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Crohn's Disease
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Posted 7/24/2017 11:29 PM (GMT 0)
Hey everyone! I'm new here, so I hope I'm doing this right. I need some advice, because I'm stuck and have no idea where to go from here.

A year ago, I started having diarrhea with urgency and incontinence. Since then, I have several loose BM's a day (sometimes I don't even make it to the restroom), with this weird oil/mucus. I have incredibly lower abdominal pain, worsened immediately by eating ANYTHING. I have nausea and a low fever daily. Since this started, I've lost 10 pounds and am becoming quite depressed.

My stool test (fecal calprotectin) showed high inflammation markers, I've had upper/lower endoscopy and capsule endoscopy that didn't show a darn thing.

They thought I had Crohn's, and I just got the call that I'm in the clear. To be honest, I'm quite emotional about this. I'm 23 years old and cannot handle this pain and discomfort anymore. I've missed out on a lot of experiences and my grades in college have suffered from this as well.

Any and all advice is welcome...
Posted 7/25/2017 12:18 AM (GMT 0)
I'm a bit confused, did they do a colonoscopy? If so, were there biopsies? It is strange that everything is in the clear. Also, when they did stool tests, did they test for things like salmonella, c. diff., e. coli, etc?
Posted 7/25/2017 12:39 AM (GMT 0)
scifigal2k thank you for your reply! Yes. They did do a colonoscopy with biopsies. All was clear. They also tested for all of those fun ones (shigella, salmonella, all of the e.colis, c.dif, ALL) and those were totally fine!

I'm so confused and stressed
Posted 7/25/2017 12:53 AM (GMT 0)
Yeah, I agree. Did they test for Celiac when they did the endoscopy? There is SOMETHING wrong going on. It may be worth going to another GI for a second opinion. They would likely repeat all of the tests.
Posted 7/25/2017 2:36 AM (GMT 0)
scifigal2k yeah they tested for celiac as well.... I want to get a second opinion as well but having a hard time getting referred sad
Posted 7/25/2017 3:15 AM (GMT 0)
Did they biopsy the colon and the terminal ileum during the colonoscopy?

Did they biopsy the stomach and duodenum during the upper endoscopy?

Did those biopsies show any abnormalities at all?

Have you had blood tests done? Any signs of anemia? Elevated CRP or ESR? Liver enzymes normal? Pancreatic enzymes normal?
Posted 7/25/2017 1:56 PM (GMT 0)
This is very odd because those do sound like pretty classic IBD symptoms. When you say low fever how low is low? And how does it compare to your temperature before your symptoms started?

Have you been taking any NSAID or PPI meds? (Which might give a false positive faecal calprotectin result.)

No test is 100% perfect, so it is possible small spots of active inflammation could have been missed, you could have gone into spontaneous remission, you have microscopic inflammation (although biopsies should pick that up), or it really is 'just' IBS.

Long story short: I think you need more testing. I'm just not sure when. If you've just had a colonoscopy then you would probably be better off waiting 6-12 months before having another one. But if you really can't bear it, then carry on with trying to get a second opinion.

I'm assuming that throughout all of this the symptoms haven't changed? (Either for better or worse.)
Posted 7/25/2017 10:06 PM (GMT 0)
Thank you all for your replies...

beave, they did biopsies in both scopes, and they came back normal. When I had blood tests done, they only tested for celiac and thyroid hormone. My doctor said she wouldn't run other tests since I had my blood checked last June :/

NiceCupOfTea, my fevers have been pretty consistent at 100.5. Not sure if that's awful, but I was a normal 98.6 person before this started. And I have not been taking any medication. I'm at a loss. But I do agree with your suggestion of waiting to do more testing, that's a good idea. Seeing if anything changes. I dread the idea of doing this however, as my symptoms have gotten worse since this all started. Ugh.
Posted 7/25/2017 10:08 PM (GMT 0)
Gosh, I am sorry you are going thru this. I agree with the others....more testing is needed. It sounds like something is going on in there.

FYI....my tissues did not change for a long time. I kept going to the doctor...got second opinions....and then suddenly a fistula popped thru and THAT was when everything changed and they could tell I had Crohns. BTW...my blood work doesn't change alot even when I am having aggressive active disease-but my GI has stated that can change...but until they have a history of your bloodwork, symptoms and biopsies they will not know.

Please continue to seek answers.

Clo
Posted 7/26/2017 1:22 AM (GMT 0)
Well they should at a minimum be testing for anemia. But I agree with the others...I hope they did CRP and Sed rate too. My first go round with testing all came back negative too and six months later they re-tested and diagnosed me with Crohn's.
Posted 7/26/2017 1:59 PM (GMT 0)
Thank you guys again for their replies.

Clo2014, so when you said that nothing was showing up, and then when you developed the fistula, did they do scopes and testing all over again?

gumby44, They didn't do either of those recently. But last year they did a CRP blood test for something else, and so my current doctor said she wasn't going to do it again. She said she doesn't think it would change that much in a year (which seems weird to me). When you were retested, what do you mean? What tests did they do both times? Scopes, blood tests, etc.?
Posted 7/26/2017 7:28 PM (GMT 0)
I had severe anemia as my first sign of Crohn's, yet the colonoscopy and upper endoscopy was completely normal. They gave me an iron infusion and sent me home. 6 months later, I became very anemic again (about a Hemoglobin of 7) so they did a pill cam test which showed a bleeding ulcer in my small intestine. They followed that up with a repeat colonoscopy and biopsied my ileum and colon and diagnosed my Crohn's. Some people's CRP doesn't fluctuate even with severe disease. But if you had a lot of inflammation an bleeding ulcers from Crohn's your sed rate, ferritin (iron stores) and anemia levels should indicate something is wrong. Feeling dizzy and short of breath on exertion from anemia were my first symptoms before any GI issues showed up.
Posted 7/27/2017 4:17 PM (GMT 0)
gumby44 that's so interesting that your testing changed that within 6 months. I haven't considered that. Thank you for sharing.

What would you suggest I do from here? Get a second opinion or just wait a bit and ask for retesting? I feel like all of my doctors think I'm crazy or being too sensitive, but these seem like classic IBD symptoms to me. I would rather just be diagnosed with it so I can be treated and feel any sort of relief. I'm pretty miserable.
Posted 7/27/2017 7:39 PM (GMT 0)
I think you should get a second opinion if you are feeling miserable. I was not having any symptoms other than anemia at the time, so it was easy to wait 6 months. If you are having symptoms of active disease, now is the time to get tested.
Posted 7/27/2017 11:33 PM (GMT 0)
gumby44 I really appreciate all of your responses. I think I will look into finding a second opinion. Thank you!
Posted 7/28/2017 8:22 PM (GMT 0)
SydMar, I agree with the others in that you need a 2nd opinion. For what it's worth, it took me over 25 years of having symptoms before I finally got diagnosed, but I wasn't taken seriously for many of those years and had other medical problems that got blamed for the symptoms later on. Even my first colonoscopy, which was done while hospitalized with a bad flare, didn't get me a diagnosis. Six months later and another colonoscopy did though. So don't give up.
Posted 7/31/2017 9:35 PM (GMT 0)
JaSanne, thanks for your reply. I'm sorry to hear your diagnosis was a rough journey :/

For those of you who have gotten a second opinion before, how did you go about doing so? I've never gotten a second opinion on something so I'm not sure how to do this. Do you have the tests/records from the previous doctors sent over or just start from scratch?
Posted 8/1/2017 2:34 AM (GMT 0)
SM, obtain copies of all of your medical records including the testing & labs. You are entitled to these records, all you say is you keep a copy for your own personal use. Be sure to keep these records for you & give a copy to the 2nd opinion. If your insurance requires a referral, ask your PCP to refer you to another gi for a 2nd opinion. Some specialists require a referral from another dr & some do not. You can also go online to your insurance company & look to see what gi's are on your plan & check them out. I would do this ASAP, because sometimes there is a wait of several weeks before getting seen by a new dr.

I hope you get some help. Take care.
Posted 8/1/2017 3:50 AM (GMT 0)
I agree with straydog.

For me...after the fistula broke thru I went straight to the hospital. I too had been running low grade fevers for about 6 months....after the break thru I drove myself to the hospital...as I was driving I started feeling flush, nauseous and alittle dizzy. The hospital was 2 hours away and by the time I got there....I went into sepsis.

I am not trying to scare you. I don't think it happens to very many people like that. It is something you should pursue though. And yes....after the break thru they started completely over...even with a brand new 3rd GI. He got me into a specialist and saved my life. And then the specialist kept all previous records (refused to read them) did completely new tests and then read the previous reports...and then we compared and made a gameplan. He said he likes to do his own tests, find his results and then compare so that the other findings don't influence him....but he double checks after just to make sure. All the other docs just went by the previous tests...so I dunno which way is better...

I hope you get some answers soon.

Clo
Posted 8/2/2017 7:37 AM (GMT 0)
straydog, I really appreciate your response. Do you think I should try a whole new hospital all together?

clo2014, wow. Your story is a wild one. I'm glad that you were able to finally get some answers and a trustworthy doctor. I'm hoping to have answers someday soon...
Posted 8/2/2017 8:30 AM (GMT 0)
If you had good care at the hospital I see no reason to change that. From what I am reading you really need a different gi dr that will take an interest in trying to help you. I saw several before finally getting a really good one. I wasn't looking for someone to hold my hand or pat me on the back, I needed someone that would help me. I would go online to my insurance & see what gi's are listed on my plan & check them on. another source is ratemd's & vitals. I do not put a lot of faith in online reviews unless its all negative. The reason I say this is you never know what happens between a patient & a dr. A patient can be ticked off at a dr & write something negative. Anyway, do some snooping around online.

Take care.
Posted 8/17/2017 2:14 PM (GMT 0)
Alright, sorry for not responding in awhile. I was considering my options, but I've decided I definitely need a second opinion. I'm too miserable. I had to pass up a wonderful new job because I didn't know how I would be able to handle it with my current GI position sad

I will do my research as suggested by you straydog. Thank you all!
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