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AgB621

AgB621

Joined
Jun 8, 2008
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223
So I already got the results of the biopsies from my colonoscopy and they were NEGATIVE!!! The doc said all those yucky ulcerations I had healed up very nicely. So the Crohn's diagnosis we'd been so convinced of actually seems wrong! Everything he saw must have just been related to the infection I had, I guess. I get to stop the Asacol and everything, yay!

Still, this means the symptoms I do have are still without explanation. My brother is convinced I have IBS like he does, and our symptoms are similar. I still get stomach pain, nausea, bloating, fluctuations in my appetite, gas, occasional diarrhea and stomach sensitivity to milk and greasy foods, not to mention the chronic fatigue, but not having Crohn's is a huge relief. I'm hoping my doctor still has something to offer in terms of these symptoms, which have been a constant bother for years and years, but my follow-up isn't for another few weeks.

Anyway, I wanted to thank all of you for being so supportive! I'll probably stick around the forums though, just because I don't seem to have Crohn's doesn't mean I am without intestinal woes, and that's what this site is for :)
 
woohoo!!! that is great news indeed!

so - its definitely not Crohns, maybe your brother is right, could well be IBS.

and please do stay around the forum!!!

:)
 
That is very good news, but just know that your test results can be negative for a while. So be sure to alert your doctor of any different or severe symptoms!!

Yes, do stick around!
 
Awesome, hopefully a concrete cause can be confirmed soon, so it can be addressed accordingly...

Does anyone else feel if this was to strangely happen to them (out of the blue, even though some of our Dx's are so well established) that they'd feel bad for the people with it still, like they've cheated it. Picture this, you're terminally ill, and have a hospital roomate who has the same 2 months to live as you, yet, they find a cure for you, and you're 100% fine and going to be released the next day. Wouldn't you feel horrible for that guy next to you though, like you got a free pass, and for what?

Least that's how I'd feel if they told me I did NOT have Crohns and it was something a bout of special meds would fix.
 
BWS1982 said:
Awesome, hopefully a concrete cause can be confirmed soon, so it can be addressed accordingly...

Does anyone else feel if this was to strangely happen to them (out of the blue, even though some of our Dx's are so well established) that they'd feel bad for the people with it still, like they've cheated it. Picture this, you're terminally ill, and have a hospital roomate who has the same 2 months to live as you, yet, they find a cure for you, and you're 100% fine and going to be released the next day. Wouldn't you feel horrible for that guy next to you though, like you got a free pass, and for what?

Least that's how I'd feel if they told me I did NOT have Crohns and it was something a bout of special meds would fix.
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If life were simple yes -- say that was me, what you might not know is that I have 3 other lifelong disease I must manage that cause me emotional and physical heartache. Then again I could be fine medically but am being abused horribly and afraid to leave. Maybe I have a dying child at home

etc. etc. etc.

If there is anything I have learned in my life is that the human condition is pretty universal and stress, pain, and heartbreak are felt by ALL just not all for the same reasons.
 
Isla said:
If life were simple yes -- say that was me, what you might not know is that I have 3 other lifelong disease I must manage that cause me emotional and physical heartache. Then again I could be fine medically but am being abused horribly and afraid to leave. Maybe I have a dying child at home

etc. etc. etc.

If there is anything I have learned in my life is that the human condition is pretty universal and stress, pain, and heartbreak are felt by ALL just not all for the same reasons.
Click to expand...

This is how I deal with everything. Just remind myself that there are always people worse off than me! :)
 
Yeah I was aware of several afflictions/diseases for you, like you said, just added one more when you found out about Crohns. :(
 
Creepy Lurker said:
This is how I deal with everything. Just remind myself that there are always people worse off than me! :)
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Well thats not exactly my intention - more like I have or am enduring the worst. Because we ALL feel the same thing it is just our points of reference are different on the "scale." Like the worst pain I have felt is from kidney stones or kidney infections, second worst was labor, third was ovarian cysts, and fourth would be my obstruction (then somewhere among the top 10 is a broken bone.) Then Joe Schmoe (we will call him) breaks his ankle and says that is the worst pain he has felt. That the recovery was awful and he hopes never to break a bone again. The experience of pain, uncertainty, tests so on and so forth are EXACTLY the same. The only difference is Joe doesn't know know MY worst.

Joe and I feel all the same stuff just different circumstances - so no one is worse off. Pain is pain, fear is fear, happiness is happiness!
 
Yeah, truth is I do feel a little guilty or like I was somehow dishonest with you guys even though I was working with the best information I had available to me. When I first got the call, instead of jumping up and down for joy it was more like, "...oh." I'd already set about trying to redefine my understanding of myself based on this diagnosis and having it suddenly taken away felt like I had to undo all of that. I felt pretty confused for awhile, sort of like that person who had come to peace with a terminal illness only to be told that it had all been a big mistake and they were fine. That might be an extreme example, but the feeling is similar.
 
I am so glad for you that you don't have it.

I keep hoping to get a phone call from my doc saying "Oh, we've made a mistake. What you really have is an infection that can be treated with antibiotics and will go away forever after that!" but no such phone call has come :(

But, then I feel really bad for you in that you still don't know what you have. I feel a big sigh of relief that at least there are answers for me - it was really scary not knowing the answers. I really hope that you find what is wrong with you.

(and I hope its not IBS either - my dad has that and sometimes it seems like its not much better htan crohns! At least with crohn's you have some sort of treatment!)

I hope that for you the doc finds some sort of infection or something that can be treated and cured by taking a few pills - and that when its done you'll never feel the pain again. (I know.....I have high hopes)
 
Reese1603 said:
I hope that for you the doc finds some sort of infection or something that can be treated and cured by taking a few pills - and that when its done you'll never feel the pain again. (I know.....I have high hopes)
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I don't think it can be an infection, I already had one of those (which is what they thought had triggered the Crohn's in the first place). I was on Vanco for 7 weeks, I doubt too many infections could have survived that! My stomach issues have been going on for a really long time, I was sort of informally diagnosed over the phone by my doctor with IBS back in high school (7 years ago or so) when I called to complain that I was having diarrhea every day. I've gotten pretty used to it though, the same way I've gotten used to the fatigue. I feel it and I hate it, but I find ways to cope. I'm hoping my doctor has something more to offer me, I guess I'll find out!
 
Congrats AG! Don't be afraid to get a second opinion.

Keep in mind that it is up to you to hunt for an answer now. I followed my family doctor for way too long before I kicked him to the curb and started to fight to find out what was wrong! I guess I got used to feeling sick and that became my baseline.

It took me over ten years to find a doctor who discovered I had Crohn's.

It started with bad stomach pains that lead my family doctor to say that it was due to a small umbilical hernia that I had since birth. I followed his advice and had a hernia operation. The operation did not help!

I followed that up with two operations to repair a large boil or fistula. They still did not know it was Crohn's.

I went back to the doctor with what I thought was chronic fatigue and he put me on Ritalin. That helped with my energy but I felt like my head was going to explode! So he put me on Prozac because he said I must be depressed. I took it and then said this stuff is depressing, I am not taking it!!!

Three years ago my eye became red and painful. The eye doctor said I have Iritis and the root cause was one of many auto immune diseases. Crohn's was on the list along with Lyme. I went for blood work and I tested positive for Lyme Disease and they started me on IV antibiotics. I responded like someone turned on a light switch! I later found out the antibiotics is used to treat IBD! I felt great for about a year until my symptoms returned. Thinking that the Lyme flared up again I went back to the specialist and said put me back on IV treatment!. He said you don't have active Lyme anymore. I was so pissed off when I left!

This past winter I went to marriage counseling and Doctor G lead us down a road that I did not expect. She said you are Ill and that is the root of your problems! I followed her advice about diet and I found a good GI doctor who sent me for all of the tests. X-ray, CT scans, Upper, Lower, biopsy's, blood work, ect... And I came back positive for Crohn's.

When I was diagnosed with Crohn's I actually felt relived! For the first time in my life I knew what was wrong and I could do something about it!

It can be a long road but it is something you have to do!


Best Wishes,

Tim
 
Tim -

I definitely hear you on the baseline of feeling sick. I feel sick right now, in fact, but it's such a commonplace feeling that it hadn't occurred to me that there could be a very real explanation, that it isn't just me being a "drama queen" or a hypochondriac. I tend to ignore a lot of my symptoms for that reason. The same is true of the fatigue, though I realized today that the reason it's been particularly bad lately is because they gave me Zofran during my colonoscopy last Monday and anti-nausea medication stays in my system for upwards of 2 weeks before I feel back to "normal" (such as it is!) I don't actually know what "normal" feels like :(
 
AgB621 said:
I don't actually know what "normal" feels like :(
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I think you hit the nail on the head! When you don't know what normal feels like you start to except feeling lousy! Your situation sounds like mine. First you need to determine what healthy feels like. For me that moment came when I had 3 months of IV antibiotics. I was amazed at the difference. For years I was down on myself because I could not keep up with other men in my age group. I struggled just to go to work everyday!

Have you gone for a second opinion?
 
I haven't gone for a second opinion, but I probably should. I'm afraid that, with absolutely no idea how to fix the fatigue, which I have had non-stop for 11 years now, there's no way for me to figure out what "normal" feels like...I feel sort of at a loss. The stomach discomfort is annoying, but it isn't as debilitating as the fatigue. And I just have no idea where to even begin fixing that, I've tried so many things!

I really like my doctor though, he's very compassionate and when I got sick, I called my GP to ask for a GI doc, he called back in 10 minutes saying this doctor would see me and I should go in immediately...I later found it he books up 3 months in advance. I thought that was pretty nice. He's also been working with Crohn's for a really long time, so I feel like he'd know it if he saw it.
 
Fingers crossed for you AgB. The exhaustion can be a hard one to lick but you will get there and get the answers you deserve - Crohns or not.

Thinking of you ((hugs))
 
I just wish I knew what was causing the fatigue...it's been going on for so long. My GP thinks it could be something called "neurally mediated hypotension" because I have low blood pressure and when I go from lying down to standing, my pulse can go from 80 to 130. I've looked up the symptoms and they're spot-on, but the treatment is pretty limited. I'm highly sensitive to medication, and when my doctor prescribed something for it, he started me at 1/4 of the standard dosage, which turned out to be just massively, incredibly high for me. So we've reduced the dosage to 1/100th of the standard dosage, but I'm really bad about taking it cuz it's supposed to be one of those "same time every day" deals, and it's just annoyingly difficult when I end up out of the house and don't have it, etc. Anyway, I should really try it again, it has the potential to help I think. But my psychiatrist (who deals with all my strangely dosed meds) is away for 7 weeks (he deserves it, trust me, I've paged him at 3 am and he's called me back) so I can't make any adjustments until he gets back.

That was kinda long-winded, especially since I'm a little nervous...this morning I went to the bathroom and I wasn't sure, but it looked like there was some blood. I haven't had blood in my stool since I was sick. I figure I'll keep an eye on it, I have an appointment with my GI in two weeks, hopefully nothing will go too wrong before then...
 
It looked to be bright red. The colors were basically identical to what they were when I got sick, but the texture was different. My stools are basically normal texture now (I just feel like I'm going way more than I used to). I'll just cross my fingers that nothing major happens between now and the 30th when I have my appointment!
 
Hi there, in relation to a negative dxd of crohn's, do you know that it does'nt allway's come up as pos result's. I dont want to put a damper on it for you but maybe your brother is right !. My dxd was neg at first but after they did a test called (sorry i am shore it's called) double strenth DNA, it showed. I have a sister with another auto-amune disease called lupus and our symptom's were very much the same only mine affect's the bowel her's affect's all her vital organ's. Good luck anyway hope everything goes well.
 
So far so good off the Asacol, I just wish I knew what was causing all the nausea! I'm nauseous every single day, the other night I wasn't able to fall asleep until almost 4 it was so bad...I took a zantac first, then some emetrol, and finally some ginger tea (which I drank in the living room while shaking uncontrollably, but that was probably from being so tired). Anyway, haven't seen any more blood, and I have an appointment on Wednesday, we'll see how it goes.
 
My road has been a long one: diagnosed with coeliac disease over 10 years ago, didn't get much better on gluten free diet, diagnosed with IBS. Tried various diets and treatments, got nowhere. It was only after a camera capsule picked up strange lumps etc. in my small intestine that I had a double balloon endoscopy which basically goes further up your intestines by folding them back (apparently it hurt but I don't remember a thing thank goodness) that they found that all my small intestine was ulcerated.

I was initially excited because I thought "wow, finally something physiological they can do something about instead of airy fairy IBS". Now I'm no better off, and the drugs don't seem to help much so far. IBS apparently responds quite well to a high soluble fibre-rich diet (eg. potato and rice over rough fruit and veggie fibre say- even though you should still have fruit and vegetables) with low fats and dairy. Diet for IBD is still a controversal subject from what I understand.

I once (when I only knew I had IBS) went down to rice, fish, and a couple of well cooked vegetables for every meal in desperation (NOT recommended...you can get taste fatigue and should have a variety of foods). Seemed to help for a little while then not so much. Part of the reason I figured there must be something more physiologically (not psychologically!) wrong with me...and I was right. Yay (not).
 
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"Airy-fairy IBS"...I like that, I feel that way too. Maybe I'm wrong but it just feels like such a non-descript, not at all helpful diagnosis. I hope my doc has something more to say about it. Maybe I'll bring up the idea of the camera, there's probably parts of my intestine that they missed, even in the upper endoscopy and colonoscopy they did a couple of weeks ago. Do you have to be in a hospital the whole time for the camera? Either way, if it could give me some answers, it's worth doing.
 
I particularly call IBS airy fairy because there seems to be so very little you can do to control it: I did many diets (as I said) and hypnotherapy (which seems to help many), but didn't get anywhere: that could be because it turned out I also had Crohn's and that if I only had IBS it would have been a bit better. Who knows.

IBS, because it is a functional communication problem between the brain and the gut, while not more threatening to health like Crohn's can be, is less defined and you can't find 'proof', like you can with Crohns. There is also less research being done, I think, because it is so intangeable and random. That is why I thought being diagnosed with Crohn's was a good thing, because then there would be drugs that would help....naive of me it turns out, because I'm worse than even a year ago. They are doing some research here in OZ using worms to see how it affects Coeliac disease (another auto-immune disease I have) which may also have implications for Crohn's, but probably not IBS.

To answer you, the pill camera is very easy. They attach a sort of suit to you that makes you look like a suicide bomber (so don't go to any public places, ride a bus, or go to airports!!!) and the pill relays photos to the machine as it travels your digestive system. You can go on with life as normal (though there are some eating restricitons I think). No pain, no prep, no hospital (except to swallow the pill and fit the vest). It's only for a day. A colonoscopy and gastroscopy can only cover a few inches either end of your vast small intestine, so if your problems are further in (as my ulcers were) they can't see it normally. The photos the camera takes aren't as good quality as what they can see with an endoscope though, so they had me do the 'double-bubble' endoscope afterwards which can go furthur into your small intestine to do biopsies and have a look.

I hope that helps a bit?
 
Yes definitely, I will mention it to my doctor tomorrow. I've been so nauseous every day, and it's a very localized feeling, which my psychiatrist said seemed to be my small intestines. I thought the upper endoscopy would be helpful but maybe it didn't look far enough.

So what this could mean, then, is that I could have Crohn's, it's just high up in my small intestines, but far enough down that the endoscopy missed it? I don't know enough about Crohn's to know if my symptoms match...I have bloating where I feel like my stomach's been blown up like a balloon, and nausea, which I feel in sort of a band across my stomach, right below my ribcage, it's sort of "watery" feeling, like if I were to jump up and down it would make me sick. There's also the gas, stomach pain, and occasional loose stools...Well, I guess that's what my GI is for. None of this sounds as bad as Crohn's. But I know I don't feel as good as most other people feel (well, those who aren't on this forum anyway!)

Anyway, no use speculating further, my appointment is tomorrow and I'm hoping my doctor can give me some answers.
 
I definitely have all those symptoms...including dry retching and a lot of upper burping, and particularly bad right now too! But as I said, I have 3 digestive disorders, so who knows which one is causing it.

I see a new gastro in Oct. so hope to find something to relieve these symptoms.
 
A note on the fatigue, I actually had problems around last December with fatique I was pretty much crashing right after work with no energy to do anything so eventually I went to the hospital because everytime i stood up I would get dizzy and almost black out. After the hospital visit they sent me to a cardiologist lol... he told me after doing some test that i was fine and i just had a anxiety issue. a few months later i had serious belly aches accompanied by diarreah so i saw a GI and here i am :) still never got an answer from anybody regaurding the fatigue
 

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