Newbie - Ugh, what's wrong with me??!

[tevs]

Hi everyone, great forum and the support on here is wonderful. All of this is new to me and I guess ignorance is bliss, I didn't realize there were so many undiagnosed people out there. Now I know firsthand. I was hoping to share some of my symptoms. Any input is greatly appreciated.

I'm 39, never had stomach issues and could always eat anything I wanted. I've learned, that's so easy to take for granted. :ybatty: Here's what's happened to me this year:

Mid May - Started having diarrhea just once a week, lasted 3 weeks.

End May - left sided pain extending into left mid abdomen. Had CAT scan, all normal, blood work all normal.

Early June through 3rd week June - diarrhea gone. Had another CAT scan during this time, normal.

3rd week of June through now - diarrhea back oo:along with strange pain approximately 2 inches to right of belly button. Today, pain on left as well like original time towards end of May. Diarrhea gets worse daily. Hard time keeping food down that won't go right through. Most times diarrhea has mucus in it.

Had right sided abdominal ultrasound yesterday, normal. More blood work, normal. Tested also for fecal occult blood, negative.

From what I've read, I'm too old to suddenly get colitis. In Feb 2013, I had a sigmoidoscopy for some bright red bleeding which was hemorrhoids, no other issues found at that time. I'm scheduled for colonoscopy next week.

I'm so terrified this is being caused by either pancreatic cancer or colon cancer. Although the CAT scan said pancreas normal and my amylase and lipase are normal.

Do these symptoms sound familiar to anyone?

 

[Orchid]

You can get IBD in your 30s, you're just in a slightly lower risk group. Plenty of people still get diagnosed at this time in their life. I'd suggest you push for a colonoscopy. It will help you see if it's colon cancer or IBD or something else entirely.

 

[valleysangel92]

Orchid is totally right, there isn't an age limit on IBD, I've heard of people getting diagnosed at age 60 and higher, so late thirties is no where near too old.

I know it's scary and I know it's easy to think of all the worst case scenarios, but the Internet is full of scare stories because those are the ones that get the most attention.. You hardly ever hear about the people that turned out to be fine because they are busy enjoying being healthy. So remember not to go putting too much faith in the things you read online or in the papers.

You could have IBD or diverticulitis or any number of other things, many of which are perfectly manageable.

Go for your colonoscopy and take it from there, until then, try to relax and not get too worried, whatever is going on, getting stressed won't help you feel any better.

 

[tevs]

Thank you both so much for your support. I think I have like some kind of medical PTSD because my mind always goes to cancer. I've had leukemia and had a bone marrow transplant in 1994 and then a relapse but I've been in remission since 2001.
Googling is the worst thing ever as so many diseases can be related to diarrhea. I just tend to pick the worst possible one and go with it!
I've lost 6 pounds in 5 days because I'm scared to eat. My stomach starts going crazy and making crazy sounds and then I get diarrhea. I seem to do ok with oatmeal and bananas although the bananas can be hit or miss.
Colonoscopy is next Wednesday. Will post with findings, I hope that gives me an answer.

 

[Axelfl3333]

I was diagnosed at 50 so it's not that unusual

 

[Catapalooza123]

Tevs,

Curious if your GI has tested you for Celiac Disease. If not, please have him/her do so. And, keep this in mind...I tested negative. Twice. But, have determined I am gluten intolerant and quite sensitive. I also have Crohn's , but you may not.

All the diarrhea and pain could be caused by gluten. A blood test will tell you if it's Celiac and a gluten free diet will tell you if it is intolerance.

Also, if your GI determines it is simply IBS, there are many medications you can take to help with the diarrhea. You do not have to suffer through it.

Good luck! And, push for that colonoscopy if the Celiac test comes up negative.

 

[StarGirrrrl]

The blood test can be somewhat unreliable for Celiac, the "gold standard" is biopsies via an endoscopy. You also need to be eating Gluten to get the correct result (if you're not eating it then the detectable antibodies won't be there to be found).

As I understand it people can also be intolerant/sensitive to Gluten without having Celiac disease.

 

[tevs]

Hi everyone,
So here are the endoscopy and colonoscopy results from last Wednesday.

Endoscopy:
Normal mucosa in the jejunum (biopsy)
Erythema in the Antrum (biopsy)
Erythema in the gastroesophageal junction (biopsy)

Colonoscopy:
Normal mucosa in the whole colon and terminal ileum (biopsy)

He said the erythema is likely from GERD and everything looks normal but waiting on biopsy results. I'm not sure what they are looking for in the biopsies. So frustrating not knowing and because of that, my mind keeps running wild with this obsession about pancreatic cancer. All my blood work is normal, done multiple times, two abdominal and pelvic CT scans normal except small hiatal hernia.

But I continue to have diarrhea or loose stools 5-15 times per day, my bowels make crazy noises for a good part of the day. I keep having this strange pain about an inch below my left rib that radiates to the side and sometimes to mt back. This is what I keep thinking is my pancreas. And pain two inches to right of my belly button.

Could this still be Crohns?

Thanks all!!!

 

[Catapalooza123]

Tevs,

Still curious if you have been tested for Celiac? I wouldn't stress too much about pancreatic cancer. You've had the CT scans and blood work. If something were amiss with your pancreas, they would know.

I am also assuming they've considered the gallbladder? Too much bile production will also cause diarrhea and intestinal rumbling.

Cat

 

[tevs]

Hi, Well I got the biopsy report back and everything is normal. I have not been tested for Celiac's but I have a call in to the doctor about that. I have all these tests I want to do, small bowel series, HIDA scan gallbladder (ultrasound and CAT scan said it was normal), fat absorption stool and parasites, SIBO, pancreatic enzymes in stool, MRI. I just don't know if these tests are reasonable. I think my doctor will think I'm crazy. Like everyone undiagnosed, I want to be proactive in trying to find out what the problem is. I guess I will wait to hear back from him to find out what the next step is. :confused2:

 

[Catapalooza123]

Definitely get tested for Celiac first. It is a simple blood test. Then demand a HIDA scan. My CT scans showed my gallbladder did not contain stones. Yes, that was true...but, the HIDA scan showed it was diseased and not working. You can have gallbladder issues without stones present.

You can demand all the tests and if you have good insurance, I would. I have done them all...some more than once. If you have a good GI they will run you through all of them. If they hesitate, demand it. It is your body.

Having constant diarrhea will begin to effect your quality of life and soon you will be afraid to leave the house. Please don't get to that point. Make your GI get to the bottom of things...or, find a new one.

Best of luck! Keep updating.

Cat

 

[tevs]

Hi Cat,
Thank you for your encouragement. My family and friends make me feel like this is in my head somewhat. Oh, your endoscopy and colonoscopy were normal and oh, your biopsy results were normal. So what other tests are you going to have now. I do have good insurance and I definitely want to proceed with more tests (Celiac definitely being one). 10 years ago I had gastric bypass surgery and I know a large percentage of people with gastric bypass end up getting their gallbladders removed. I think it's rarer to find one that still has their gallbladder. The 10 years flew by without any issues at all since the surgery. I'll definitely keep posting and thank you!
Tevs

 

[tevs]

Well, it looks like when he did the endoscopy and colonoscopy, he did test me for Celiac in the small intestine. That came back negative.
I found out on ultrasound, my gallbladder is partially contracted and the wall measures 2.9mm in thickness which is the upper limits of normal. No evidence of gallstones and no biliary ductal dilatation.

Here's some other tests done on one stool sample.
Occult blood, giardia and crypto, c difficile, campylobacter, shiga toxin 1 or 2, salmonella, shigella, aeromonas, plesiomonas. All of these were negative or none detected.

The gastro doctor's office called today and told me something about giardia can still come back negative yet a person can still have it so he wants to treat me for parasites before he does more testing. 7 days of Flagyl and if not better, come back to discuss what to do further.

Frustrating because I wonder if the CAT scan is just not showing perhaps there's a problem with the gallbladder causing this. I also have this gross oily/cloudy looking film in the toilet during a BM. It reminds me kind of like baby oil floating at the top of water (ok, not as thick as baby oil). Just wondering if it's time to switch doctor's or am I just jumping the gun.

 

[gotumtum]

Hey Tevs

Welome to the club you don't really want to join!!!

I would add to your list of tests a pill cam / capsule endoscopy. The endoscopy and colonoscopy can visualise a large part of the digestive system, but they miss the small bowel aka small intestine. Which is where some people their probs. A lot nicer than some of the other tests on your list, but pricey and some have to do a half prep.

I am in a similar boat to you - have done endoscopy and colonoscopy and still no answers. Thankfully specialist has ordered pill cam but I have to get approvals and schedule it etc.

If your Dr is happy to keep testing and help you find the answer and wants to help get you better, and they are not horrible to you, then keep them.

This is not in your head - I have the same problem too thinking it is in my head. Though I did get acknowledgement that it is not, and that it is significant, when the specialist asked how many bms per day, he raised his eyebrows in surprise.

Best of luck with your journey. We are here for you to vent, or ask questions, anytime direct to you from around the world, no charge (though we may be secretly on the toilet as we are typing!!!!)

I eat rice crackers or gluten free toast when my guts are unhappy (I choose to be gluten free though I am not celiac) Make sure you keep your fluids up.

Oh, and get your vitamin & Mineral levels checked - Iron, B12, Magnesium, Folate, Vit D, Zinc, Sodium, Potassium, GFR (Kidneys) Calcium, Albumin, Blood count, Liver Function tests, Pancreatic enzymes and also a 24 hr urine collection for catecolamines (Pheochromocytoma)
Fecal calprotectin (may have been done already)
CRP (may have been done already, but ask what the number and range and units were
ESR
Also get your thyroid checked - can cause d.

I would ask for a copy of all your results and keep them all in a folder (someone did a really good post on record keeping on this site. Just in case this is a long journey, as it is for some of us. I have had a couple of occasions where they have said results are fine, but they were not.

Best of luck!

 

[gotumtum]

Oh, Forgot to say, good news that celiac is crossed off the list with biopsy! However...Some people do seem to have an intolerance to gluten anyway. Some people stay off gluten and dairy till they are having no D or V and then go back on it when they are 'up to speed' again.

 

[gotumtum]

Hey Catapaloosa - Just a quick note to say - I am not celiac but have decided I must be intolerant. I am a different person off the stuff! Still on the diagnosis journey, but have made one change I will be sticking with as it helps with the brain fog and grumpyness! Kind of nice to see I am not the only one But sad for you as I know difficult it is

Sorry to go off thread

 

[StarlyteLass]

Eh, as is always the case with bowel probs, you often get treated as being a bit la ded da in the head even by the so called pros at times. That said if it's effectively being done private through insurance I don't see why having extra tests would be an issue, after all it gives you peace of mind and potentially an increased chance of getting closer to a diagnosis. ^^ Can't really impart any knowledge but good luck

 

[Emmyb2188]

:hug::hug:Just adding my voice to the people who have said your 30s is not too old to be diagnosed. My grandpa and I, in a surprising coincidence, were diagnosed at the same time. I was 24, he was 74.

Hope you get an answer soon!

:hug:

 

[Emmyb2188]

...I only meant to put the smiley in there once. Still, extra hugs aren't bad.

 

[tevs]

Thank you all. Will post more when I have more info. I will say I seem to be getting better. I pretty quickly went to several days with no diarrhea and no abdominal pain and then one day with. The stretches of good days have gotten longer. Now I may go one week with no loose stools or diarrhea (just normal BM) and then one day with 5 or so loose somewhat urgent stools with mucus, lots of gas, the strange abdominal pain. Then next day, back to normal. Not on any meds for this since I'm undiagnosed. Ugh!!!! I can say one thing, I so appreciate the week stretches of normalcy!!!