10-13-2008, 10:14 PM   #1
Jonhenry
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New here, looking for help

I've had was diagnosed with Chrons disease about 4 years ago, I'm now 25. It has always sucked but lately it is taking over everything. I haven't ever been in forums like this, so I don't quite know how to format this..so here we go.

On May 31st I had my worst flare-up yet. I passed out on the toilet with bloody diarrhea and was found by my parents later that morning. 3 days in the hospital, I'm sure you all know the routine. Took me took me all summer to even be able to start function semi-normal again.

Since then it's all just a downward spiral. I've lost nearly 35 pounds since then, I'm going bald on the top of my head, I don't recognize my face anymore, it's very disturbing.

The thing that seems to be making this worse is how it's affected my relationship. I am gay (sorry if I offend anybody) so this disease really sucks for my sex life. My partner of 3 years has been supportive, more at first, now he just kinda leaves the subject alone and lets me deal with it. I found out that he's been going elsewhere to meet his needs, which he denies. The stress is making it worse.

I'm in the middle of another flare-up, they've been happening almost every 2 weeks. Usually I can calm them down pretty quick but it is just so exhausting. I lost my job because I kept calling in sick, which I don't miss anyway, but I lost my insurance... I am barely scraping up the money to see my dr. once a month and can't even afford to fill my meds anymore. Depression has set in like never before.

I don't know what to do. I feel like I'm loosing my mind between emotional issues and this constant physical pain. My doc won't give me narcotics and I can't handle most otc painkillers.

I know somebody has to know how I feel. And I keep telling myself that it will get better, but then things just fall apart more. I'm 25 and I feel like I'm 80. I'm too tired to even get out right now. I'm down to that water diarrhea and it's hard enough to stay hydrated and keep food in me. I'm at the verge of bankruptcy with the med bills, etc. etc. etc.

How do you guys deal with this? Where can I find some help. I am literally watching myself waste away and my heart is so broken right now I just don't know what to do. So here I am.

Any advice?

thanks,
Jon
10-13-2008, 11:13 PM   #2
GoJohnnyGo
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Don't worry about being judged here. We'll try to help walk you through things.

You're in desperate straights right now. I don't know what I can say to help you feel better, other than I'm sorry you're going through all of this now.

We all came here for our own reasons. Best advice I can recommend is to stick around. Trials and tribulations? You've come to the right place.
10-13-2008, 11:18 PM   #3
jed
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Any advice? I hope you have good internet connection, you can hang around with us bunch of toilet hogging fools

Welcome Jon, so sorry to hear how bad it is for you at the moment. I take it your from America or somewhere similar with no health care system?, that has to suck…..

Hope some remission comes for you soon Jon, sounds like you could use it.
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Current meds - Methotrexate, the rest werent doing anything.
Current state - hopeing poop softener, honey and cinnamon tea make me poop like a crohnie again..

my story - http://www.crohnsforum.com/showthread.php?t=3093
10-13-2008, 11:31 PM   #4
Jonhenry
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Thanks, I'm just hoping for something that helps, and a way to find it. This site is great though. Incredible amount of good information and people that I can identify with.

Thanks,
Jon
10-13-2008, 11:50 PM   #5
jed
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so have you had a crazy med history as well?
are you on anything at the moment?
10-13-2008, 11:58 PM   #6
GoJohnnyGo
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If it helps any, when I was 24-27 I thought it was the end of the line for me. I'm still kickin' around 20 years later, for what it's worth. The operation saved me and I went on for a good extended run of things.

I realize this probably doesn't help you out in your current daily battles. Maybe it's not so much that folks here can help you out of your current jam, but they can can relate to your situation with maybe tidbits of advice here and there.
10-14-2008, 12:01 PM   #7
Jonhenry
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I have been on psych meds if that's what ya mean. There's a list, like the chrons drugs. Some like remeron to help the intestines and depression. Since I went kinda psyco on a high dose of prednisone I've been on seroquel, and I've been on klonopin for years. I'm up to 3-5mg a day, and I'm what the doctors say "addicted". They leave me on it because it helps does honestly help the pain and makes it easier to go out out of the house without worrying about the things that can happen when you're out in public or stuck in the car. That's why I argue the addicted point. Where's the line between being dependent on something because you are a drug addict or because it actually helps you live "normal" life.

Anyway, got a community clinic to get me a voucher to pay my GI this morning, but that isn't until Dec. 10th. I go see my GP on Monday, cough up some of the last of my savings. She usually just does med checks and orders my bloodwork.

I saw there's a vent section, I'm going to post there. It sounds like a catharsis I need.

You guys are very kind, thank you
Jon
10-15-2008, 03:28 AM   #8
danman
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John, I'm so sorry for your situation.
You've answered a question I've often wondered. How does a Gay Crohnie cope.
Not well obviously.

can we take it from your last post, that your not on any med's for crohns.
You seriously need to see a GI doc. Can you not just turn up at an ER. surely they would have to treat you.
10-16-2008, 11:32 AM   #9
Jonhenry
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I have a GI doc that I see again in Dec. I've been on lots of different chrons meds but right now I can't afford the ones I got, let alone the IV treatments that they want to try on me. It sucks around here to even get to a GI there are only a few in town and they all have huge caseloads of patients. These last few days my parents are wondering if they can get the dr. to put me in the hospital to try to stop this current flare-up, but without insurance you have basically be clinically dying to get past the ER and into a ward. UGH I sooooooo miss my insurance. It's like the golden ticket.
10-16-2008, 11:56 AM   #10
butt-eze
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Jon....

I'm so sorry! I wish I could fix it for you. I assume you have a medicaid program in Missouri. Can't you get on that? I'm sure it's not the golden ticket you are looking for but at least it's a ticket.

This is when I wish we can a medication exchange (I know that would be highly illegal but it sucks knowing that many of us have bottles of medication just sitting in our cupboard that no longer work for us.).

Jon, have you considered looking for a local crohn's drug trial? I'm not suggesting to be a guinea pig per say but I am suggesting there are research facilities testing drugs that we are currently taking?

I have thought at times how this impacts all of our sex lives. However, for you it is unimaginable. Some of us are too sick to want to interact in sex. I wonder how you know that your boyfriend is stepping out. I have always encouraged people who are being cheated on to end the relationship. I'll wait to say that until you give us more details.

Not that I need to remind you, Jon, but there are other ways (when and if you're feeling up to it) to make sure your boyfriend is satisifed. However, if he's cheating...

Perhaps you should look into less expensive ways to obtain your medications. I know of someone who orders their prescriptions through a canadian pharmacy. I'm not sure how she does it but I could find out.

Also, your local CCFA chapter should have a support group. I'd go. You'll feel less alone for sure.

Keep us updated Jonny Boy!

Amy
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10-16-2008, 03:48 PM   #11
MaskdMarvl
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[QUOTE=butt-eze]Jon....

I'm so sorry! I wish I could fix it for you. I assume you have a medicaid program in Missouri. Can't you get on that? I'm sure it's not the golden ticket you are looking for but at least it's a ticket.

John,
Ive been through a similar situation. You feel as if your flushing your life down the toilet. Im no doctor, But surgery is the option that worked for me. Ive been in remission for 5 years now. My Crohnes is just starting to get active again the stomach bubbling, the shits. We all know how it starts. My point here is Medicaid is a viable option its just tricky to get. Im going to tell you how I did it.
After multiple visits to the ER I kept all my records, and requested to see a specialist on my last visit. After hours go by the specialist shows up. I tell him my story, and plead his help. We talked for hours, and I revealed my history to him. He agrees to help me but on his terms. This is what he did he admitted me on the spot. This was to insure I was under his care. He ordered all the meds that I needed, and kept me comfortable with OXY. We documented all the test, and filed for Medicaid. (now keep in mind you cant be employed that disqualifies you). The surgeon sends a professional letter stating my case to the Medicaide
office. They approve immediately by phone. It was like magic doctors have so much pull. The Medicaid covered me all the way back to my initial ER visit up until my doctor relased me from his care 4 surgeries, and a year, and a half later. They still cover me today because of all that. Next time your in the ER ask to speak to a surgeon. They will help you. Good luck. Keep your head up bro. Your better than Crohnes.
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What a pain in the ass !

10-16-2008, 03:54 PM   #12
MaskdMarvl
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Our healthcare system in the states sucks for sure, but there are loop holes in it. They just make them hard to see.
10-18-2008, 07:03 AM   #13
Jonhenry
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I dumped the bf and I'm moving back home with my parents. I know it's not the answer to my stress problems, but it will help the money situation. I see the GP on Monday and I'm going to ask her if she thinks I could get any gov't benefits. I also read about getting meds for free from the drug companies if you qualify. I guess there are some advantages to being stuck in bed with a laptop.

I wish we had an advocate or something. It's a pain trying to keep up with everything and take care of myself when I'm hurt and tired.

I do think this flare up is calming down. I've done nothing but basically sleep and be lazy the past few days, drink my nutrition drinks, the usual routine. I'm dreading and going and getting my stuff from the ex's house, but it should be pretty brief. I spent part of the other day at work there packing so it's pretty much a shuffle job.

I don't tolerate cheating in a relationship. I don't like to be in a relationship that gives me alot of inner stress.
10-20-2008, 09:29 AM   #14
Joe
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Man, I'm sorry to read what you're going through.

One piece of advice about the money problems that may help, save all receipts. from the IRS website : "You may deduct only the amount by which your total medical care expenses for the year exceed 7.5% of your adjusted gross income. You do this calculation on Form 1040 Schedule A in computing the amount deductible. " It wont help for the "now" but maybe you can get some relief next year.

One thing that raised my eyebrow is nutrition drinks, and its all you're having between sleeping all the time. I've recently started reading about diets with crohns, and I'm no expert - but I did read most drinks-that-are-meals are bad for those with Crohns, and hopefully you're avoiding those.
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AH! FLARE UP! FLARE UP! WHERES THE BATHROOM?!? WHERES THE BATHROOM?!?!
10-20-2008, 09:37 PM   #15
Jonhenry
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Went to the GP today, she wasn't very helpful, other than the fact that the GI appointment is moved up about 6 weeks. Put me on flagyl and pentasa until then, she said she really didn't know what to do. I doubt I'll even fill either, I have enough of both here to get me through if I decide to try the pentasa again.

I am going to do the medical tax deductions. Between what I've paid for dr.'s, pathologists, treatments, meds, everything I'll come up in the up and up I'm sure. So I'm kinda pissed about spending the money to go to the GP, and now I will go tomorrow and shed blood (I hate needles still). At least I'll have all that info for the GI dr. when he gets to me. They also gave me a choice of going to the hospital if I can't keep anything down. I'm considering it but just waiting, right now I don't think so. I think the flare-up is calming down due to just what I've been doing, and I might be able to make it until Nov. 12th when I see the dr. If not I will go to the hospital...sigh...

I do drink the equate brand 500 calorie ensure drinks. Usually not during flare-ups, and usually as a drink with a small meal. I've tried 30 million types of diets, and still feel like I'd try another one that sounds good for me. I don't know if the drinks are bad for me or not, it's what they recommended years ago and I got used to them, but I can drink them without puking, they stay in me for at least 2 hrs, and I get some calories that aren't empty. During the middle of a bad flare-up I don't drink them. I go on all liquids usually for at least 24 hrs with constant bedrest, relaxing music, phones shut off, little light, and lots of dark comedy dvd's. It's not for everyone but for a long time it helped get me back on track.

So..I have been getting around easier and with less cramps and poo attacks. I haven't been doing much solids though either. I did my superbland instant potatoes to try to re-introduce solids. I don't remember the brand, they're super generic and cheap, but I make them with hot water and a sprinkle of salt and eat with lots of water. Yet another one of those things that just seems to work, at least better than other things I've tried.

Ok..that was wordy, before I get into a rant on the medical community here I will wrap this up.

Thanks,
Jon
10-20-2008, 10:27 PM   #16
GoJohnnyGo
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Hey jonhenry, I was getting the same runaround today as well.
10-21-2008, 03:10 AM   #17
AndyCrohnsPatient
 
Hey sorry to feel things are not good. First let me give you a big hug! (we like to that here). And sorry to that you cant work, I feel like that barely getting by in school. I hope it gets better. Hope they can figure out whats what soon. Im still looking for my answer. Just hope all is will and welcome and if you need anything there is alot of us here to help so. I know its hard looking up in these times but might as well try
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