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Just feel like giving an update

Yes, I could see that. They would do a CBC and determine that if there was a nail in their foot they must have a low red count due to bleeding and an infection from the dirty wound. After all, you can't have a nail in your foot without severe bleeding and infection.
 
CT came back relatively fine, as well as the blood work. At this point it just looks like an extremely severe case of IBS. Crohns' contribution at the moment is very little. Unfortunately, what would be relatively mild inflammation and erosion in my stomach/duodenum gets magnified many times over by the IBS and means it's about as bad as moderate crohn's without any the treatment options.

If it were just crohn's there would be treatment that could fix the problem. Unfortunately, because it's mostly IBS there's practically no treatment. I'm already taking all the meds that are used for IBS and they're not doing a thing to help me. It looks like I'm pretty much at the end of the road. I'm just going to be suffering forever. I'm basically just going to have to be popping narcotics for the rest of my life. That is, if things don't go how I think they will with me being labelled a drug seeker.

My cardiologist told me she's pretty much going to have it out with my GI over the endless dosage increases with elavil. It's not accomplishing anything and it's likely contributing to my tachycardia. She was going to page him after I left so they've probably already talked about it.
 
To keep it up to date the CT came back with nothing.. except fatty liver. There's no reason it should be there. I have absolutely no risk factors for it whatsoever but it's there anyway (well, other than it can be caused by IBD). It could explain some of my abdominal pain and it makes my GI look really stupid when no one did anything to check into the low anion gap in my CMP 9 months ago. Not a word from my GI's office about it BTW. I had to get the results from the lab myself yet again.

Also, another twist. You may remember that back when my tachycardia started there was much suspicion and repeated testing of my thyroid which kept coming back just short of hyperthyroidism. Well, they just did an MRI of my mother's neck because of a ruptured disk and found a tumor on her thyroid gland. I also dug out of her that she's had unexplained tachycardia for at least the past 2 and a half years. So hyperthyroidism rears it's ugly little head again with the addition of a strong family history.
 
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Hi Colt, I have been lurking here for a little bit and this is my first post. I really should introduce myself at some point, but I'm a little shy. Anyways...I was reading your story and wondering if you have ever heard of Hemochromatosis (Iron Overload). I was in the process of getting diagnosed for Chrons, and they found that I had Hemochromoatosis. It can cause all kinds of problems with thyroid, heart, pancreas, ibs, abdominal pain and especially the liver. I think what stood out in your last post was your thyroid tests and the fact that you have an enlarged liver. I haven't gone through all the posts to see if you've been tested for this, so forgive me for if I missed something, but your symptoms are really close to what mine are. (I will at some point post my story), Here are a couple of websites to check out in case your interested:
http://www.ironoverload.org/
http://www.irondisorders.org/
http://www.americanhs.org/
 
I've never presented with high hemoglobin/hemocrit. In fact, they've usually been at the bottom end of normal. Hemochromatosis is clearly not the cause of my problems.

Also, my liver is not enlarged (though it could lead to that eventually). It has a focal fatty infiltrate. Being focal instead of diffuse infiltration would also mean hemochromatosis is not a likely cause.

Right now it's hard to determine what's going on. I have a lot of issues I shouldn't have at all, let alone in combination. It's a mystery at the moment and probably will remain so for a while because of the slow pace of my specialists.

Thank you for trying to help though.
 
Colt
I have a fatty liver my dr said it is very common and the surgeon that did my GB surgery said 90% of people had it. Just hang in there for years and years they said nothing was wrong with me my colonscopies came back normal and then suddenly everything showed up. They told me I was crazy drug seeking everyone thought I was off my gord. Well just stick with your persistence. Keep going back remember the sqeeky wheel gets the oil. I had the worst time of it. It doesn't mean it's not there bc it doesn't show up one time. Some of us are weird just like this disease. But I found a real good GI doc and stuck with him. I finally found out @51. I had complaints all my life. Especially the last 25 years.
Bethy
 
Your surgeon was BSing you. Prevalence is around 12% for people who will develop it at some point. In those cases there's always a cause. Almost all of them have alcoholism, diabetes, and/or obesity. None of which come close to describing me.

Thanks for the solidarity, though it's also a little discouraging. Suffering without proper medical treatment for 25 years isn't something I really look forward to. Getting re-diagnosed and treated in my 50s somehow makes it all seem pretty worthless. :(
 
Just another update so I can have a chance to vent. I've been shying away from the forum for a while now mainly just because I'd like to just not think about crohn's at all. It's depressing to talk about my situation because it's really reached such a hopeless point.

I'm now taking ridiculous levels of my medications. The elavil is at 100mg. It's only supposed to go to 50mg for chronic pain treatment. As far as I can tell the only thing it's doing is making me drowsy and at times delirious.

I'm taking the maximum dose of bentyl too, which is 40mg at a time 4 times a day (truth is I usually can't space it out enough to get the 4th dose in. I'm not waking up at midnight to take the 4th one). I can't tell if the bentyl is doing anything either. That is, except for making everything weigh twice as much and teaming up with the atenelol to drop my pulse/BP down to practically nothing.

I'm seriously amazed I haven't suddenly fainted. I keep that at bay, barely, with every fiber of my willpower. Atenelol's at 100mg trying to chase the damn worthless Elavil.

My pulse is really all over the place now; making life quite the roller coaster ride. I can't seem to make it into the right room (hooray for ID bracelets) half the time and the other half where I can find the correct room but I have to stop before I get there to let my heart rate drop and my hands shaking too much to handle a needle and to avoid fainting on the tachy end of it too.

As for the Crohn's/IBS/Hypochondria/Münchhausen's or whatever.. I'm pretty much at my baseline of suffering I spent the last 10 years with before getting some prednisone.

My joint pain is back with a vengeance and I really need to find the time to set up a GP to get that taken care of. I'm sure as hell not going back to that asshole rheumatologist no matter what. I'm turning into House limping around the hospital fixing all the difficult stuff. I'm even starting to get the same grumpy attitude. All I need is a cool flame-streak cane.

My digestion is just as screwed up as ever. Terrible constipation 3/4 of the time and then for a few days (like today) I'll have bile and mucus heavy diarrhea all day long. It burns too. I tend to go in the bathroom, put my mp3 player on and distract myself while I try to ignore the horrible things my body is doing to me. One of these days I'm going to get so sick of it that I'm just going to pound that damn body's face in. After all, he started it and somebody's got to stop him.

Pain hasn't been too bad. I still scream like a baby when someone (usually my son) bumps my abdomen but over the last week or so the extreme pain's been kept to relatively short periods of time so I can get a breather in between.

I'm starting to have trouble eating again too. My weight had stabilized over the month of June and now it's starting to dip again. I still have a few pounds to safely shed. Actually, I'm starting to wonder if I should even be trying to take in extra calories, or really taking any of these damned meds. They're not doing anything and I get the idea by now that I'm really not going to get any better. I might as well just try to ignore it all and hope that my intestines feel neglected and leave me the hell alone.

Grrr.. I can't even put together a decent post. I better wrap it up. I'm nodding off at about the end of each paragraph. At this point all this crap has completely exhausted me. I just can't keep up anymore. I'll probably just end up how I did with all my previous attempts at being productive. I'll be so worn down that I can't function and lose my job and everything else in my life. Maybe I should start trying to learn the harmonica or something for when I'm alone and homeless and I need to do some busking to keep from starving.

Moral of the story: Life sucks. :yfrown:
 
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Heh, well things have certainly changed since the last post. One of my GI's fellows is pretty decent. He's capable of standing up to the attending when the attending is royally screwing up. So...

We dropped the elavil and gave up on the IBS front (frankly thanks soley to my cardiologist's intervention), and I got put back on prednisone because "it's the only thing that's ever made any improvement." That was months ago. They he put me on 5mg just to see if it would do anything. Guess what happened.

My downward spiral stopped. I went to 10mg, and then everything went running the other direction and I got better. Very quickly. Life was great for quite a while. I was feeling like a normal person almost. Just a little trouble here and there every few days but nothing that could slow me down. BTW, the reason I'm posting this now is because I'm completely incapable of sleeping tonight due to the side-effects of that prednisone so, again, it's not perfect but I'm still pretty happy.

So I went back and really annoyed the crap out of my GI because I was so happy and it worked so well. Of course he's giving me prednisone and at the same time refusing to admit that I have an inflammatory bowel disorder because of a few negative tests a year ago while taking a crap-load of prednisone and me being at the healthiest I've been in 10 years. But whatever, I can see from the clinic notes that they're starting to crack and admit that maybe it is indeed possible to have mild crohn's disease without scar tissue and life-threatening complications.

So then the issue became let's get me off the prednisone ASAP. They just wanted me to taper as much as possible. So, instead I talked them into Pentasa. It's a low level inflammatory problem, right? Seems perfect as long as it's isolated to my intestines proper and not my duodenum or stomach (this is a good time to look back at the EGD episode). If it's my intestines alone the pentasa should be able to replace the prednisone.

So I started pentasa (of course they prescribed me half of the proper dosage because, as my GI says, he never uses it) and then tried to taper the prednisone. Well, each time I tried to taper all kinds of weird stuff happened. It's strange but I could watch the same chain of events occur each time where one symptom after another would chime in pretty much in the same order over the course of about 4 days. The pain was isolated to the upper left now (read: where the stomach and duodenum are) and my issues were largely bile-related.

I had one episode where I tapered to 5mg for a few days, got really sick, then I started the 10mg again and then had extreme overflow of bile. I was spitting it up, I was having tons of pretty much pure liquid bile D and so on. It just kept coming and my entire GI tract burned like hell. I took 2 tramadol and my last darvocet that morning. Then, after a few hours it just came to a stop and I started getting better again quickly. From what I can gather my biliary duct was closed off with inflammation, then the prednisone kicked in and unblocked it unleashing a flood of backed up bile into my system. Way more than I could handle.

So after 4 attempts to taper I've stopped the pentasa (it's super expensive and I can't afford it if it's not being used to get me off of the prednisone) and I'm waiting until after the december insanity to try the proper 4g/day dose of pentasa and taper again. If that doesn't work the pentasa isn't an option.

Why work so damn hard to taper when, by now, I know it's not going to work? 2 days after my last visit I FINALLY got a bone density scan. I have osteoporosis as a 25 year old male (just barely, but it's only going to get worse). That's insane. Frankly I haven't had enough prednisone for the prednisone to be the sole cause. My 'rheumatologist' screwed up even worse than I thought. I've likely been vitamin d deficient for years and years and this guy didn't even take it seriously when he had test results showing him that. Remember vitamin D is fat soluble. I have got to get off the prednisone or be stuck on it for life and end up with the body of an 80 year old at 30. I have to worry about falling and breaking my damn hip. I should be out playing football or something. That's only the beginning too. The prednisone's likely to take out most of the rest of my body too.

Anyway, to sum up what's going on with me is pretty much what I'd figured out before and my doctors kept wanting to blow off as nothing. Only now it's got a rapidly growing body of evidence. Proven simply by what does and does not happen in response to carious stimuli. Good ol' scientific observation.

Most likely I have crohn's primarily affecting my upper GI causing issues in my stomach and duodenum and thus affecting my digestive secretions in both places causing an odd little cascade affecting the behavior of my stools further down my system such as the vitamin deficiencies, fatty stools, and general fat and fiber related issues. I'm almost certainly having issues with my ileum and maybe a little in my colon which the pentasa was suppressing. My lower right (ileum) pain and tenderness pretty much disappeared with the pred/pent combo and without the pent did come back but still is well controlled by the pred.

Other possibilities (though much less likely) that need further testing are inflammation of my liver and/or pancreas that would also affect the biliary duct or bile production. This could be primary or secondary to the inflammation and damage to my stomach/duodenum.

P.S. I found today that even though I'm feeling so well I still can't eat salad. Damn you Olive Garden!!!
 
Salad is a tough one for most of us. I can finally tolerate it now, but could not for quite some time.

They really need to find an effective method to control the inflammation, as you cannot just stay on the Pred forever.

It seems like you have some of the most hard headed doctors in the universe.

I think you would be better of treating yourself, given the track record.

Good Luck

Dan
 

forum contributor

Captain Obvious
Colt! Long time no hear from, buddy! Glad you're back :)

I know that right now, this is all I've had on the brain, but I'll suggest it anyway. Have you thought about having your gallbladder checked out, if you haven't already? Before I had mine out a month ago, I had a lot of the same symptoms you're experiencing. After it was gone, ALL of them disappeared.

I had nausea, vomitted bile, D was bile, body stopped producing the enzyme that broke down fat and protein (had to take Creon before everything I ate that had any fat in it), fatty poo, severe abdo pain, burning D.... just overall crappy feeling!

Just a suggestion in case you haven't had that tested yet.
 
I was kind of throwing the gallbladder in with the liver and pancreas as it's really just a part of the ducts. But yeah, it could use a check. I did have a CT but all it picked up was some fatty liver which should be harmless and a result of the prednisone. Especially considering that my cholesterol levels are low and my fat absorption seems to be a little lacking at times.

I'm not sure how 'back' I am. Still not quite in the mood to spend long periods of time dwelling on the issue.
 
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Well, I ended up in the ER puking blood. In fact I ended up passing out while doing registration, falling out of a chair, and waking up in a pool of vomited blood. Pretty much the ER staff were just pissed off that I was making a mess.

The doctor was in the room for literally less than a minute and did not examine me or review my history. They didn't perform any testing of any sort. They assumed it was a virus because 'it's been going around' and knocked me out with a crapload of anti-nauseates. I spent a total of 2 hours in the ER before they kicked me back out. My nurse wouldn't even come back in the room until it was time to discharge me. A different nurse was so worried she kept checking on me but had no idea what was going on.

The doctor didn't even bother to really write anything down in my ER notes. I was shocked to go get my medical records yesterday and find that despite drawing a full rainbow absolutely no testing or significant charting was done. Everything other than the basic drop-down list stuff was left blank. He didn't even mention the blood that was the entire reason I went to the ER. No one seems to have even noticed what was going on. With my history I was absolutely sure when I woke up on the floor and saw the pool of blood I was about to be wheeled straight to the GI lab for a scope.

I'm still feeling like crap a week later and while I haven't vomited anymore blood I'm terribly nauseated and my usual UL pain has a very harsh burn to it.
 
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Yeah, I'm due to go to the GI on Tuesday but I doubt all that suffering will get me anywhere. It'll just be a shrug and move on thing like most of my other issues. I probably should have another EGD just to see how things are going, getting better or worse. I think by then I should be pretty much completely healed from the damage done that night. Right now I'm just dealing with a crushing migraine I think is either being brought on by the prednisone or pentasa.
 
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