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Hi, let me introduce myself.

I will let this thread do most of my talking for me http://www.crohnsforum.com/showthread.php?p=813161#post813161 I said a lot there already, mostly looking for advice. I could go further into my "stomach" issues if asked, I guess, but you get the general idea there. I do not have confirmed crohns or IBS, as explained why in said thread, I should know soon though finally. And as already said, my primary of these past years suspects its a severe case of one of the two.

More looking for advice on the pain, and any knowledge on why these issues may cross relate. Even now, with my having coverage again, and coverage this time that will let me get tested and see specialists I suspect its going to take awhile, since the first one I have seen has his visits slated weeks apart to get to the end result with him, and is already hinting he will be sending me on to another one as well ( he is a Urologist, he's hinting at a gastrologist ) and all of this has probably got to be done before my new primary lifts a finger ( already rethinking CCAP and going to ask a doctor to recommend another doctor as a primary instead of them ) so looking for any advice or help. TYVM for your time, and pre sorry about my rant in that thread, but it sure felt good to say. :p
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Maybe the whole "I'm looking for advice" thing was just glossed over or not understood ? Let me try again, I am tired of having this, I want to be aggressive about getting something done now that I can.

I am looking for advice.

I will add my rant here instead of a link, a little edited down, looking for thoughts on what people think it is and advice.

About seven years ago, I got put out of work because of chronic sciatica, nothing to do with whats here right ? Maybe, but probably wrong. Just a little later I got an infection ( I was prescribed vic's for the previous issue, never took them, never even filled it ) epididymitis, which I was given vics again, this time I did take them, as well as the antibiotics. I also had had "stomach" issues for years, which I had always just waved off. These, for whatever reason also came much more to the for front when I got first laid up, with a "back" issue.

As it turns out, the vic's were my salvation when confronted with all three issues. Now, later, I got an infection again, ER checked me out, had me come back in after the antibiotic treatment was done. Turns out I have chronic prostatitis as well, and this is what causes me to get these infections so frequently now. I have the "unknown" cause kind, its not viral, its been seven years now and no steroids or antibiotic treatment has worked.

Through the course of this, I lost my coverage, I was never big on going to doctors before these issues anyways. I can count on my fingers the time I had since I was 18 until this all started when I was 37. I have had stomach issues since my teens, I just always waved them off.

Well, I am now waiting for disability and on was on GPA, which wouldn't cover my getting tested for Crohns or IBS ( or really anything besides a primary and scripts for that matter, as I would later find out ) which is what my primary doctor is 99& sure I have a severe case of one of them. She snuck me on some of the steroid and other treatments to see if they would help, no joy. The only thing that gave me any relief was the vic's. So we worked out a schedule with them that worked for me, which on paper is 8 a day. In reality, some days I took very little, on bad days I could take up to 12 though. In comes the FDA and PROP people like you, which cut what I could take in a month by a third.

My primary then wrote my scipt as must last 30 days and was going to send me to a pain clinic so I could get the amount I was already taking. Me, thinking I was smart went and looked up stuff online, and saw she could write me three scripts in 90 days time, so I ignored her and took them as normal, figuring I would be in a pain clinic soon enough.

Turns out GPA didn't cover that either. This got me in hot water with my primary for not listening, and added a danger of addiction note to my medical records......... She had offered to send me to a pain clinic in the past to get on Schedule two, also mentioned MJ was becoming legal as an option...... I turned down both, this was before the R.I. laws changed, does that sound like an addict or someone wanting to get high ? I turned down an offer to get on oxy.............

During this, over a year ago, GPA was phased out, so I couldn't get back on that, but my Obamacare app kept hanging up in the works............ No doctor at all................. No meds, no nothing, even though because I outsmarted" myself, I wasn't on vics anymore..........

Wound up in the hospital for kidney stones ( this just to top my hell off I guess, although I knew they were and are still coming as I had already been told my kidneys were calcified years earlier, just took awhile and I think I have passed a couple before, just not this severe/size ). There a navigator did what my case worker and myself had failed to do all these months, actually get my med app through. They had kept "losing" my paper work before this. This time she faxed it in, and verified with one of them they received it. Even with this, they "lost" it again, but this time she was there to raise holy hell over it since she had verified it with them and she is a navigator that works for Kent, but not them.

Now, for the past year + my life has been a living hell, I would literally rather die than know I have to face life with this pain forever. My coverage this time does cover specialists, so I will hopefully finally know what my stomach/abdomen issues are. My other two issues are for life though. I have changed primary's because I lost my transportation, so with my old ones notation, that won't look good I assume.

Now, listen to me, I don't want to be on schedule two drugs, still, to this day. I don't want to be "doped" up. I don't want to be on MJ, even though its legal, I don't want to be high, I just want the pain gone, or more accurately, a sense of relief from it. Vic's at my old dosage do all of that. But because of people like you I am fearful this still won't happen. My God, we put dogs to sleep when in misery, why can't we with us as well if you wish to offer no relief, just suffering ? Its people like you that have turned my life into a living hell. Just realise this please when you wake up and look in a mirror. I am not an addict, I can't even imagine being "high" on vic's, they make me drowsy sometimes, that is all. I can deal with being "drowsy" sometimes. I don't want to be "high" which is all the other options offer. Vic's bad side effects ? Believe it or not, they help with my passing "mud", they actually in my case regulate me instead of constipate.

Before you try to say something like, "You talk like an addict", realize this, its been over a year, I haven't had one, just a life of suffering and hell. When I was put in the hospital again, the ER gave me a one day supply, and told me to get a script from my primary. Took two weeks for that wonderful lady at Kent to get my coverage through, so yeah....... Also lost my transportation, so I am now at Coventry CCAP, since my 65 year old mother can drive me there...... And they are waiting om my records from my old primary, even though most of this is documented at Kent and R.I. hospital through the past seven years, which is how my first primary started treating me to begin with, things they have instant access to.

All of this for them to "maybe" send me to a pain clinic just to get a schedule three because of people like you, and I fear even that not happening since CCAP are PROP supporters.
Now some may view that as I want vic's and thats that. No, I want something that works, that simple, and on my terms, I don't want to be doped up or high.

So advice on what it may be and what would work so I can be aggressive about it as I see these specialists. So far, in the past seven years, only vics have worked. Also, I had a med that did work to "regulate" me, that with the vic's which I guess is supposed to constipate normal people made me somewhat "regular". After I lost my coverage I no longer got whatever those were, but I have found a mini fix on my own. I know dairy is supposed to be bad, but I eat cheese, like two string sticks a day.

Besides that I drink soda, which you would think would be bad, it actually helps a little, if I just drink water its actually far worse. Besides that my diet is very abnormal, I eat at most a meal a day, some days none. Mostly the thought of eating actually sickens me. My meals, when I do eat are "bland", its what appeals to me now. Like a bowl of white rice. Or a bowl of instant mashed. Or 4 poached eggs and toast. Any one of those three would make my meal of the day on days I eat.

If any of this is confusing, well it is to me as well. What I've noticed reading here is no two of us seem to be alike to a great extant. We don't fit a cookie cutter mold, which probably frustrates doctors as well I would imagine.
Welcome to the forum. I'm not entirely certain what answers you are seeking? I'm assuming your second post is a copy/paste from another thread.

IBD(inflammatory bowel disease) such as Crohn's can cause issue outside of the GI tract called EIMs(extra intestinal manifestations). I'm not sure if either of your other conditions fall under this though. Googling Extra intestinal manifestations of Crohn's will bring up some articles that may give you some answers. IBS is irritable bowel syndrome is something else entirely.

It can take some time to be dx'ed with CD but others find out rather quickly. GI will some times px pain meds when active disease is present but it can vary from doc to doc. There are a lot of GIs, I would assume that focus more on getting the patient into deep stable remission so that there is no pain to deal with. I have read of several members here that have been sent to pain clinics along with GI, though.

Hope you find some answers and relief soon!
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Looking for people that look at it and say "Thats me, I know what he's talking about" I guess, and give me advice on what I should ask the doctors for that will work. Its just weird, I'm reading a lot around here and I get the "Thats me" feel a lot, but then a lot that isn't with some that fit to not fit at the same time.

There's a lot I don't mention, like the fatigue, my old primary says I'm terrible with that, mentioning things I should, just some stuff to me doesn't seem "worth" mentioning I guess. Some of it, I also think would just confuse some, even doctors, as they might take it wrong. Like fatigue and being "drowsy" are two separate things. Drowsy means it straight up makes me want to sleep. Fatigue is just general lack of energy, feeling even simple tasks are beyond you.

To be honest, 8 years ago if this me had said what I'm going through as a list of things, he would have told be to man up. On paper it just doesn't sound as bad as it in reality is. On paper it sounds like a man with a bad case of PMS I guess ? Bloating, pain, just a general feeling of unwellness,, fatigue. And those with varied degrees at times. And of course the bathroom "cycle" which is the only part that doesn't sound like a man with PMS. On paper it doesn't sound so bad.

The reality, and living with it 24/7 though is entirely different. My good days I would have considered bad days 8 years ago, my bad days I don't even want to get into~~

So, like I said, looking for advice, and to a degree people that actually understand that its far worse than it sounds on paper if that makes sense.

Even better, someone to read it and say, "I know what that is" and tell me the magic pill that will make it all go away.
Oh, and of course nausea if that wasn't apparent. I did already get something from you. I should be seeing a GI, not a Urologist. Which he's already pretty much said he's sending me to one of those as well.