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

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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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28

Ask about OPANA, it is oxymorphone in extended release, and stomach problems are LESS common then with hydromorphone(DILAUDID). It may be the Dilaudid is just too hard on your already hypersensitive digestive system, or the "crash" when it wears off it too much to handle. In some people Dilaudid can only last 4-6hours. Good Luck!

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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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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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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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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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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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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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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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