Just Trying To Figure Out What's Going On!

[Razzyirt]

Hi All;

I'm fairly new to these forums, but they sure are a great place to vent to people who you know will understand how you feel!

I did post in another section, before I realized they had this undiagnosed club...so, yes, I am undiagnosed right now. Before a few weeks ago, IBD hadn't even crossed my mind.

So...to make a long story short, probably 10 years ago I was told I had IBS. I never did have any formal testing done, they just diagnosed me based on symptoms. I've always had strange bowel movements. Fast forward to today, things have changed. Lately I've been getting these intense stomach bouts.

What happens is I feel really lousy for about a day or two beforehand. I get chills, sweat profusely, feel run down, achy, headaches and just plainly unwell...sort of like you're getting the flu. So, I have that for a day or two...and then I get intense stomach cramping and explosive diarrhea. The kind where you're scared you're not going to make it to the bathroom in time. But the weird thing is, is it comes on ridiculously fast....but it's gone just as quick! It lasts maybe an hour or two?

Then I have ridiculous stomach cramping and pain (usually sharp stabbing pains, alternating with dull aches) and a complete loss of appetite. I'm going through one of the spells right now (just coming out of it....I hope!) But this one has been quite persistent. I've had the stomach pain, nausea and lack of appetite for about 4-5 days so far. Food has just completely lost it's appeal and every time I eat, my stomach cramps up and hurts (then, a few minutes after that, my whole abdomen).

I booked an appointment with my GI doc (but I see him for my severe and unrelenting GERD) but I can't get in to see him for almost 2 months. So...

In the meantime...I just had a few questions for all of you. I know no one can diagnose me (don't worry, I do plan to see a doctor!) but should I bring up concerns of IBD? Does this sound like it could fit? I've been sick for a long time (although the diarrhea and stuff has only come on in the last few months) and they have been looking for what's wrong for a few years now, and all the tests have come back normal.

I'm starting to think that they must think I'm a hypochondriac....so...anyone else, did your IBD present sorta like this? What's your story? And also, is there any link between IBD and severe GERD and throat pain? (I have GERD and ridiculous throat pain that doesn't respond to any of the meds...they want to do a fundo on me, just to try to give me some relief). Also, as a side note, I'm 25...so, it's been a long few years. So, what do you all think???

 

[Mayflower537]

Your symptoms sound a bit like mine did. I am still undiagnosed although I guess it's possible that he said I have IBS in my file or something. He never used those exact words to me, though. I would have similar acute episodes with cramps and D few hours at the most and then would leave as quickly as they came on. I never bothered to get it checked out until I fainted from the pain one time. I got referred to a GI who told me, "This sounds like IBS, but first other things have to be ruled out."

So I would think if your GI is good, and you tell him about your symptoms, that he would probably automatically do some baseline testing on you, most likely a colonscopy at the very least. If he blows you off, then you can always insist on some tests and/or get another opinion. IBS is definitely ONLY a diagnosis of exclusion and should not be dxed based on symptoms alone, but the annoying thing is IBD is hard to rule out b/c Crohns can exist anywhere in the GI tract. It's very good at hiding in some people.

I don't know about the GERD relation - I do know that there are several on this forum who do have GERD along with their IBD. Have you had an upper endoscopy? Was the inflammation biopsied? Crohns can be in the throat as well.

Alright, well, that probably wasn't super helpful, but I hope your doctor can help you out. If it gets worse I'd call and beg for a quicker appointment.

Edit: I just re-read your post and see you said that you've had some testing already. Lower GI testing or upper? If you poke around in the Undxed club, you'll see that is very common in most of the members - lots of testing and normal results.

 

[Cat-a-Tonic]

Hi Raz, welcome to the club and the forum. I'm undiagnosed as well (my GI and GP have both said they think I have IBD, but they aren't sure if I have Crohn's or microscopic colitis and the vast majority of my test results have come back normal). I have a lot of the same symptoms you described, including GERD. GERD is pretty common with IBD although having GERD doesn't necessarily mean you have IBD or IBS.

I get the chills and sweats (night sweats specifically, usually cold sweats but ocassionally hot) too. But I never seem to have a fever. Do you get a fever with your chills & sweats? If so, that's a red flag symptom, indicating that you've likely got something more than IBS going on. Other red flag symptoms include things like nocturnal diarrhea (being awoken in the night with the urge to "go"), weight loss, and blood in the stool. Have you had any symptoms like that? What about joint pain, skin rashes, eye problems? All of those can indicate IBD as well. When you go to your GI, make sure to tell him or her EVERY symptom, even ones that seem unrelated.

I'm sorry to hear that you have to wait 2 months until your GI appointment, but in the meantime you could try keeping a food & symptom diary. Write down everything you eat and how it affects you, what level of pain you're having that day, etc. There's a listing in the "wiki" section of the forum that gives more detail as to how to keep a journal like this. That would be a good thing to show your GI.

I hope you can get some answers soon! Good luck, hang in there, and please feel free to hang around the club as much as you like. There's lots of us here who are undiagnosed and we can all relate to what you're going through.

 

[Razzyirt]

Hi All, thanks for the comments!

It feels like it's been sooo long that I've been dealing with things, and new symptoms just keep popping up...and I've gotten no diagnosis. I just feel like giving up, that it all must be in my head, because they should have found something by now!

Symptoms (at least, all that I can think of right now!)
- night sweats and chills (I wake up drenched in sweat and freezing....I have not actually taken my temperature though, although I don't usually get an actual fever)
- bouts of diarrhea and constipation
- unrelenting fissures (I've tried everything to get them to heal)
- I have passed blood (but the doctor told me it must be the fissure)
- iron deficient (despite tons of iron supplements)
- severe pain (can't even touch) right below my belly button
- random stabbing, intense pains in my abdomen
- intense rectal pain (it can hurt to the point where I can't sit, stand, walk...anything...)
- severe GERD and reflux
- chest pain and shortness of breath (all checked by the cardiologist, no heart issues)
- fatigue (can hardly function at times, I can fall asleep sitting up)
- random stabbing pains in joints
- I always get skin rashes...little hive like things, eczema, irritated skin
- conjunctivitis and eye pains/issues (see an opthamologist)
- weight loss (about 20lbs) then weight gain (about 40 lbs) and now the weight seems to be slowing falling off again
- loss of appetite (only want to eat simple carbs and a little protein...fruit, veg, most things just repulse me)
- and I'm sure there's a ton more!

Tests and Diagnoses:
- more blood tests than I can count - a few out of whack numbers (the doctor assured me it was nothing, just signs of mild inflammation)
- gastroscopy (showing inflammation in the stomach and mutated cells)
- laryngoscopy (sp?) (showing inflammation of my throat and vocal cords - no biopsies done) - I keep losing my voice and have ridiculous throat pain
- abdominal ultrasound - normal (the most painful experience ever...I could barely take the pain)

- I have been officially diagnosed with Grave's Disease (which they contribute the initial weight loss and eye stuff to), interstitial cystitis, GERD
- I have been told I have endometriosis, chronic fatigue syndrome, chronic pain syndrome, IBS...and a number of other nondescript syndromes...

And there's a ton more there....but that's all I can think of off the top of my head, lol! I just want to know what on earth is going on....because, I feel crappy all the time! And I'm sick and tired of being sick and tired!

I'm also starting to feel like I'm somehow making it all up....I'm one of those people who is pretty hard on themselves. And because they keep telling me I have normal test results and they can't find anything....I feel like I must somehow be making it up! So it's really good to be reading all the stories on here, again, I love the feedback and comments!

 

[allieinwonder]

Hey Razzy! Sorry you are feeling so unwell. Based on your symptoms, I think IBD is worth looking into. Fissures and rectal bleeding is not common with IBS. And really, they should not diagnose IBS without proper tests. I was also diagnosed with IBS without the doctor even touching me, and I knew that wasn't right.

With thinking you are a hypochondriac, don't let yourself think that way! You know your own body best. Doctors these days see so many people, and it makes it where they don't take enough time to figure out whats going on. I believe its downright cruel because it messes with our heads! Try and keep your chin up while you try and figure this out.

 

[Razzyirt]

Hey All;

Another quick question...I saw my GP today and she was saying that she thinks it must be IBS. She was saying that my symptoms just aren't typical of IBD and if it was IBD I would have more diarrhea, as well as bloody stools. She has agreed to send a referral to a GI doc though.

But, on to the question...I am iron deficient, and borderline anemic. I have been taking iron supplements for, well, as long as I can remember. I started with the tablets and then they switched me to liquid iron, because it's supposedly digested better. As long as I take the iron supplements, faithfully, everyday my iron slowly goes up a bit and gets into the very bottom of normal range. On top of this, I haven't had a period for a year (the medication I'm taking stopped it)...so, it comes down to, where is the iron going? As soon as I stop the supplement, my iron bottoms out again.

Ok, so, I never write anything short and sweet But is this common with IBS? IBD? Something else entirely? Anyone else have iron deficiency as an issue? Thanks!

 

[tamesis]

That's ridiculous. Some people with IBD have severe constipation. I would ask for a Fecal Occult Blood test from your GP. Very easy test, you smear a little stool in two little boxes, once a day, for three days, then bring it in. You're likely loosing blood somewhere (Some people just are iron deficient, but with your other symptoms), I think they should look into it more. I hope you get in with the GI soon!

Welcome! I'm undiagnosed also, with problems off and on for two years now.

 

[Razzyirt]

Hi!

Thanks for the suggestion...but the doc said that any stool testing is useless because of the iron supplements that I take. Supposedly I'll just have false positives. It just makes me curious though....as I always thought the iron deficiency was due to heavy periods. But, since those stopped...it still hasn't gone away. So, just wondering if others have had this problem, and what it turned out to be!

 

[Cat-a-Tonic]

Raz, just a thought - can you stop the iron supplements for a little while and then do the fecal occult blood test? I haven't heard of iron supplements causing a false positive, but if your doctor refuses to do the test for that reason then it might be worthwhile to stop the iron supps, maybe just for a week or two. Your iron shouldn't totally bottom out like that if you weren't bleeding from somewhere, and you can actually have a fair amount of blood in your stool and not realize it. It's worth looking into at least.

 

[dannysmom]

My son has fatigue, GERD, constant sore throat, and pain right below the belly button too ... along with many of the symptoms you list (sweating, weight loss but mostly gain). He is undiagnosed too after extensive work up and some trial treatments (but we keep trying). I wonder if Graves is related to other auto-immune conditions like Crohn's. (I came down w/ Graves this year.) Are your thyroid levels stabilized to a good number yet? Good luck!

 

[Razzyirt]

Hi!

I am currently taking tapazole and propranolol to control the Grave's. I've been having a lot of issues with my thyroid and it has been driving me crazy! I was in remission for a few months there though...but it came back. My endo just put me on the pills and told me to come back for a followup in a year. Meanwhile I get regular blood tests. The last set of tests were in the normal range, which is nice...although none of the symptoms have really gone away!

As for the fecal occult blood test. I did have one a long time ago (about 8 years or so) that came back negative. So I do know what is involved with the test. I have an appointment with the GI doc in 2 weeks, so I will see what he recommends, and if he wants me to get it done (and I'll go off the iron if I have to).

On a different note...I've avoided the "big D" for a little while now! I haven't had any explosive bouts...but I have gotten a lot of abdominal pain and constipation. Mixed in there, there has been a few normal days. I've even been eating fairly normally.

dannysmom...have they figured out why your son is gaining weight? My weight gain has been a real mystery to me, as I was active and ate well and still packed on the pounds. I'm now a good 40 lbs over where I normally am, and I have no idea why! No matter what I do, I can't get the scale to budge (which is especially weird, since I'm hyperthyroid). The doc also told me that it just can't be IBD then, because I would lose weight...not gain! So, it's interesting to hear about someone else with these types of symptoms and weight gain!