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

08-13-2009, 01:27 AM   #91
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Hello soupdragon.. thanks for taking the time to reply. My daughter has had symptoms since she was 10 and was diagnosed with crohn's colitis almost 2 years ago. they havent tried antispasmodic drugs. they did all sorts of testing at first as she was not keeping food down and was severely dehydrated, her heart rate was high and she was pale and lost about 15-20 lbs in a month. she got back from a trip up north on july 28th and i took her to the emerg. as soon as i saw her and we never went back home.. they transfered her out of town to the childrens hospital where she sees her specialist normally. her doc just happened to have left this hospital recently and her replacement hasnt started yet so its been like 10 different residents seeing her.. i know they all answer to the same doc but still frustrating not having consistancy. they have her on a low residue diet and are trying a lactose free diet for the last 2 days to see if that helps although her appetite comes and goes. they are keeping track of the pain and intake/output. most of the time her pain is in the lower left area of her abdomen and its alot worse when shes (trying) to poop. alot of the time she goes to the bathroom just goopy lookin blood comes out and just since yesterday shes been going to the bathroom like twice a day and her pee is getting very concentrated.. like today she went 12 hours b4 the nurse insisted she try and go and it was about 600ml of almost brownish urine. I have been reading to her and playing word games to keep her mind occupied when shes in pain and shes such a tough little girl.. she understands her condition and shes very mature about it.. i explain everything to her about her condition and i dont sugar coat things too much as i want her to know whats happening inside her body but of course i dont say anything to freak her out.. i am so calm around her and even apart from her actually so she gets no stress from me i can assure you. i am very good at coping with stress and am a very reasonable, understanding person so i am trying to see where the docs are coming from too and understand their reason for treating her as they are. sometimes a heat pack helps and sometimes it makes it worse. she had a fever tonight 38.5 i believe. theyre also starting a suppository tomorrow although i forget the name (starts with an f)

thanks so much

wizbit- i was also surprised when i read the possible side effects.
08-13-2009, 03:40 AM   #92
ele mental leprechaun
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Join Date: Dec 2006
Hi Lesleymarie,

I can understand your frustration at the number of docs and no consistency. As I was saying you are doing a great job and I totally understand why you feel as you do. When children have chronic illness they are often wise beyond their years arent they.. On the lactose free aspect my understanding is initially its 4-7 days that you may initially find a difference but could take up to 4wks to see anything major. It could also be that she is so exhausted and so inflammed that she may not be able to notice any difference until things are in better shape.

Ok so they are trying a low residue diet... I dont know where in the world you are based. Here in the UK we have drinks like modulen and Elemental 028 Extra. They allow the gut to completely rest whilst being absorbed higher up the first metre of the small bowel.

As she is under 16/18 they may have another liquid diet that is more suitable. I know in the US it seems harder to obtain/or get them to use it however there is research that shows that up to 80% remission is achieved with this option and then a low residue diet can be introduced along with searching out any foods that may upset/do damage. Have a look at the LOFFLEX diet (google it for some ideas as it was designed by the team of GI's at the hospital where I am based).

This route is something I tried and it worked very well. Some others here have tried it also with reasonable results.

My reason for suggesting this is it may then allow the steroids time to kick in with more effect. It is a tough first 5-7 days on something like the liquid diet I mentioned BUT worth the effort. It is introduced gradually over the first few days and with her appetite coming and going and the fear of going to the loo may be the answer as she then wont have to go or things should be greatly diminished. Should also help ease her pain AND solve any concerns she may have on the food/ go to the loo link and any fear she has built up with eating. It also means she gets the nutrition she desperately needs and it will help with lethargy and exhaustion she is experiencing and any sort of mental foggyness as she absorbs her body individually needs.

You need a paedeatric dietitian that specialises in IBD that is worth their salt on this one so if you havent got one push them to get one and if you already do ask them why the heck this hasnt been suggested!!

The research is there for both the elemental and modulen. The elemental that I used comes in both powder format that you make up with water and ready made cartons. The dietitian should be able to supply samples of which we all prefer certain flavours. I believe the modulen you can add milkshake flavouring to. So kick it around with them!

The website for the elemental to give you some reading material is:

Are they replacing her fluids intravenously? Even just to give her a boost rather than leaving her on just the fluids she drinks? It is possible to put a "venflon" or cannula into her arm using an anaesthetic cream so she wouldnt feel any pain. Here it is called Emla cream.

Hope this helps a bit more and gives you some ammo!

Stay in touch. We will all help here were we can. ((hugs)) to you both.


Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.

Last edited by soupdragon69; 08-13-2009 at 03:51 AM.
08-15-2009, 12:04 AM   #93
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Join Date: Aug 2009
hi.. dont have much time as im falling asleep but yes she is on IV fluid. last couple days she hasnt eaten anything really except maybe a couple crackers. they talked to me all about remicade today.. i have the weekend to weigh the risks and benefits and talk it over with my daughter.. risks are so scary im in canada btw.
08-19-2009, 05:40 AM   #94
Join Date: Jan 2009
Any results with Prednisone? Prednisone works instantly and your daughter should feel alot healthier after taking it. Remember that she will recover eventually.
08-21-2009, 11:29 PM   #95
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Join Date: Aug 2009
my daughter was on prednisone for 8 weeks and got all the bad side effects but did nothing to help her crohns. they also have had her on steroids here for 3 weeks and only got worse.. she had her first dose of remicade today..
09-06-2009, 11:01 PM   #96
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Join Date: Jan 2008
Location: Auburn, Georgia
I was going to a pain management clinic but all they did is get me addicted to Lortab.

Last time I was in the hospital, they had me on IV dilaudid (FTW) and IV morphine.

When I was getting close to coming home, they put me on the Duragesic patch 50mcg. I did not even need/want the dilaudid anymore.. No opiate cravings and it takes the pain away.

I talked to my GI and he currently has me on it since it works.

I still need something for breakthrough pain in the morning and in the evening and I am working on finding something effective for that.

If you haven't tried the patch yet, you might want to give it a shot. Best part is that it lasts for 3 days, so don't have to pop pills all day long.
09-24-2009, 04:04 AM   #97
Join Date: Aug 2009
I take co codomol most days to control crohns pain, lately as the pain has been so bad, they have given me oramorph at a low dose they say I can take 5-10 mils every 4 hours, I try to keep this as ow as2.5 mils about three times a day when needed. This works for me. Peggy
10-28-2009, 08:13 AM   #98
Join Date: Sep 2009
Location: Deerfield Beach, Florida
I read all your posts.

I am going drug free with an ocassional 15mg of codiene and a few tabs of Lomotil.

If you have the urge to go to the bathroom after you eat, perhaps, it is the food you just ate? What you put in is what comes out if not processed.

i hope this helps.
11-05-2009, 10:23 AM   #99
Robert kipnis
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yes. Norcos. Everytime I hava a hospital stay I become an addit. Dilauded in the hospital norcos and vicodins after.
11-05-2009, 02:15 PM   #100
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Location: San Diego, California
I am currently taking hydrocodone 5-500 but they don't do a whole lot. If I take them on a regular schedule they provide some relief, but still after I eat or go to the bathroom it is rough. I have just maned up and dealt with it for 15 years, but now I need some quality of life and need some pain meds.

After my current prescription I might head to a pain management specialist.
Diagnosed in 1996
Currently on: Filgotinib clinical trial, Prednisone, Imuran
Colostomy surgery 4/24/12
Prone to skin infection, abcess, fistula, pyoderma, erathema

Past Failed Treatments:
6 MP
11-05-2009, 05:03 PM   #101
Robert kipnis
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I'm addicted to norco.
11-09-2009, 03:06 AM   #102
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anyone who has constant pain and is on the verge of addiction/addicted, i definitly reccomend seeing a specialist and getting some type of pain patch. i was taking 12-14 percs a day to manage my pain w/o enough relief, now i have 25 mcg fentanyl patch and im down to 2 percs a day.
the patch is awesome and covered my pain so that i could get down off the perc before i was in deep water. i take one here and there when i have pain thruought the day and overall dont suffer too much.
i cant imagine if i was without it, im sure id be up to 30+ percocet each day right now, and not only physically addicted but mentally.
as far as i know the patch isnt addictive cause its constant, no extreme low and then craving for the high and releif.
not sure if you have to wean off the patch though.....not sure how that works. huh.
is anyone else on patches too?
It just takes some time,
little girl, you're in the middle of the ride.
Everything, everything will be just fine,
Everything, everything will be alright.

<3 Mik

Last edited by kello82; 11-09-2009 at 03:12 AM.
11-09-2009, 05:02 AM   #103
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Location: United Kingdom

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Yup, I got a patch for my back and joint pains. Brilliant thing despite it not taking away the pains completely which is probably a good thing so I don't over do it and do my back a severe mischief. I don't think it's slowing my gut too much - I've only had it 4 days so it's only just up to full blood level.

It's just 5mcg/h BuTrans - buprenorphine.
11-09-2009, 05:21 AM   #104
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Join Date: Dec 2008
I'm on the Fentanyl patch 12mcg and I also have the Fentanyl losenges which are 100mcg I think. I was on Fentanyl prior to this occasion but went through a period of not needing painkillers, then ended up on MST. With the MST it just got to the point where it was becoming less effective, the dose was being increased and it just wasn't a great situation to be in. For me Fentanyl has given me the most relief, without many side effects - the only one I've noticed is that I now bruise very easily.

I believe Fentanyl is still addictive but as it is more effective in keeping pain control constant as Kello said, in my opinion that means less room for abuse by those who has been prescribed it atleast.

You do have to wean off the Fentanyl patch - it comes in 12mcg, 25mcg, 50mcg, 75mcg and 100mcg so wherever you were at dose wise you just work your way down.
11-09-2009, 09:57 AM   #105
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Location: Maidstone, United Kingdom
my mum has crohns (diagnosed and operated 32 years ago), and was given codiene phosphate for the first few weeks and was told that if she couldnt do without in those first weeks then she would never come off it, and 32 years later she is still on it, although the dose has been slightly lowered (self prescribed)

[email protected]

Diagnosed with crohns July 2007
Resection September 2009
12-30-2009, 08:11 PM   #106
Join Date: Dec 2009
I take 2 endocet every 8-10 hours for the horrid spasms and pain.. I'm trying to space them out and get off of them... To have to take these meds is as bad to me as having to take Humira. They offer nothing but a temp relief from the pain - but nothing more. I can't wait until I have no reason to take these meds.. however, I also realize it's rather inhumane to be in agony with no relief, I'm not into being superman.
01-17-2010, 01:40 PM   #107
Hi..I'm 65 years old, still working and trying to stay active. Had Crohn's since 12 years of age.
Two bowel resections. Surgeon tells me no further surgery possible. I guess I'm close to "short gut syndrome" On Humira and Pentasa, but still much gut pain and diarrhea. I can hardly eat anything without pain starting about two hours after eating.
Been suffering pain for many years. Finally my GI doc relented and gave me Vicodin-5. Now seeing my GP for pain control. Taking Vicodin-10 3 x day for pain which is barely holding it.
At my age I don't know how long this is going to go on.
Is it bad to be taking narcotics long term at my age? I still have to work and function in lift.
01-17-2010, 02:23 PM   #108
Crohn's 35
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Join Date: Oct 2009
Hi there Supersabre welcome to the forum!!, have you tried Remicade??? I think it is a stronger drug than Humira, I was on Humira for weekly shots and peter'd out. I have had two resections, about 2ft gone but going to find out if it is possible for a 3rd surgery as all meds have been exhausted.

As for being on pain meds, not good long term, liver problems, constipate which can hurt more and of course addiction. I know it is hard but we all want relief and at 65 you must be worn out from it. I have had crohns symptoms for 30 years. Sometimes you dont know what to do. From what I was told it is supposed to be a young persons disease....well so far that aint so true for me. I wish you healing hugs and you find relief with a maintainence drug to help you get through. When do you have a Gi appt?

Take care!
01-17-2010, 07:43 PM   #109
Thank you Jettalady...
I took Remicade for almost five years with great success, but it stopped working a little over a year ago.
We tried 6MP several years ago, but got a god awful case of pneumonia and had to discontinue it.
Yeah, I'm kind of worn out dealing with CD for so long. I just want to keep some kind of decent quality of life because I do have a life to live. So I figure if I have to take pain meds to stay somewhat free of pain, I should take them.
On the addiction issue I'm conflicted. Do I suffer as I did for so many years, or use pain meds and possibly become addicted? I have that Puritanical guilt thing about the pain meds which constantly bothers me, but on the other hand I don't especially want to be in almost constant pain for the rest of my days.
What's right?
01-17-2010, 07:51 PM   #110
Crohn's 35
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Join Date: Oct 2009
I am with you! It isnt good to be on them but perhaps there is another alternative. A good idea so everyone else on the forum can see you are a newbie, go on MY Story thread and post your story, that way everyone can welcome you and give some advice from their point of view. This is a very friendly forum, maybe they just dont see your posting on a older thread. Tell us your full story on your own Post! Glad you found us.
02-01-2010, 10:41 AM   #111
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Join Date: Jan 2010
my daughter is heading to the childrens hospital for her scope tests this month but they changed her meds to a lower dose med pentasa (not doing anything for her) she is now weined off of the entocort which she was getting headaches from but the pentasa does not seem to be doing anything for her she also has severe joint pain that tylenol does not work for she is only 15 i don't want to go to harsh on meds we have been getting a homopathic pain killer that i don't think is doing too much but we are looking at adding some codine if it will work so she can go to school more she tried the marajuana route helped with headaches only but she does not seem to get them much since quiting the entocort. the joint pain is a real hinderance to her i am thinking the doctors will be changing her meds again when we go later this month.
02-01-2010, 10:47 AM   #112
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So sorry your daughter is having problems. I am surprised she got lowered doses. She maybe need to see a Rheumatologist to help with the arthritic pain. Headaches could be from Pentasa, I am on them and I dont have that problem. Could be something else. When is her scope and what Country are you from? Best of luck for you and her.
02-01-2010, 12:04 PM   #113
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Join Date: Jan 2010
We are in BC canada her dose was lowered because she initially seen an adult specialist and was referred to the childrens hospital she was getting the headaches from the entocort which she is weined off of now but the pentasa does not seem to be doing anything for her. i have a call in to the specialist and hope that they will be able to help with the pain she is in but that can take time too i had called last week about a test she is supposed to get done closer to home and have not heard back about that yet. so i am off to the pharmacy to get her some tylenol with codine and see if she can tolerate that. thank you jettalady just frustrating trying to get this under control.
03-02-2010, 09:46 PM   #114
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Join Date: Mar 2010
Location: Chatham/Kent, Ontario
Ive been living with Crohn`s for 35 years now and could see how some people could become tolerant and eventually addicted if not carefull in using them. I myself have tried numerous pain med`s over the years and currently take 20mg of oxycontin 3 times daily,percocet 2-3 times daily. I see my doctor regularly and have blood tests done every 3 months.
03-03-2010, 12:26 AM   #115
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Join Date: Feb 2010
Hello GNC Crohn's Man..
I liked your post..
It was the whole fact about addiction what you posted.
Thanks for sharing it!!!!
03-18-2010, 10:24 AM   #116
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Join Date: Mar 2010
Wait wait wait I'm confused. So are you not supposed to take pain medication when you are having a flare up? It can make your intestines explode? Why did the ER doctor not tell me this?!!? When I have flare ups the only thing that gets me through is hydrocodone.
04-18-2010, 09:02 AM   #117
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um ok so i feel like absolute crap for the past 12 hours. im thinking that my system is COMPLETLY rid of the fentanyl now, i took off the patch on wed and supposedly it takes 34 ish hours to completely dissappear.

the past few days have not been great, crawling skin/spasmy legs and such, hot flashes and cold sweats, etc. but over night my leg muscles ACHE so much, nausea, headache, and most worrying a fever thats gone up to 102.7. i seriosuly feel like ive been hit by a truck

i know all these things can be symptoms of withdrawals, but i guess im hoping for some reassurance? anybody have any expereince coming off this crap after prolonged use? how long do the withdrawals last? is all of this to be expected?

if anyone has any thoughts, thanks a bunch!
04-27-2010, 08:35 PM   #118
Join Date: Dec 2009
hang in there kello.. you were on a serious opiate for a while, it will take your body a few weeks to start "creating" those endorphins again.. the perco's will help, in that they will taper you. you should talk to your doc about a better taper, since going CT (cold turkey) is not the best idea. If you're on those opiates for longer then a few months, you will become addicted to them, there is no way around the problem. The doc should help you taper down to manage the withdrawal.

therein lies the problem with these drugs, they are awesome in helping us live a somewhat normal life while we are in a flare or surgery, but getting off them is just a nightmare.

I recently had surgery to repair a hernia that was operated on in 2009, since the first one burst and I needed to get it fixed, again... love these surgeons.

I was in a flare for most of 2009 and I was totally against having any surgery until I felt better. I had it 6 weeks ago, was on those meds for 4 of the six weeks, had some complications with infection (we crohnies are 1000x more susceptible to infection due to the drugs we take), and have been on and off them.. Every time I stop them (or run out), I get the creepy crawlies, cravings, etc for 3-5 days, even at a low dose like vicodin or norco.

Good luck.. you'll feel better in a few weeks and talk with your doc about a better taper.. might help.
05-26-2010, 05:00 PM   #119
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Join Date: May 2010
Location: West Orange, New Jersey
Greetings. I read a few Posts about "Addiction" and Pain Meds but my experience has been that once I put my TRUST in the right Pain Management Doctor and I follow his or her specific instructions and comply with the Rules of the Practice - they help me manage that VERY fine line of "Dependency" vs. "Addiction" which we chronically ill patients often find ourselves.

I've had Crohn's Disease for 25 years and I've written a critically acclaimed Book about it and I also recently posted a Video on You Tube regarding "Pain Management" and "How to Select a Pain Management Practice that is Right for YOU and YOUR LIFESTYLE." Apparently, I am not allowed to post Links yet but you can contact me directly.

I've always looked at it this way: The Crohn's Disease changed my life in so many ways that if there were a way to "get back" some control - I was going to do so. Well, seeing a Pain Management doctor helps me do that. Other people feel differently but I don't see the point to suffering so long as the Addiction aspect is regularly monitored.
05-26-2010, 05:18 PM   #120
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Join Date: May 2010
Location: West Orange, New Jersey

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.

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