Help please help

[aslpw]

I REALLY REALLY REALLY need help and some answers! I live in small town Wyoming. For most of my young adult life I have had periods of discomfort (stab you in the guts, double over, get diarrhea... come and go pain... here and there maybe 1 time a month, maybe every other, or maybe 10 times a month). I thought all of these symptoms I had as a young adult were normal (14-present 27 years). Poop wasn't something I went around asking people about. Then June of 2012 I had to have my appendix removed and 1 year TO THE DAY of my appendix surgery I was back in the ER this time with something "similar" but different. I had bad tummy pain for about a week (thinking it was the flu maybe) then my diarrhea turned to straight blood. I was going over and over and over. I went the ER in Wyoming where they pushed around on my tummy and told me
"I realize your appendix area hurts, it cant be your appendix though, its probably just gas... go home take Pepcid." Later that night it got WORSE, so I end up in the closest "city" in Montana ER (My husband got fed up with Wyoming docs). At the ER in Montana they found blood in my stool (no bacteria), and a CT scan found inflamed colon right where my appendix once "lived". Also noted in my CT scan was fluid on my heart and liver, along with inflamed lymph nodes. The ER doc told me he thought this was possibly crohns or ulcerative colitis (a cousin of mine has crohns... but I never talked to her about it... didn't have any idea what it was). He also said it could be just a bacterial infection. They gave me antibiotics and sent me home to follow up with GI. I followed up with GI mid August 1.5 months after my "flare" up. By then things were back to normal, and I wasn't having issues. The colonoscopy came up normal, but no biopsy was conducted. The doc then sent me home with the IBS diagnosis and some pills. Well... its now 1.5 months post colonoscopy and I am having mini "flare" ups almost daily!! It interrupts my every move!!! The IBS pills, don't work!!!! My question is... Could I have been misdiagnosed?! What should I do? Should I drive to a real city like Denver or SLC to see someone who might have a better grip, or should I go back to the other GI? Is it possible it could be gluten intolerance or something like that?! HELP!!!! It interrupts my work, my day to day life, it interrupts EVERYTHING!!!! :/ Feeling lost!!!

 

[RZman]

I'm sorry to hear you're going through such a tough struggle. Get yourself diagnosed properly. It doesn't matter where you do it as long as you can find a competent and qualified doctor.

 

[DJW]

Hi. I think you need to get a second opinion. I know IBD can be difficult to diagnose. I would be looking for upper and lower GI series (colonoscopy and endoscopy) blood work and pill cam. There is an undiagnosed section I'd recommend you check out. I've had crohns for years so I'm not up on all the latest tests and medication - but I'm sure someone more knowledgeable will be along soon. I hope you get some answers and releif soon.

 

[Catlady728]

Im so right there with you! <3 very similar story......except I had my gallbladder removed almost 2yrs ago.......started getting pain, started 'seeking' help way to late as I fell off my parents insurance and the father of the father/son team i go to (GP) didnt see a need to do any testing after my upper gi showed uclers.....he told me to change my diet. even though I was already gluten and mostly dariy free.....fast foward to june this year.....Id been ignoring the pain and dealing with this whole time........ and it hits me. pretty much just like yours....only Ive only had a small instense of blood after BM....so I totoaly understand! My GI is trying to slap my w/IBS and i dont think thats what it is.....why would there be so much pain and nausea? Anyway I would seek out a new doctor....In my case I went back to my GP and he is seeing what he can do.... hope you can get some answers soon!

 

[Jennifer]

I'm sorry you were told its just IBS aslpw. IBS does not cause blood loss and certainly not inflammation like what was seen on the CT scan (at most some people with IBS have microscopic inflammation). That GI didn't even do a biopsy during your scope and I really don't understand why some doctors do that. You could do any other imaging test honestly, do a damn biopsy. Definitely go and seek a second opinion. I wouldn't want to stick with a doctor who throws out a diagnosis without even doing tests properly or even more than one test for that matter.

What are your symptoms now? You need to be seen by someone soon so you can get a proper diagnosis. Blood loss isn't listed as a symptom of Celiac plus you should have already been tested via blood work before the colonoscopy (usually doctors do blood work and request fecal samples before doing anything invasive like a scope unless you're symptoms are fairly extreme).

Good luck and keep us posted.

 

[aslpw]

They did the blood tests, but never told me anything about those results, other than that I wasn't anemic. The stool test was done too, and came back negative for the bacteria they tested for (so the inflammation wasn't caused by a bacteria)...but after my colonoscopy my doc just said, it was probably a bacteria that caused the inflammation and the fecal test didn't pick it up. And you probably have IBS, here are some pills Bentyl Dicyclomine (that don't work)! Its flaring up again, it seems. Yesterday I was miserable ALL day, but today is better. However I have been flaring for the past 2 weeks everyday (except today) the pain is most severe around my belly button and appendix scar. I am just frustrated. He said himself "I was expecting to find Crohn's disease, but your colon looks clear"... I am so confused right now! IBS was a "fine" Dx until it started up again a few weeks ago, and the meds suddenly don't cure all!

 

[aslpw]

They told me my blood test was normal actually, and I wasn't anemic

 

[Jennifer]

Crohn's can affect you anywhere in your digestive tract so saying that the colon looks fine doesn't mean much. No biopsies is still ridiculous as you need biopsies to confirm Crohn's so how can you say you were looking for it when you didn't even try looking for it (not you your GI)? The location of your pain sounds like where the ileum is located so it would be good if you went on with further testing, preferably with a different GI if possible.

 

[aslpw]

Okay, that confirmed my "gut feeling"!! I think I am going to try to get into a doc in a bigger city, maybe my cousin's doc in SLC, however I am going to Denver next week... so maybe I will try my luck there first! Thank you for your help!!! I needed to hear that, because that is what I was thinking and I found the biopsy thing in my research and through talking to my cousin.... sigh!

 

[Hope345]

We are all with you on this. You are right, it needs to be properly diagnosed as soon as possible and they need to get you on the right medications.

It will be good for you to start yourself on a very bland diet, keep track of all test results and write down all of your symptoms each day. Your cousin may be a huge help. It is not that you will have exactly the same symptoms as her/him, but there is a chance you will.

Let us know how everything goes