Crohns Disease 4mg Dilaudid Does Not Work Help!
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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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49

My name is Sharon I have chrons diease as well.have you ever had stadol nasal spray it's usually for migraine and or child birth pain but it works well for me it did.

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48

I have to admit that I started using Dilauda's I.V. because I also wanted the relief
That I felt at the hospital! I am keeping it a secret because I don't want to be judged!

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47

Yes it is called hyeralgesia. It happens a lot when people are tolerant to their pain medication. It actually causes the brain to get confused and think it is in more pain than it is. It is the reason many doctors are careful about the opiates they prescribe. It seems like a weird effect but it is scientific. Usually you have to come down off the pain medication for your pain receptors to get back to normal then a some point you can try to reinitiate the pain meds. I know it sounds awful. I don't know how I would survive a day without my pain meds but I have a similar problem to you. When I started taking high dosed of oxycodone it would make my back feel like it was breaking in half and my doctor looked at me the same way yours looked at your, but I happen to be a pharmacist so I was aware of this situation even more so than the doctor. I stopped taking such a high dose for a while then slowly went back up and I'm usually fine now. But sometimes it still happens. Good luck to you. I hope this information helps. But be sure whatever you do to consult your doctor.

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46

Entyvio has helped so tramendiously with the Crohn's. I do get flares sometimes so unbearable. Tylenol doesn't do anything. My GI has told me to stay away from ibuprofen and aspirin since it's hard on the stomach. A year later he says it's okay? But even then, those don't work.

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45

Methadone/metadol is used for ppl that have developed such high tolerance for other narcotic pain meds(such as morphine), that they cannot increase anymore, or are not as effective/don't last. Methadone is also given to addicts trying to stop using, so there is a stigma. Methadone doesn't cause tolerance, and has a longer 1/2 life than things like morphine(even sustained release). It does come in a liquid form as well I believe. Only certain Drs can prescribe metadol (methadone). It is generally only considered in long term pain mngmt, and when max doses of morphine(narcotics) are not controlling pain, for a medically recognized illness.

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44

I understand completely. I have crohns, lupus, fibromyalgia and 7 herniated discs in my back oh and cronic cellulitis. I was taking a total of 72mg of pill form dilaudid and it did not work. Like you, several trips to the hospital where they would give me IV dilaudid. Went to ER one day and got a nasty doc. He said would admit me for the crohns but would not manage my pain. Thank goodness my daughter becoming a doctor! 3 days after my ordeal with nasty doctor she came over and insisted I go to hospital. She took me where she was doing a rotation. They took one look at me ran all of their test and the next thing I know, I'm in ICU. My potassium was 1.3 and my sugar was 32. My daughter told them what happened and he said I was very lucky that I came when I did because if my numbers had been a little worse. I would have been deadl. These doctors need to stop painting everybody with the same brush. I was in the hospital that trip for 12 days that trip. I am now on opana IR and ER. They a little better but not by much. I agree the IV meds work better. They told me pill forms get absorbed in the small intestines. I am currently in the hospital and have been for 22 days- waiting to have most of small intestines removed. So how am I gonna absorb anythng? These doc's don't want to give IV meds so what are we supposed do? I feel your pain daily. I fount pm doc who will do liquids so I'm gonna try. I will let you know if it works!

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43

Methdaone worked for my pain as well, but there Is a stigma attached to methadone that not all dr's understand. I stopped taking it and alternate between tramadol and dilaudid. Re:pain patches. I don't recomend. I've tried them and you develop s tolerance and need higher and higher doses. Thst IS the great thing about methadone.

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42

I've found dilaudid 4mg to be most effective in controlling the abdominal and low back pain I suffer from. The problem is in finding a physician willing to prescribe this medication at all. I've suffered from Crohn's for over 30 years. The debilitating back pain came a long more recently, but with all of the problems with abuse and stringent regulations, doctors are afraid to prescribe these meds. My gastro was never a fan of pain meds, but doesn't have an alternative that doesn't rhyme with schmednisone. Any tips on how to establish a relationship with some physician who might be sympathetic and actually listen to an experienced long-time patient?

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41

Hi,I'm 33 yes old and my crohns disease is at its worst right now.the pain is unbearable, and that's even with Morphine 130 mgs twice a day & 2, 4 mgs of Dilaudid every 4 hours.but still I'm unable to live a normal life.because when the pain strikes it actually brings me to my knee's and drains the energy right out of me.so when people say you don't know what your going through, well I do,& its ruined my life,and continues to ruin my life.because it seems like everybody just looks at me like I'm just another addict with issues."where the support when someone like me needs it",RIGHT....no one but my dad seems to understand,and that's only because his Mother God bless her soul had it and his only 2 sons got it.so your story really stood out to me,I think I really understand what your going throu,because I'm going through pretty much the same thing.hope you get well & soon, because it definitely ruins your life. And I'm confident that there's more to life then pain & suffering & taking pain killers for the rest of my life,some day we will look back at this problem, and be able to tell more people what we've went through.God willing,thy will be done.GOD BLESS.

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40

No doubt, crohn disease is very distressing disease due to its bothersome complications and queer nature of pathophysiology. Your post is million worth in way of crohn disease information. I am very surprised and happy. Thanks a lot!

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39

hi sorry to hear about your condition i also have crohns and ive had for 15 years its been an on going losing battle im having the same problem with pain management im in the hospital right now 3/16/14 and im recieving 2 mg of dilaudid through iv every three hours and its not enough my pain levels are getting out of control i spend all day wrapped in a ball with either something hot or cold against my stomache and back and im tired of it is there no relief for this pain

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38

Hi I have read most of the posts here and I can say I have had Crohn's now for 25yrs with one surgery every day is a problem with pain and weakiness and Diarrhea. my doctor solved some of the problems by putting me on a HIgh fiber diet and a new Pain Medication called Exaglo. it comes in different strengths for me the 12mg tabs once a day works best for me its basically Dilauidid extentabs I hope this works for some of you guys good luck and God Bless..

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37

Hi there,
I'm sorry you are suffering so much from your Crohn's pain. It's ironic that I came upon your story because my Crohn's pain is also unbearable and I just took some Dilaudid! It sounds like your oral dose isn't high enough. You become tolerant to it and probably need your dose increased. It is well documented that legitimate pain sufferers don't become addicts.

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36

You are possibly experiencing withdrawal pain between doses which may be why your pain has increased. I have a similar problem with OxyContin. It may be worth discussing this with your doctor.

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35

Will do, do you have any experience personally with Hemp Oil? I just wonder sometimes, if it's this easy, why isn't everyone trying it? I'll try just about anything, have tried just about everything! I'll let you know. Thanks.

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34

Go to youtube and watch "Run From The Cure" Hemp oil is curing Chron's disease.Also do some research on hemp oil & Chron's disease! Good Luck!

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33

You are very fortunate to have been able to get by without pain meds, there are many patients that can't as you can see by these many posts. I know my doc said, I can just keep admitting you for IV pain meds WHILE attempting all other methods to control the flare or I can put you with a pain management doctor so that you don't have to be in the hospital every month for 10 days. That's a lot of time to be away from my family so I do have very specific instructions about when I need to be hospitalized, blood loss, etc. I am SO much happier to be able to deal with the pain at home and if I had my way, I wouldn't have this pain but so far nothing is working. I asked my PM doc about what you said about Dilaudid being bad for CD and he said that is an outdated stance and that they actually use it as the first line of pain relief after Vicoden or Norco. Also, Dilaudid sounds strong but the pill is NOTHING like the IV and I think it can be less effective that a couple of Norcos. It sounds much worse than it is, it's just not a potent oral drug unless you are without flares and are opiate naive. Seems like most of us on here have to go into the hospital a lot and are tolerant to opiates, I know I started with CD when I was just 8. I remember being in college at 17 and taking Darvocet and IV Demerol in the hospital, 20+ years later, Vicoden won't help and the docs know it. I guess what I'm trying to say is the people on this forum are clearly dealing with severe cases and doctors do prescribe to help them stay at home, I would hope if you were in the hospital that much and in non-stop unbearable pain, your doctor would help you as well.

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32

what is methadone. isn't that an illigal drug? im on dilaudid and its not working anymore

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31

Hi my name is robin and I to have crohns disease. there is a wonderful app called GI Monitor and it has some usefull tools and a support group. come join us we are a great bunch of people.
I am on fentinol pain patch and it does help some. i've been on 25 mg for about 2 years now.

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30

Hi my name is robin and I to have crohns disease. there is a wonderful app called GI Monitor and it has some usefull tools and a support group. come join us we are a great bunch of people

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