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Crohn's Disease Forum » Treatment » Pain medication and addiction in Crohn's Disease


 
05-26-2010, 09:15 PM   #121
Crohnsgal
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Hello everyone! I have had crohn's (diagnosed anyway) for just over 8 years. Had a temporary ileostomy and a re-section as my welcome to the disease. I was in remission after that for a couple of years and then my joints started aching. I had no idea what that was all about but found out later that it was another blessing of this disease. Gotta love it.
Since then, abdominal pain, joint pain and ongoing everyday things. I have been on and off narcotics for the last few years. It controls the pain so I can still work and be a functional mother to my daughter. In any case, a couple of weeks ago I went to the drug store to get Claratin as my eyes were getting watery and swollen and I figured it was allergies. Strangest thing though.... After taking it for a couple of days, my Crohn's pain has all but disappeared. Ibuprofen occasionally but nothing else!
Started doing some digging on this craziness and it turns out antihistamines are in fact used to treat crohn's, parkinsons and MS. I don't know if it would work for everyone but I couldn't keep it to myself!
Sorry for the long post.. I hope this might help another sufferer like myself
Take care everyone!
05-28-2010, 01:39 AM   #122
Rebecca85
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Just a quick warning- Ibuprofen is not recommended for use by people with Crohn's as it is a nsaid and can irritate the stomach and gut (like aspirin). I was told to stick to plain paracetamol for mild pain relief.
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05-28-2010, 02:03 AM   #123
mneilsen2084
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There are a lot of meds without codeine. Do you even need something that strong if you were only taking t3's in the past? Its highly unlikely for someone in real pain to get addicted also.
I do not believe this to be true. If the pain lasts a long time and the patient needs to medicate the pain away, they are inevitably going to become at the very least somewhat Dependant on that med.
I used to get prescribed percaset for my stomach pains during flare ups, but started feeling like I needed them even when the pain levels went back to normal. Now Sadly I am to afraid to ask for pain killers and just bare through it.

To the original poster, I am sorry you are still having headache's. I do not know if yours are similar to mine or not, but I rate headaches of this nature right under the pain of crohn's except less bearable because it is the head that hurts. Then I get even more nauseous and sick. Sometimes I can lay down in a completed darked out room and it will pass, but usually I end up in a cool temp tub soak with a trash can next to me for the up-comings of my stomach. So I really do empathize when I say I am sorry you have to suffer through this pain on top of everything else.
05-28-2010, 02:06 AM   #124
mneilsen2084
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Just a quick warning- Ibuprofen is not recommended for use by people with Crohn's as it is a nsaid and can irritate the stomach and gut (like aspirin). I was told to stick to plain paracetamol for mild pain relief.
Is paracetamol like Tylenol?
05-28-2010, 04:22 AM   #125
David in Seattle
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Is paracetamol like Tylenol?
Paracetamol = Acetaminophen = Tylenol. It does not pose the threat of bowel irritation that the NSAID's do (Naproxen, Ibuprofen, Aspirin and the COX-2 inhibitors like Celebrex) but in doses not all that much higher than typically used for pain, it can be hard on the liver.
05-28-2010, 07:49 PM   #126
Crohnsgal
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The problem I have with Tylenol is it doesn't do anything for me. It doesn't have the anti-inflammatory properties like ibuprofen. When you need relief from the pain, you take what works. I haven't noticed any ill effects on my gut from the ibuprofen. That's just me though, not saying anyone else should use it.
05-28-2010, 11:17 PM   #127
mneilsen2084
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Ah ok thank you for clarifying this question for me.
05-29-2010, 01:24 AM   #128
Rebecca85
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That's fair enough, just thought I ought to say something in case a) you weren't aware and b) a newbie might read it and think Ibuprofen is safe to take for everyone.
05-29-2010, 12:26 PM   #129
mneilsen2084
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Oh no, Three years ago, when I got diagnosed it was because I had been taking 4-6 Ibuprofen a day for back and stomach pain. It made me pass blood so bad that the whole toilet was red. I was not sure what meds I could take though. :-)
05-30-2010, 11:38 PM   #130
kello82
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Kello82:

Hi. I'm new and must get off the computer in a minute but I can SO relate to your dilemma that I had to respond. I've had Crohn's for 25+ years, 100+ Hospitalizations, 10-15 Major surgeries, written a critically acclaimed Book, etc. and I see a Pain Management Doctor Regularly - so - I believe I am credible on this issue.

Fentanyl seems rather benign as a "Patch" and my experience has been that it does not become addictive "Mentally" like the typical Narcotics we are used to (at least for me) but the Body become PHYSICALLY ADDICTED to it BIGTIME and thus you have to be VERY CAREFUL how you get off of it in terms of tapering down. I don't know how much you were on but let me give you an example of my last experience with it. It is a LONG story so I will spare you the details but because I had Two (2) surgeries within 3 months of each other - they couldn't find a Pain Med that would work for me. Finally they tried Fentanyl and it worked. The problem was that in the Hospital my tolerance built up to a dosage of up to 300 MCGs DAILY and that is an OBSCENE AMOUNT - but I was completely lucid.

I think I dropped 50 mcgs every 3 days or so until I got down to 150 MCGs. Then I wanted to continue this systematic detox but my body did not agree. In fact, once I got down to 100 MCGs, I got so fed up with the slow nature of the detox that on my way to see my Pain Management Doctor I tried to just go cold turkey. Well, it didn't work so well. I lost complete control of my bowels (in a NYC Taxi Cab - which was embarrassing but hysterical at the same time) and almost had to be hospitalized for a variety of possibly life threatening symptoms.

Accordingly, I had to METHODICALLY drop 25 MCGs every 3-6 days (under the supervision of the Pain Management Doc) and it took a few weeks until I was down to ZERO. If you try to do it any other way - you will experience Physical/Mental withdrawal. Depending upon how much you were on - and for how long - will determine the severity of the withdrawal symptoms. Clearly - you can't go from 300 MCGs or even 100 MCGs to Zero without weaning down. So, PLEASE be careful and take all of thsi into consideration and speak with your doctor. If you do it Methodically (i,e, 25 MCGs every 3 days) - it is PAINLESS. But if you try it any other way - it is MISERABLE and could land you back in the hospital (or dropping a deuce in teh back of a taxi cab!) Good luck and please feel free to contact me directly if you have more questions.
thanks for the info!

i have been fent free for quite some time tho, so im good now

holy hell 300mcg???!?!! thats horrible!

i was on the 12 for a while, then up to the 25 prob for a good 10 months or so. then came down to 12 for a week and then 0. still tho, the w/d's were awful. nothing like sh*tting myself in a cab lol, but still. i remember just laying in bed, semi asleep, but like whimpering every 2 minutes without even meaning too. the crawling was just disgusting. it was like a layer of cell phones on vibrate between your skin and muscles. all over. makes ya a tad twitchy hahah i wish i had a vid of myself now....
i was also on perc 5/325 a good 3-5 times a day. i still am now.
so dont really know why it was so bad for me. i mean that is minor minor stuff, and still i went down by 12!! once a week! hmm ok well maybe cuz i was like 90 pounds hahah i just thought of that.

and yep ditto on that the fent patch is not really addictive MENTALLY. totally agree. since its constant you get no buzz whatsoever, even in the beginning. no highs and lows, so it worked very well for me.
other than a massive personality change, it was lovely!

bwahaha, hey we chatted on twitter yes?? hospitalpatient?? watched your vid! unless there are two people who use that moniker but i mean that would be crayzey.
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Last edited by kello82; 05-30-2010 at 11:42 PM.
05-31-2010, 04:37 PM   #131
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May 31, 2010

Kello82:

Greetings.

Yes – I am the same person on Twitter and with the Videos and whatnot. The Administrator of this Forum has asked me to refrain from even mentioning the Videos or my Book in a promotional manner since that would be akin to I suppose using this Forum for Commercial Gain. I understand their concerns and thus I will respect and will obey their policy. Based on the Patient Feedback I have received from some of them, I happen to disagree with this Policy in my situation since I think my Forum Responses stand on their own in terms of my intent to use this Forum strictly to share my experiences to help others – but – I’m New to them so I understand their position.

As for Fentanyl, YES – 300 mcgs was INSANE – but I was in a situation where I had two (2) very serious surgeries within a few months of each other and my body simply didn’t respond to anything but Fentanyl. Then my tolerance grew very quickly. As you pointed out in your Post, it is a strange drug in that you don’t get “mentally hooked” and for me that was actually VERY DANGEROUS because when I was recuperating and just starting to come down from the 300 mcgs I tried to DRIVE not thinking I was that impaired – but I was SERIOUSLY MISTAKEN. Thank God I realized it before I went too far and then I gave up Driving until I was down to 50 mcgs or so.

I am surprised that you being on Percocet didn’t help with the withdrawal – even a little? I also didn’t know that Fentanyl comes in a smaller Dose than the 25 mcg Patch? It is amazing how potent even that 25 mcg Patch can be – which you learn when you try to stop cold turkey. In any event, I hope you are “thru the woods” with the drug withdrawal and have had the chance to enjoy the weekend.
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06-01-2010, 01:48 AM   #132
Rebecca85
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Oh no, Three years ago, when I got diagnosed it was because I had been taking 4-6 Ibuprofen a day for back and stomach pain. It made me pass blood so bad that the whole toilet was red. I was not sure what meds I could take though. :-)
Now that you mention it, before I went in hospital the first time I had a really nasty virus. I had the worst sore throat ever (worse than tonsillitus) and was taking 6 ibuprofen a day for 2 weeks (and cocodamol which is paracetamol and codeine). And I was told to gargle with soluble aspirin. I always assumed it was the virus that triggered my symptoms but it was probably the nsaids.
06-01-2010, 11:52 AM   #133
mneilsen2084
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[QUOTE=Rebecca85;190534]Now that you mention it, before I went in hospital the first time I had a really nasty virus. I had the worst sore throat ever (worse than tonsillitus) and was taking 6 ibuprofen a day for 2 weeks (and cocodamol which is paracetamol and codeine). And I was told to gargle with soluble aspirin. I always assumed it was the virus that triggered my symptoms but it was probably the nsaids.[/QUOTE

Yeah I just barely learned about NSAID's recently. I had never known why people with crohn's cannot take certain pain meds.
06-01-2010, 01:28 PM   #134
Rebecca85
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In my defence I hadn't even heard of Crohn's back then!
06-01-2010, 01:32 PM   #135
mneilsen2084
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Hey, do not feel bad, some of the ER doctor's I've seen don't really know about crohn's, and its their job to know medical information like that. :-)
06-01-2010, 06:41 PM   #136
Vivvian's Mommy
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When I was 16 I got addicted to Morphine.Sadly it was even in the hospital.The nurse misread something and for every 5mins. I was getting 1mg through the push button.They weaned off with Vicodin at 725mg and then I became addicted to that and was sent home.My mom ended up cutting me cold turkey.She locked it in a safe.I would be sick for a few days and the pain for me was baad even though it wasn't pain from the Crohn's it was that gut wretching feeling when you get really agitated.Eventually though I did better.Now I take Tylenol and being that my husband was in the ARMY the Military hospital liked giving Percocet for any pain small or big.But I did good having the help from husband I only took it when need be.
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07-08-2010, 08:23 PM   #137
kello82
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hey ok so the past week or so i have been taking about 1 5/325 perc a day. which is great! the pain has not been affecting me as much, before this some days i was taking up to 3 tabs.

but thing is that the past week my mood has been very weird. not depressed cuz i am actually quite more productive than i was at my lowest, but just supremely anxious, nervous, antisocial feeling, fear, low self esteem and all this crap.
even just meeting up one of my really good friends gives me that visceral feeling of terror in my stomach you know? in the past week i have blushed 3984309 times and i RARELY do that. like litte tiny things make me horribly uncomfotable and self concious and just afraid

could this be because of the reduction in the amount of perc? i mean the reduction seems SO minor....i have no physical symptoms whatsoever unless it has been 24+ hours without taking one...then they are minor.

sooo is this just coincidence you think? i dunno what to think cuz when i came OFF the fentanyl patch i didnt have this drop in mood, i just felt like absolute CRAP physically for a few days and then felt a lot better emotionally. felt very unclouded as i came off of that med. but maybe since my depression was worse overall then it didnt affect me the same way. cuz in the past month my spirits have been slowly getting higher so therefore the bad feelings from coming off narcs actually changed something and i could notice it?

meh????

Last edited by kello82; 07-08-2010 at 08:26 PM.
08-26-2010, 02:04 PM   #138
texasmade89
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The first time I went to a pain management doctor he suggested suboxone, a drug used for to prevent withdrawal for those coming off large doses off opiates. I'd recommend it since you will need continuing pain treatment. They say it's not addictive but it is a partial opiate agonist (does make you feel kind of good) I would disagree. Any pain med with narcotic effect is addictive. It made me nauseous, killed my appetite even more, feel like I had the flu and did not relieve the pain; I've never had such a bad experience with a pharmaceutical. I'm just getting off it today and will be taking prednisone until I can see a different pain management doctor. Yeah the side effects were worse than prednisone.

I'm guessing I had this reaction because I was not at the time nor have I ever been on high doses of opiates. This thread was too long to read every response, so my bad if somebody already suggested this.
09-24-2010, 03:48 PM   #139
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Ahh pain medication. My opinion of it has changed a lot since diagnosed. At first I was popping them like skittles and felt almost "normal." after my symptoms started clearing up though, I realized I was taking them even when I didn't need them. Basically I was dependent on them. Now I will take them only in dire circumstances where I feel unbearably bad. It's very easy to become dependent on them even with chronic pain. Also, I worry that they're rough on my stomach since I had gastritis before.
09-26-2010, 07:49 PM   #140
MysteryLocket
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GNC Crohn's Man;13499Remember if you are having intestinal pain then thier is only so much you can do...
You can not take NSAID's they will cause your crohn's to flare...

[url
said:
http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202743.html[/url]
If you have active inflamation in your bowels then you CAN NOT have narcotic based pain meds...

Anything that is narctoic based will cause intestinal slowing and blockage and will only make the problem worse... You may feel pain free, or at a lower amount of pain for a few hours, but be in even worse pain 4 hours later... Thus you take another pain pill to killl the pain that the pervious pain pill caused you as it passed through your body... Very fast way to get addicited, hospitilized, or even dead if you do this... Yes your intestines can rupture.... If you have lots of pressure (if you feel super bloated all throughout your intestines and stomach) then do not take a narcotic based pain med. Very much so if you are then going to take a phengran and try to eat (you may be starving due to a high prednsione dsages). If you do this then your intestines can rupture... If your instestines rupture then well you will either die or be live with a very very very not pretty pitcure of what is left of your intestines..
....
wow... this is the toss up i've been doing... (that is until I ran out of pain meds) ... use hydrocodon/apap for pain every 4 hrs when pain would strike up. then when the nausea sets in i'm using promethazine (which i think is phengran)... and I am bloated with pressure as we speak, and haven't had a bm since tuesday (though i went to the er and they just sent me home after doing a liver/thyroid blood test and pregnancy pee test on me) (no they didn't even examin me.. i requested a ct scan and they said in my life time with crohns i will have to have many of those, and they aren't going to give me one, because of all the radiation. I goto my primary doc tomarrow (that's IF medicaid transportation doesn't leave me hanging again).
I'm glad i opened this thread up and read it!
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Crohn's Related Meds=
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On Hold=
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Integra Plus - 1 x daily (125mg)
11-15-2010, 12:07 PM   #141
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Hey everyone! I just wanted to talk about what has worked for me.

I use medical marijuana for the pain. But, I don't smoke it, because that is not where the relief is. I've heated up marijuana plant matter (the buds and leaves) in various oils, alcohols, and milks. What works best is to heat it up in goat's milk. I have actually started gaining weight and sleeping through the night this week by ingesting the goat milk everyday. I drink it about 20 minutes before I eat a meal as it coats my stomach and intestines with the anti-inflammatory properties. I was pretty high for the first 2-3 days which was embarrassing (being the owner of a business!) because I didn't expect it as I have smoked for pain for the last year. But, the pain was absolutely gone that very first day. Now I take it and don't feel high anymore which is great because it's working on my intestines the entire time!

No side effects. Not one death from marijuana ever. No physical dependency, although habit forming.

We have CB1 and CB2 receptors in our intestines (specifically people with Crohn's disease) that bind to the cannabinoids in the plant (thc, cbd, cbn). Just google these things for research or you can see links to research on "marijuana and crohn's" on my blog.

Also, this place was great for the recipe: marijuanasaveslives.org. It was founded by a man named Brett who says he "saved" his wife Keri from her Crohn's by this milk. He's really sweet and will talked to you in a hushed voice for an hour because he's at work Happy days! Nikki
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Ulcers on the terminal ileum & narrowing
Currently in a flare, lost 20 lbs in 8 months.
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11-17-2010, 02:34 AM   #142
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I just started to go to a pain management specialist about 4 months ago. Sadly there is not much more that they told me that I can do other than what My DR.s have me doing right now witch is percocet and humira. I have also been in Tramadol (did not work) as well as tried Marijuana once I did not like it. But I am just glad to know that I am not the only one that is on pain meds for crohns. I also want to ask if anyone feels like they are looked down upon for taking pain meds on a regular basis such as percocet? Maybe it is just me.
11-17-2010, 03:19 AM   #143
EyesofThunder
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I am trying to help figure out what is good/bad that my mom is taking for Crohns and Ulcerative Colitis. She is taking Darvocet (around 8 pills a day, 3-4 just to get thru the night) and sometimes OxyCodone or Tylenol 3. I am very worried that she is OD'ing on tylenol.

She is bleeding again, it is flared up pretty badly.

She is in her mid 60's. I don't think this much pain meds are good for her, but she needs it to deal with the pain. What should she be doing? I am pretty far from her, so I can't be there to help, which is frustrating.

Thanks!
11-17-2010, 04:46 AM   #144
Jenny06xx
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Here goes lol
I was on codeine 30 mg ( no paracetamol) for 6 years !! For diarrhoea as I was told ibs ibs ibs it was the only thing that worked to slow me down, I started on 2 a day and ended up on 8 to 10 a day for the d and pain because I couldn't function without them ( not addicted but dependant for the relief) when the pain was too much I'd end up in the hosp again no tests ibs u know the drill!!
I stopped the codeine myself cold turkey worried they were causing my pains, I felt like I had the flu for a week and couldn't sleep etc I won't go into detail !! I ended up in hosp about 5 times that month due to pain and no relief so I was handed back codeine and realised they did work and weren't causing my pain but I was still tolerant to high doses and needed the max a day for relief and still ended up in hosp, thankfully this is when tests were done and I was diagnosed with crohns and given proper pain relief I stopped codeine an switched to tramadol and they are fantastic for me at the moment and when they stop being effective I will ask to switch again to something else.
I hate having to take them I hate the looks off the receptionist at my doctors, I hate people commenting u take too many tablets etc but I don't see why I should suffer in pain all day and not be able to go out or look after my kids or cook a meal, I don't care if I get addicted/dependant I only take them as needed and always will if I need to.
No one should suffer in pain what kind of life is that ? If your in hospital in pain they give you pain killers so what's the difference taking them at home when in pain?
And if my doc took me off them and I was genuinely in pain I would find a way of getting them if I had to in my eyes no one should suffer on pain you won't get a medal for it
Jen XX
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diagnosed with crohn's disease September 2010 symptoms since 2003
Acute pancreatitis 2003
gallbladder removed laprascopic 2003

Meds

Budesonide finished again !!
Pentasa 2g 2x a day
Pred 40mg
Ensure plus ( no longer needed)
Dihydrocodeine 120mg slow release 3 a day
Dihydrocodeine 30mg 2.. 4x day
Tramadol 50 mg 2 ...4x a day ( stopped coz it's not helping )

Waiting for fist appointment at pain clinc I hope it helps !
11-18-2010, 02:57 PM   #145
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I am trying to help figure out what is good/bad that my mom is taking for Crohns and Ulcerative Colitis. She is taking Darvocet (around 8 pills a day, 3-4 just to get thru the night) and sometimes OxyCodone or Tylenol 3. I am very worried that she is OD'ing on tylenol.

She is bleeding again, it is flared up pretty badly.

She is in her mid 60's. I don't think this much pain meds are good for her, but she needs it to deal with the pain. What should she be doing? I am pretty far from her, so I can't be there to help, which is frustrating.

Thanks!

I've had Darvocet in the past. It didn't touch my stomach pain though, so I can see the 8 pills a day. My doc just gave me Tylenol 3's to take since I had been loading up on 4,000 - 6,000 mg a day of regular Tylenol. I haven't noticed that big of a difference with the 3's. But being mindful of the codeine makes me take less.

If she's in that much pain, I'd suggest trying something else for the symptoms. Maybe a change of her regular Crohn's meds. I'm still new to Crohn's (2.5 yrs), so I'm not sure. Just make sure that her doc knows how much of what.

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11-19-2010, 02:39 AM   #146
EyesofThunder
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I asked her what she is taking now, what do you find that helps diet wise? Anything that is very helpful?

I had the beginnings of an ulcer many moons ago and I found Cottage Cheese was very comforting to my stomach. fortunately it never got bad and went away never to return. My wife was cooking a lot with red pepper, I guess I didn't get along with it.

My mom is trying everything to avoid going to the hospital, she thinks they would admit her if they saw her right now. I wish I was down there to help out. So frustrating seeing family go thru something so hard and not being able to help.

Thanks so much!
11-19-2010, 08:43 AM   #147
Jessica
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I asked her what she is taking now, what do you find that helps diet wise? Anything that is very helpful?
For the most part, a low-residue diet usually helps me during flares. Google that and you'll get an idea of what to stay away from.


My mom is trying everything to avoid going to the hospital, she thinks they would admit her if they saw her right now.
This makes me think that she should probably go to the doctor at least, if not the hospital. One thing that I've learned with Crohn's is that ignoring symptoms doesn't make them go away. It makes everything worse. I ignored my symptoms for about 9 months before I saw a doctor. Boy, did he yell at me! If she doesn't want to go, consider calling the doctor yourself. Maybe just talking to a nurse will pose them to call her and talk her into coming in to their office at least.

I hope everything works out! This is a great forum for advice. I wouldn't be surprised if you found other "caretakers" on here for advice about your Mom. As for you, I hope that the ulcer never comes back. And red pepper is something I only do when I'm brave.
12-13-2010, 11:29 AM   #148
Crohnadian
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I tried on hydromorphone, hydromorph contin, oxy contin, morphine, tylenol, and ibuprofen. The ibuprofen put me in bed in dire pain for nearly a week. Tylenol hardly does anything, while morphine makes my pain worse and oxy contin is hardly effective. Hydromorphone (dilaudid) and hydromorph contin (slow-release, long-acting dilaudid) are the only ones that worked for me, and in so, they got me hooked pre/post-op, so I'm experiencing a bit of withdrawal now that I'm coming off it, but nothing too serious. Some shakes, anxiety, sweats, chills, sneezing, but I'm sure they could be much more intense than they are so on complaints.
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Updated 11/15/2010
12-13-2010, 01:05 PM   #149
Jess722
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I'm wondering if anyone has been addicted to Dilaudid? Whenever I go to the hospital for a flare up they give me Dilaudid and at first it works wonders and takes the pain away but I've noticed after a few days it takes a higher dosage for the same effect. Does this mean I'm addicted or maybe my body is becoming tolerant to it?
12-13-2010, 01:10 PM   #150
Crohnadian
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Location: Quebec
Yes Jess as my post immediately before yours stated, I am. It's the hydromorph contin (long-acting) that I am referring to however it has been both (including hydromorphone) at one point. I also required consistently higher doses to achieve the relief I needed
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Crohn's Disease Forum » Treatment » Pain medication and addiction in Crohn's Disease
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