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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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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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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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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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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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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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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23

Great answer!!!

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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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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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20

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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19

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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18

Karen,
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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17

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) sprint.blackberry.net [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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16

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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15

I FOUND HELP WITH RX'S at Partnership for perscription assistance or (888)477-2669 or on pparx.org. 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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14

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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13

MY HEART GOES OUT TO YOU.... I TOO GET THE SAME FOR PAIN AND FEEL THE SAME AS YOU... I HAVE CANCER AND I DONT WANNA BE DEPENDENT ON PILLS BUT WHAT CAN YOU DO?? YOUR IN MY PRAYERS AND ALL THE BEST

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12

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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11

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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10

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 problem....now 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 understand......now 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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