Teen, Crohns and drug use- horrible combo

[crohnsmomma]

This is a hard post to write. I am really unsure of what to do. I have a 16 yr old who has Crohns disease. The Dr's say it is mild. he lost 70 lbs and has not been able to go to school for months. He has severe pain after eating- so he won't eat or eat, then throw up because it is unbearable. We have seen several Dr's adn they don't seem to care. They tried steroids, iv inpatient and oral and a couple of other rx's- none helped much-and they just say- oh well, come back in six months and we'll see how he is. Great. Six more months of pain and bathroom issues and my son getting weaker and upset.
I found out he has been taking opiates and pot. He says he tried it and was able to stand the pain after eating- so he could eat and keep food down once a day or every other day. He admits doing it and that it is a problem. My first thought- ok he needs to go to re-hab. My concern is that in rehab they will naturally not listen regarding his pain- they will obviously think he is drug seeking, faking, whatever and if there is a complication it could be serious or even life threatening if they ignore him.
I just don't know what to do- I know he was desperate from being in severe pain and so hungry all the time- but I also know he can not continue to take these drugs that are not prescribed. The pain came first- he has had it for a long time- so I know the pain is legit. The Dr's just ignored his pain and made him feel like it didn't matter- which I hate because, yes, severe pain does matter and I feel they should have taken him more seriously. I am also concerned that him getting treatment for this will make it so Dr's won't prescribe pain meds in the future if he needs them and he will suffer horribly.
I am at a loss. I want to get him help - but am not sure if I should wait and try to get the crohns more under control first or what.
Has anyone had this experience of severe pain after eating- and what can be done to help? Is it dangerous to put him in a rehab with his crohns condition? I feel so bad- like I should have pushed the Drs to help more- but they just wouldn't listen to our concerns or offer any other treatment options. I just want to help my child- with his pain- and now with his drug problem. I am afraid for him- he seems like he is depressed and just sick of living in pain. I fear for his life at this point. Any insight into this from the point of view of someone living with the pain of crohns- or experiences with treatments to help the "pain after eating' part would be appreciated.

 

[happy]

crohnsmomma,
I am so sorry to hear that you and your son are going through this difficult time right now.

First, I would get some help for his mental health right away. Is there a counsellor at the school that he was going to that you could call? Is there a 24 hour Help Line that you can call? You and he need someone to talk to right away.

Then I think that you need to find an IBD centre that treats adolescents and give them a call. Don't stop asking for help until the right person gives you the help that you need. Keep calling, be polite, but persistent.

I would then call a rehab centre that specializes in treating teenagers and ask them for advice regarding his drug use. I don't think that you can expect him to manage rehab with his poor health due to the Crohn's.

You are doing the best that you can. The health system is supposed to work and it is supposed to help you when you are sick. The system has failed you and your son in the past. Now, you need to keep advocating for your son until you get the help that he needs. Then you'll need to find some support for yourself from a parent group - it's going to be a long haul.

May the right people and resources come to you when needed.
Good luck on your journey.

 

[Guest]

hi there... i agree with Happy's post above, shout for help in every direction you can think of..

you can also look up on the net to see if there's a Crohn's support group in your area, like NACC.. and i would strongly consider changing hospitals/consultants too.

your son's predicament with the eating/pain/not eating is exactly the state i was in when a teenager, suffering with Crohn's and undiagnosed due to incompetant doctors. i decided that because it hurts when i eat, and nobody's helping me, i'll just stop eating... of course i went downhill fast, got diagnosed with anorexia, and was very depressed... i think if i'd been in touch with anyone in the drug or alcohol scene at that point, i could well have turned to a crutch like that, as your son has... it's desperation - and he should not be in that position where illegal substances are his only solace. there is so much out there in the way of Crohn's treatment - you just need to find someone who'll take his symptoms and his mental health seriously.

good luck. please let us know how things go.

 

[Mizz Lozy]

Hi crohnsmomma
Im 20 years old and i was diagnosed with crohns disease when i was 8.
I too had/have the same problem when eating food when im having a flare up, the pain is undescribable and unbareable and i could go days without eating just to avoid the pain. As for the drugs, if iv read correctly on the research of opiates its a morphine based drug?
The worst thing is for him to be taking it when its not prescribed especially if he has an overdose and its leaves the questions for the doctors and police (if get involved) on how it got into the hands of this young teen. Im on a Morphine based pain killer called Zydol S/R (tramadol) but its prescribed, im allergic to codiene. I definately think that you should take some action against this matters that you have talked about. My mother was in a similar situation as you with no dr's wanting to care or listen, and she took action and demanded for tests to be done and have anything and everything done to prove it was crohns disease as it is common on my dads side of the family.
You are not alone and neither is your son, always reassure your son of that as i know that its important especially at a young age.

Goodluck
-Lauren

 

[lamor32twigs]

So sorry your son and your family are having to go through this.

Like you have stated I am afraid that a rehab center may be quite a battle because of his delicate health status. They probably won't understand that he has true pain and that his behavior is not drug seeking.

It sounds like he possibly needs a better GI doc that truly understands that any meds he is on are not working for him and until he gets his crohns under better control does her really have a chance and getting off illegal medications that help with the pain.
Thoughts and prayers for your family.

 

[ameslouise]

Crohnsmomma - So sorry to read about your troubles. I can see from your words that your heart is just breaking.

I think Happy about covered it all. But I would stress that you definitely need a new GI doctor! To send a kid away in pain and "see how he's doing in six months" is reprehensible! Get yourself to Boston to find a serious GI doc!

He can be on pain meds and have it be managed - they should be prescribed like Miss Lozzy says so he can be under the supervision of a doctor and make sure there are no dangerous interactions.

As for rehab, I have watched a million episodes of Intervention so I like to think I am an expert!! I have seen episodes where the addict is in legitimate pain, and the rehab works with them to find a way to manage the pain responsibly with the right kind of drugs.

Good luck - please keep us posted.

- Amy

 

[Jennifer]

Many people have to go out of their way to see a good GI doc. Mine was 4 hours away when I was a kid. His pain needs to be taken seriously and when he does get pain medication, sadly I think it would be best if you held onto the pain meds until he gets his addiction under control.

I'm curious though if he really has an addiction to the pain meds in the first place. He may simply be taking someone else's prescription to help with the pain and may not be taking it to get the high some people get from that drug.

The marijuana I'm not too terribly worried about because it does help with pain and increases your appitite which are both good for Crohn's but sadly its an illegal drug at the moment so its seen as taboo and as a parent I'm sure that scares you. I'd be more concerned about the opiates if it truly is an addiction. I'm not saying that he should keep smoking weed, I'm just saying that he's gonna be ok but for now should get his pain managed another way.

Can he handle rehab? If he has the right GI doc, then yes he can. Stress is a huge issue with Crohn's but the stress is going to be there in or out of rehab unfortunately. Again though, I'm not even sure if he needs rehab. Saying that may make me sound like a horrible person but I've known a lot of people who get sucked into drugs and some of them needed rehab and some did not. Experimenting is normal but if your child truly feels that its out of control, even if his pain is properly managed with a new GI doc, then rehab may be a very good idea.

The best way to handle pain is to stop the cause of the pain. Turning to prescribed pain pills is not the answer but can help for now. What he needs is a doc that manages his illness through the proper medication so his illness is treated properly. That will take the pain away, then you can deal with the addiction. What medication is he currently taking? Taking nothing when you're out of remission is not a good idea.

 

[Lydia]

Pot was a God send to me, and I could not have graduated college without it. (With near honors I might add, in science) I would not be concerned with pot, I would how ever worry about the opiates, especially if they are not prescribed by a GI as they are extremely addictive.

I dont know if there is medical marijuana where you live, but try to get him on that and off the opiates. There are studies that show marijuana relieves both pain and inflammation related to crohns. So it is helpful in dealing with this disease.

 

[krbsmom]

Would LDN be a good treatment for him? asking other crohnies that might know more about it than I.... Didn't that med first get used to treat addicts? IF so seems like it would be the perfect solution if it works for him, it would treat the crohns and the addiction...maybe???? I don't know worth asking though i think

 

[Keona]

Crohnsmomma

just want to say I can relate to your son... a lot. I self medicated b/c I could not get any help from the doctors. I had to go to an agency and have them go in with me - the doctors tend to be a little more accountable. I am only now (3 years later) getting help.

I did not use opiates - but smoked copious amounts of weed. It worked (so I thought) and gave me an appetite. I am now prescribed an opiate (dilaudid) - which works on the pain somewhat but not the appetite/pain after eating. It stops the pain enough so I am not in agony but I am still very aware of it. I am also able to work with a dietician this way - keeping a food journal to get a sense of any correlations to time of day/foods/pain, etc.

Your son is masking his symptoms - putting a band-aid over it and it is just going to continue to fester.

There is a difference between using opiates for pain and using opiates to get high. I dont get high from the dilaudid. The only way I know I am taking it is the pain is cut in half.... he needs a controlled amount - but it sounds like you are well aware of that.

In order for me to have gotten the help though, I needed to take some health care professionals in with me to the doctors to advocate for me. Can you get in touch with a psychologist who would be willing to go in with you and your son? I find doctors have a lot of power and I really felt the power imbalance.

I use to work in a drug alcohol treatment centre for women and they had a strict policy that they could not take any drugs what-so ever..not even a regular tylenol or prescribed medication. They are all different (look for a rehab that uses a "change model" as opposed to the 12 step model... or uses both - if that is what you decide to do.) He may need medical help getting off the opiates - you could try your local detox centre as well... if they take adolescents. If not, they would know the best referral.

Hang on to hope though... I have griped and complained on here for over a year and everyone on here were great and encouraging and supportive... I am FINALLY starting to get answers/help now though. I almost regret being honest with my docs by telling them I was smoking weed to cope - hang on to any test results (i.e: I had two abnormal MRI's) and keep repeating that he is not drug seeking....he is doing his best to cope and survive.

Hang in!!! If it were not for this forum I would have given up long ago!! It was amazing how the doctors listened when I took a health care professional with me to one of my appointments. If they don't listen at the first one...go to another until someone listens!!

I dont know YOUR right answer but this is what worked for me.
(P.S - I traded the pot in for a controlled amount of dilaudid and weekly appointments. I now have surgery scheduled for April 5th). I am hopeful.... and never thought I would ever get any help!
Hang in... your son is trying to cope the best way he knows how...

 

[Dexky]

Welcome Crohnsmomma, I agree with most of the advice you've been given especially Crabby and Keona's. The first thing I'd seek is a second opinion about the severity of his crohns. It doesn't sound mild to me!! Good luck to you!!

 

[vonfunk]

I agree with many people here. marijuana does contribute to me being a productive member of society. It helps with a great deal of the side effects that come from IBD.

Opiates on the other hand not so much. They do have their place in a controlled environment, but through self medication. You can OD on opiates, not on marijuana. Worst case scenario with pot is that you watch a lot of cartoons and gain 20lbs because of the munchies.

 

[ThatBeerGuy]

I am so sorry to hear not only about your sons pain but also yours. I have also struggled with addiction and crohns. I know it was a big shock for him to tell you, but it is also the first step to recovery. Talk to your son and find out how long he has been taking Opiates. Next is to find out what kind ( if they are a perscription type or street drug ) If it has been a short time and low doesages talk with his Primary care Doc. there are many options to out there to help. As for Medical use of Canaboids, it is the only thing that has helped me keep foods down. It also helps with the pain and inflamation. There is a whole thread about the use of medical pot and it might help. Ask one of the moderators for the password.
As for Doctors I agree with all the others. Its time to find a pro-active GI that will give your boy the care he needs.

 

[Jessica]

I'm very sorry to come across this post. My heart goes out to you and your family.

My older sister is half-way through her 2nd rehab attempt with opiates. Her use stemmed from RA.

My younger brother is still in the closet about his opiate/pot addiction. He is in the middle of having tests confirm that he, too, has Crohn's.

My only suggestion, as we're doing with my brother, is to get him help for the Crohn's. Any rehab attempts will not help if the pain is still there. And, from listening to my sister's professional rehab stories, it would only hurt your son by going there before having his Crohn's under control.

Please PM me if you need anything.

Jess
<3