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05-04-2012, 10:39 AM   #1
Gculk
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2.5 Years of Fun

Hi

I'm Nathan.

I've been having pains and whatnot for about two years now. Started off with just twinges and a mild cramp every now and then, but over the first year it evolved into a position where no day was without some discomfort. Some days it would just be "that does not quite feel right", other days it's straight up pain from dawn till dusk. All the while I was generally so constipated you'd think I was a rabbit from what I was passing. Then I started getting blood in my stool and having really bad fatigue symptoms. Then it finally gave up.

That was about a year ago ish. Since then, I had only mild symptoms, constipation every now and then and a bit of pain.

That was, until a month or so ago. I had a few days of mild diarreah (nothing like some of you poor folks suffer), and then it was back to the races. I made a joke of it to some of my friends. Went like this.

"I've got good news and bad news. The good news is I've only been in pain once this month. The bad news is that it started on the first and hasn't let up yet."

Then, and this is the one that really smacked me in the gob. Now sometimes when I have a bowel movement, I've got bloody mucus covering the feces. Before that, even though I knew I didn't have any, I could blame the it on hemorrhoids. It looks like someone got punched in the nose and sneezed all over my poop.

Oh, and another thing. It started localized to the lower right quadrant. The second flareup I had a twinge on my left side. This time it's at that simmer stage like my right side was before.

Also, having a bad doctor is terrible. For example, a GI that says it's a pulled muscle and hemorrhoids. Yes. Hemorrhoids, when you've three times had a front row view to see em, and a pulled muscle, that lasted 6 months, and that hurt during both my sigmoidoscopy and my small bowel followthrough. (I could have told em the exact minute the barium started passing through where I was having pain because I felt like I was being torn apart! xD

Finally got one that is trying to get stuff done. 3 weeks of being a patient and I'm being sent for colonoscopy #2

Hopin it's not Crohn's, but needed to rant

Nathan

PS: The WORST part of this is all the freaking false alarms! Going to the bathroom 7 times, but never having anything come out!

Tests:
CT: Clean
H. pylori: Clean
Sigmoid: Clean
Small Bowel: ~Clean (Part of the ileum was not clearly imaged though)
Colonoscopy 1: Clean except lymphoid hyperplasia in terminal ileum
Motilium: Helped with constipation, but pain is less while constipated
Colonoscopy 2: To be continued

Last edited by Gculk; 05-04-2012 at 10:41 AM. Reason: Title screwup
05-04-2012, 02:59 PM   #2
Cat-a-Tonic
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Hi Nathan, welcome to the forum and the club. I've been ill for about 2.5 years myself so I can relate! And I have hyperplasias as well, mine are "focal nodular hyperplasias" and I have 4 of them on my liver - they're not the cause of any of my symptoms though and don't bother me.

I'm glad to hear you've finally found a decent doctor and I hope the scope can find something. Like you said, I hope it isn't Crohn's, but I do hope they find something to explain your symptoms so that they can treat you and get you feeling lots better. When they do the scope, it would be a good idea of you to make sure that they take lots of biopsies, and also ask that they stain the biopsies for mast cells (so that they can check for mastocytosis). Good luck and again, welcome!
05-04-2012, 03:17 PM   #3
Gculk
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Haha, truly. If they don't find anything this time around, I just might go nuts I think.

And I'm going to tell them to take ALL the biopsies. I'll tell em to make me the freaking tetley tea bag with 2000 perforations to let the flavour flood out if need be.

It really does seem that the medical establishment needs a good shakeup. One of my friends with microscopic colitis, she said she was 7 years looking for a diagnosis.

I can't wait to have an answer.

Nathan
05-04-2012, 03:42 PM   #4
Cat-a-Tonic
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I read a statistic on here somewhere that, when it comes to autoimmune illnesses, it takes an average of about 10 years from onset of symptoms to diagnosis. I still don't quite want to believe that, but then again I don't doubt it's true either. It's pretty ridiculous though that with all modern medicine has to offer, people still suffer for years undiagnosed like this.

I laughed about the tea bag thing! Hopefully they don't take 2,000 biopsies, your insides would look like swiss cheese! Eek! I've just had one colonoscopy so far and they took about a dozen biopsies from me, and I was in a fair amount of pain the next day. Of course they didn't find anything anyway. Next time I will ask them to take 2 dozen biopsies and I will ask for better pain meds! Ha ha.

Best of luck with that scope and the 2,000 biopsies and I hope you do get some answers from it. Please keep us posted on how it all goes!
05-04-2012, 04:10 PM   #5
Gculk
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Oi... 10 years. That's quite a long while. I think that says more about due diligence than anything though. It is my opinion that 90% of that is due to doctors ignoring tell-tale signs.

Once one of my coworkers was describing the back pain her mother had, about a sentence or two in I said she had a herniated disk, and she was quite surprised to hear it. It had taken the doctors like 5 years, to the point where it was disabling, to diagnose it.

I was hoping I'd get a rise out of the teabag one. I've had it in my head for about a month and I've always wanted to say it, just never got the right moment!

I had one biopsy taken last time, I never felt a thing afterwards, except the pain that had been there before, that is.

Also, one curious thing about my guts. I rarely have any more than mild pain when I am constipated. As soon as the constipation ends and I start getting regular, the pain comes full force, and god help me should I have diarreah. The one time I had diarreah while I was flared up, the pain flared to the worst it'd ever been except that time I went to ER. Luckily it didn't last too long.

So where are you to in your diagnosis journey?
05-04-2012, 04:48 PM   #6
Cat-a-Tonic
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Thank you for asking. My journey is on hold for now. My doctors had put me through test after test with no result and I was so miserable and ill. My GI decided to take a different approach and to stop the testing for awhile and try to get me feeling better. He had a hunch that I probably have IBD, so he put me on appropriate medication. He first put me on steroids which got my illness into remission, and now I'm on Asacol (mesalamine) to maintain remission. I rarely have symptoms nowadays, and when I do they're mild and usually brought on by stress or eating the wrong thing. I feel very well and mostly normal and I have my life back. But I cannot get diagnosed until I do flare up again - I can't go through tests now because they wouldn't find anything, seeing as how I'm in remission. So, I'm in limbo indefinitely diagnosis-wise, but feeling very well and really can't complain.

You only had one biopsy taken last time?? Sheesh, could they not be bothered to take more? One seems hardly worth it, I'm not surprised your last scope didn't find anything if they were that lazy!

As for the time it takes for diagnosis, with symptoms like this unfortunately it could be any number of things. IBD (Crohn's/colitis) does seem like the obvious answer, and some lazy doctors will just write you off as having IBS, but it could be other things like Lupus, Addison's disease, even cancer. Someone brought up intestinal tuberculosis the other day which apparently has similar symptoms too. So with illnesses like this, doctors do need to be really thorough and most doctors like to have hard proof (usually on biopsy) that it is Crohn's or whatever before they will give a diagnosis. So, I can sort of see how it could take 10 years in some cases. But I must say I am jealous of people who have symptoms for a short time, have one test and get diagnosed on the spot right away. Then there are people like my aunt who have had symptoms for 30+ years before getting diagnosed - so it can really go either way. The 10 year average isn't a guarantee, you could be diagnosed tomorrow or you could be diagnosed years from now. Just have to not give up and keep searching for answers!
05-04-2012, 08:04 PM   #7
Gculk
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That's good, great even. I was in heaven when whatever was on the go gave up for a few months, even without a clue what had happened to cause it in the first place. You don't realize what health is worth, until you realize that yours probably has an expiry date.

Heh, oh she's a lazy one. Her explanation for my symptoms when my colonoscopy came back clean was, listen to this. Seriously. It's actually awesome. She must have gone travelling to find the sand she needed for her next maneuver.

She said it's a pulled muscle (that must have lasted 6+ months at this point), and a hemmorhoid (that mixed black blood in my stool, and was also invisible).

Oh dear that was frustrating.

My new family doctor is on my side, from my seeings so far, so I've got no fear of the dreaded IBS BS. She explicitly eliminated it as a suspicion because of the blood and mucus, which tells me that she is actually listening to the patient.
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