Just feel like giving an update

[Colt]

So now that I'm off my prednisone, been completely blown off my a rheumatologist who wouldn't do any proper testing and mostly ignored the tests he did order I'm not doing so great. I've got rather nasty joint pain, my ankles (don't ask me why he picked my ankles of all places to x-ray, you don't want to know) show inflammation, I have a vitamin D deficiency which I took my first weekly supplement for on friday, I started with mouth ulcers again on the 11th which a brief gap between that one and my current one from the 19th to the 23rd, I'm leaking and farting mucus again, and I'm bleeding pretty bad soaking multiple tissues with the blood and mucus mixed together some of the time.

On the upside my pain isn't too bad. It's turned out that the pain was in large part the IBS. With that under control I'm still having pain but it's tolerable. I'm seeing my first 1 out of 10s for the worst of the day in a long time.

On Friday and Saturday I was doing pretty well joint-pain-wise but I had my vitamin d and my new orthopedic shoe insoles introduced on the same day so I'm not sure how much of it was each one. The pain started easing back in on Sunday. I'll see how it goes on Friday to decide if I'm getting a boost from the vitamin D or and that's helping or not.

My next GI appointment is on March 11th. I'm a little curious to see if my crohn's symptoms springing back to life soon after the prednisone stopped will get my GI's attention or not. I'm extremely pessimistic on the matter though. He'll likely continue to think I'm lying about all of this. I'll just by chance be between mouth ulcers on the 11th too. That seems to be something I can depend on. Any blatantly visible symptom will just happen to not be there during my appointments. Not that I can get anyone to even look at them when they are there as the rheumatologist proved. Hell, I can't even get anyone to run any basic tests after the scopes. Since when do doctors pass up an opportunity to order tests?

Excuse me while I go sit my hypochondriac ass in the bathroom and cry while I clean up the imaginary blood. I need to go for the 6th time today.

 

[GoJohnnyGo]

Hey, I'd pat you on the back if I could, but people might talk if I was in your bathroom.

 

[kello82]

Excuse me while I go sit my hypochondriac ass in the bathroom and cry while I clean up the imaginary blood. I need to go for the 6th time today.

*hug*
sorry everythings so shitty right now.
i buy bulk boxes of 3x3 gauze squares and keep one tucked up in my buttcrack all the time. it helps. at least a little. depends on how much your ass wants to leak that day i suppose.
more absorbent than tissue at least, and doesnt get stuck to your butt

good luck at your appt. your in my thoughts Colt.

 

[soupdragon69]

Hey Colt,

They xray your ankles and hands usually for signs of bone erosion etc as they are usually the first places to show it up (so I was informed by Rheums originally).

Glad the pain is easing but DAMN IT they need a fire lit under their own asses! You CANT keep going on like this! *Grrrr Soup stomps around*

I got my Vit D retest results and they are well into normal range now being up around 25 rather than 10 following my IM injection last Nov of it. Still taking daily Vit D and calcium morning and night though.

Like you my pain seemed to ease but found I was registering really sharp shooting pains in my feet and down my arms from my shoulders to hands and when I discussed this at my last Rheums visit they said I had nerve damage from the arthritis and as a result neuropathic pain for which they have prescribed meds for.

Seems to be a multi-layer thing this business just like crohns - sigh..

Colt keep fighting your corner. I havent been around as much as have some things going on myself at the minute but have been reading and posting where I can.

Thinking of you my friend and hoping you get more relief soon.

 

[Colt]

I really do know why he x-rayed my ankles. It's because I'm flatfooted and he decided that ankle pain was my only complaint. He wanted to see if I had a birth defect causing or damage caused by the flat footedness. If he'd have ever listened to me I'm pretty sure the hands would have been the ideal place to look for signs of RA. Regardless my ankles did show inflammation which was completely and utterly ignored and covered up.

Not that bone erosion is needed for an RA diagnosis. The rheumatological association heavily discourages allowing RA to show bone erosion before beginning treatment as the entire point of the treatment is to prevent bone erosion from beginning. Once it starts it's not very controllable.

I have been getting shooting pains up from my feet lately which I thought was kind of odd. It hasn't really been a problem in the past.

I'm thinking when my appointment comes up I won't bother saying anything as I already know that's pointless. I'll just hand them my symptom charting calender. According to it I was bleeding 8 out of the 27 days this month and often quite large quantities.

 

[kello82]

do you get the shooting pains from your feet when you move them from being up on a bed, for example, and then put them on the ground? or when you first stand up from sitting does it happen?

 

[soupdragon69]

Colt doesnt matter whether you think your hands were the best place or not to look for RA they SHOULD Xray both them AND feet. Its standard practice.

Glad you know the reason why he Xray'd your feet!! Well done you!

And no I totally agree bone erosion ISNT needed for an RA diagnosis but ALOT of the time its already there as many folk put up with the pain ( for whatever reason) for a considerable time before diagnosis.

Also not everyone is Rheumatoid Factor positive on a blood test. Not everyone will show signs in other tests. From my own perspective my bone erosion only showed up on my feet with an MRI scan and NOT on Xray.

As always with everything its a compilation of tests and examination to obtain an appropriate diagnosis.

Hope you get some results in relation to appropriate treatment at your next consultation.

Keep us posted.

 

[Colt]

On the contrary, standard practice here seems to wait until someone has a serious complication and let the ER do the diagnostic work for you. My problem is that I mistakingly thought that prior ER visits, testing, and diagnostic work counted for now as well. Apparently if you change doctors you also need to have that doctor's associated ER diagnose you. They don't trust anyone else's ER to do the diagnostic work for them.

How the hell do you go to a rheumatologist complaining of symmetrical global joint pain and not have an RF and/or ANA done?

Had my GP still been in control of my crohn's treatment his response to the negative scopes would have been: "I've got bad news and great news. It looks like the prednisone is working after all. But, since you're showing this new set of symptoms with the crohn's suppressed we're probably looking at IBS as well."

My GI? "All the scopes were clear so I don't think you really have crohn's. It's got to be IBS. Stop the prednisone and we'll start you on an anti-spasmotic and something to make your bowels less sensitive. You should be fine from here on out. You may not even need the anti-spasmotic so I'll put it down as PRN."

:angry-banghead:

 

[bethyd78]

Hi Guys I'm new but not new to this illness My GI doc did a prometheses test which will definitively tell you if you have cd or uc. I know I have cd now so big deal I knew I was sick before. All the times you're told your crazy or addicted to
pain meds or there is absolutely no reason for your abdominal pain. It doesn't take all those memories away. But if you want to know this test will tell you.

 

[Colt]

Actually, no. It won't. The prometheus test checks for antibodies. It won't tell you for sure if you have any disease or not. What it does do is if you show up with one antibody and not the others you will have a MUCH higher chance of having either crohn's or UC depending on which antibody it is. The purpose is soley to help differentiate between UC and crohn's.

Besides, you first have to convince the doctor to order such a test. I had a resident who wanted to run a prometheus test and quite a few others on me but of course the attending shot it down and apparently forbade any further tests on me as soon as the resident stepped out of the room to write the orders. The negative scopes were pretty much a final, irreversable death sentence to the diagnostic process.

 

[Colt]

Lots of fun lately. I've been having a lot more diarrhea issues, including once today when I had a fascinating bit of explosive watery diarrhea when turned out by smell and the excruciating burning sensation to be mostly bile. I had to put a butt-load of lidocaine cream on it (pun intended) to make the burning stop.

I'm wondering if maybe controlling the constipation-predominant IBS has opened me up to the more standard crohn's diarrhea. Of course I've had numerous boughts of diarrhea but they're usually more mixed and sporadic. It's becoming more and more the predominant problem. You'd think with all of the muscle relaxers and all the other things I'm taking that cause constipation it would still be counter-acted though.

It's also getting harder and harder to eat. The idea is just getting kind of gross. It nauseates me just to think about eating lately. I could stand to lose a few pounds though.

 

[mRae85]

wow *hugz* I gotta admit, your story has me in tears

my meds have kept things from getting worse but have yet to put anything into remission and soon I will be due for more testing *sigh* I can't say I understand what you are going thru right now because things haven't got that bad for me, but I will say you are in my thoughts. I hope everything gets better for you as fast as it can. keep holdin in there and keep positive.

 

[Colt]

I don't have it as bad as a lot of people on here. As far as my current GI is concerned, I don't have it at all. No ulcers or patches of scar tissue on my last colonoscopy.

 

[Kittee]

Ugh sorry to hear you aren't doing so well Colt.

=(

I can sympathize with the "leaking" issue however...it drives me insane.

 

[Colt]

I just got back from my GI. I think he's seriously considering crohn's disease at this point. He's all but convinced I think and just waiting to gather solid evidence before giving a final diagnosis. I go back in 6 weeks which is much quicker than the last wait of about 3 months.

On a more crazy note.. I'm headed for a cardiologist tomorrow morning. I've got a murmer, my pulse is completely unstable, and my blood pressure and pulse are really high. The chance of systemic auto-immune disease is scaring the shit out of me right now. Crohn's is potentially life threatening, but something like lupus or behcet's involving heart inflammation IS life threatening.

I'm really happy I'm going in so quickly. I don't want to sit around worrying. The stress would likely give me a heart attack if whatever's going on wouldn't already. The cardiologist's clinic is also right down the hall from our blood draw clinic and we deal with them on a daily basis so it's oddly comforting. I'm on my home turf and I have more confidence that they'll treat me well because I know some of them. I don't know which cardiologist I'm going to see but more likely than not I've drawn their blood for a study. Of course everyone I work with is going to know my business too. Fortunately I'm already lord of TMI.

 

[mRae85]

I suffer from alot of joint pain and pain in general. The ulcers are what got me diagnosed tho, I still have the print out the Dr gave me. It was a bitter sweet moment, at least I knew I had something physical because by the time I got diagnosed I seriously thought maybe i was just insain or something. The pain is my worst symptom by far. I can handle scouting for bathrooms but the sharp pain mostly on my right side lower mid area on a daily basis is what drives me completely insain. These past coupple months I've been gettin sharp pains on my left side too, as I have said, the pred is just not working. Dont get me wrong, Im glad I have it tho, I'd hate to know what I'd be like right now if I didn't have anything.

ha! 6 weeks is like 6 months when you are waiting for a diagnoses, I been there too often. I heard the word "crohns" 7 months before actually getting to the "yup, you have it for sure" stage. Sometimes I think Dr's draw it out and all just for sport. I have had a heart murmer since I was born, that in general is nothin to really to worry about. It feels funny tho, I feel my heart "roll over" from time to time.... dont know if you know what Im talkin about there or not lol... it just feels wierd. Wish you the best of luck, sounds to me like you need to start gettin on those Dr's a bit harder tho, sometimes it takes some screaming to get them to listen. I know I had to loose my temper or I'd still be on prozac or somethin *sigh*

 

[Colt]

Well, the crazy heart behavior is being blamed on the elavil I take for my IBS. (this was her opinion before my echo. I haven't spoken to her since.) The murmur on the other hand is a hole in my heart between two of the chambers. It's pretty big. I'll have to wait until the cardiologist goes over the echo and find out if she thinks it's worth open heart surgery or not. Kick a guy when he's down, eh?

 

[AIjen]

Sorry to hear about all you have been going through lately. It seems a lot for any one person to deal with. And now a hole in your heart? Wow. I would think that a hole in the heart would be congenital and not from an autoimmune disease, but I don't know for sure. I worry about systemic autoimmune disease as well. It has already affected my thyroid, my skin, my heart, my lungs, my connective tissue, and now my intestines. There really isn't much more that can get attacked! Fortunately, the Plaquenil took the inflammation and fluid away from my heart and lungs, so I can be relieved. For now anyway. But then they found the Crohn's. Since 2000, I've lost my gall bladder, my appendix, an ovary, and my uterus. I've had 2 colonoscopies, 2 EGDs and an ERCP. And that was all BEFORE any autoimmune stuff was found. Wait no - 1 colon and 1 egd was after.

I guess all I can say is be patient. I know how difficult that is. Systemic AI stuff is pretty scary. I don't know much about behcet's so I guess maybe that could cause a hole in the heart. I'll have to look that one up again. It was mentioned here once before. I didn't think a hole in the heart could develop in an adult. But again, there's a LOT I don't know!

I wish you much luck in your doctoring. I hope they get on the ball now and stop dragging everything out. THat is the absolute worst - all the waiting. I hope they figure everything out soon and get you back to feeling like yourself. I miss your informative and upbeat posting!!! But I totally understand your frustration and would be (and have been) down and upset in your position as well.

 

[Colt]

The heart condition is congenital and completely unrelated to my other conditions. If it were from autoimmune disease the valves would be narrowed from inflammation. It's a PFO, which is not terribly uncommon. Everyone has the hole when they're in the fetus but it's supposed to go away. Mine didn't. My mother has the same problem but her's is small. She still has to take antibiotics when she gets dental work and such.

But, mine's pretty damn big for a PFO. If it's small enough it's harmless, and it is in the vast majority of cases. Usually they're pretty hard to detect and they may only open at all when you cough or otherwise tense suddenly. Mine's so big I could clearly see it before the ultasound tech said a word. Not just that but it's clearly visible from all angles. It gapes open like a 3rd valve as my heart beats. I think the question is pretty much going to be risk of open heart surgery vs. risk of leaving it alone.

I think irony decided to give me a kick in the nuts to punish me for having my GI start to take the crohn's seriously.

 

[mRae85]

OMG wow, your heart mumor is waaay different than mine then. I dont think mine has anything to do with a hole in the heart, it just skips beats or as my Dr says makes a gurgling noise but over all is nothing to worry about at all. So sorry to hear all that. Sounds like everytime you go to the Dr you get more bad news.... well i dont think "bad" is the right word to use here. That is awful. I am usually good with words and advise but this time, imma have to get back to ya sometime that's alot to take in. My best friend out in cali tho, she has addisons and she has a pacemaker due to a heart problem that was brought on by her illness. Glad to know that your heart issue is seperate from the Crohns but at the same time that gives you 2 seperate things to try to manage now. You most definatly have to keep us up to date on all of this and where it is taking you. You'll remain in my thoughts that is for sure. :eek2:

 

[Colt]

It looks like we're just going to let it go. I don't think I'm even going to have a follow-up with the cardiologist. There's not a tremendous amount of flow through it to where it would drive my blood oxygen saturation down to harmful levels so it's probably not going to be a problem on its own. It's just going to do things like raise my risk of strokes and complicate other heart conditions that creep up later when I'm old. I'm not looking forward to the possibility of my first stroke at 40 or a heart attack at 35, but that's still a long time from now and it may not even happen. Health probabilities are an odd thing to deal with.

 

[TammySue62]

*hug*
sorry everythings so shitty right now.
i buy bulk boxes of 3x3 gauze squares and keep one tucked up in my buttcrack all the time. it helps. at least a little. depends on how much your ass wants to leak that day i suppose.
more absorbent than tissue at least, and doesnt get stuck to your butt

good luck at your appt. your in my thoughts Colt.

I had a good chuckle from your thoughts

 

[soupdragon69]

Hey Colt,

I have just been reading through your latest posts.

PFO eh? If its as big as you say you need to see that cardiologist for review and not leave things as they are - you KNOW this and dont need me to tell you this!

Even if the cardiologist feels it doesnt warrant surgery at this time you MUST continue to be monitored! You know it has to be monitored for any changes over the years and you may never need surgery BUT on the other hand you may need it down the line at some point.

Yes they are fairly uncommon but if your pulse rate and BP are high it may not be the stress it could be your body compensating my friend.

I deal with PFO patients where I work on a regular basis so if I can help in any way just shout ok?

You have fought so hard to date in relation to Gastro etc dont lose out on something just as if not moreso important.

Keep us posted on the results.

Thinking of you.

 

[Colt]

Yeah, yeah, I know. The odd thing is the doctor who reviewed my echo wasn't my cardiologist. I know that's not terribly unusual, but she told me SHE was going to look at it the next morning. The guy who did look at it made no mention of the PFO in regards to the echo showing the hole directly or the doppler image showing the blood flowing from one side to the other. He just mentioned the bubble test the ultrasound tech ordered when she saw the hole.

Atrial septum: Contrast injection with agitated saline was performed. Very few bubbles noted in the left ventricle late- could represent a small PFO or pulmonary level shunting.

As for the BP she was blaming it on the elavil as it can mess with the adrenal mechanism of heart control. I guess that's still the idea, though I know a PFO can toss your BP/Pulse all over the place trying to get the right chamber pressures.

I guess I could try to get ahold of the images on Monday and maybe ask my cardiologist to take a look herself.

 

[Colt]

It was a little bigger than this one when dialated and pretty much right in the center, whereas this one is toward the bottom.

I have to say, too, that our Ultrasound machine is awesome compared to the POS that made this picture. Government hospitals are 1337. If I get a copy of the US pictures I'll make sure to post them.

 

[mRae85]

I wont repeat or quote, I will just tell you to please re-read exactly what soup said about keeping up on it and not ignoring it because I agree with that 100%. I am way out of my league here in general seeing as I dont know much about this condition. I know I have a murmor but not sure exactly what that in itself even means in terms of the future or a hole in the heart or any of that because I was always told it was nothing to worry about and alot of people have them. I don't have any medical degree but it damn sure does NOT sound very safe or healthy!!!

Keep us up to date, I don't know much of what you are talking about so this is going to be something I will have to google and learn more about but you are always in my thoughts and I hope to hear something that sounds a bit more positive soon.

 

[Colt]

I've been told that too. Doctors always want to ignore murmurs but it still needs to be checked because it could be something extremely dangerous.

It's like blood pressure. Lots of people have high blood pressure, but I'm sure you can imagine how horrible the death toll would be if BP wasn't checked obsessively in the medical community.

Hell, people are being pushed to have coloscopies when there are no symptoms and no reason whatsoever to beleive that there is anything wrong with their colon. A murmur means there is something wrong with your heart. In this case you know there's a problem, you just don't know how bad it is. If the burden of proof for a coloscopy which is FAR more invasive is the small possibility of having a problem then a case where you know there's something there would far exceed that theshold.

It may not be worth surgery but you still need to know what it is just in case and just so you already know going in to future situations.

As many people as there that die from cardiovascular disease you would think ECGs and Echos would be standard procedure. Hell, an ECG isn't much harder or time consuming than taking someone's blood pressure.

 

[AIjen]

I agree with you there Colt. I've been saying for a long time that everyone should have a full-body CT Scan or MRI every year as part of their physical to screen for problems. And, of course, bloodwork. Imagine how many people could get their cancer caught early enough to "cure" it. And other stuff too. I know CT scans and MRIs are expensive, but preventive measures could probably save more money that not doing it by cutting long-term management. Of course I have no proof of that, nor have I researched it. This is just my opinion.

 

[Colt]

The reason you won't see that happen is that everyone has at least one thing wrong with them and that means already overcrowded hospitals and doctors would have even more work to do, and insurance companies would never allow it because it would cost them a fortune. The thing is, they're gambling that it's not going to cause any problems, or if it does they'll just fix it then when they have no choice. To the medical community there's no reason to fix a problem until it becomes a problem. If a brain aneurysm is only going to burst 50% of the time, that's half the expense if they wait and see instead of fixing it every time.

It's just like the hole in my heart. It's not causing me any serious trouble so they're going to assume that it won't cause me any serious trouble. As soon as I have a heart attack it'll be a huge deal and they'll want to rush me into surgery because now they know they can't avoid it without just letting me die in the short term. The fact that the surgery has many, many times the mortality rate once it's started causing problems doesn't really matter, because as I said, they're just going to assume it's perfectly benign.

 

[AIjen]

Ah yes. Assumption. Yeah, I understand why it won't ever happen. But my opinion is that it will save them money in the long run. Even if the surgery for your heart will cost them the same amount if it's done now or if it's done in an emergency, it will save them the cost of the emergency room/ambulance/helicopter. In the big scheme of things, not all that much, but it's still something. Why wait? Why play Russian Roulette with someone's body? it doesn't seem quite fair. But as you say, there is risk in the operating room as well and I totally understand that too. Funny how trying to take care of one's self is such a difficult thing to do with all of the "what ifs" and maybes. I suppose this kind of thing would qualify for the word "conundrum".

I do hope they get things straightened out with your heart. I'm sure you've been told not to worry about it and forget it's there or something like that. Yeah, right. You try forgetting about a hole in your heart once. My mom told me to forget about the fact that I had Crohn's and not to dwell on it so much. Easy for her to say when she's not the one taking the huge pills 3 times a day and having bathroom issues and nausea, pain, or fevers on an almost daily basis. It's easy to tell someone to forget about it, but it sure isn't easy advice to follow. I do think my mom is starting to "get it" though.

Anyway, I wish you much luck in this new issue. Like you didn't have enough to deal with, right?

 

[D Bergy]

I think one reason that would not be done is because many people may have something wrong with them at one time or another. I most cases the body just takes care of it without any outside intervention.

For example, my uncle had some kind of scan for some problem and they found a cyst on his Kidney by accident. They did a biopsy and found out it was malignant.

They removed the cyst as a precaution, which may or may not have been the right thing to do. They knew the cyst was contained because the body encapsulated the Cancer and it probably had been there for years.

There is no way to know what would have happened if it was left alone, but it cost a lot of money to remove something the body had already resolved by itself.

We may have cancer at some time or another. With a good immune system the body probably just kills it like any other invader. Under the right circumstances it can take off and then something will need to be done. If we always found all Cancer as it appeared, there likely would be a lot of unnecessary procedures.

It is just a theory I have thrown around. Don't bet the farm on it.

Dan

 

[Colt]

The immune system doesn't do anything to cancer. Cancer is treated like any other type of tissue. All cancer is is normal body tissue with a genetic mutation that causes it to not form properly. It IS your body. It's not a foreign substance of any sort that your immune system would attack. Even if it did the immune system has no mechanism to effectively attack tissue like cancer and keep it from continuing to reproduce.

Being in a cyst doesn't do anything to stop the cancer. It will continue to replicate and grow like any other tissue in the body. If it's in a cyst all it'll do is grow until it gets too big and ruptures the cyst.

 

[Colt]

More on topic.. I've decided to just give it up on the PFO. It's pointless to try and fight with them. It'll only get me further blacklisted as a hypochondriac just as I'm finally making progress with my GI. If it causes a heart attack later, I'll just have to deal with that. They certainly won't ignore it anymore after that. The thing that concerns me is just if I should continue taking elavil for the rest of my life if it's jacking up my pulse and BP and putting strain on my already weak heart.

 

[D Bergy]

While I do not agree with your Cancer theory, it is way off topic and you have more important things to do than debate right now.

I am wondering why this hole in your Heart is not being addressed. Even a small hole needs to be treated with blood thinners to prevent a stroke. Are they going to give you a Blood Thinner or just ignore it completely?

I wouldn't worry about being considered a hypochondriac, you have a defect that is known. It is not an imaginary problem. It seems strange to just say live with it, without any options. I thought our doctors were bad around here. Then again, the doctors around here would never have found the hole to begin with.

Hang in there.

Dan

 

[mRae85]

I dont know if it helps, but you could maybe try to take 1 baby asprin everyday, that helps to thin out the blood and is usually reccomended to help in any heart situation.

Main reason why I am not pushin on the murmor or any other issue right now is the word "hypochondriac" even thought I have noticed that almost all of us here seem to have more than just one health related issue. For now, just like with you I seem to just be focused on finally getting the Crohns under control and getting my Dr to focus on that.

 

[Colt]

In approximately 25% of adults, the foramen ovale does not entirely seal. In this case, elevation of pressure in the pulmonary circulatory system (ie: pulmonary hypertension due to various causes, or transiently during a cough) can cause the foramen ovale to remain open. This is known as a patent foramen ovale (PFO)

Though, come to think of it, this doesn't quite count as a PFO because it is open even when my BP is in the normal range and I'm at rest. It's more accurately an ASD which is usually considered a problem. Regardless, they're in the habit of considering them common enough to always be meaningless. Like getting chickenpox. Now, when that chickenpox appears later as shingles, then it's suddenly important.

 

[Colt]

Another update for the crohn's:

My joints are doing fine. I take my vitamin D on Thursday night and on Friday they're doing quite well. This fades until they're a problem again come Monday or so. I'm likely not absorbing all of the D and so not getting enough to meet my needs for the week and store some extra.

My lower right side pain is back. It was the main feature of my crohn's pre-prednisone. It's not related to when I eat and seems to be at it's worst in the morning.

I dropped 5 pounds last week. I'm eating a little bit less just because I feel so bad and I just can't handle the idea of eating most of the time, and especially certain things. It's the pain and associated nausea that's causing it. I just feel like I'm going to hurl if I eat an omelet come time for my breakfast break. I feel sick just thinking about it.

But, in the end I'm not taking in many less calories because I've made an effort to supplement with soda and other drinks which are easier to get down to get the calories. I think I might be having some caloric malabsorption. I wouldn't mind losing some weight but it worries me that it'll speed up even more and/or I won't be able to stop it later.

Diarrhea is getting to be an issue. Usually worst in the morning and fading as the day goes, like the pain, but it's not always coinciding with the pain.

I'm feeling pretty weak and sluggish, and worry to some extent about anemia.

 

[mRae85]

Thanks for the update, I have been wondering how you have been, you haven't said much since you told us about the heart issue. When were you last blood tests to check on anemia or when will be the next ones? Is there a test to check for Vitmain D? Looseing weight is never good but also another thing that we all seem to deal with alot, you said you wouldn't mind looseing some weight but if your body is anything like alot of ours around here I am sure you will be saying "I wouldn't mind gaining some weight" soon enough, especially seeing as you lost 5lbs in a week, that is never good. Pain and nasuea are the 2 things around here I can relate to the most, and those are always sure signs you need to get ahold of your Dr. If nothing else then maybe he can get you put on some Phenergan, I think that is how ya spell it, not sure Im not near my meds right now, but it is what they give me in an IV at the hospitial when I get really sick and cant stop throwing up or gagging in general due to the nausea, they finally gave me a script of it and the pills are no where near what you get in the hospitial IV but they do help enough so I can eat some. I like it because its not something I have to take all the time, just when I need it. Take care, hope I helpped some....if not at least ya know Im here to listen to you

 

[Colt]

I had a vit D done about a month ago and I'm on a prescription strength supplement. It should be enough to meet my needs unless I'm not absorbing it fully. It will probably be a while until I even venture to ask about having another one done. I'll probably wait until my prescription runs out in a couple months. I'm trying to play things safe and let the doctors think everything they do was their own brilliant idea. They're a lot less combative that way.

My last blood count was in october when I was on high doses of pred. Only a high white count possibly due to the pred. So far all of the doctors have considered those tests in october to be definitive for the rest of my life. My GI is coming around to the crohn's side and I am hoping I'll get more blood work during my next visit about a month from now.

I'm not going to call about it. I'll just watch and go to the ER if I have to, and I'll wait for my next appointment. Honestly I don't want to fix the problem right away. That's what I did earlier with the prednisone and it ruined the diagnostic process. The main thing that's going on right now is that my GI wants to just let the crohn's go and see what happens so that he can have enough evidence to make a definitive diagnosis. I have no scar tissue so we have plenty of room to play around with the disease before I get burned.

 

[Colt]

My weight loss stopped after a little over a week. I was consuming a lot of soda and such trying to stop it though. I gained a couple pounds back so I'm going back to my normal diet.

It's crazy though. I lost 10 pounds in a week. From what I can figure out at 3,500 calories per pound that wouldn't be possible even if I had eaten absolutely nothing all week.

 

[katiesue1506]

Maybe it was a little bit of water weight too. When I don't eat for a week... well when I didn't eat for 5 days I lost 5 or 6 pounds. Which is technically possible since 3,500 cals is a pound.

 

[Colt]

I did the math and with burning 2,000 calories a day that's 4 pounds per week with starvation. With a compensating metabolism even that should be impossible. I drank more fluid than normal, even, getting most of my 1,000 calories per day from soda.

Now I'm even more confused because the recommendation is not to lose more than a pound per day, which would require a bodily demand of 3,500 calories per day. There's something I'm not factoring in.

Never mind, that was silly. It's per week. I'm a little wacky right now.

 

[Colt]

Another update. I'm sorry I haven't been able to contribute around here like I used to. There's just too much going on between family, work, and health.

My pulse has continued to be high. Scary high. 160 at times. Once it even even got so fast I couldn't possibly count it. My base level is about 100. I don't really go below that. I talked to my cardiac nurse a few times. I got an appointment for Tuesday. 1 week after I talked to him. It was the soonest possible spot open.

My cardiologist doesn't spend much time in the clinic. She seems to spend most of her time teaching interns. She's only in 1 or 2 days a week and is a terrible pain to even get a hold of on the phone for her nurse.

Anyway, it's making me dizzy, light-headed, short of breath, etc which means that I've probably got pulmonary hypertension. I'm even having a little mild chest pain every once in a while. My cardiac nurse wants me to go to the ER. Do not pass urgent care, do not pay for the $100 ambulance ride back across the street.

I prefer to be on my normal side of the hospital arrangement and frankly I spend too much time on the med-surg floor as is. They already invite me to their baby showers (80% of the female nursing staff on that floor are now 9 months pregnant. There was a big 4th of july party that got a little out of hand). I'd rather not move in. So, I'm gambling a little bit and stalling until my appointment.

Worst case scenario is that I have a heart attack standing in the middle of 9 nurses and 4 doctors with a crash cart a couple doors down the hall. I'll risk it. I laugh now every time I see people freaking out and calling doctors because a patient has a pulse of 110. The most realistic problem is that I faint, someone catches me before I can get back up, and I get carted off to the ER where I'd be anyway if I didn't wait.

Right now I've got too much depending on me in regards to home and work for me to be in the hospital if I can avoid it. Even with my uber-insurance it'll cost $400 which is a hell of a lot of money for me. Even if everything works out really well I'm still pretty tired of being sick. I'm already lined up for specialist appointments for the next three Tuesdays.

You know, I've dealt with crohn's disease for years and years and I'm used to it. It's annoying and even at times disabling. It's royally screwed up my quality of life. But the heart problem? This scares the utter shit out of me. Instead of worrying about a chronic, nagging loss of my quality of life, I'm confronted with worrying about a sudden loss of life itself.

My cardiac nurse did say to go to the ER, which I clearly agree is the correct thing to do, regardless of my willingness to admit it. After all, I did walk back to his cubical to ask 'at what point should I give in and do something about this?' which if you need to ask you already know the answer. I think I just don't like the answer and I'm trying to get someone, anyone, to give me a different one. Everyone's so quick to tell me that I'm just fine and to forget about the crohn's disease. Now that I want to be told that about my heart problem, I can't get it anymore.

 

[My Butt Hurts]

Worst case scenario is that I have a heart attack standing in the middle of 9 nurses and 4 doctors with a crash cart a couple doors down the hall. I'll risk it.

Maybe I misread something. Wouldn't the worst case scenario be that you have a heart attack at home, and don't survive?

Right now I've got too much depending on me in regards to home and work for me to be in the hospital if I can avoid it. Even with my uber-insurance it'll cost $400 which is a hell of a lot of money for me.

You said it right there - YOU'VE GOT TOO MUCH DEPENDING ON YOU. If you really think that your heart is at risk for failure, then don't you owe it to yourself and your family to go to emergency? It sounds like an emergency to me. And $400 is a tiny price to pay to save your life.
Sorry to sound so morbid, but taking a risk with your heart is.. well, risky.

 

[Colt]

I spend 12+ hours a day at the hospital. It's also where my heart is under the most stress and thus by far most likely to fail. I don't think I'm at that much of a risk sleeping at home and my wife is a CNA. She's capable of doing CPR properly. It's only a couple more days. It's already Saturday night. I'm sure I can make it until Tuesday. There's always a chance, too, that my cardiologist will do a work up and decide that it's not bad enough to hospitalize me.

 

[kello82]

im sorry colt. i dont really know what to say. and im sorry for saying that, it pisses me off when people say that to me.

ok, you are only about 100 times more knowledgeable than me, but i will pose this thought anyway. prior to my surgery 3 weeks ago when i was dead sick my pulse was absolutely spiking to 160 at times. this would happen when i moved from the toilet back to bed. base level for me was usually around 120. i would check it just about every hour. and now, after surgery....its gone. like really, gone. i havent been above 100 since ive been home.
could it just be your inflammation doing this? or level of pain?

 

[My Butt Hurts]

Great Colt - you win the prize today.
I woke up at 5 in the morning, and was worried about you. (Well - not just you, thinking about other things too - but you popped into my mind.)

Are you taking a beta-blocker for your heart rate?
The only time I have been to the ER recently, I thought I was gonna have a heart attack. My dr wouldn't see me, they insisted I went to ER. Turned out I was hyperthyroid. I had the rapid heart rate, shortness of breath, felt like someone was sitting on my chest. Any possibility it could be that? It would be a whole lot easier anyways.
Good luck at your appt, hope you get some answers.

 

[Colt]

Kello, I hate being told that too. There are doctors whom I'd give a swift kick to the nuts if could get away with it. But that was crohn's and something I was a lot familiar with. I know for sure what should be done about it. I simply need to get someone to listen. I just don't have the strength left for dealing with 3 different specialists simultaneously. I'd like to go back to just dealing with crohn's disease. At least if they screw that one up I'm just miserable, not dead.

Inflammation and pain could be factors but it's hard to ignore a big hole in my heart as the likely culprit. I just had a thyroid panel this winter and it came back fine. The core diagnostics were pretty much over with the ultrasound and my continued symptoms with no medications. Now it's just an issue of complications and treatment.

All that will be delt with on tuesday. No one needs to be losing sleep over me. I'm not likely to drop dead in the next 2 nights. Thank you for caring though.

 

[ttyon]

I too have had a pulse baseline of about 120... for several months, at least, and even after almost getting to remission and being in the hospital for a month. I haven't checked it lately, though. They didn't really seem to think it was a big deal, but now I know that's only because I wasn't dead. If I died, THEN it would be a big deal.

I'm a bit worried myself because I couldn't tolerate blood-thinners in the hospital (had massive bleeding episodes, and residual bleeding and H&H drops even on low doses). I've felt faint at times, and it's really rare, but I've also seen my pulse go up as high as... 170, I think it was. That freaked the nurse out a bit, but I didn't really feel any different.

Sorry to ramble, just thought I'd share. I guess it's common to have a high pulse with crohn's?

 

[Colt]

No, not at all. Crohn's disease does not affect the heart. Some medications for crohn's disease, like prednisone, will though. My heart issue is entirely unrelated to the crohn's disease and is congenital.

 

[kello82]

i think ttyon was trying to say how a high pulse could be common among us b/c of high pain, dehydration, anemia, etc. thats how i interpreted it, not that crohns itself CAUSES heart problems.

but regardless, like you said a congenital problem is a totally different thing. whens your appt? its today right?

 

[ChefShazzy]

today's tuesday... let us know how your appointment goes! i'm curious and concerned, hoping all the best for you.

 

[Colt]

I did have my appointment. We're checking to see if anything else could be the cause or at least contributing. Hyperthyroidism is high on the dismissal priority list as it turns out my cardiologist is smart enough to actually look at the values on my earlier test results instead of just the high/low flags.

Our lab uses the ridiculous thyroid test ranges that are in place for a lot of labs. In other words, my Free T4 and TSH were both low. Not incredibly low, but TSH was 0.35 with a range of 0.4-5.0 and my Free T4 was 0.66 with a range of 0.7-1.6. This would indicate pituitary hyperthyroidism.

We're repeating the tests and doing a full thyroid panel including T3 as well. If it turns out I have hyperthyroidism she's earned a cookie. :cookie: We also drew a metanephrine level to check for an adrenaline secreting tumor. I'm wearing a heart monitor for the next 24 hours. She said she would have started me on meds today but she doesn't want to mess up the tests. I'm going to stop by my cardiac nurse while I'm at work on Friday to find out what the treatment plan is.

 

[kello82]

im glad that you got some tests done. and also she seems like a good doc, the fact that she wanted to get you started on meds right away but held off for the sake of the test. both good judgments in my opinion.

good luck with it.
try and rest up ok? i can just feel all the stress that you are dealing with, its not good for you. but i know you know that.
take care

 

[Colt]

I'll get my test results when I go in tomorrow to drop off my heart monitor. I should have answers on the hyperthyroidism and pheochromocytoma tomorrow night. If it turns out to be hyperthyroidism the GI issues become a lot more complicated. As for resting I'm supposed to be as normal as possible while the heart monitor is on. Rest isn't all that normal for me.

 

[AIjen]

If it turns out to be hyperthyroidism the GI issues become a lot more complicated. QUOTE]

Does a person with HYPOthyroidism cause GI problems to be more complicated? Just wondering since I'm hypothyroid (Hashimoto's).

Glad to hear things are kinda going in the right direction for you finally. You had a rough spell there for a bit. I hope they find everything that needs to be found so you can start feeling better.

 

[Colt]

Thyroid issues in either direction will cause GI problems. Hypothyroidism is one of the most common causes of clinically significant constipation.

I got my thyroid results back. My TSH is still arguably (extremely different concepts of what's normal depending on the lab) low but not quite as low as last time. My Free T3 and T4 were okay though. It's about the most annoying test results possible. Still can't make a final ruling one way or the other but it leans toward not being hyperthyroidism.

The metanephrine isn't back yet. I'll check with my cardiac nurse on Friday.

 

[ladyB]

WOW!! I haven't had a chance to catch up on your thread in a while, Colt.

It definitely was surprising to see all the problems you are facing right now. I imagine working in the hospital would help to keep you a little more confident in dealing with your problems. I think I would feel better if I knew some of the stuff to look for, well maybe that can be more stressful, too.

What happens on Friday if your tests show it isn't hyperthyroidism? Is there anyone else in your family who has gone through anything similar that you can draw from their experience?

I will be checking back to see how it went.

Good luck, man!!

 

[Colt]

The thyroid tests are back and they're still non-conclusive leaning toward normal.

What I'm waiting for is the metanephrine test which is for over-production of adrenaline. Usually this is due to adrenaline producing tumors. It's a rare disease and the hole is still the most likely culprit so I'm not too worried about that. But of course the prednisone and the fact that it kicked my adrenal gland's ass makes it a little more interesting of a subject.

I'll see what information we have gathered by Friday. 90% chance I'll be starting beta blockers to bring my heart rate down tomorrow even if we don't have a conclusion as to what's causing it.

 

[Colt]

So I am on a beta-blocker now which has brought my pulse down to a reasonable level for a change. 65-70 bpm seems to be my baseline now; which is great. My metanephrine (adrenaline) level is probably back but I haven't had a chance to go find out my results. If it were to be positive (not very likely, but possible) it would really explain a bunch of things wrong with me medically including some of the GI craziness.

I went to the GI and saw yet another new resident who tried to tell me that if you have crohn's it's impossible to ever come up with a biopsy that doesn't show inflammation, even on 60mg of prednisone for 6 months. So, I absolutely have no crohn's disease anywhere they looked. I'm sure you can all appreciate the ridiculousness of that idea.

But... the resident did show some intelligence in that he realized that we had never checked my stomach or esophagus for crohn's. The pill cam can't image the stomach (because it needs air pumped in to stretch out the wrinkles) and it hadn't turned on until it was already on it's way out of the stomach so it missed my esophagus completely. He really showed up his attending who was making excuses as to why he didn't think of it himself. Good for him.

I am having black tarry stools which would mean that the blood passed through the stomach or at least very high up in the small intestine. So, he's thinking crohn's of the stomach but they're still skeptical because they apparently don't consider it crohn's disease unless it's severe and I've not gone to the ER and been hospitalized yet.

I'm supposed to provide a stool sample. That's difficult, actually, considering I normally can go 3+ days with no BM at all and when I'm in D mode I'm usually in a very inopportune situation and there's no way I can hold it while I go set up the hat. They also want to do an endoscope for my esophagus and stomach. I need to return a call to the GI Lab tomorrow to get that set up.

Funny how we're concerned enough to do an endoscope but still no one will order a simple blood count or an ESR.

 

[kello82]

uhmmm well that reads as a whole lotta mess to me.

but im relieved that your bp is back down now. having it as high as you did is scary.
cant you just leave the hat in the toilet and then whenever you go its already there? if not (im assuming the prob with that may be the other people who use the b-room) one time i set it atop a trash can. not an outdoor one, like the smaller ones you have in different rooms.
lol sounds really weird, but it worked. then i just went there for enough to have the sample and used the toilet as normal.
then again i was littler, maybe itd be harder when youre taller?
i dont know. its an idea i guess.

well good luck. get that endoscopy i hope.

 

[Colt]

The metanephrine came back normal. I managed to get the stool sample in. Nice and bloody too. Oddly enough though, they weren't running an occult blood test on it. Instead it was one that was hand-written. Cryopectin if remember right, and I've never heard of such a test before. The scope is scheduled for the 5th.

 

[AIjen]

Colt -- After reading several of your postings in this thread, I've come to the conclusion that everyone you're seeing is going out of their way NOT to find Crohn's. It sounds like they're doing everything in their power to just not find it. Why wouldn't they do an occult blood on your stool sample?????!!!!!????? Especially if there is VISIBLE blood in it?!?!?!?!? I am in awe of your situation lately. I think by this point I'd have gone somewhere else. But then again, I still see the same GP I"ve been seeing, even though he doesn't believe in Fibromyalgia. Don't think he believes in autoimmune disease in general. I'll find out on the 19th though.

Good luck on your scope. I'd like to say I hope it's clean and they find nothing, but at this point...........................I guess I'm not sure what you're hoping for. Obviously something is wrong, so whatever it is, I hope they find it!

 

[Colt]

Honestly I think my stomach being terribly affected would make me a lot healthier in the long run. The sad thing is, I already know that even if they do find crohn's in my stomach they're going to dismiss it as regular stomach ulcers so no matter what I lose. There's no one else to see really. Thanks to insurance I have to use the clinics I do and if I try going to another doctor I'm just going to be labeled a drug seeker or a hypochondriac. I'll get what I can out of these doctors and have to give up on proper treatment. Even if they only treat my IBS, at least that's one less problem to deal with.

I've been talking to one of my patients who has crohn's and the same GI. She's had her colon removed and they're still doing the same kind of crap to her. In fact she's been unable to eat, vomiting blood and bleeding out of her stoma, she's in terrible pain, etc. They discharged her last night because they reached the conclusion that she just likes being in the hospital and getting narcotics. They got this idea when she asked to be tapered off of the pain meds they put her on.

 

[bethyd78]

Colt don't feel crazy. Remember I had symptoms for 23 years and I just found out I have Crohns 2 months ago. Iwent round and round for years. people telling me I had absolutely nothing wrong with me and I was crazy. I had colonoscopy after colonoscopy that was somewhat normal but never a distinct indication I had Crohns. I had so many exp. laps that only showed adhesions. Finally I know b/c
of the prometheus test. I at least know. I'm not happy I know. But I know and I know that my GI doc believes me now and knows all my symptoms I had were real.
bethyd78

 

[kello82]

In fact she's been unable to eat, vomiting blood and bleeding out of her stoma, she's in terrible pain, etc. They discharged her last night because they reached the conclusion that she just likes being in the hospital and getting narcotics. They got this idea when she asked to be tapered off of the pain meds they put her on.

omG!! what the hell?!

can you go somewhere else? i know you said that you dont want to cause theyll jsut treat you like they did to her, but there are good doctors out there that actually care and dont have their heads up their asses
what area do you live in?

 

[Colt]

I'm pretty much stuck with the doctors to whom I was assigned by the clinic. Not that you even are seen by a single doctor. I've been through endless residents and some are good and some are bad. Unfortunately my attending tends to shoot down anything the good residents suggest and listens too much to the bad ones.

I'm about to start looking for a GP. The GP I do have a lot of say over. With specialists you're stuck with whomever your referred to. I'm going to start asking around and looking up doctors trying to find one that will actually handle my case properly.

 

[Ang999]

I had an appointment with my GI yesterday. I don't have the official diagnosis of crohn's yet. I just had a CT scan and got the results yesterday - nothing new - basically normal. So there is no real objective evidence of crohn's (colonscopy 5 months ago showed inflation and an ulcer in the small bowel but didn't have all of the characteristics of crohns). However, because I have the symptoms we are treating it with pentasa and entocort.

My GI doctor said that he thinks its crohns but he doesn't want to officially diagnose me with it yet, because once you are diagnosed you can have problem with insurance. So he won't label me with crohn's until he is presented with objective evidence.

Could the same thing be happening in your case too?

 

[Colt]

My original GI played the same game. He didn't want to make the diagnosis because he was afraid that he may not get paid in the long run. That's wrong, and frankly criminal. It's insurance fraud and plenty of reason for that doctor to lose their license if not do a little jail time.

The problem here is that because of that my treatment now is absolutely craptastic. Had the original GI not been such an ass I'd be on pentasa myself instead of starting the entire diagnostic process over from scratch.

There's not really any other cause of inflammation and ulcers in the intestines beyond IBD. The name should get that one across. The only other option is ingestion of a toxic substance, or toxic levels of a medication like aspirin or ibuprofen. It should be pretty obvious if that's your problem.

Crohn's is diagnosed by seeing the symptoms. Once is enough because it's incredibly difficult to catch the disease in the act. Inflammation and ulceration in the small intestine IS all the characteristics of crohn's. It's not a diagnosis you revoke. If it was ever there it's always there.

CT scans are practically worthless unless you have a severe stricture or a fistula which are complications, not the normal activity of the disease.

Right now I don't even know what to think of my case. It's frustrating. It was there before, and I've had plenty of bleeding and other things which are always expressly not symptoms of IBS. But, no sign of that inflammation or ulcers at the moment. I'm just spontaneously bleeding from nowhere. The best explanation I can come up with at the moment is that my IBS is so bad I'm having regular fissures and hemorrhoids, but frankly those should have been spotted in the colonoscopy. If not seeing inflammation and ulcers during those scopes is enough to dismiss their existence the same should apply to fissures and hemorrhoids.

 

[Ang999]

I'm in Ontario, so my GI isn't concerned about getting paid. His concern about insurance was for me - life insurance, private medical insurance etc. He said that once I'm diagnosed I will always have problems getting new insurance because I would have to disclose the crohn's and would likely get declined or pay really high rates.

I guess the one difference for me is that although he hasn't given me that diagnosis, he is treating like crohn's and prescribing meds accordingly.

I've read your posts and the struggle you have been going through. I can only imagine how frustrating it is to have to fight to get them to see this. I really don't get why your doctors won't try crohns meds - if you have crohns it will help and it you don't, I doubt it will hurt you in anyway.

 

[Colt]

If you have free health care I don't understand how it could possibly matter. Why would you want private health insurance? I've worked in and been a patient in the American health care system and I've lived in Canada and been with my wife as she went through the Canadian system. The Canadian system is far superior in pretty much every way. As for life insurance, it's not a problem. Crohn's disease these days has no impact on your life expectancy.

The funny thing is that I was on prednisone when I first went to them and I was feeling the best I had in many years. They make a very strong point to just completely ignore the prednisone in all regards.

 

[katiesue1506]

Although people in Canada have free health care, they have to wait a LOT longer to get in to see specialists, we don't always have the time to wait to see a consultant... No healthcare system is superior... all have flaws. I guess it just really bugs me when people complain about the American healthcare system... (well it bugs me when people complain about America in general). I mean yes we have flaws and yes some things need fixed... but every place and every government has flaws. It seems like a lot of people make blanket statements saying "fix the crappy healthcare system"... do they not think the government has thought about this? Do they not think anyone cares? Its a very complicated situation that no one has a solution for. And any decision made will piss someone off. Its exactly as Max Weber talked about, we are in the iron cage of rationalism and no one (not even the technocratic people) know a way out.

In my own opinion, I think private healthcare is better than public, because people like us with specialized disorders tend to get priority... in my opinion, free healthcare is a great system for people who have no issues... its great for general health checkups... its horrible for people in life and death situations.

 

[D Bergy]

There is no "free health care" anywhere. It is either privately financed or publicly financed or both. If you look at the difference in tax rates between countries with mostly publicly financed and privately financed health care, there is your costs. There is no something for nothing.

The U.S. health care system is one of the most expensive, and yet by most measures, is not better than other, cheaper health care programs. Although I hear politicians constantly refer to it as "the best in the world". The facts do not bear this out. One area I do think we are particularly good at is surgical procedures. Other than that, we are middling at best.

Public health care has plenty of flaws, as does private. Both cost way more than they have to due to the influence of special interests. Until treatment is based on science, and public science unfettered from profit, both systems are going to remain flawed and expensive.

Neither one is producing cures for hardly anything. In spite of huge advances in virtually every other field, health care is still in a relative stone age, by comparison.

Just my opinion.

Dan

 

[Colt]

The roadblock is, as Dan says, 'special interests'. Private companies make such an insane amount of money off of private health care that they make a point to influence law makers not to take their money away. They use the public's ignorance on the matter to manipulate the people away from it as well. Why would a company not try to stop someone taking away their profit?

Mostly by saying that they'll have to pay more in taxes, even though they would be spending less than half of what they spend on private health care for the same thing. All that's important is that tax is just an evil word. People can't comprehend that they would actually have more money in their pocket.

People in Canada don't wait any longer for anything than they do here with one small exception: Care is triaged. Sicker patients go first. With a private system you can buy your way to the front of the line, be it with insurance, or going directly to a private lab and if not it's usually done on a first come first serve basis. As for average wait time it's the same, with a slight advantage on Canada's side.

You've actually reversed the specialized disorders thing. Public health care is all about triage. Sick patients go first. If you have something like crohn's disease you can walk into the hospital and be seen immediately and be given any test or treatment your doctor thinks you might need. Simple as that. If you're not sick and just want a check up, or you want to get a wart removed, you're going to need to wait until they're done with the really sick people.

You see, in a private system the medical system wants easy patients because they don't cost anything to deal with, and you can still charge them tons of money. $200 for a 5 minute visit with a patient who's not sick is a better deal than $200 for a 30 minute visit with a sick patient. The incentive is to avoid specialized disorders, not to give them priority.

A public system's incentive is in keeping patients from getting sicker because the sicker your population gets the more it penalizes the system. The rich patient with a cold will get better regardless of if you see them. The poor patient with crohn's will not get better unless they get help. Give the guy with a cold priority and you're going to be shelling out a lot of resources for the crohn's guy's resection.

Did you know we charge $3,000 to flush a PICC line with a $2 anti-coagulant solution? In a public system you can remove the $2,995 of profit and it only costs the people $5 ($3 for a well paid nurse's time and the other support costs).

 

[katiesue1506]

I suppose I should clarify that I'm not talking about Emergency room visits. I'm talking about scheduled consultant visits with specialists.

I see both sides of the arguments... it just bugs me when a blanket statement of public healthcare as being far "superior" is made... no form of healthcare is superior.

 

[GoJohnnyGo]

Pretty wide disparity in healthcare coast-to-coast in Canada actually. Federal government collects the funds, but health is a provincial juristiction. Some provinces have a two-tiered set-up that actually embodies the worst of either system.

Universal Health Care isn't what it used to be.

 

[Colt]

I find that most often Canadians just don't realise that the states have every problem they do, and usually it's worse here. In Nova Scotia my wife was waiting 15 to 30 minutes. In the states in a similarly rural area she waited 6 hours. I even waited 16 hours at one point. I'm waiting 2 months for my endoscopy. My wife waited 2 days for a CT and 2 weeks for an MRI.

We have just as many non-sick patients too, only they don't have as strong of a triage system to discourage them and get them to go home. Oddly enough going into unpayable debt only seems to stop the sick ones. We seem to only get patients at one extreme or the other.

More on topic, I've been feeling like shit lately. Terrible abdominal pains, nausea, and quite a bit of mixed-in blood. It just won't let up and it's becoming very hard to resist collapsing at work. I've had to hold out until I can get somewhere secluded like a bathroom to hit the floor. I'm getting worse. Hopefully the scope will show something so I can get some real treatment.

It's starting to seem hopeless. The elavil and bentyl have long since become insufficient. All my GI can think of is to increase the elavil which hasn't made a single bit of difference since I went to 25mg. 75mg has only made me worse if anything. They were fine back when I was still on pred as well, but whatever.

 

[Colt]

Well, my intestines were in apparently pristine condition a few months ago so I should have plenty of time left before getting treatment. That is, unless the GI resident was right about crohn's of the stomach.

 

[Colt]

I'm leaving for my endoscope in about an hour. I've been NPO for 13 hours so far and I still have pain in my upper left so hopefully they'll get a shot of what's causing it. This is pretty much my last chance before the GIs right off crohn's forever.

 

[kello82]

good luck colt
i hope they can figure out what the hell is going on with you.
let us know what happens ok?

 

[Colt]

Will do, as soon as I recover from the anesthesia. If I get a positive result I'll get a copy of the video and post it as well. In fact I'll mail a copy to every doctor and med school in the country just to make sure it doesn't get lost like the last one did.

 

[Colt]

I'M NOT CRAZY!

Results were positive.

Findings: The gastric mucosa along the greater curve displayed focal erythema and erosions. The duodenal bulb also has focal erythema. No ulcerations were seen. Biopsies were done for H. Pylori.

Endoscopic Diagnosis: Focal erythema of the greater curve and duodenum of uncertain significance. Rule out H. Pylori infection.

That resident who suggested the scope gets a cookie. A big one. Even though he said it was impossible for there to be anything in my duodenum which we now know to be complete BS.

Basically they're going to try and write it off as H. Pylori and if it's not found they're forced to admit it's crohn's disease.

 

[Colt]

It's just shocking to finally be proven right after so many people insist I'm a hypochondriac, liar, or whatever. Years and years and there's the inflammation and ulceration (even if they're just erosions at this stage) right there in the picture. It just feels so good finally being vindicated.

 

[Colt]

As promised, pictures of the positive results. Unfortunately they don't record a video. They only take pictures.

 

[kello82]

yayyyy!
well not yay that you are sick, but you know what i mean.
all those people tellin you youre wrong, they really just needed to trust that you know your body. we all do. yet they STILL dont effing listen.
well, good luck with the rest of the results
what does this mean? are they gonna give you meds or what as they finally decide that it IS crohns. (duh)

 

[My Butt Hurts]

Nice to have some validation. Glad you're still staying strong Colt.

 

[bethyd78]

Colt
See you knew you weren't crazy. There was something wrong. Doesn't it make you feel relieved when they realize that. I hope all goes well with you.
Bethy

 

[Colt]

My GI was apparently so embarassed he chose to send in another doctor to give my wife the results before I had a chance to wake up. She actually said ''It doesn't look like crohn's." I'm not sure how it could look any more like crohn's really. It's inflamed tissue forming ulcers in the GI tract. That's sort of the definition.

They're throwing all their hopes on culturing H. Pylori so they can just call it regular stomach ulcers. They gave me a script for prylosec. When my wife asked what about if it doesn't show H. Pylori and the doctor told her "We'll have to reconsider things."

I think at this point they're just feeling humiliated because they were proven wrong and really want to find a way to save face. I don't know how I'm going to keep a straight face if they try to tell me that I've had an H. Pylori infection for 8+ years despite enough flagil to cure C. Diff 2 or 3 times over.

The tests negative for inflamation and the negative pill cam are worthless now too. It proves that my results must have been positive before the pred and I was right that my negative results were only because of the pred. According to them I can't have ulcers and inflammation in my duodenum because they were not on the pill cam... yet there they are.

It'll get even funnier if they try to tell me I was perfectly healthy until I got an H. Pylori infection a day or two before the scope. Bergy's due in here to tell me that H. Pylori is one of the potential causes of crohn's disease as well.

I am a little worried, though, that they're only going to culture the biopsies and not examine them to identify the crohn's style inflammation pattern.

 

[D Bergy]

Congratulations, although that seems not quite appropriate.

Now, maybe you can get the treatment needed.

Good Luck.

Dan

 

[Colt]

I consider it a great occation for precisely that reason. I'm never going to get better until they stop screwing around and treat the real problem. I'd gladly take a month in the hospital for a life time free of uncontrolled crohn's.

 

[kello82]

have i asked this before? can you get a new dr team?
they sound like complete jerks. that they cant even come in and tlak to your face to tell you the results. and with "we'll have to reconsider things". trying to skirt around it.
glad SOMEthing is finally happening though

 

[Colt]

Well, from what I've learned from my wife I don't blame them for trying to avoid me, and for being a little pissy. Apparently the sedation had left me without a short term memory. I'm told I asked the doctor and the nurses the same set of questions over and over. I was unaware that I had just asked the same question and received an answer less than a minute ago. What I remembered as right after my procedure was apparently about 30 minutes after my wife came back to the recovery room.

The sedation knocked me for a loop this time. Usually it's not too bad. I woke up during both of my colonoscopies, though not in a bad way. I told the nurse that and I may have ended up with a much higher dose this time because waking up in the middle of an endoscopy is an entirely different experience.

Considering my main question I repeated a hundred times was, I'm told, 'So, is it crohn's?' I'm hoping not to get slapped with an obsessive hypochondriac label.

I'm still not sure if they'll admit to the crohn's if it's HP negative or if they're just going to call it 'idiopathic.'

If they go the idiopathic route I have reasonable grounds to ask for a different GI simply because my currently GI doesn't know what's going on and someone else might. Changing my GI attending because I think he's not good enough to handle my case, without an admission from him, is likely to be taken as doctor shopping and have me labeled as being a hypochondriac.

At the moment everything is just riding on those biopsy results. I'll just have to wait and see on Monday.

 

[Colt]

I'm actually starting to doubt the IBS now. The main argument for the IBS was that it was occurring when I ate. Now we know it hurts when I eat due to ulcers and inflammation. I'm steadily getting worse too. I've in this light decided not to refill my bentyl as I don't think it was doing much of anything anyway. I was only remembering to take it after I had eaten and the pain was probably only subsiding because of the food progressing past the affected area. So now I'm not screwing around anymore. I'm just taking my darvocet. Not taking it results in so much misery after eating that I can't stand even the idea of eating again for a long time. I'm requiring a lot of effort to reach my 2,000 calories for the day.

 

[Colt]

I'm in Nova Scotia at the moment. Finishing up the last of my 2 week vacation here. My activity here has gone to pretty much zero with the combination of this vacation and my lack of internet at home (my mother-in-law finally moved out and we've been too busy to get various things switched over).

I've been steadily getting worse and worse. I've been going numerous days without eating, my weight's been slowly slipping away from me, there's the pain of course (I'm trying hard to ration my darvocet too, which is getting difficult, to avoid the seemingly inevitable drug-seeker label), and my bleeding has gotten to frightening levels.

 

[D Bergy]

Can you do the liquid diet thing, like Ensure? You can't go on this way too long. I know that from experience.

What became of the biopsy results? I have mentioned this before, but I do not believe H-Pylori tests are accurate for low level infections.

Dan

 

[Colt]

No sign of H. Pylori. Findings were chronic inflamation. No signs of acute inflammation. H. Pylori causes acute inflammation. No granulomas noticed in the biopsies they took, which I'll bet my doctor takes as it can't be crohn's. In reality granulomas are difficult to find with crohn's of the stomach; likely due to the environment and nature of the stomach lining.

Since I don't drink, I don't take NSAIDs, and they didn't remark on any defect in my pyloric valve that could cause bile reflux the only real option left is crohn's disease.

As for food I'm able to eat reasonably now. Not well really, but it's good enough. It still hurts when I eat and such but I can handle it. Right now my main concern is the bleeding. It's a lot of bleeding steadily over a long time and it's likely given me some anemia.

 

[Colt]

I had another appointment. They wouldn't even talk to me about my stomach. All I got was 'It's not H. Pylori. It's just inflammation.' They refused to discuss a cause, prognosis, treatment plan, or anything else.

Basically one of their residents went looking for crohn's, found it, and now they're just pissed off. In general they're pissed off at me and most of their interaction is spent trying to catch me lying and yelling at me. I'm not supposed to have chronic inflammation and ulceration in my stomach, I'm supposed to be cured with elavil and bentyl, and I need to stop all this damn bleeding and pain. God, I'm such an asshole.

They did order some blood tests and a CT but honestly they only ordered them to avoid a potential malpractice case and to try to catch me lying. They ordered a blood count not to make sure I'm not suffering from anemia, but to prove I was lying about the bleeding.

I've got a CRP, CBC, and CMP out and the CT coming up. If there's not extreme results (positive isn't enough for these guys) I'm basically screwed. They're going to set that attitude of theirs in concrete and continue treating me with infinitely increasing dosages of drugs that one of them admitted at my last appointment are doing absolutely nothing and that I should be taken off of.

I'm getting treated like a psych case more and more and I'm sure the defence of the elavil by the attending, and decision to increase it to about 10 times the IBS dose, was based soley on the idea that I'm depressed and just being whiney. I've just recently gotten back to my level of illness pre-pred with the joint pain and all and frankly it's now looking like I'll be doing no different with or without health care.

 

[drew_wymore]

Jesus Colt. Your Dr team sounds like my previous GI who gave up when he couldn't figure it out and stopped returning my calls and took me off the meds I was on and that was that. It took me going to my PCP and going this just isn't right and getting a referral to a place where I knew they'd help me and they finally have, they dragged their asses too but at least they're close to an answer for me. If you were out West I'd definitely recommend my current GI and Hematologist to you.

 

[Colt]

I'm in the midwest actually. The main issue here are the negative tests I had when I was on high doses of pred. When I first came in they were convinced it was crohn's based on my symptoms. It's still standard uncomplicated crohn's disease but they are convinced that crohn's is extremely easy to detect and any negative test, no matter what, is impossible. Since I had negative tests I'm not really sick and probably crazy or drug seeking.

For them, if it's not absolutely clear to be something it can't be that thing. When you have something like crohn's hat comes and goes wherever and whenever it pleases that diagnostic strategy doesn't work at all. I can only imagine all the other people out there suffering from things like crohn's that they've dismissed as being not the cause despite what should be a 90% sure diagnosis.

This again reminds me of a former coworker who had a fistula run clear down to his toe and still didn't get diagnosed for 2 or 3 years afterward. It's funny how IBS doesn't require any tests whatsoever to diagnose it and yet IBD can't be diagnosed until you're looking at surgery (and many times not until after a surgery or 2).

 

[D Bergy]

This is what happens when doctors use test results to replace their brain.

I swear there are some doctors that if their foot had a nail through it, attaching it to the floor, and a test said the nail did not exist, they would believe the test and die nailed to the floor.