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Old 01-04-2008, 11:51 AM   #1
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Posting vent of my mystery illness

I've been sick for three months. Sick with no real explanation and because it's my digestive system it's embarrassing to talk about. This post is more of a vent than me looking for answers. I know this is impossible to figure out. I am 37 yrs old.

I am uncomfortable everyday with increasingly painful days. They took out my gallbladder about 6 weeks ago because it was not functioning, thinking it was the cause of my left sided pain/cramping. The pain persists and is exactly the same as before the surgery. I lost 30 lbs effortlessly the past month, but I did recently gain 5 of it back. Lately I've also been achy, everywhere. Mostly my back. I do have some lower back pain accompanying the abdominal pain but now my whole back aches even when I have no abdominal pain. Nausea is present more and more, although I think it's associated to a medications they have me on. I continue to take everything because the doctors think it will make me better, but they are not making me better. Miralax seems to be the one causing the nausea, but because they keep telling me I am constipated, I take it along with benefiber. My stools are soft yet I can't seem to have a movement more than once a week which is the cause of a lot of the discomfort. Last week I had a day of BMs which made my abdomen hurt so bad that I cried most of the day and had a BM (lots of soft filling the toilet) every hour or so for a whole day. I never feel empty, even after that day. 5 days passed and no BM and started to get pain, I increased the miralax with no result and on the 6th day I took 2 correctols before bed. Noon the next day I had some diarrhea (painful cramping) and made two trips with lots and then it stopped. It's now 2 days since that and I am so uncomfortable still and still make trips thinking I'll go and I don't. Before this, my entire life, I only had a BM 2x/week at most. So the frequency really isn't a problem, but the pain/discomfort is.

I'm angry at doctors for blowing me off, for making me wait long periods of time between tests. My local doctor is listening but that doesn't make anything move along faster. He offers me pain pills, but I don't want pain pills.. I want to be better. I have too much to do, besides working in an office environment most of the day, I also have to go out most evenings to take photos. I typically get home after 9:30PM. I have three kids that need to be fed and picked up after and transported around. This is all so hard when you don't feel well. I'm glad my local GP has known me 10 yrs and knows I am typically healthy/happy and that I don't see him for every ache and pain. In fact he gets angry that I let stuff fester too long by the time I see him (say a sinus infection or something).

My local doctor took some blood this week to test for tumor markers. He says no one has done that yet. They've checked my thyroid and just about everything else. I have a colonoscopy scheduled for Mid-January. I was also told to see my gyn, since I skipped last year. Something in that area may be the culprit, I never considered that. What's funny is I did have an appt with them and they canceled and couldn't get me in for another month... then I canceled because the GI doctor scheduled a test on that day. Wouldn't it be hilarious (not really) if when I finally see her (Jan 21st) she can tell me what is causing the problem? Oh and I was told 2 yrs ago (similar problems) that I had Crohn's after a colonoscopy. I was treated with steroids and got better for an ENTIRE year. Then it was off and on, always getting better with steroids, until 3 months ago when they stopped making me better. Now they says I do not have the markers in my blood work for Crohn's.. so I don't have Crohn's. (they didn't have that blood test 2 yrs ago and it was a guess it was Crohn's due to symptoms). So what the heck do I have?

Summary:
•Always uncomfortable and feel like I have to have a BM even after I have one
•mucus and occasional blood on stools (or just by itself)
•rectal bleeding about 6 months ago.. lots of blood filling the toilet off and on for two weeks, no pain at that time and no tests were run.
•abdominal pain, which is piercing like something is stabbing me (left side)
•rapid weight loss
•Stools were formed better before miralax but miralax and et al have not made anything move faster/better

Small bowel series = normal with a slow down on the left side
CT = enlarged uterus, small abnormalities on top left and right nodes of liver (considered normal reading), full of stool (really?! )
xray at local GP = full of stool (again, really.. was the xray necessary?)

taking levbid 2x day, benefiber 3x day, miralax 1x/day (sometimes 2x) and now doxycycline 2x/day
I drink water constantly (and mix the benefiber and miralax in)

 
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Old 01-04-2008, 01:55 PM   #2
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Re: Posting vent of my mystery illness

Just heard from my GP, my CA-125 test came back elevated. The test doesn't mean I have ovarian cancer, but means I have to have further testing. My GP said that my CT scan (from TWO months ago) recommended a pelvic ultrasound, which I haven't had yet. He's scheduling it for next week. This still really doesn't explain my bowel troubles, unless my uterus is pressing on something. It is pushing into my bladder (showed a test two years ago, but I was told that's OK).

My GP is the most helpful, all the tests were ordered by the gastro but I requested the GP get copies. I'm so glad now that I did- he's the only one following up with the results.

I'm so annoyed.

 
Old 01-04-2008, 05:33 PM   #3
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Re: Posting vent of my mystery illness

Be careful taking the Doxycycline everyday. I was taking it for quite awhile and I have IBS. From the Doxy, I came down with Clostridium difficile. Believe me, you don't want to get that on top of your other problems. I now won't take any antibiotics, unless they are absolutely necessary! Do a search for Clostridium difficile or C. diff and you'll know what I'm talking about. It can be caused from taking antibiotics, mainly the "cyclines".
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