mitchell Says:
Crohns Disease 4mg Dilaudid Does Not Work Help! (Page 3)
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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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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:
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 pain.......now 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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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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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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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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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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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 ..here'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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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:
https://rxchat.com/wiki/Chron's_disease&ad=true
Does anyone else have any advice to add?
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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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