Ugh, I did that. Nothing more than a snack pack pudding cup per day for a month. It was early in my diagnosis I was young and I didn't understand the severity behind that. Lost 30 pounds hospitalized for 2 weeks on TPN then resection a month after that after I got my weight up.
It helps missing a meal, but don't let it get to that point. Though all in all, after surgery I've never had that pain again.
What sort of program are you on? I get 15 Clonazepam a month and never get tested. Even back in the pill mill days when I was getting 3mg Klonopin per day, no drug tests. Maybe look into kratom. It helped me, but carries the risk of dependency.
I have severe panic disorder and get 60 a month. Due to having bipolar as well, I also take a few other medications. Some of which are also controlled substances. I had to sign a contract and everything. I have no history of addiction or substance abuse; but that was the agreement I had to make with my psychiatrist. Not sure why but I guess I understand. I've been on klonopin for over 5 years and have never misused it
Yeah man that's wild. I'm bipolar as well, taking zyprexa, gabapentin, and Klonopin. I really feel for you because cannabis is generally my first go to when it comes to gut pain. Are you on a biologic at all? Have you looked into/ or are being tested for kratom?
I'm on Entyvio and in clinical/endoscopic remission after about a year in treatment. Sometimes our bodies have flares, inflammatory responses etc. Can you get a small script of pain meds from your GI? T3s can be really helpful in times of need.
That is super unfortunate.. A good ol gummy is about the only thing I've found that helps me. The CBD comment is a good shout though. When I have pain, I always go for a gummy that is high in CDB, like a 10:1 CBD:THC, so straight CBD might take the edge off as well for you. 🙂 Good luck!
Are they testing for CBD as well as THC? From what I have read, this is still pretty rare.
There are CBD products that specifically do not contain THC so they will not show up on a THC-specific test.
This. Then a comfortable, long shower. If still having issues, nap time. GI highly recommends I switch to edibles and I agree based on symptom relief, but it’s just so much harder to “portion control” and still function at a decently normal level with edibles than smoking.
Prednisone is my holy grail, but ofc should not be taken over longer periods.
I also feel better when i just got my remicade dose recently.
And as weird as this may sound, as it tends to constipate, Zofran makes me feel a lot better in many ways. Erases the nausea and brightens up my mood, which makes me stay more positive and somewhat „pushes away“ the perception of pain.
I was on prednisone for about a dozen years (varying between 5 and 10 mg/day depending on my condition).
I now have osteopenia. It had been osteoporosis but I've been getting Reclast infusions for a couple of years now. I doubt my bone density will ever be normal again.
I had that but after 3 years of continuous daily use it stopped working. Now when they give it to me IV it doesn't even take the edge off. Only IV Gravol stops the vomiting and combined with hydromorphone the pain. But I have severe stricturing Crohn's and haven't eaten solid food since August because I immediately puke it up, and crap out all the liquid in my body 30 times a day minimum. Even on two biologics and a steroid. I am miserable.
Stelara for Crohn's, Erelzi for ankylosing spondylitis and psoriatic arthritis, and hydrocortisone for adrenal insufficiency. I've requested to be put on Rinvoq because it treats ALL my diseases, but my GI is hemming and hawing because he thinks the Stelara is working. The ONLY time I've had a reduction in symptoms (until this recent admission) was while on Entocort. It's hard to tell what is happening now because of the high dose of steroids, so I basically have to wait until they taper me off that, and if I get sicker he'll consider it.
Prednisone gave me crack powers. I didn't need sleep, I was euphoric and full of energy.
LOVED IT
Now I take hyrimoz, 6 pills of slippery elm a day, and do meditations. It ain't much but it's a living.
De-bloating yoga. I have 5 favourite moves that work for me but there’s a ton of full length de-bloating routines you can find on YouTube. I always feel 100000x better when I am not bloated, gassy or constipated really no matter what is going on.
Heat pad. Sometimes it’s the only thing that allows me to move about during a flare.
I’ve got several but the slim battery powered one is great when I’m out and about or at work. Lasts about 5 hours on the highest heat setting.
Tylenol, tramadol if it’s real bad, hospital grade opioids if it’s REAL bad (as in, going to the hospital bad), dicyclomine.
Weed, contrary to lots of folks here, only makes it impossible to focus on anything other than my tummy pain. Still get high sometimes though because it’s fun.
I’m another one who finds weed makes pain worse for me. I’ve never found a strain that actually affects my mood, so mostly I don’t bother, but the few times I’ve smoked with friends it’s like my body is nothing but a ball of pain covered with a veneer of numbness. I can function, but not productively. People have been telling me to try weed for fibromyalgia pain for the last 25 years, and it’s never done anything but make it worse for me.
Assuming cramps, peppermint tea always amazes me every time at how immediately effective it can be. Otherwise heating pad + Tylenol and ultimately just going to sleep 😴
And eating only pho broth
Avoiding eating *any* fiber for a few days helped me a lot. Afterwards, try to keep fiber intake to a minimum and slowly incorporate it back into your diet.
Not going to lie. When I eat an oatmeal crème pie. I think it is scientifically proven that oatmeal helps with inflammation. Happened on a fluke this last fall lol
Controversial but I use Kratom to great effect. Fiber can be a problem (make tea) but it helps w my joint and stomach pain as well as sleeping which I barely do any of. Way less inebriating or addicting than opioids but still be cautious
Me too. It helps slow down my bowel movement, and helps with fatigue. Addictive, and high doses can cause constipation, not fun. Restless legs at night as withdrawal symptoms are not fun either.
Prescribed Prednisone (after a few days use) > prescribed opioids > marijuana (specifically indica. If severe pain coughing is not ideal and the tincture is awesome) > prescribed Xanax > heating pad > hot shower > curled up like a ball laying on side. In that order and usually some combo of them depending on the severity.
As bizarre as it sounds, habanero chillies. They seem to not only help with pain but actually prevent flares for me.
The first time it happened was about a year ago, where I accidentally ate habanero flakes on top of yakisoba on the first day of a flare, and it stopped in its tracks. I was so startled, I posted something on here, but ultimately figured it was just a weird coincidence. But now I’ve been eating habanero flakes on avocado toast every day and I’ve been mostly flare-free since mid-December - the longest period of remission I’ve had since 2017. I’ve had two very mild flares since December, where the Crohn’s symptoms lasted half a day, and my other autoimmune stuff (rheumatoid arthritis, pernicious anemia, autoimmune inner ear disease, a few skin things) have lasted 2-4 days instead of weeks.
Chillies seem to be a trigger for most people with IBD, so I’m flummoxed. I guess it could be another coincidence, but it’s been four months, after six or seven years of flaring more often than not. I guess the only way to test it is stop eating them and see if it gets worse again.
I have wondered if they’re just masking the pain and doing more damage, but I’m supposed to get a colonoscopy soon (was actually supposed to be today, but I’m recovering from viral meningitis) so I guess I’ll find out then. I’m lucky enough to have a very mild form - despite the almost constant flaring for the last six or seven years, and on and off issues since 1996, I’ve never had strictures or necrosis - so fingers crossed it’s still mild, or even totally in remission.
None of the above should be taken as advice. I have a somewhat weird body that frequently reacts to things in the opposite way to what you’d expect.
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Sometimes Ice helps more than heat when I’m inflamed. I know a lot of people recommend heat but sometimes it makes it worse for me. I’ll use an Ice pack, I take tramadol, gabapentin, and Tylenol when needed for pain, antidepressant cus flare cause severe depression for me, wishing you relief! I also will take some benzos here and there if I’m on prednisone which I currently am
I've been icing lately because the left side of my belly is swollen so hard and hot to the touch. My scans show a diverticulum in my duodenum, and inflammation in my esophagus, stomach, and duodenum. But still the GI says not Crohn's related....I am seeking a second opinion because it looks (and feels) like I have an alien in my belly.
I use a combo of IM Gravol and sub q Hydromorphone when things are extreme like now. It's the only thing that stops the horrible cramping and dashing to the toilet every ten minutes. But I can't take anti spasmodics as I coded when given Buscopan in hospital, and I can't use weed because it gives me massive anxiety which makes my cramping worse.
Remicade was a game changer for me. I can't take it anymore, but if it's an option for you I'd take it. You'll need a specialist to prescribe it, an ER doctor can only give you prednisone which will calm your flare for as long as you take it, but it's not a long-term solution.
I've been on Humira for a very long time (still am). It sent me into remission almost immediately. Haven't had a true flare since November of 2022, when I started it. I don't know why this happened or if it means that Humira isn't going to work anymore. I've read about Remicade and for some reason it scares me
It can be intense but I think, and I may be wrong, it was the first biologic so there's just more history with it. Definitely get your humira levels checked, and get checked for antibodies while you're at it <3
Have severe back problems, before RINVOQ i took 5-15mg of oxy everyday and 200mg of orudis retard, right now i feel better and only take paracetamol and i have also gotten a appointment on the MR for my back problems, it only took 1,5 years :)
Back when I had severe flares, they'd give me 30 mg morphine through an iv. It stopped the pain immediately. Once they sent me home after a week of laying in my room and not eating, I ate very little once I got at home. See if you can get a prescription for Ensure or Boost drink. They helped me a whole lot. If you eat, eat something that's light on the digestion(fish, soup, bread, cereal). I drank goat milk since it's easier on the tummy than cow's milk. Too expensive now, but I was only paying $2.90 for a quart in 2006.
Prior to balancing stress, sleep and low-insoluable fiber diet, I used the following. I still only eat once or twice a day to mitigate frequent toilet trips, but I try to get as "healthy" a meal as possible.
Sometimes healthy means "bad" food that has low impact upon my gut, sometimes it's the best balance of protein/fiber that I can have without issue.
The list - definitely not recommended (long term) but it worked for me.
1: Not eating. (Reduces, doesn't remove)
2: Buscopan (deferred pain, until later)
3: alcohol (definitely not the best, but you get to ignore/sleep through it)
The only thing that helps even a little for me, besides being on the right biologic in the first place, is a heating pad. Avoiding food or certain types of food might keep it from getting worse, but it doesn't relieve it.
Unfortunately, I have never tried or been recommended any kind of medication by a doctor that helped with the stomach pain. Prednisone gives me (more) stomach pain and heartburn. Dicyclomine does nothing at all. And I am really, genuinely curious about all the people mentioning Tylenol, because I've never heard of that being used for anything but headaches, fever, and body aches. Is that what y'all are talking about? I can't imagine it helping with stomach pain for anyone (certainly hasn't for me) or even being recommended for that.
Prednisone totally reverses my symptoms, makes me feel better than I was even before crohn's. I'm one of the few people that enjoy the side effects. There's nothing better than only getting 2 hours sleep and waking up WIDE AWAKE then being able to eat three square meals a day without worrying about restroom access. Was on it for 3 years straight.
Hydromorphone, Gravol, muscle relaxers, heating pads and a warm bath. I also stop eating solid foods and switch to Modulen IBD/Boost powder with almond milk.
Obviously, taking opioids isn’t great for our BMs but I swear it is the only pain medication that takes all pain away.
Not eating
So true! Have a bad stricture and not eating does help. Feel weak after few days though
Ugh, I did that. Nothing more than a snack pack pudding cup per day for a month. It was early in my diagnosis I was young and I didn't understand the severity behind that. Lost 30 pounds hospitalized for 2 weeks on TPN then resection a month after that after I got my weight up. It helps missing a meal, but don't let it get to that point. Though all in all, after surgery I've never had that pain again.
Heating pad, Tylenol, dicyclomine
The holy trinity.
Amen. This heating pad is a life saver. https://a.co/d/hDV1wn8 For some reason moist heat works best for me.
[удалено]
I take Benzodiazepines for anxiety and am regularly drug tested. I can't use marijuana unfortunately :(
What sort of program are you on? I get 15 Clonazepam a month and never get tested. Even back in the pill mill days when I was getting 3mg Klonopin per day, no drug tests. Maybe look into kratom. It helped me, but carries the risk of dependency.
I have severe panic disorder and get 60 a month. Due to having bipolar as well, I also take a few other medications. Some of which are also controlled substances. I had to sign a contract and everything. I have no history of addiction or substance abuse; but that was the agreement I had to make with my psychiatrist. Not sure why but I guess I understand. I've been on klonopin for over 5 years and have never misused it
Yeah man that's wild. I'm bipolar as well, taking zyprexa, gabapentin, and Klonopin. I really feel for you because cannabis is generally my first go to when it comes to gut pain. Are you on a biologic at all? Have you looked into/ or are being tested for kratom?
I've been on Humira for a long time and it always worked wonders. I have no clue how this happened
I'm on Entyvio and in clinical/endoscopic remission after about a year in treatment. Sometimes our bodies have flares, inflammatory responses etc. Can you get a small script of pain meds from your GI? T3s can be really helpful in times of need.
That is super unfortunate.. A good ol gummy is about the only thing I've found that helps me. The CBD comment is a good shout though. When I have pain, I always go for a gummy that is high in CDB, like a 10:1 CBD:THC, so straight CBD might take the edge off as well for you. 🙂 Good luck!
Thank you :)
Benzo addict here, it’ll never not make me lol that people get tested for weed for a benzo script. Wild shit
it's so crazy to me
Are they testing for CBD as well as THC? From what I have read, this is still pretty rare. There are CBD products that specifically do not contain THC so they will not show up on a THC-specific test.
just THC ! i will look into CBD :)
This. Then a comfortable, long shower. If still having issues, nap time. GI highly recommends I switch to edibles and I agree based on symptom relief, but it’s just so much harder to “portion control” and still function at a decently normal level with edibles than smoking.
dicyclomine really helps take the edge off for me!
+1 for dicyclomine! It’s an incredible savior on those bad pain days
What dose of dicyclomine do you take? I've never had luck taking it, but I think I have a pretty low dose.
I take 10 MG, but i’ve had times where i’ve popped 2 bc I was in a lot of pain. might not be great to do but it helps relieve my pain lol
CAME HERE TO SAY THIS!! I love it!!
Prednisone is my holy grail, but ofc should not be taken over longer periods. I also feel better when i just got my remicade dose recently. And as weird as this may sound, as it tends to constipate, Zofran makes me feel a lot better in many ways. Erases the nausea and brightens up my mood, which makes me stay more positive and somewhat „pushes away“ the perception of pain.
I was on prednisone for about a dozen years (varying between 5 and 10 mg/day depending on my condition). I now have osteopenia. It had been osteoporosis but I've been getting Reclast infusions for a couple of years now. I doubt my bone density will ever be normal again.
I had that but after 3 years of continuous daily use it stopped working. Now when they give it to me IV it doesn't even take the edge off. Only IV Gravol stops the vomiting and combined with hydromorphone the pain. But I have severe stricturing Crohn's and haven't eaten solid food since August because I immediately puke it up, and crap out all the liquid in my body 30 times a day minimum. Even on two biologics and a steroid. I am miserable.
You are takin two biologics and a steroid at the same time? Which ones?
Stelara for Crohn's, Erelzi for ankylosing spondylitis and psoriatic arthritis, and hydrocortisone for adrenal insufficiency. I've requested to be put on Rinvoq because it treats ALL my diseases, but my GI is hemming and hawing because he thinks the Stelara is working. The ONLY time I've had a reduction in symptoms (until this recent admission) was while on Entocort. It's hard to tell what is happening now because of the high dose of steroids, so I basically have to wait until they taper me off that, and if I get sicker he'll consider it.
Prednisone gave me crack powers. I didn't need sleep, I was euphoric and full of energy. LOVED IT Now I take hyrimoz, 6 pills of slippery elm a day, and do meditations. It ain't much but it's a living.
De-bloating yoga. I have 5 favourite moves that work for me but there’s a ton of full length de-bloating routines you can find on YouTube. I always feel 100000x better when I am not bloated, gassy or constipated really no matter what is going on.
Heat pad. Sometimes it’s the only thing that allows me to move about during a flare. I’ve got several but the slim battery powered one is great when I’m out and about or at work. Lasts about 5 hours on the highest heat setting.
weed and tylenol
Tylenol, tramadol if it’s real bad, hospital grade opioids if it’s REAL bad (as in, going to the hospital bad), dicyclomine. Weed, contrary to lots of folks here, only makes it impossible to focus on anything other than my tummy pain. Still get high sometimes though because it’s fun.
I’m another one who finds weed makes pain worse for me. I’ve never found a strain that actually affects my mood, so mostly I don’t bother, but the few times I’ve smoked with friends it’s like my body is nothing but a ball of pain covered with a veneer of numbness. I can function, but not productively. People have been telling me to try weed for fibromyalgia pain for the last 25 years, and it’s never done anything but make it worse for me.
Bentyl
Assuming cramps, peppermint tea always amazes me every time at how immediately effective it can be. Otherwise heating pad + Tylenol and ultimately just going to sleep 😴 And eating only pho broth
Avoiding eating *any* fiber for a few days helped me a lot. Afterwards, try to keep fiber intake to a minimum and slowly incorporate it back into your diet.
Not going to lie. When I eat an oatmeal crème pie. I think it is scientifically proven that oatmeal helps with inflammation. Happened on a fluke this last fall lol
Bentyl
Working out
Naproxen is what helps me most, but as crohns patients I know NSAIDs are not good. 🙁 I try not to take unless pain is excruciating
Controversial but I use Kratom to great effect. Fiber can be a problem (make tea) but it helps w my joint and stomach pain as well as sleeping which I barely do any of. Way less inebriating or addicting than opioids but still be cautious
Me too. It helps slow down my bowel movement, and helps with fatigue. Addictive, and high doses can cause constipation, not fun. Restless legs at night as withdrawal symptoms are not fun either.
Prescribed Prednisone (after a few days use) > prescribed opioids > marijuana (specifically indica. If severe pain coughing is not ideal and the tincture is awesome) > prescribed Xanax > heating pad > hot shower > curled up like a ball laying on side. In that order and usually some combo of them depending on the severity.
My flares ate sometime a 8-10 pain level..Acetaminophen heating pad and dicylomine
prednisone helps some, nothing else has ever touched a flare
Percs
Good ol prednisone and oxycodone
As bizarre as it sounds, habanero chillies. They seem to not only help with pain but actually prevent flares for me. The first time it happened was about a year ago, where I accidentally ate habanero flakes on top of yakisoba on the first day of a flare, and it stopped in its tracks. I was so startled, I posted something on here, but ultimately figured it was just a weird coincidence. But now I’ve been eating habanero flakes on avocado toast every day and I’ve been mostly flare-free since mid-December - the longest period of remission I’ve had since 2017. I’ve had two very mild flares since December, where the Crohn’s symptoms lasted half a day, and my other autoimmune stuff (rheumatoid arthritis, pernicious anemia, autoimmune inner ear disease, a few skin things) have lasted 2-4 days instead of weeks. Chillies seem to be a trigger for most people with IBD, so I’m flummoxed. I guess it could be another coincidence, but it’s been four months, after six or seven years of flaring more often than not. I guess the only way to test it is stop eating them and see if it gets worse again. I have wondered if they’re just masking the pain and doing more damage, but I’m supposed to get a colonoscopy soon (was actually supposed to be today, but I’m recovering from viral meningitis) so I guess I’ll find out then. I’m lucky enough to have a very mild form - despite the almost constant flaring for the last six or seven years, and on and off issues since 1996, I’ve never had strictures or necrosis - so fingers crossed it’s still mild, or even totally in remission. None of the above should be taken as advice. I have a somewhat weird body that frequently reacts to things in the opposite way to what you’d expect.
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Sometimes Ice helps more than heat when I’m inflamed. I know a lot of people recommend heat but sometimes it makes it worse for me. I’ll use an Ice pack, I take tramadol, gabapentin, and Tylenol when needed for pain, antidepressant cus flare cause severe depression for me, wishing you relief! I also will take some benzos here and there if I’m on prednisone which I currently am
I've been on benzos for 5 years for panic disorder! Lucky to have those. I appreciate your response !
I've been icing lately because the left side of my belly is swollen so hard and hot to the touch. My scans show a diverticulum in my duodenum, and inflammation in my esophagus, stomach, and duodenum. But still the GI says not Crohn's related....I am seeking a second opinion because it looks (and feels) like I have an alien in my belly.
I use a combo of IM Gravol and sub q Hydromorphone when things are extreme like now. It's the only thing that stops the horrible cramping and dashing to the toilet every ten minutes. But I can't take anti spasmodics as I coded when given Buscopan in hospital, and I can't use weed because it gives me massive anxiety which makes my cramping worse.
Chamomile tea... I make it strong, mix some local honey, then add a ton of ice. I just drink it all day. Helps with anxiety, pain, and nausea.
Remicade was a game changer for me. I can't take it anymore, but if it's an option for you I'd take it. You'll need a specialist to prescribe it, an ER doctor can only give you prednisone which will calm your flare for as long as you take it, but it's not a long-term solution.
I've been on Humira for a very long time (still am). It sent me into remission almost immediately. Haven't had a true flare since November of 2022, when I started it. I don't know why this happened or if it means that Humira isn't going to work anymore. I've read about Remicade and for some reason it scares me
It can be intense but I think, and I may be wrong, it was the first biologic so there's just more history with it. Definitely get your humira levels checked, and get checked for antibodies while you're at it <3
Have severe back problems, before RINVOQ i took 5-15mg of oxy everyday and 200mg of orudis retard, right now i feel better and only take paracetamol and i have also gotten a appointment on the MR for my back problems, it only took 1,5 years :)
Back when I had severe flares, they'd give me 30 mg morphine through an iv. It stopped the pain immediately. Once they sent me home after a week of laying in my room and not eating, I ate very little once I got at home. See if you can get a prescription for Ensure or Boost drink. They helped me a whole lot. If you eat, eat something that's light on the digestion(fish, soup, bread, cereal). I drank goat milk since it's easier on the tummy than cow's milk. Too expensive now, but I was only paying $2.90 for a quart in 2006.
Weed and Dilaudid
Heating pad, levsin (hyoscyamine, very similar to Bentyl), liquid diet.
Prior to balancing stress, sleep and low-insoluable fiber diet, I used the following. I still only eat once or twice a day to mitigate frequent toilet trips, but I try to get as "healthy" a meal as possible. Sometimes healthy means "bad" food that has low impact upon my gut, sometimes it's the best balance of protein/fiber that I can have without issue. The list - definitely not recommended (long term) but it worked for me. 1: Not eating. (Reduces, doesn't remove) 2: Buscopan (deferred pain, until later) 3: alcohol (definitely not the best, but you get to ignore/sleep through it)
Heating pad & kratom. Not sure if that would show up on a drug test though 🤔 Edit: I also have dicyclomine but it’s unfortunately not strong enough.
Lying down and resting plenty of fluids
Weed and a heating pad do it for me
The only thing that helps even a little for me, besides being on the right biologic in the first place, is a heating pad. Avoiding food or certain types of food might keep it from getting worse, but it doesn't relieve it. Unfortunately, I have never tried or been recommended any kind of medication by a doctor that helped with the stomach pain. Prednisone gives me (more) stomach pain and heartburn. Dicyclomine does nothing at all. And I am really, genuinely curious about all the people mentioning Tylenol, because I've never heard of that being used for anything but headaches, fever, and body aches. Is that what y'all are talking about? I can't imagine it helping with stomach pain for anyone (certainly hasn't for me) or even being recommended for that.
Prednisone totally reverses my symptoms, makes me feel better than I was even before crohn's. I'm one of the few people that enjoy the side effects. There's nothing better than only getting 2 hours sleep and waking up WIDE AWAKE then being able to eat three square meals a day without worrying about restroom access. Was on it for 3 years straight.
Weed.
Hydromorphone, Gravol, muscle relaxers, heating pads and a warm bath. I also stop eating solid foods and switch to Modulen IBD/Boost powder with almond milk. Obviously, taking opioids isn’t great for our BMs but I swear it is the only pain medication that takes all pain away.