Lost With CD in the Big Apple

Dear Crohns Forum.

I'm a 31 year old guy and currently live in NYC. Forgive my long story, but if i can find some help myself or help someone else, it'll be worth it.

When I was 8 years old, I was first diagnosed with Crohns disease after multiple undiagnosed flare-ups and then the full gamut of GI testing.

I've been on plenty of medications including Sulpha meds, Prednisone, Lialda, Librax, 6mp, prescription loperamide, suppositories, and Remicade. I was on a feeding tube for a while when i was in my mid-teens and desperately underweight. I was always on the border of hospitalization and surgery, but thankfully never had to go through that part.

It was lousy to be sick all the time, to have to run out of class 2-3 times, to be picked on... the whole bit. But I made the most of it, excelled in my studies, graduated toward the top of my class, thrived at one of the top universities in the country, and ended up in my chosen field. Every day was a struggle, a challenge, an embarrassment at times. Every commute to the office I would hope I could make it (and it was only 15 minutes!).

I fought, and fought, and fought. And then. I stopped fighting. I remember sitting in the conference room that day. I had gone to the bathroom beforehand, and it was only 10 minutes in, but, yet again I had to leave to go. I didn't make it... and i just couldn't take it anymore.

I was 25, and I was leaving a career path that I had wanted since I was 15. I left that job because the stress was so high that I felt sick most of the time, and my doctor refused to treat the anxiety. And I left that job because I was dealing with the same pain, the same urgency, the same depression, that I had been for my whole life, and I didn't know what else to do.

I think I was so confused that I thought a change of environment would make a difference and I moved to New York. Maybe I thought the doctors would take a better approach?

But ya can't run from Crohns disease, and I went through the same cycle of stress instigating symptoms with no real solution (remicade + lialda + even the addition of librax didn't seem to help much with that).

The same scenario occurred that I had in my previous job. I couldn't deal with the stress and the symptoms combined, and after a period where I was able to work from home for a while, I was laid-off.

Well, that only made things worse, and finally I turned to street drugs to help with the pain and anxiety that my doctors never had. At the height I was taking 60-80mg of Oxycontin a day, and smoking weed about 8 times a day.

Well, of course this wasn't the answer either although it was a wonderful vacation from the pain and stress for a while.

After nearly a year of addiction, I managed to quit the Oxy on my own after a couple of efforts. I'm not perfect, but now instead of dosing multiple times a day, it's at most a 1-2x a month thing. I haven't been able to quit the weed.

To be honest, i felt more productive on the Oxy than I ever had, although this may have been a delusion and I was obviously also more physically and mentally dependent on the opiates than I am on the weed.

I am currently supported by my parents under the guise of a family business while I am trying to start my own technology business with a friend. I smoke way too much weed and I'm afraid that despite my best efforts, the motivation killing nature of the weed is going to end the business before it has a fair shot.

I went to see a shrink who didn't seem very understanding and just wanted to put me on an SSRI. I tried it for a few days but quickly noticed the side effects and decided to stop after less than a week because I wasn't sleeping.

So, right now I dunno what to do. I guess my first issue is to stop smoking weed, but it's not easy because I've trained myself to respond to pain by smoking. I wish there was a place that could look at the full picture and really help better with the pain and anxiety I fear as I try to live a healthier life.

-SF

Hi there, welcome to the forum.. you have had alot on your plate at such a young age. I understand your addictions, even though I dont have any addictions, ok,,,, maybe food lol.. but you are trying to run away from the disease, like alcoholics drink to forget. You have to fight for yourself, because no one else can. It wont be easy but if you take it one day at a time and focus on something positive in your life and get your disease in control. Pain meds are only a temporary mask, and you need to be on something to control it so you are not dependent on drugs.

You have our support, and you need help, you are brave enough to come to us and tell all, you are brave enough to lick your addictions. Hang in there , keep us posted, lots of people here to help along the way. None of us is perfect ok.

Hi SF,

I can totally relate to your story. I have Crohn's disease. But I also have the disease of alcoholism. I've been sober for nearly 12 years.

Pen is right. I'll be more direct, you are probably running from life because you haven't developed coping skills and emotional maturity. Your story tells me this.

At a relatively young age you started using what seemed to be the easiest "escape route" that seemed to aleviate some of your physical and emotional pain. Probably because it's not easy to find the support you needed. Oddly, I've seen instances where people I know with Crohn's disease use "weed" - AND IT WORKS! Weed also helps clinical depression. There is loads of written material that will attest to this.

It's a actually a pretty useful drug, in reality, but it hasn't gained acceptance in the corporate world. I can never fault a man or woman because they use weed because life can be pretty hard. But for me, weed is not a choice worth seeking.

I use the help of a 12-step recovery program known as Alcoholics Anonymous, and over time, I learned how to develop those coping skills and emotional maturity I said that you're probably missing. I didn't start learning how to cope or become emotionally mature until I was 40 years old with a 9mm pistol to my head. My friend, that is where addiction will lead you.

The bottom line is I realized that everyone faces physical and emotional pain. I'm no different. I enjoy being sober. I can still dance, go to clubs and drink diet coke, mingle and flirt, blast my car stero, blast my home stereo, listen to Pink Floyd and honestly enjoy it...the list goes on. I'm comfortable in my own skin. I don't have a need to get "high".

But there are a couple activities that honestly produce an incredible euphoric feeling for me. I do feel quite the buzz. One is working out and the other is sex. I'm so used to being sober, that when my own body produces endorphins and other brain chemicals at higher levels than "normal", I can feel it. And I've learned to enjoy it - it lasts a lot longer, and there is not a single side effect. I don't wake up with a hangover either.

I've traveled the path you've been traveling. There is a safer easier way, and most of the time life can be pretty darn enjoyable. But it takes a decision to become willing to try something totally different, and to follow that decision with constructive action. That's because a decision without action isn't anything more than a daydream.

I'd also say behind everything that you're hiding from is an insecure and fearful young soul. It's someone who didn't have much of a choice to be here, but he's also someone that deserves a sporting chance to help you live in a way that is helpful to others and enjoyable to the man within.

Give yourself a chance my friend. You might find that you deserve a good life, and that you might have been selling yourself short until now.

hang in there

Prior to being diagnosed with crohns i was an addict. through the help of aa and na i was able to quit. i was just recently diagnosed with crohns and have realized that alot of the things you learn in aa or na can help you in dealing with a disease like what we have. just like you cant run from being a drug addict you cant run from your crohns disease. there are many times i get depressed and bummed after my diagnosis but i am finally realiziing the weaker i am the more likely my disease is going to consume my life.

Hi welcome to the forum,
I respect your honesty SF (and regular joe)
I won't try and give you any advice, as I have never struggle with addiction and I'm not going to pretend I have any idea what you must be going through.
I just hope you can find some help that works for you.
In the mean time, this is a good place to vent and find support.
Take care
M

Thanks guys.

I guess this is a step in the right direction.

The thing of it is that I've coped with many a negative situation without turning to drugs my whole life. It's hard to say I never built coping skills...

I mean, even coping with regards to Crohn's iteself... If I wasn't coping, what was I doing throughout school, and through 4 years of the first job and 2 years in a second? Every day of those jobs I had to cope and i did so without drugs.

I didn't need it before, but so much of the time I was "coping" with not going to my prom, or running out of class, or being late to an important meeting, I wasn't happy. I had physicial symptoms and mental depression from CD.

The drugs do help with the former, and although getting off the pain meds was no fun at all... there's a part of me that doesn't really regret having some time when I didn't have to worry about finding bathrooms on a 5 hour road trip.

I do feel like the weed is holding me back. But at the same time, no matter how you look at mental/emotional coping skills, it was the physical symptoms of CD forced me out of meetings and classes to spend time in the bathroom.

Hopefully the therapist can help me work this out. I just think it is only natural to turn to any available option to try to feel better physically when nearly 20 years of treatment didn't seem to get me anywhere.

Hi NYCIBDGUY!

I'm glad you found us! I'm sorry to hear what you've been dealing with though. Crohn's is very difficult on it's own, to add the disease of addiction on top of it...I understand why you are searching for help.

You said you wished there was a place that would address not only your addictions, but your inner self, well there is! I would say, if your therapist isn't working for you, PLEASE don't hesitate to find another one! The first rule in counseling is to develop a trusting relationship with the client. Sounds to me like this therapist doesn't have that and no wonder you are not benefitting from it. That doesn't mean it is your fault. Therapists all have their own philosophy of treating people. Sometimes their style is not what is best suited for treating certain individuals. A good therapist will adapt and use another type of counseling if the client is not benefitting.

I understand that there are people who need certain drugs to deal with their diseases, but not every individual needs that. I find there are many psychiatrists who are quick to write scripts for their patients rather than get to the core of what's wrong. Drugs don't fix problems, they just hide them. For someone who deals with addiction, the therapist needs to be sensitive to the fact that you are already dealing with the use of substances to, in a sense, "treat" yourself.

This is why I am a big believer in counseling as opposed to a psychiatry. Counselors don't have the license to write scripts. There is actually a specialized area of counseling called Addiction Counseling. These individuals are trained to deal not only with your addiction, but also the person's inner workings whether they feed the addiction or are a result of the addiction. It's called comorbidity - when a person has more than one disease like addiction and Crohn's disease and even depression. They start by treating the disease that needs the most attention first and work from there.

In addition to seeing a counselor specializing in Addiction counseling, it would be helpful to go to support groups like Narcotics Anonymous. You can find their website online at www.NA.org and find the closest support group to you. To get the most benefit, you should attend in conjunction with counseling, I believe.

I hope some of what I say is helpful to you and perhaps encouraging. I am not a doctor, so you do not have to listen to what I say. I was studying to become a counselor before I got diagnosed with Crohn's disease and one of the last classes I took was in Addiction Counseling (though I am not trained to practice). Please know you are not alone. Like Crohn's disease addiction needs the same amount of care and attention and good doctors to help you with it. IF your GI wasn't helping you with your Crohn's, you would find another one. Do the same with your therapist!

Anyway, keep us updated! You've got a lot on your plate. I wish you the best.

Hi IBDGUY
and welcome

I've been around addiction for a long time too, so can empathise. (pot and alcohol) and I think that the first step is admitting that you have a problem, and I can only congratulate you for that!
The next step is finding the strength to beat addiction, whether thro NA or any therapy you decide, and I believe, in my own opinion, that self esteem and confidence plays a huge part. There are many of us who have had the very soul sucked out of them in one way or another, and these 'soul suckers' have a lot to answer for, so the only way to move on is to try to forget the past, it's so over! and look forward to the future.
In order to do this, you'll probably need a programme and what worked for me is Cognitive Behaviour Therapy, which basically changes the way you act by changing the way you think, and vice versa, by 'chunking' each problem into small steps and dealing with each one head one, this gives you focus and can be challenging. If you need any help with this, just PM me.
glad you found us, there are lots of support here, do not suffer alone, and let us know how you are from time to time, take care
lotsa luv
Joan xxx

I agree with you.

"Coping" with life, and it's devastations is not an easy task. I'm not saying you don't have coping skills or the ability to cope. But addiction and recreational drug use affects critical areas in our brains, in particular the "frontal lobes". This is where our boundaries and inhibitions reside.

Also, running up against unhelpful people throughout childhood, and also in life today does, like you said, offer few alternatives. It is natural to turn to other options, exactly as you said. In particular, marijuana. This "street drug" has verifiable clinical benefits to many people who are sick, including those with Crohn's disease and clinical depression.

There is a difference between smoking weed for the clinical benefit and smoking weed to escape, or "take a vacation" from the problems in life. I don't know where the "line" is between clinical use and recreational use. If a person doesn't have an addiction to alcohol or pain killers, as you said you had, I'd be prone to advocate using weed to relieve symptoms. It is quite honestly a shame that the corporate world has sidelined an effective clinical alternative such as using marijuana for the clinical benefits.

The problem with coping skills and emotional maturity enters because the way you or me coped as children and adults was probably the best we could. But to develop constructive coping skills that lead to living life to it's fullest requires hard and painstaking emotional work. It takes "re-inventing" oneself. Emotional maturity also develops and strengthens through discipline. Discipline is how I learned to love myself enough to stop harming myself through addictive abuse.

I know what oxycontin is. i know how much it sells for on the streets. Your addiction of 60-80mg a day combined with the weed buzz probably costed you maybe $650 - $1000, depending on the availability. Oxycontin is very hard to come by, and it ain't cheap. ANd yes I know all about vicatin and percoset, and the street prices...blah blah blah.

There is a physical and emotional cost of addiction and abuse. You have damaged your brain...specifically the part where your "pleasure centers" and inhibhitions are processed into action. This directly impacts coping skills and emotional intelligence in a negative way. You can find countless writing that will attest to this as being a clinical fact.

Counselling is a good. Crohn's disease is most definitely an unpleasant condition that most executives will not usually tolerate. I've had to make lifestyle changes that are not fun or easy. I agree Crohn's disease forced you out of meetings and into the bathroom. I understand this disease because I have it, and it has given me nothing but unpleasant problems at work.

Crohn's disease does a lot of devastating and negative things to it's sufferers. But it doesn't force me to drink alcohol, and it doesn't force you to smoke weed or become addicted to street drugs. Under-developed coping skills and stalled emotional growth does that. Like Donna M. said, her addiction support and therapy gave her constructive coping skills that help her cope better with Crohn's disease.

You're welcome here. I hope that we can help you to seek and find effective treatment. 20 years of suffering without effective treatment can't be fun, and I'm sorry you haven't been able to find it yet. Don't stop trying or give up on finding the right GI or treatment. There's a whole bunch of us here with many experiences that might give you some hope, some direction, and a feeling of comraderie.

Hang in SF. We're here for you.

Yah... i don't doubt that I caused mental damage over the yearlong addiction to pills. And yes, at the height i was spending in the neighborhood of $1000 a month just on the pills.

I realize that although people have far more severe addiction issues, I have a substance abuse issue that needs to be addressed.

I'm not sure that I am ready for the full on NA meetings just yet. I would need to research the local ones. I've heard that in some places NA meetings are places where people meet other users and just get themselves into more trouble. I'm sure as with most things, NA is what you make of it and i would need to be in the right mindset first to accept it.

For the short term, I think one on one therapy and finding another therapist is the direction I'm heading for now.

I do appreciate all your input. It's funny because it's just as hard seeing others write addiction in posts as it was to actually admit it to myself for the first time. I'm SOOOOOO tempted to say "BUT... BUT... I'M NOT REEEEEEALLY AN ADDICT!"

But then who would I really be fooling...

Thanks.

I can understand your concern about finding other users at a group like NA. I know there are certain groups (not sure if it's all types of addiction support groups) that discourage members from "hanging out" afterwards and are careful about the personal information of members to avoid things like that from happening. Also, when I attended some AA meetings everyone was really friendly and seemed like a big family with how supportive the atmosphere was. They never once pressured us to participate or talk if we weren't comfortable doing so.

But you should definitely go when you want to and when you are ready. Each group is different (among groups dealing with the same addiction as well!), so it may take several groups to find one you really like and want to belong to.

I'm really glad you are going to find a therapist that takes your needs seriously though. You will get the most out of your counseling when the issues YOU deem important are worked on rather than what the counselor thinks should be fixed. Change doesn't happen if we are forced into it

SF,
Astra said a lot of what i was going to say (including knowing what being around addicts is like). I hope that you can find a way to get yourself through this bit by bit. Coming to this forum is a great way to start!

I just want to say welcome, and well done for telling your story - that takes guts.
No platitudes, no words of advice - except stay a while....I think you'll find the support you've spent so long looking for.

We're all in this together.
Tracey.x