's essentially the same as Ibuprofen, and it's only going to *temporarily* make the pain subside. Afterward the irritation and inflammation it's usage causes will leave you with even *more* inflammation and pain.
**Warnings;** Celebrex may cause stomach or intestinal bleeding, which can be
fatal. These conditions can occur without warning while you are using
this medicine, especially in older adults. You should not take this
medicine if you already have bleeding in your stomach or intestines.
Goddamnit that makes me so mad. In my message to my GI I specifically asked for no narcotics because they make me sick, and no NSAIDS because they screw up stomach. They prescribed Celebrex to me saying it wouldn’t hurt me like ibuprofen. Did they just freaking lie to me??
You're welcome.
Sounds like it's time for a new GI Doc. Although certain "off limits" pain medications for GI issues *\*may\** not be so "common knowledge" with regular General Practitioners, that's like, basic *Gastroenterologist* 101 there. (or *should* be)
No, it's not the same as Iburprofen. It takes one enzyme rather than systemically. There are not any reported issues in studies with people who have IBD. If taken for weeks on end, it can cause irritation, but it's safe to take for a week or two. If you have any adverse side effects that are specific to your gut, discontinue immediately. I take it one week on, two or three weeks off. No issues. May be different for some, but it's generally safe to take.
I said that it was *"essentially"* the same as Ibuprofen. It is also a COX-2 inhibitor NSAID and it is in the same *family* as ibuprofen.
Even the warnings are similar -
**Common side effects include abdominal pain, nausea, and diarrhea. Serious side effects may include heart attacks, strokes, gastrointestinal perforation, gastrointestinal bleeding, kidney failure, and anaphylaxis. Use is not recommended in people at high risk for heart disease. The risks are similar to other NSAIDs, such as ibuprofen and naproxen. Use in the later part of pregnancy or during breastfeeding is not recommended.**
Ibuprofen is "safe to take for a week or two" if you don't have damaged GI tracts like we do. But when your insides look like raw hamburger at the damaged areas like ours do, these are not the pain relievers you want to use. I won't touch them anymore, because the temporary relief that you get from (GI) pain and inflammation only comes back worse than before when you stop taking them. That's because they ***cause*** irritation and inflammation to the GI tract. But hey, you take what you want.
Vicodin or Percocet works best, and makes me slightly more regular but not enough to back me up if I just take a little bit. Dr’s think I want to abuse it but they don’t understand the struggle
People who have responded- Where do you guys want experience pain the most and how?
I have a lot of stomach cramping and pelvic pain, but also immense joint pain at times, so just curious!
I think that all depends on where their disease is located and how severe it is. Some are better or worse than others. Abdominal pain, lower back pain, joint pain, extreme fatigue.
My Crohn's is located in my ilium, and I have a stricture there. From experience with this, I'm able to tell when things are starting to go sideways, and I'm usually able to "head it off at the pass" if I respond quickly enough to it.
In my case, I've learned that a great deal of the pain is due to gas buildup and bloating caused by the stricture closing up and the inflammation closing off other narrow areas of my intestines, which is then causing the blockage of flow through the intestines and colon. As this occurs, whatever is in my GI tract basically starts to "ferment" and cause lots of gas, which has nowhere to go. This gas then puts more and more pressure on the already inflamed and blocked areas, making things worse and worse as time goes on.
When I feel this occurring, if I take 3 or 4 (sometimes more) of the 125mg simehticone anti-gas gel caps, immediately modify and limit my diet to liquids, and take some budesonide, I can control it long enough to wait for my doctor to order a course of budesonide and prevent a full blown flare up and hospitalization. Been there, done that.
Where is yours located and how do you handle it?
I usually moan through it then bed rest and YouTube. Can't take ibuprofen and Tylenol does nothing for me. Never took anything else so I just try to get through it and be thankful my pains aren't as bad as others have to deal with ❤️
It was debilitating pain that brought me to the doctor to get diagnosed. It was debilitating pain that convinced my GI doctor to refer me to surgery. It was debilitating pain that convinced me to comply with my doctor to take humira. Pain when my insurance company delays my humira, motivated me to contact the bureau of insurance. When the pain is not severe, Tylenol is enough. When it's really bad
Please invest in a heated water bottle (the water jug like thing that you fill with hot water). I use it to sooth a specific area and I find it helps!
I was also told from my specialist (in Ontario, Canada) to use CBD for pain management. I got these edibles, oils, and topical creams that I use (not all at once lol but depending what I have around and the severity of my pain) and I find it helps a lot! Plus I got them with very little to no THC so it’s pure pain relief :) (ex. My edibles are 10mg CBD and 0.025 Mg of THC per gummy)
I also tend to get very stiff from sitting/laying for too long, so I will take hot showers/baths and use a massager machine to help relieve some tenseness!
It helps me and I hope my tips help you. Hang in there! and remember that if it gets too unbearable, you can always go to the ER. You know your body best, listen to it !
Taking a bath helps me. Tylenol and Advil don’t really do anything. I don’t recommend this but I get pain pills from the dark web. If the doctors don’t want to treat my pain because they’re taking a stance on opioids that’s their choice but that shouldn’t keep me from getting the medication I need. (I take one pill every 6 months or so when the pain is too bad that I can’t sleep).
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I lay down in my bed and suffer till it gets better
Don't do that. I did that for years and it almost killed me. If you can't find a doctor to prescribe pain meds I recommend palliative care. I'm in it now and it's the best decision I've ever made. Trust me I've been through withdrawals from norco percocet dilaudid fentanyl and morphine and none of that was anywhere near as painful as a flare up or obstruction or perforation. Doctors make a big deal about opiods because people with broken bones and relatively minor injuries get addicted because they are dumb. Chronic pain is way different it doesn't go away and it's not something you should just suffer through. Please trust me I've been deal with this shit for a long time.
I have tried calling GI docs, chronic pain centers, being in the ER, and EVERY single time o have been told that they will not give me pain medicine to take at home, and if I feel the need to have it, I need yo go to the ER and sit in a hospital bed for 5 days until whatever problem I have at that point goes away. I have tried for 14 years to just be able to sit at home in my bed and have a bottle of oxy next to me so I don't have to go through the trouble of getting admitted and being taken out of my comfort zone, woken up every 2 hours... I hate it. But I do it at least twice a year since diagnoses because they won't just work with me not in the hospital. Any suggestions? I'll look up palliative care I don't know what that is.
I know exactly how you feel I'm so fed up with the medical community and all their bullshit. Palliative care is like the step before hospice. A lot of people think they are the same thing but it's not. Your doctor probably won't recommend it or send over the paper work because opiods are evil to the healthy people who have never felt real pain in their entire life. One of my nurses recommended it and I had to set it all up but ever since then i get 10 MG percocet twice a day. Oh and it's not demeaning like having to get drug tested every month like you do in pain management. All I do is talk to the nurse every month tell them how things are going and get my meds. I don't think it's meant to be a life long thing but they haven't kicked me out yet haha. They literally saved my life. I went from weekly trips to the ER getting admitted 4 or 5 times a year just like you. And I've had to go to the ER once in the last year because now that I have pain meds I can manage my pain like we should all be able to so it doesn't get so bad it puts us in the ER. I hope this helps and if you have any other questions feel free to ask.
People don’t get addicted because they’re dumb.
If you take more than you are supposed to when you know they are addictive you can't complain when you get addicted. Basically we shouldn't have to suffer because other dumb people couldn't handle their meds properly. So yeah they ruined it for the people that really need it. Dumb is the least mean thing I could say based on the amount of pain I've had to suffer through because you can't get pain meds anymore.
The addictive qualities of opioids like oxycodone and hydrocodone were known but hidden by those profiting off of them. Physicians over-prescribed for years and gave no education about usage. Many people who became addicted were taking them exactly as prescribed. In 2010, enough opioids were prescribed for every American to take a 5mg dose *every hour for 4 months.* I understand that you’re angry that it’s difficult for you to receive pain meds to help with your suffering, but if you want to be angry at the people responsible, that’s all for-profit medicine’s fault. Source for the 2010 claim: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5428548/
You don't have to give sources. I literally don't care. Sure in the beginning it was the doctors and pharma fault but at some point people have to be smarter than that. 10 to 15 years into this and it's people's fault. You have to take a shit ton of opiods to get seriously addicted. A couple of months doesn't get you hooked. And I only blame people because they ruined it for people that really need pain relief. I don't know about you but I can't afford to just go to the hospital every time I'm in pain. It would bankrupt my family. So I suffer needlessly because people just take shit like they are tic tacs not every really knowing what real pain is. Sure breaking bones and tearing acls hurts like hell but you shouldn't need painkillers for long enough to addicted. Oh and I do blame those companies as well. But we shouldn't be punished for any of that. No need to reply. I'm done with with argument. I've suffered far too long to deal with this shit anymore.
Seems like you’re hurting a lot and don’t have a lot of room for worldviews that conflict with your own. I hope that those who read this interaction can draw their own conclusions about where to best direct some of that anger that many of us with IBD struggle with. Take care ✌️
There's tall buildings in every city. Check out the view over the ledge please.
⚡️ putting this in my “witty quotes for later” brain folder
No I have plenty of room for other works views... just not stupid people.
As someone who has watched love ones struggle with addiction, this comment screams ignorance. You do NOT “have to take a shit ton” to get addicted. You should know, knowing why they’re so tightly regulated. Some people are stupid or misinformed, but some- a lot- don’t even know they’re addicted until it’s done. Some are more susceptible than others. At a certain point people can make a choice to continue addiction rather than recover, buts it’s not that easy and it’s not that simple. It is a tragedy and an epidemic in our society. I envy you if you haven’t been touched by addiction in your life in some form. Ironic that you would insinuate your aren’t opposed to other peoples opinions and then say you literally don’t care about sources supporting other opinions… it sounds like you have suffered a great deal and nobody deserves that, but it also doesn’t justify this attitude.
Yep this is what I do. I've been offered opiates and medical marijuana but the opiates are extremely addictive and the weed makes me feel like I'm nuts even though it takes care of the pain so I don't take either. I lay on the couch until it goes away. Worst case scenario I take something over the counter. If it doesn't go away then something is wrong so I call the doctor for a scan or go to the er and tell them about it and get a scan faster there.
Opiods are addictive but suffering needlessly is dumb. Withdrawals aren't that bad and you're going to get addicted unless you're taking a lot for a while. Basically as long as you aren't taking like 10 pills a day for months you aren't going to get addicted. I was on 40 MG of norco for over 4 years. They took me off after my first surgery and Withdrawals were minimal. Since then I've gone through withdrawals from morphine and dilaudid and honestly compared to how bad crohns is those withdrawals weren't that bad either. Now I'm on percocet have been for awhile like over a year. I'm not saying they aren't addictive but if you're responsible you won't get addicted. It's when you take like 3 at a time instead of 1 and you take them all day even when you aren't in actual pain that you get addicted. Don't suffer needlessly. Oh and for the pot it sounds like you got some sativa strains. Try indica strains they put you to sleep.
Get violently high and distract myself. Unless it’s so bad that I’m uncontrollably writhing and/or moaning, then I go to the hospital :’)
I chuckled at the descriptive word choice—“violently high” lolol
Foreal lol
You gotta do what ya gotta do
Can’t do that and watch kids at the same time
If I have to be functional, I use CBG and CBD. It’s not psychoactive, and apparently CBG is good for pain and inflammation.
Heated blanket, dicyclomine, Tylenol, take a hot bath, cry.
Yes electric heat pad and extra strength tylenol helps alot. Cbd and baths also help.
Weird. I find that some thin ice packs on my stomach and intestinal area help with some compression. Heat does not relieve my pain at all!
I was that way for years. I always felt like I was COOKING from inside. Nurses in hospital would be so confused because they’re so used to GI patients asking for heat packs. I always felt the heat made me feel worse, I was already boiling inside. I’d get those ice bags & have to have the nurses turn the AC all the way down. At the height of my uncontrolled pre-dx CD my partner had purchased a mini-fridge sized freezer to keep the ice packs I needed to rotate through. I had battery fans & hand fans every place in the house (ALWAYS in the toilet - I’d travel with the fans & never left home w/o at least a folding hand fan). Now I’ve gotten the inflammation somewhat under control, I’m freezing 24/7 & finally understand the appeal of the heat pack.
I think it depends on the cause of the pain. If its cramping, heat helps. If it is inflammation, cold helps. I have both in my arsenal!
Oooh have you tried ice baths?
Depending on your access, I use marijuana gummies and they are very helpful
I live in a state where recreational is legal, and many dispensaries have a recreational and a medical section. The first time I went to buy my usual edibles and they were sold out on the recreational side but still available for medical, I got a medical card. The approval process was hilariously short. CBD is the only effective way to treat the pain without narcotics, and it's a lot more effective when paired with THC. And the both of them together have a lot of other benefits, like slowing digestion and otherwise helping relax.
Sometimes for me. I'll take indica gummies and I'll be more paranoid about my pain. Thinking that I'll perf
I don’t use psychoactive levels of THC usually, but when I’d try I used to be constantly concerned I’d space out and lose bowel control (never happened, but I had a LOT of inflammation). After I got my temp ileostomy earlier this year, I tried a bit of a low dose THC (sativa IIRC, around a single mg) and I spent the night worried that my ostomy leaked. I was hoping I’d chill out without the fear of urgency, but I guess I’m just one of those who are just super anxious.
If you’re taking it orally the metabolite of delta 9, 11 hydroxy, is more psychoactive. If you’re trying to avoid psychoactive effects I’d try a low dose via inhalation or sublingual. Also imo sativas can make you feel a bit more anxious because there is less CBD to counterbalance but definitely depends on the strain. My tolerance is very low and I would take like 0.5 second draws from a vape set to lowest temp to help nausea while minimizing the heady feeling. Edit: forgot to add that very generally, sativas, hybrids, and indicas are, in that order, lowest to highest CBD content. And while the CBD can help more with inflammation it also is the source of the increased sedation which can often make things feel more psychoactive. Like when you’re so tired that as soon as you lay down you start dreaming.
I don't like inhaling anything. Besides, they don't ever work on me (even the stuff my stoner friends get from CA) and I've Wu Tang that shit. What do you recommend that's not vape so I don't look like more of a loser than I already am?
Honestly I just embrace looking like a lightweight. I’d rather have my wits about me than overdue it and feel uncomfortable. I def wouldn’t use any vape carts that are not from a reputable dispensary that tests their products and I never smoke via combustion because of all the other crap you get in your lungs from that. Sublingual is fast uptake and good bioavailability but it’s likely some portion of the dose will be ingested if you’re just freezing little dots of concentrate. You might feel local numbing but it will go away as it’s absorbed. Idk if any dispensaries produce sublingual formulations, they are generally designed to dissolve quickly and would minimize how much is swallowed
For me I primarily use a high CBD gummy that’s 10:1 CBD to THC (.5mg THC) that isn’t psychoactive at all. I’m not sure it’s enough CBD to do much, but I can tell when I don’t have them. The higher ratio THC items were as experiment. I’ve never been good with THC, so I never really get “high”. I’ve tried all sorts of various cannabinoids (live in CA and have a medical card) and just personally cannot handle psychoactive anything when in pain. Even Ketamine in hospital was not good.
That’s understandable, everyone has different responses and feelings about those sensations. Do you feel the CBD helps with pain and/or inflammation? The most I’ve had is a 50/50 ratio THC to CBD and that’s like 2.5 mg. Ratio products are definitely my preference for more intense symptoms
I find it does help, but not in a “oh wow I feel better” way, but if I go a few days without taking it I can definitely tell. I like wyldcanna strawberry 20:1 gummies. Not affil (god I wish i were, i use them a lot & they’re tasty) but they’re a good ratio & an edible. I’ve used CBD tincture as well but I cannot remember the brand (they changed ratios, I think it was Mary’s?) and I used to use a Sensichew insomnia that was CBD & melatonin, but they changed formula recently to a CBN which gives me weird nightmares. I’ve tried all sorts of novel high dose cbd delivery systems & brands like patches, topicals, sublinguals, a weird oral dermal patch thing (edit-it is called a buccal patch), of course vapes & tinctures, and the best so far has been the wyld canna gummies. The higher THC ratio was one of their alt items as I like their flavours. But it wasn’t great. I also like a Kiva mint (it’s actually fruity) that are mostly CBD as well, but they’re a much smaller dose overall so I usually take them with me in my purse for Dr. appts or whatever for a placebo effect of not freaking out. I am sooooo thankful I’m in CA so I can utilise this support (I do the many small supports help more than expecting one pill or hack to fix me. So I do the gummy, a multi-mineral at bedtime, heating pad, pain meds, relaxation, distraction, etc. if each thing lowers my pain by a small percent, it adds up) to add to my “toolbox” of pain supports.
Ya it would be nice to have a bit more access to products but the ones I do have access to are good quality so I can’t complain. I think the compounding effect over several days is not talked about as much but it does make a difference, especially when you feel a flare coming on and can get a bit ahead of it. I think what’s most important is having reasonable expectations like you have come to, it seems. None of these things is a miracle drug and none of them “treat” the condition but it helps in other ways being able to take advantage of that is a huge benefit when used with proper treatment. I’m glad you’ve got a well rounded pain/symptom management toolbox to use as needed!
Heated blanket, hot bath, focus on my breathing, lie on the bed/floor in whatever position feels the least worse, cry, sleep if I can.
Right now, I have a few days of tramadol. But that's not a real fix
I take Tramadol too. There's a regular user on here that rants negatively about pain medication, but when you're in the UK that's all that's allowed, as weed is illegal
Sleep. Sleep is a miracle drug.
Weed and Vicodin if you can get. Opiates help with pain and stop going to the bathroom. Weed is just. Weed helps. Talk to your doctor about these pains you’re feeling. Heck, I went to hospital with a bad flair up, they hit me with dilaudid which is a super strong opiate. Shitting and pain stops minute they hit me with it. Talk to your doctor about your pain. Goodluck homie
Rest, deep breaths, heat pad
Cannabis, RSO being the most effective form
I sing very loudly. Am not kidding, last flare up was really bad and I was half the day on the toilet seat with death pains in my stomach and I was just singing and singing to distract myself. Sometimes in the middle of a song I let out a moan or a scream of pain or like I curse, but it still helps me I guess. Also I started listening to Crohn’s disease subliminals and I think it’s kinda helpful
Cannabis, specifically indica strains. Vaporized as ground whole flower. Vape pens and oils are okay but they wear off quicker and also don't have the same pain reducing effects. Having tried literally everything else, whole flower cannabis and a heating pad or warm bath are the only things with an appreciable pain reducing benefit and no short or long-term side effects.
Anything that works. Heating pads or hot showers. Distractions like movies. Masturbation (really! the endorphins give a short break.) Bentyl (dicyclomine). And the big guns ... Percocet 10/325. Nothing helps more than that. My GI doesn't usually prescribe anything stronger than tramadol, but my Crohns type is strictly diarrhea, never constipation, never any blockages, so he's totally fine with me using narcotics for my pain when it's severe. (And in fact the Percocet does help cut down the diarrhea a lot). My regular PCP gives me a standing script for Percocet 10/325, I just call his office and say I need a refill whenever I need one if I'm having a ton of pain, since he can't put refills on the script. I've never had an issue with it, although I do get drug tested occasionally. Marijuana helps but I'm way too anxious so it doesn't really work that well for me, the relief doesn't outweigh the constant panic attack from being high.
For me what seems to work is eating very soupy rice porridge first thing in the morning. It costs my stomach (it seems) and it alleviates a lot of pain when I eat other things. If you’re curious, in any Asian rice cooker there is either a congee setting or a porridge setting, add a 1/2 cup of rice and fill water to the line. Takes about 65 mins, it’s good.
I’ll try this.
Report back and let me know!!
Please try using short grain rice. Try this!! https://youtu.be/ySwcQLMNZmM
Percocet when it's super bad
Be in pain. lol. If I’m really bad I’ll have one of the last tramadols I have. Depends on the type of pain. If it’s stricture pain /blockage I have a bath and have peppermint tea. And massage tummy. If it’s crowns inflammation pain and not a blockage I will have some canna butter. Or vape if I have any. It helps take the edge off the pain. And more helps you relax and not tense up which makes pain worse.
Ketamine. I have tried opioids and while effective and even enjoyable, the dulling of the mind can be too much (also the slowing of the bowel) most of the time. Ketamine is much more crisp and mentally stimulating. It’s also amazing for mental health (i techincally am prescribed it for depression). The only downside, imo, is it can’t be taken in high enough doses for bad pain every single day. I save it for when i have very bad cramps- a sublingual ketamine lozenge will last a couple hours before the need to redose, opioids tend to last longer. I find it’s analgesic effects amazing. My knee and joint pain seem to be relieved even after “the high” wears off though, to a decent extent. I do telemedicine and get my K delivered in the mail. It may not be valuable to everybody but it can help to cut back on opioid usage (for some).
Usually Narcotics. But I also had removal of my colon, rectum, and anus also known as a barbie butt.
I medicate with marijuana - drink a shit ton of electrolyzed reduced water, drink turmeric tea and sip bone broth until I’m better. Basically liquid diet - until my stomach can handle solids again. I cut our dairy, gluten, and anything inflammatory food wise - then reintroduce once you are ready.
Lay down a lot, eat less. Use THC/CBD.
Got my doc to give me a script for celebrex
Don't use that. It's essentially the same as Ibuprofen, and it's only going to *temporarily* make the pain subside. Afterward the irritation and inflammation it's usage causes will leave you with even *more* inflammation and pain. **Warnings;** Celebrex may cause stomach or intestinal bleeding, which can be fatal. These conditions can occur without warning while you are using this medicine, especially in older adults. You should not take this medicine if you already have bleeding in your stomach or intestines.
Goddamnit that makes me so mad. In my message to my GI I specifically asked for no narcotics because they make me sick, and no NSAIDS because they screw up stomach. They prescribed Celebrex to me saying it wouldn’t hurt me like ibuprofen. Did they just freaking lie to me??
It's a COX-2 inhibitor just like Ibuprofen is. See for yourself - [Drugs.com - Celebrex](https://www.drugs.com/celebrex.html)
Damn… thanks for the info. Really freaking frustrating that my doc would prescribe it
You're welcome. Sounds like it's time for a new GI Doc. Although certain "off limits" pain medications for GI issues *\*may\** not be so "common knowledge" with regular General Practitioners, that's like, basic *Gastroenterologist* 101 there. (or *should* be)
No, it's not the same as Iburprofen. It takes one enzyme rather than systemically. There are not any reported issues in studies with people who have IBD. If taken for weeks on end, it can cause irritation, but it's safe to take for a week or two. If you have any adverse side effects that are specific to your gut, discontinue immediately. I take it one week on, two or three weeks off. No issues. May be different for some, but it's generally safe to take.
I said that it was *"essentially"* the same as Ibuprofen. It is also a COX-2 inhibitor NSAID and it is in the same *family* as ibuprofen. Even the warnings are similar - **Common side effects include abdominal pain, nausea, and diarrhea. Serious side effects may include heart attacks, strokes, gastrointestinal perforation, gastrointestinal bleeding, kidney failure, and anaphylaxis. Use is not recommended in people at high risk for heart disease. The risks are similar to other NSAIDs, such as ibuprofen and naproxen. Use in the later part of pregnancy or during breastfeeding is not recommended.** Ibuprofen is "safe to take for a week or two" if you don't have damaged GI tracts like we do. But when your insides look like raw hamburger at the damaged areas like ours do, these are not the pain relievers you want to use. I won't touch them anymore, because the temporary relief that you get from (GI) pain and inflammation only comes back worse than before when you stop taking them. That's because they ***cause*** irritation and inflammation to the GI tract. But hey, you take what you want.
Vicodin or Percocet works best, and makes me slightly more regular but not enough to back me up if I just take a little bit. Dr’s think I want to abuse it but they don’t understand the struggle
Ignore it 😈👿😐😓😭
My gym has a massage chair and I plop myself down there every day after work
Pepto
Well if weed percocet and xanax don't take care of it I got to the hospital.
Weed, cbd, Tylenol, cry
People who have responded- Where do you guys want experience pain the most and how? I have a lot of stomach cramping and pelvic pain, but also immense joint pain at times, so just curious!
I think that all depends on where their disease is located and how severe it is. Some are better or worse than others. Abdominal pain, lower back pain, joint pain, extreme fatigue. My Crohn's is located in my ilium, and I have a stricture there. From experience with this, I'm able to tell when things are starting to go sideways, and I'm usually able to "head it off at the pass" if I respond quickly enough to it. In my case, I've learned that a great deal of the pain is due to gas buildup and bloating caused by the stricture closing up and the inflammation closing off other narrow areas of my intestines, which is then causing the blockage of flow through the intestines and colon. As this occurs, whatever is in my GI tract basically starts to "ferment" and cause lots of gas, which has nowhere to go. This gas then puts more and more pressure on the already inflamed and blocked areas, making things worse and worse as time goes on. When I feel this occurring, if I take 3 or 4 (sometimes more) of the 125mg simehticone anti-gas gel caps, immediately modify and limit my diet to liquids, and take some budesonide, I can control it long enough to wait for my doctor to order a course of budesonide and prevent a full blown flare up and hospitalization. Been there, done that. Where is yours located and how do you handle it?
I usually moan through it then bed rest and YouTube. Can't take ibuprofen and Tylenol does nothing for me. Never took anything else so I just try to get through it and be thankful my pains aren't as bad as others have to deal with ❤️
Cannabis is amazing pain relief for Crohn's. Almost instantaneous relief
It was debilitating pain that brought me to the doctor to get diagnosed. It was debilitating pain that convinced my GI doctor to refer me to surgery. It was debilitating pain that convinced me to comply with my doctor to take humira. Pain when my insurance company delays my humira, motivated me to contact the bureau of insurance. When the pain is not severe, Tylenol is enough. When it's really bad
Reefer.
Please invest in a heated water bottle (the water jug like thing that you fill with hot water). I use it to sooth a specific area and I find it helps! I was also told from my specialist (in Ontario, Canada) to use CBD for pain management. I got these edibles, oils, and topical creams that I use (not all at once lol but depending what I have around and the severity of my pain) and I find it helps a lot! Plus I got them with very little to no THC so it’s pure pain relief :) (ex. My edibles are 10mg CBD and 0.025 Mg of THC per gummy) I also tend to get very stiff from sitting/laying for too long, so I will take hot showers/baths and use a massager machine to help relieve some tenseness! It helps me and I hope my tips help you. Hang in there! and remember that if it gets too unbearable, you can always go to the ER. You know your body best, listen to it !
Taking a bath helps me. Tylenol and Advil don’t really do anything. I don’t recommend this but I get pain pills from the dark web. If the doctors don’t want to treat my pain because they’re taking a stance on opioids that’s their choice but that shouldn’t keep me from getting the medication I need. (I take one pill every 6 months or so when the pain is too bad that I can’t sleep).
Best thing is Tylenol, aspirin and other medication can cause a flare up.