What do y'all think?

[Mayflower537]

Hi, Everyone,

I am a 29 year old female and have had stomach issues for several years now. My typical symptoms are horrific stomach cramps that end up with my being in the bathroom for a couple of hours, always with diarrhea and occasionally, if the pain gets too bad, I'll vomit as well. I've had them probably since my mid teens, but I remember the episodes becoming particularly bad while I was pregnant with my second child in 2007. They happened often and I would be in the bathroom for hours, with it coming out of both ends. I talked to my OB who said it was probably hormonal, blah blah, and didn't think much about it. Assumed the baby didn't like what I was eating. But they have been worse ever since. Not necessarily more frequent but more acute, painful, etc. Sometimes if I can't get to a bathroom right away I'll see spots and get lightheaded. About a month ago I had one of these episodes and was in a public restroom and passed out. Thankfully a trashcan broke my fall so I didn't hit my head or anything.

I am not aware of my running a fever, but I do have a very slight appetite which I assumed was the BC pill.

Anyway, after that fainting bit, I decided I finally should go to the doctor. Went to a GP, who referred me to a GI specialist. The GP checked out my gallbladder which was all normal. The GI doc said he suspected IBS, which is what I always assumed I had, but had to rule out Celiac and Crohn's. Had a colonoscopy, which was normal, and I got a letter from the GI doc saying that the Prometheus blood work came back normal for Celiac, but "weakly positive" for Crohn's, and that we would discuss further testing at that time. What does "weakly positive" mean?? My follow-up with this doc is April 20, but suffice it to say that I am now a little freaked out. I guess what I want to know is if anyone else has had those labs come back "weakly positive?" Do they mean anything at all? Can you have a normal scope and still have Crohn's?

Thanks to anyone who posts!
Mayflower

 

[Astra]

Hi Mayflower
and welcome

Yes, if you read our threads you will see there's a lot of people who can empathise with you! Negative scopes, blood work normal etc, it's a hard one to diagnose because of where your inflammation is and whether its flaring or not.
In my personal opinion it sounds more like IBD than IBS, don't be fobbed off with a dx of IBS, and without repeating myself, you can click on me and read my posts on that old chesnut IBS ! My advice? get yourself genned up on IBD, make a list of symptoms, read our threads on the forum, look into treatments and diets, and if you do have Crohns, you'll be able to discuss what you know with your doc. I'm telling you this cos I didn't! Never heard of Crohns til I got dx. Knowledge is power! I was told I had IBS and was fobbed off for 15 years! Years of unnecessary pain, sadness and bloody misery!
Oh and the lighthead and dizzy feeling, get checked for anaemia and you can get supplements for that.
Wishing you good luck and we're here to support and advise you
lotsa luv
Joan xxx

 

[Hedgehog]

Hi Mayflower,
Yes you can have a normal scope and still have Crohn's. I had two colonoscopies and several blood tests which came out as normal yet I was very ill. I agree with Joan that your symptoms do sound suspiciously like IBD.
I don't know what weakly positive means but can only suggest you do as Joan suggested and use the site to gather info so you can press your docs to do more tests and get a diagnosis.
I was told I had IBS for years too.
Let us know how you get on,
Gail
xx

 

[Mayflower537]

So I guess now, my question is, is IBS a bunk diagnosis? Or is it a catch-all type thing? I read different things and everyone seems to have a different opinion. Since I've been reading up on IBD and reading people's experiences, I just thought my symptoms seemed so benign comparatively. What makes you suspect IBD vs IBS?

Thanks,
May

 

[Astra]

Hi May

repeating myself again! GPs call any belly ache IBS! I will tell you what my gastro said to me on my first meeting, he said IBS does not exist, there is always an underlying reason for D, vomiting, pain, blood, gas, bloat, etc and should never be ignored, and I hugged him and cried with relief!
Remember, every Crohnie is unique, every Crohnie has different symptoms, different meds, where their Crohns is, how they respond to meds, try not to compare with anyone else, this will make you more anxious.
xxx

 

[Mayflower537]

My GP actually referred me to my GI doc, and she said as soon as she heard me mention blood she thought, "Uh oh, Crohn's." I appreciate her proactive-ness. My scope showed internal hemorrhoids so maybe that's where it comes from? I do NOT have bloody stools, I just occassionally see a little blood when I wipe. I do have mucous sometimes, though.
Whatever will be, will be. I will use this forum to really get up to speed on treatments, diets, etc, like you suggested and if I do end up getting a non-IBS Dx, then I'll be that much more knowledgeable.
Thanks!

 

[Mayflower537]

Just talked to my GI's office, and my capsule endoscopy/pill cam is scheduled for Monday. That means a bowel prep on Sunday! Oh, joy. My GI said it's not as "violent" a prep as for a scope. Thank God. He said all clear liquids and then at 5 PM I have to drink a bottle of Magnesium Citrate. Has anyone have any experience with this stuff? How fast or slow does it work? I used the Osmoprep pills for my scope, and that stuff worked quickly on me. I was in the bathroom once after the first round of pills, and then non-stop 5 or 10 minutes after I finished the second round.
I guess in the next couple of weeks, one way or another, I'll find out something.

 

[Astra]

Yes!
Hopefully you will get an answer!
can't help with this one, never had a pill cam, but got everything crossed for you mayflower
good luck!
xxx

 

[Mayflower537]

Thanks, Joan!

May

 

[Mayflower537]

Ewww...just finished drinking a bottle of mag citrate. Nasty. What a strange combo of disgustingness. At least the ensuing D will take my mind of my nagging hunger from a day of liquids. :tongue:
Hope everyone is having a lovely day!

 

[Hedgehog]

Good luck with your pill cam tomorrow Mayflower. The worst bit is over now. The pill cam is a painless and quite interesting test!
Gail
x

 

[Journey]

Mayflower, good luck on the test.

The blood is probably from the hemmorhoids
although it could be also be from an anal fissure,
which is a small tear on the anal verge.

As long as you did not have blood in the stool.

The capsule test is a good test when colonoscopy
does not show anything.

Let us know what the process was like and the
results.

Your vomiting, fevers, pain is possible with IBS although
not common in people with IBS. Its good you are doing
capsule to rule anything else out.

IBS has a set of criteria now (Rome III criteria) and any
responsible GI or colon rectal surgeon will follow the guidelines
and not even suggest its IBS until scoping, blood work,
stool tests, full patient history, and possibly x-rays are done.
Until then a physician can say, "it may be IBS" but they should
not say, "its IBS" and send you on your way.

 

[Mayflower537]

Well, so far the test is painless, other than my arse being on fire from that stupid prep juice and D that ensued. NOTHING like colonoscopy prep, tho. Went in at 8:15 or so this morning, took the "pill" - I was worried, but it's really no bigger than a vitamin. I was expecting a serious horse pill. There are all these sensors all over my abdomen and I have this huge belt on - looks like one of those things people use so they won't hurt their backs lifting things, ya know? And there's a huge battery pack, too. Oh, and the best part is the wicked cool suspenders. But I'm just home with the kids, so who cares, right?

I like both my GP and my GI. They are new in my life. :tongue: I was pregnant and/or breastfeeding for so long, no one would touch me with a 10 foot pole other than my OBGYN, so I came to think of him as my GP, but in all truth, he is a specialist and we women are more than our girly parts. But my GP immediately referred me to the GI as soon as she heard me mention "blood." She might have anyway, I don't know. She seems like a good doc so far. And my c-scope showed internal hemmorhoids, so I am assuming that is where the slight blood I would occasionally see came from, that's what they both said it more than likely was. My GI did say that it could be IBS from the start (hey, nobody's perfect ), but that IBS is a diagnosis of exclusion, and that based on my symptoms he had to rule out Celiac and Crohns. Working on the Crohn's part still, Celiac test was negative. But I don't think he would have done the pill cam if the blood work hadn't come up positive for Crohns. Hope it's wrong (the bloodwork). But it is what it is, no matter what.
Results...dunno when exactly - he's actually out of town until the first of May, so it'll likely be a couple of weeks.
Thanks for the well-wishes, Journey and everyone.