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Undiagnosed but have had issues for years, anyone experience similar symptoms?

So I've suffered from all different stomach issues since I was 5. It's been simply diagnosed as IBS, but the doctor has said that my symptoms seem too severe for IBS at times. For example,

1) (Began at age 12) About three times a year, I get an episode lasting for 24-48 hours straight where the pain (in pelvis) is so bad I dry retch/vomit and comes in waves about 2 minutes apart and lasting about 20 seconds each. The wave gets worse and worse until it is relieved by a loud gurgle and the only medicine powerful enough to dull the pain is morphine in the ER. During the entire attack, I am unable to have a BM or even pass gas until the flare passes and I have diarrhea.
2) (began at age 10 and was dormant from age 12-21) About once every three months or sometimes several times a month, I experience severe, relentless (no waves) pain in the area where my stomach is (right beneath rib cage) and it feels just like a road burn (intense burning and pulling) only inside and sometimes causes vomiting, also only relieved by a narcotic and lasting around 9 hours. Sometimes I experience a duller version of this pain in my bowel area (navel region) and both episodes are usually accompanied by diarrhea.
3) (Began at age 18) In addition to the above and rather infrequently, I have sharp pain directly in my stomach which comes in waves and accompanied by urgency like I might vomit, same feeling I get when I've had food poisoning but usually without actually vomiting.

Other than this, just normal IBS symptoms about daily (strong spasms and occasional diarrhea). I am still undergoing tests but they have found nothing via blood test and some abnormal bacteria via colonoscopy when I was 10 (am now 22). I hope to hear your experiences too and please, be respectful. :) Thank you!
 

nativesith

GTA ModLeader Psx-Scene
Location
Hobbema,Alberta
Your story sound like mine, I too had stomach issues since 5. Doctors have not helped me since that time. Issues arose constantly. I just had a scope and colonoscopy that came up with nothing other than hemorrhoids and three parts of my stomach were inflamed . That was on Dec 27, surgeon said I should be NORMAL by now. I still can na eat, and when I do it is very lil. Lost like 50 pounds in like 3 months and it is still going on.
I know what this is like all to well.:(
 
Nativesith,

I am very sorry to hear about your experience too, but hey, at least they pin-pointed some kind of inflammation! Are you able to take anti-inflammatories to help with the symptoms?

My test results all make it look as if nothing is causing the pain and yet, I lose weight easily from not being able to eat as well, very frustrating!

Best wishes to you,
Sarita
 

CarolinAlaska

Holding It Together
Have they done a video endoscopy? That is how they saw my daughter's crohns. It was not clear with the other endoscopies until they did this test. It is all in the small bowel which cannot be reached by the scope. It is an amazing test where you swallow a video camera in a capsule and it goes throughout your GI tract taking pictures/video for about 8 hours, then you pass it.
 
Carolin,

This is an amazing method, only I have never heard of it. My father is a radiologist and the most advanced he has mentioned is an MRE, an advanced MRI which can view the small bowel in pretty good detail. Thank you very much for informing me of this video technique! I have issues swallowing capsules, but I'll definitely look into this.

Best wishes to you and your daughter!
 

CarolinAlaska

Holding It Together
Carolin,

This is an amazing method, only I have never heard of it. My father is a radiologist and the most advanced he has mentioned is an MRE, an advanced MRI which can view the small bowel in pretty good detail. Thank you very much for informing me of this video technique! I have issues swallowing capsules, but I'll definitely look into this.

Best wishes to you and your daughter!
My daughter was referred for this test by her GI doc to another GI doc who does these. Not all GI docs or institutions do them. It was very helpful for us.
 
Yes, I expect it's a rather new method and probably costly. Thank you again, though! I'm glad you were at least able to arrive at a diagnosis.
 

CarolinAlaska

Holding It Together
Yes, I expect it's a rather new method and probably costly. Thank you again, though! I'm glad you were at least able to arrive at a diagnosis.
Our insurance paid all but about $600. I think it was around $7000, in Alaska things tend to be much higher than in the lower 48. Do you have good insurance?
 
Hi!

Yes, thank you, mostly because my father works as a physician at our local healthcare chain (which doesn't perform this procedure), but there is always a way. Thank you again, Carolin!
 

CarolinAlaska

Holding It Together
On another note, what kinds of things have you tried on your own to help with your symptoms? Diet changes helped my daughter a lot. I'd be happy to share with you if you are interested in what helped her. I know everyone is different...
 
Diet changes helped a lot with me too...eliminating milk and I already did not eat beef or prok (hard-to-digest foods). Was it the same for your daughter?

Other than diet, breathing exercises to relax (because most have labeled it IBS which is triggered by stress), but only the medicines have seemed to help: anti-spasmodic, Gassex, anti-acids and-during a serious attack-narcotics.
 

nativesith

GTA ModLeader Psx-Scene
Location
Hobbema,Alberta
Ciprofloxacin and Metronidazole are the only medications (which I was given)that made any difference. The pain was somewhat bearable with that, and I ate more. My old doctor would give me nothing but Ibuprofen, aspirin, and Naproxen which all made me like way worse.
Pill Cam sounds amazing and I know that is what I need. Last week I tried discussing that with the surgeon , he just shook his head. However my new doctor said before the results to be prepared for bad new, as in he would see nothing. He knew it is in my small bowel, he said there was a way we could see and and he would look into it. Sounds like this might be the one! Please let it be.
I am drinking protein shakes(special K)that ave milk, water and really nothing else for the last two days, bleeding has stopped. Used the toilet once within that time.
Appointment at 1100 am tomorrow.
 

CarolinAlaska

Holding It Together
Gluten-free made all the difference for Jaedyn, also a chemical free diet (no artificial preservatives, sweeteners, flavors, etc). We try to eat as clean and natural as possible. I think this has helped her become much less symptomatic, although I don't think it has cleared everything (that is why she was recently diagnosed with Crohn's).
 
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