Crohns Disease 4mg Dilaudid Does Not Work Help!

johnny crohns Says:

Hi everybody I suffer from crohns disease and my levels of pain are off the charts sometimes, it gets real unbearable, I am taking 4mg dilaudid pills 3x a day because I can only afford to see a general doctor, at the moment I have no insurance and paying for prednisone and 6-mp is beyond expensive. My doc won't give me dillys more than 3x a day because he is scared I will get addicted but I take these pills and the pain gets even worse, what am I to do, he told me I'm at a deadend in pain management with him because that's the most he can prescribe, but when I tell him it makes the pain worse he looks at me like I'm crazy but its true it makes it worse.. Has anyone else had a problem with this? What else is there that maybe I can see if he can switch it to? I just want to live a normal life again....being in constant pain I have no appetite, I am an awesome cook and I can't even cook myself a decent plate and eat it. What options do I have when this is the strongest opiate, when I was in the hospital dilaudid IV worked wonders but that goes straight to the viens, but in the pill form I feel worse. Anyone with anyone answers please let me know thank you

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Johnny Crohns Says:

well its beeen about 7 days since i posted this......things have been a little better but the dilauded really doesnt work as it should. i am still in pain from time to time sometimes it gets really bad that i need to take 2 tramadol 50mg's to dull down to the pain to even being tolerable......if anyone has any suggestions or recommendations i greatly appreaciate it. thank you

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Verwon Says:

Very sorry to read of what you are going through.

Have you been given antibiotics for it? They are usually given, when a flare-up occurs.

If you get constipation from the Chron's, then you really have to be careful using the Dilaudid, since it can also cause constipation.

Since you can't afford most other medications, or surgical solutions, the only other thing that you can really do for the problems with Chron's is to be proactive and get it under control, as much as possible.

Such as:

Stop smoking, if you are a smoker.

Make sure you stay hydrated, drink lots of fluids, since dehydration can make it much worse.

Make dietary changes, stay away from foods that cause flare-ups or gastro-intestinal irritation, like spicy foods and foods that cause gas.

Eat small, frequent meals, instead of just a couple of large ones, throughout the day.

You can learn more here:


Does anyone else have any advice to add?

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I feel your pain Says:

Hi Johnny,

Man, seeing your post was scary. I thought maybe I had written it while I was taking my pain medication for my Crohn's and had a memory laps :)

I was diagnosed with Crohn's too about 5 months ago.
Serious flare ups... have been hospitalized 6-7 times (2-7 days at a time) over the past 4 months with pain level ranging from 8-10 hours/days at a time. The doctors have me on 40mg Oxys 3 times a day and 4mg Dilaudid four times a day for break through pain management. Yes, i get constipated and the pain is even worse then. i take Miralax daily and drink lots of water even though it causes me pain too.Some foods bring instant pain such as nutts, salads, chocolate, mexican, all of which are my favorites...Almost didn't make it through the holidays because of the over-eating (chocolate chip cookies), hard candies, friuts, coffee, etc.

The Oxy's sometime compounds my pain but other times they works just fine. The D's in pill form barely work but when i get to level 10 i got to go to the emerg room and they give me 2mg shot of D and the pain is gone for 1-3 hours(depends). This really suxs. My doctor wants me to try a pain patch but I'm scared I want wake up. the pain is intolerable at times...just eating and drinking water/soda can put me in level 7-8 pain at any moment. the doctors say i have a high tolerance to the medications and don't want to increase the dosages so i usually just suffer 30-40% of my day in pain.

I'm on Remicade treatments that suppose to reduce the flare ups's hoping. i'm scheduled for my third treament next week and it's been 6 weeks since I last visited the Hospital so perhaps it's working. Good Luck.

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johnny Says:

I completely understand what you are going through I have had it for 2 yrs now and I lasted a year and 5 months without going to the hospital but recently I have been in and out , the D's do not work when taken orally , which is a bummer I have read on here people snorting them getting much better results , I have alread on making a nasal spray out of the pills, its way safer than snorting,

As for food tolerances I cook for myself havnt had fast food in yrs and I stay away from nuts and things that are really rough and sweet on the intestines.....and constipation I really don't get it,

Remicade I havnt been on and I don't think it is really good you should ask your doc about humira trust me its amazing and u can administer it at home , instead of being in the hospital to get it......

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genesisguru Says:

I suffer from chronic pain due to a motorcycle accident I had 20 years ago. First I suggest going to a pain management clinic they are not afraid to prescibe narcotics. I am on 30mg of methadone 3x a day same dose for six years now, and I can function normally! Good luck and stay postive, oh I almost forgot 270 methadone pills should cost around $40-$50 go to wal mart!

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Vicky Says:

Last week I was stricken with the worst headache I have ever had. I have been in ER twice in three days.
It comes on so strong it puts me to the floor.
I can only sleep about two hours in bed and it comes on again.
The Dilaudid that I receive in ER is the only thing that helps, but only for a short while..
Tests for bacteria and spinal fluid taken to rule out meningitis were negative. CT Scan negative.
I have a prescription for hydrocodon. it only works for an hour and half. I see a neurologist in three days, If I can make it that long.

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john Says:

hay man i have had so many problems lately it seems like two years now and i thought that i was the only one that was like that. i just had to leave the er because i went there because the dilaudid pills just dont work but the i.v from dose and the took me off the i.v and told me it is the same and i told them it does not work and they dont belive me and treat me like a junky my deal lately is the fistulas and they hurt like hell and the only thing that helps is perks every 4 hours. this s**t sucks so bad and to have people that take care of u not understand.but i will tell u one thing that helps some what is weed trust me not so much with pain but it helps ur tummy

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johnny Says:

Due to the fact I have no insurance, the doc who was seeing me free of charge does not want to deal anymore because of the narcotics , so I have been in pain since the middle of january, I have tramadol but that does not do anything I finish a 30 day supply in 15 days . And even when I take them I am still in constant you stated smoking weed it only increases my appetite which is good cuz I barely eat but it just doesn't take the constant pain away it makes it worse believe it or not, and john the dilaudid pills taken orally do not work its a waste really......but its such a shame that doctors can prescribe the medication and know you need it but they won't thinking they might risk they're license.. If you have nothing to be guilty of then why worry? Help the people who need the help...

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mitchell Says:

I have had cd for most of my life. I am 34 and within last 13 months have been in and out of hospital once a week evey month. I am on 4mg of dilaudid for breakthrough pain and a 50mgm fetanyl patch. Taking remicade, pentasa, entocort and zofran. Drs now look at me and say to my hubby that I am slowly killing myself going to er and being on so much pain meds.. but I am in the most pain for the first time ever. I am not addicted, for I dnt have the need to take everyday. Iv dilaudid works best but drs r hesitant on giving it to me bc they think and look at me that I have issues. My gi and pain dr see diff and help me. I don't knw what to do anymre to get better and to avios the constant pain, diarreah and vomiting n all the obstructions I've had... any advice I wld greatly appreciate. Noone in my family seems to understand and look at me like I have an emotional issue or addiction when I have neither. I was diagnosed after surgery and goin to er up to 2-3 times a week wth ptsd for all the bad that happened to me with havin a tumor n first resection wth ileostomy not to mention losing my first hubby in an accident and 2nd hubby cracked n was not there for me when I got sick and turned to drugs.. it hurts to not have support and being made out to be an addict when I knw I dnt bc I don't have the desire to take everyday but gettin off patch did cause wd symptoms. What do I do. My 2nd hubby who trult is an addict tries to make me out as one wth lies and has people feel sorry for them. He just told me that he tlkd to hospital pain dr and that I'm being watched for er visits and hospitalizations and that I might have emotional attatchment to meds n want attention.. wtf. I dnt want to be sick and I'm tired of not being heard and people making me out to be smthng I'm not and that is the truth. Any advice or help I wld love

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johnny Says:

Well mitchell I completely understand what you are going thru, trust me. Being 21 does not help my cause when u need strong pain killers, also having no insurance they won't prescribe me what I need, they just look at you like you have a my family they really don't understand what I go through my mom has insurance and has fybromyalgia (idk how to spell it) well her doctor prescribes tramadol for her and I take that and finish a 30 day supply in less than 15 days and she said I'm addicted to tramadol I'm like wtf and got mad cuz they just don't you have had surgeries, that just leads to even more pain in the long run. Now you said you have a gi and pain management doctor what are you doing in the ER, they should b giving you enough medication for you to not have to go to the ER, also if you are fentanyl patches and your having much more pain they should really do some tests as to why your feeling this way. If I was you I would get off of remicade and switch to humira its much better, and maybe your body is to use to remicade and it no longer works.

Having people by yourside to support you is the one thing that you just can't come by very few people will actually put up with all the things that crohns has to offer. Its hard to find a support system,So you really can't get mad at that its tough but I just try to not focus on it. I try to to get the medication I need to live a normal life. I'm always here and will reply to any questions you may have I'm here to help. GOD BLESS

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johnjohnson Says:

First I am sorry that you are experiencing this in your life. It is not fun and it makes you feel that you are somehow doing something illegal and people are judging you constantly.

Unfortunately there are legitimate people with pain issues that are being mistreated because of a small few that are taking advantage of the system, with this said these people usually have tons of money, can afford to doctor shop, pay big bucks for the script in their name or not and possibly even travel from state to state to have these filled. There are probably other things that I don’t know about that circumvent the legitimate avenues of medication.

The other part is that addiction and dependency are two totally different beasts. Addiction is taking larger doses month to month or using all before your next prescription regardless of the consequences that would be a consequential problems running short. Dependency is taking the same dosage over a period of time month to month knowing and understanding the consequences of taking too much at one time and not doing so and understanding they shouldn’t stop immediately and suddenly. I take several types of medication that is also in this dependency arena one is an anti-depressant, and the other is an anti-seizure, both if stopped immediately would cause issues with my day to day behavior and how I felt each day. They both need to be decreased over a long time period of time decreasing slowly as you do so. Sounds familiar right?

I lived in California and had no problem with amount, dosage, time of the month refilled or if I wanted more excetra; then my problems started when I moved to WV and everything changed. There is such a drug problem there that no GP will prescribe any pain pills and the pain management was forcing you to get off all drugs and use hypnosis for your chronic pain. I am all for taking less if possible but some pain is just really not going to have an effect unless pain drugs are in the pathway for relief. With this new move of mine I was forced to drive to another state 7 hours each way to my old Dr. to get my prescription drugs. I found that long lasting morphine with dilly’s for break out pain worked best. The problem you are in is that your prescription is hitting the number of pills you are taking daily is an issue for your GP. They are scrutinized and are in fear of how it looks especially now with the national climate has changed and depending in which state you live in.

It is the amount (numbers) that you are taking that makes people upset. The long lasting meds is considered something that will not get you high so not considered as much as a problem in the eyes to the power that be but the single doses are something that could be taken and get someone high if you want. Your doctor could prescribe a higher amount but still keep it at the 90 pills count but at 8 mg. If you go to a pain specialist it should be easier and I would ask for a long lasting pain pill with backup for break through pain. The long lasting is very cheap but the dillies are in the $40 range for 90 each 8 mg without insurance.

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josh Says:

i am surrering the same illness you are..and you are verry lucy i am not perscribed anything for my pain..and it is sometimes so severe that I alsmost pass out. and alot of times throw up because od the pain. any suggestions on how you get your dr to perscribe you pain management would be helpful.

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unreal Says:


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Pam Says:

I take dilaudid 4 mg every 4 hours and it took about 8 week to even help but I also take Neurontin 600 mg -3 daily which make the dilaudid work better. Alot of Tynol 750 MG Arthritis formula in horrible times to cut the edge. OH YEA I also have an intraspinal morphine pump implanted. I go 2 a pain specialist ans am on SSDI. Hope it helps...

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Pam Says:

I FOUND HELP WITH RX'S at Partnership for perscription assistance or (888)477-2669 or on They will help but Pfizer will help with Lyrica free if qualify. They provided 4 months at 21,600.00 Zyvox for us free.YES no typo that's 21K. Really thinking about mexico for help if can't find Patient assistance for Talwin and Dilaudid. My pump charge is over $2,000.00 month thank the Lord for Medicare but now hate their GAP period on our RX. Medical is over our monthly income now..

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Karen with CD Says:

Hi Everyone,

My heart goes out to all of you Crohn's Disease sufferers as I too am here at this moment flat on back in bed recovering from a flare and subsequent hospitalization.

I had been taking Humira for about 10 months and was hospitalized twice with high fevers (above 104 degrees and packed in ice this last time for the first three nights)...please be careful with the Humira...I know that my two hospitalizations were caused by the Crohn's and of course my incredibly low immunity due to the Humira plus Prednisone.

In the hospital they switched me to a combo of Remicade plus 60mgs Prednisone plus Diaudid or Hydrocodone/or 2mg doses of Dilaudid as needed for pain (I was on the IV Dilaudid in the hospital, which worked wonders for me) plus 16 Apriso a day, plus I take Gabapentin and Klonopin, which I haven't seen here, and they really help me sleep at night with the Dilaudid.

It is all working to keep me flat on my back, out of the hospital, and out of pain as I await a possible surgery.

I have just finished my second dose of Remicade, which I was switched to in the hospital for the first does and then had a second dose in the doctor's office this week, and if it works, I may not need the surgery, I pray.

I wanted you to know what I am on, and now here are my questions...
Has anyone had fevers like this with Humira?
How did the Remicade work for you?
Does the Dilaudid do anything at all/it worked great in the hospital, but I am not sure why I must take the Gaba plus Klonopin or instead sometimes oxycodone to get that nighttime relief?

I guess I want to hear that the painkillers will work in some form or fashion and that someone has gone from Humira, which didn't work for me and put in me in the hospital with life-threatening fevers/infections twice, and moved to Remicade, which did work, and they didn't have to have surgery.

I am just in my bed, hurting, not wanting to have surgery, and really hoping the Remicade plus prednisone plus pain management will get me over the hump.

Please respond if your story is in any way similar to mine or you have any suggestions while I am waiting this out.

I am scared of surgery and all of these painful and toxic drugs and painkillers....I don't want to live this way.

I would love to know that Remicade has worked for someone who has failed on Humira, and that Dilaudid will get me over the pain hump (I take 2mg doses throughout the day), and that there is hope for us CD sufferers.

My heart goes out to all of you who are suffering with Crohn's. I sometimes think that if the disease doesn't get you, the meds will, or the surgery.

Thanks in advance for any advice you can offer about pain management...moving from Humira to Remicade...alternate therapies...not having surgery...having surgery that bettered your life (although that terrifies me).

All I know is that I can't go back into the hospital with another 104 degree fever, get packed in ice, pumped full of Dilaudid, and then come home and do this again! I am being tortured!

Any advice, encouragement, wisdom would surely be appreciated, and anything I can do to help anyone out there will surely be offered. Thank you, Karen

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johnny Says:

Hey I just read what you posted and I havnt been on here for a long time since my last post well I was in the same situation when I wrote this first post, I to was on the hospital bed but I don't want you to be scared do the surgery. Don't worry I had it done and it helped granted I was in the hospital for a month and three weeks after that but the surgery really helps I am taking humira right now and had only one flare since then. I am currently taking dilaudid 4mg 4x a day but will get off of it and start living a normal life again. Please don't be scared and if you need any help please email me at xxxxxx(a) [1] replace the a with @ .......anymore info I'm glad to help and btw I've had crohns disease for. Years now.... 2 surgerys

[1] Editor's note - In order to protect privacy, we do not allow individuals to post their personal contact information on our discussion threads (except in some very rare cases).

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MikeE Says:

I've had chrohns for 30 years,age 12-42 and never had pain medicines for chron's except recovering from my surergies and ER visits when I had flaepres. Nobody every sent me home with a pain medication beyond the first couple weeks. I think taking pain meds on a regular basis for chron's pain is not a good solution as it can lead to constrictions which you don't want or mask other problems like fistulas or abscesses. You may do more damage by eating more because you aren't in pain until it reaches the terminal ileum. Plus dilaudid is not recommended for patients with problems of the terminal ileum. So my recommendation is to get off the pain meds and try to manage the disease. Then if you have a flare, Then go to the hospital for treatment and determine If diet and prednisone can do the trick or whether surgery is necessary.
And get a friend or two that understands chrohns as well as you to go to the doctor and hospital with you.
Good luck!

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Jessica Says:

I'm so sorry you lost your first hub and then the 2nd couldn't handle it. My current hubby left me mentally when I first got sick to raise out 8 month old son. After we lost everything due to me not providing and the horrible turn in the economy. We decided to go to dinner and he had guilty s#% with me and I wound up pregnant. This is when he turned to drugs, my drugs all my pain meds norcos at which I have a tolerance to and only works for 1hr or so; I switched to the D's and they give me 15 min of the old me and then I zone out for the next 12 hrs with horrible shakes and withdrawal feelings and no sleep for days. We're no homeless and I'm out of my med once again. (the kids are welcome at my in laws but we have to leave before they get home and I'm 29) :( I just want to be able to take care of my family so bad.

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Meppert Says:

I would focus on what is causing the pain. I've had Chron's for 30 years and several surgeries and never needed pain medicine outside of the surgeries. Though at times it sure would have helped!
Have you had a colonoscopy to see what's wrong? I would gues that something is really wrong if you require pain medicine 3x daily. I realize chron's is hell but what are you eating? it seems odd that you eat 3x day and take pain medicine 3x daily. Are you lactose intollerant, eating raw vegetables, large portions, grease/oils. When I get a flare if i eat I go very simple like mashed potatoes, gatorade, pasta no sauce just a little margarine. Also the Prednisone gives you a HUGE appetite. Sometimes it makes me SO hungry my portion size causes me more problems. ALSO, dilaudid dulls the pain so take if AFTER eating so you don't mask pain of over eating. And eat slowly and take breaks. You might need to eat 6 small meals. Man, I know it sucks but the pain medicine really complicates things so I'd try to stay off of it. Good luck!

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