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Undiagnosed chronic illness help!

Jul 10, 2017 1:32 PM

Alright kiddos, I could talk about my poor health all day but today I'm going to dumb it down just a bit so it's not too much reading.
Sense I've been a small child, I've always had very chronic adominal/colon pain/problems, and a very weak immune system. Someone was sick, they would be better in a few days, it would take me weeks to months. And I have a very colorful history of suffering thanks to my organs so here's a list of symptoms I experience near daily:

*Moderate to severe adominal cramping
*Severe stabbing burning pain in colon/stomach
*Stabbing rectal pain
*Inconsistent stool and always in pain trying to poop.
*Large amounts of mucus in stool/often stringy/slightly bloody.
*Poops between 2-4 times daily and the texture changes
*Rectal inflammation/cramping
*Sulfric stench/daily oderous gas
*Pain in colon most if the times when I have sex (Vaginally, I never go thru the backdoor lol)
*Pain can increase during period
*Often constipated or having dierah
*Unexplained weight loss
*Moderate to severe oral ulcers along with all symptoms above.
*Low to high fevers
*Isn't better with diet/exercise
*Frequent need to poop, sometimes all that comes out if foul smelling gas and runny mucus
*Swollen lymph nodes
*Slow healing time
*Constant naseua
And a few other things I'm forgetting.

Anyways, I've been tested mostly for STD'S, and all have come up negative. I'm thinking I may or may not have some sort of inflammatory bowel desease, but whenever I bring it with a doctor they dismiss me saying to "Eat cleaner, get more exercise, drink more water, try muralax."
Thing is I eat really clean, a occasional visit to taco Bell is the only thing shy of making me a health nut. I drink tons of water and have pretty moderate physical activity. I've been suffering from all these symptoms sense in elementary school and as of late it's getting in the way of work and my home life.
Any suggestions about were to look for a dignoses would be splended.
I think my bilogical sex (female) and age (22) is what makes these doctors hesitate,,,but I've been in and out of the hospitals for most my life and I want to be taken seriously.

Jul 10, 2017 3:44 PM

Have you looked into endometriosis?

Jul 10, 2017 3:45 PM

Not yet! Definitely another one I've also been needing to get checked out, can it give you problems well away from your period too?
My only catch is I don't think I bleed alot.

Jul 10, 2017 3:47 PM

You can just have irregular periods... Lighter, heavier, longer... Anything, and it can start a week or 2 before your period and linger for a week or so after, so yes, basically all the time lol, but most doctors will tell you it gets worse during your period... I've been doing my own research because most Drs are useless!!

Jul 10, 2017 4:55 PM

It's true they really are! I have Celiac's/CDVID/chrons and coltis in my faimly and when I asked if they could just run a test for that at the least my last doctor was like "Nonsense, you just have heartburn and ur constipated,,,take muralax!" Even though I told him,,,I frequently have Diereah as well. So obnoxious.
But yeah I'll check endo out too!

Jul 10, 2017 5:01 PM

It could be IBS. Irritable bowed syndrome. I've had it for years. Mine is mostly with constipatiin but I know u can get it with both diarrhea and constipatiin too.

Jul 10, 2017 5:03 PM

I'm thinking that too!
Tho I have more symptoms for colitis than anything else :c I'm hoping it's ibs,,not that it's not any better or worse it just seems a little more manageable (I'm super scared of colon surgery)

Jul 10, 2017 6:46 PM

Get a new doctor. If they do not run tests until they definitively figure out what is wrong with you, or refer you to an appropriate specialist to continue running more specific tests, tell them you'll have to file a complaint.
From my experience, if your suffering goes without proper investigation/is dismissed for unclear/inappropriate reasons, motivating docs with career damage can finally get them to do their job.

Jul 10, 2017 6:50 PM

Oh I am, in going to aslo try and get checked by a female doctor and see if that makes any difference. I keep getting a bunch of old white guys who just keep telling me to change my diet
And that's a good idea ;)

Jul 10, 2017 6:55 PM

They're being ageist, assuming that you being young excludes the possibility of anything destructive going on. But your symptoms point to destructive activity in your upper and lower GI tract. I'd recommend upper and lower GI endoscopies with biopsies of anything unusual, and tests for h pylorii. If they find nothing, that doesn't mean you're fine. It means they should keep looking.

You may, at some point, undergo an elimination diet. If you do, it is critical that you adhere strictly to it.

Jul 10, 2017 7:01 PM

They really are, their also assuming I'm over exaggerating my pain levels just because I'm so use to it that I can speak about it casually.
And thank you I'll bring these tests up when I see the new doctor in agust.
And yeah definitely! Honestly I wouldn't be mad at them suggesting a change in diet if they A; susspected a possible food allergy's /food trigger and tested me for that B; gave me good examples of what to eat instead. I've literally found most of my non irritating diet online after I got sent home because the doctor just vaugly said "eat cleaner" and didn't specify what he thought wasn't helping my symptoms other than alchol (which I am a very occasional drinker, I'm too sick to drink all the time and I told him it's like 3-4 times a year and he didn't believe me I guess)

Jul 10, 2017 9:18 PM

Another idea if a food sensitivity. I was having a lot of tummy issues. I did a blood sensitivity test and came up highly sensitive to dairy and egg. I already knew about the dairy. I removed egg from my diet, which I had been eating daily, and after 2 weeks I felt remarkably better. Then a couple months in I went to breakfast with hubby, and he convinced me to try my favorite egg dish again. I was physically ill in less than 5 minutes. My pain level was high for several days after. Swelling, muscle pain, and lots of tummy troubles after eating that egg.no more eggs for me. The blood test is not main stream and not covered by insurance. It was$186 I think and tested 96 possible foods.

Jul 11, 2017 4:45 AM

Have you seen a GI? Sounds like a lot of the symptoms to What I have Crohn's disease! I really hope it's not in your case I wouldn't wish it upon my worst enemy it's truly horrible 😱 😤 overwhelming!!! Smiles all day 😉

Jul 11, 2017 4:50 AM

Upper endoscopy and colonoscopy are two of the tests they can do for diagnosis of Crohn's disease!! Normally a good clear colonoscopy can let you know rather quickly!! Hope this helps!! Smiles all day 😉

Jul 11, 2017 6:16 AM

Thank so much ❤️❤️ all of this has been really validating and is giving me hope on not giving up my persuit of what's wrong. I'll definitely see a GI and get my colon checked first and for most

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