Crohns Disease 4mg Dilaudid Does Not Work Help! (Page 2) (Top voted first)

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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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21

I hope you are doing better now! I just want to say, surgery really sucks but if you do it you may be surprised how well it helps! I have had two and there are down-sides such as changes in what I can eat, but overall it has been very successful! I had 1 surgery at 19 and lasted 12 years on prednisone before a second surgery. Then I had a second surgery and have completed several marathons and travelled around the world for work. So a normal life or above average life is possible! Now I'm dealing with Psoriatic arthritis which has stopped me in my tracks. Ironically I tak Dilaudid daily for it. Good luck!

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22

Smoke marijuana for Crohn's symptoms. I've had Crohn's for over 20 years, 7 surgeries, never been in remission. Trust me - pot helps. The Dilauded will slow the mobility of your gut, thus food moves slower over sore spots, causing longer bouts of pain. Honestly, smoke pot, take an Ambien & you will sleep pain free, at least for a bit. Not a cure, but it helps me TREmendously.

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23

Great answer!!!

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24

I have the same problem and I just want to tell you that for sure the pill form of Dilaudid is not nearly as effective as the IV and in my opinion, doesn't last nearly as long as 4 hrs. I too have Crohn's and am just now in pain management and adjusting as we go to find the right mix, I have lousy insurance so I can only get the generics. You should do everything you can to get in with a pain mgmt. specialist, I was in the exact same spot you are in and it's not that expensive if they are legit. I saved up for the first visit and it was worth it, primary care docs are too uneducated and scared to write for pain meds. Just hang in there, I did the 6MP and it took a while but it worked and saved me from a third resection. I can't afford the Remicade plus my white counts are too low so they do their best to treat the Crohn's and pain but I just deal with the fact that I will be in pain of some form but no more level 8-10 for me and you deserve someone that can help you too. If your doc had one obstruction he be handing them to you in handfuls, lol. One must keep a sense of humor about this whole mess. I have no issue with constipation b/c my Crohn's can't be stopped, it won't be stopped - I feel for you, just eat as bland as you can (oh joy) and try to keep weight on. Maybe your absorption, or malabsorption is messing with your digestion of these pills? Get to a pain management specialist any way you can and good luck to you. Keep us posted please.

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25

I am 27 and I have had Crohns officially for about 2 years now and it seems like no treatment is working to prevent flares. My GI is now talking about surgery if things don't improve real fast. When the flares hit though the pain is intolerable and I usually end up in the ER and they give me 2mg of dilaudid through the IV and then about 3-4 hours later another 2mg IV. On my worst flare I ended up being admitted to the hospital for 10 days and the only thing that controled the pain was being on a dilaudid pump. A few months ago my GI prescribed me fentanyl patches for when it flares really bad to try to avoid going to the hospital. I know to look for significant amounts of blood in my stool and go to the ER if I see that. That is exactly what happened two weeks ago and ended up staying in the hospital for 5 days.

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26

Eric,
Does your doctor prescribe anything else to actually treat the disease?if you are in the hospital regularly you should be taking something like a biologic (remicade), and prednisone for flares. The pain medicine actually can make things worse so I'm surprised so many doctors are prescribing pain medicine outside of the hospital when you are on steroids, and not eating.
Also I want to mention that probiotics have helped me a lot! Growing good bacteria in your gut reduces the bad bacteria and your immune response goes down. At least mine does!
Good luck!

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27

This Friday I'll go to the GI and hopefully he'll see that if I lose anymore weight I'll be dead... I've lost about 20 more lbs since last post in Feb. the steroids were good till my little heart tried to beat so fast it popped out of chest :/ and my lil chipmunk cheeked self snapped like a crazy lady on a girl when I was working in corp oil & gas. If he says surgery that would be welcome! I keep feeling like I'm fainting or like feathers are rubbing all over my body, but then I snap back into reality. It's weird sounding but I feel like I'm going to die; is that just malnourishment?
Currently stopped taking D's sometimes take adderol to function on Remicade every 6 weeks and norco 3/ day still. Am I dying? My avg weight is 128-135 at 5'7" (I only weigh 111 now and have to wear my 10 yr old step daughter's clothes) :(

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29

I have had Crohn's for 12 yrs. I have been in remission for 3 yrs. I found Boswellia to be a life saver. It cleared up my ulcers and the pain. I regained my weight and live a normal life. I gave up on the drugs. My doctor is still scratching his head over my recovery.

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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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32

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

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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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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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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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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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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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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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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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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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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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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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