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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Looking for some input into my weird medical issues.


11-01-2016, 01:55 AM   #1
Nimzee
 
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Looking for some input into my weird medical issues.

Hi everyone! Might as well dive into this, since it's weird.

For the last few years I've been having pretty bad diarrhea. Constant, at least 5 times a day. I just got around to seeing a doctor and it's left me with more questions than answers.

Bloodwork came back negative for any abnormalities (besides my thyroid levels - I apparently have hypothyroidism. Was never told by my doctor. possibly why I haven't been losing weight?)

Fecal tests came back negative for any parasites or infections.

Was scoped earlier this month, the results are what's most confusing to me.

It showed ulcers - literally dozens of them, lining my large intestine. The doctor didn't put them down in the results and didn't do a biopsy on them. He said they looked mostly healed, but then went on to say that it was probably an allergic reaction to the prep?? Is that possible, for ulcers to pop up, then heal, in less than a day???

It also showed "chronic gastritis" in the stomach, without H. Pylori.

My full list of symptoms are: chronic diarrhea, often with intense and severe urgency, large amounts of blood on numerous occasions, smaller amounts of blood frequently, abdominal pain, sometimes severe, near constant back pain, and fatigue.

My doctor completely disregarded any amount of blood I said I was having, because the fecal blood test was negative that day.

He has now officially diagnosed me with IBS and is certain I had an infection (again, the fecal tests came back negative) and had put me on a 14 day course of xifaxan. It didn't help.)

Should I search for a second opinion? I have to wonder if maybe he didn't see any inflammation and the ulcers were scarring up because I'm not having as rough as a time lately, remission? It's gone from constant diarrhea to very hard stools, multiple times a day.

Thank you for any help you can provide.

Last edited by Nimzee; 11-01-2016 at 02:32 AM.
11-01-2016, 09:41 AM   #2
eneg16
 
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I would suggest a second opinion if you are not completely happy with what your doctor told you.


11-01-2016, 09:47 AM   #3
ronroush7
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I agree especially with the blood you are seeing. I could be wrong.
11-01-2016, 11:18 AM   #4
Nimzee
 
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I'm currently very poor and really don't want to end up spending more money (already out close to 2000 dollars) unless it's necessary.

Can ulcers appear, and be almost healed, in under a day? I've done a bit of reading and what's in my large intestine does look like ulcers that are going away.

Doesn't ibs not have these issues? My fecal infection tests were negative, doesn't that mean that, logically, there wouldn't be an infection? This has been going on for 5 years.

At my worst I wasn't able to eat more than once a day, while simultaneously having 10+ liquid bms a day. I didn't lose weight but I chalk that up to hypothyroidism.

I'm sorry for sounding desperate, it just seems like as soon as I finally get into gear and seeing a doctor all of these problems that have been plaguing me for years just magically disappear.
11-01-2016, 12:01 PM   #5
Nimzee
 
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Just called my insurance, I'm allowed as many second opinions as I want AND apparently don't need a referral! That's nice at least, plus I've got my deductible so even sweeter. Now just to find a doctor who isn't a part of the health care group I was seeing before. The doctors are all very close and take advice from each other.
11-01-2016, 12:16 PM   #6
ronroush7
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I would think it would be more than IBS but I could be wrong. I hope you get some answers soon.

11-01-2016, 12:19 PM   #7
Nimzee
 
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I've just done another quick glance over at my bloodwork and my hemoglobin is slightly low and my white blood cell count is slightly high. Since I don't have an infection or parasites, that's troubling.

Thank you for your kind words, ronroush.
11-01-2016, 12:19 PM   #8
ronroush7
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You are welcome.

11-02-2016, 03:40 PM   #9
Lizzie
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It's great that you are able to get a second opinion, as blood is quite a concerning symptom and needs checking out, as others have said.

I've not heard of prep causing ulcers myself, but it is a bit like drain cleaner so I guess it might be possible!

Some of your symptoms do sound quite like my Crohns symptoms, loads of diarrhoea but also, oddly, frequent hard stools some days. However, my symptoms don't go away when hospital appointments are due and I've not heard of this happening with Crohns (but maybe I'm mistaken).
11-02-2016, 07:15 PM   #10
Nimzee
 
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My symptoms kind of wax and wane. Most of the time they're pretty bad but I have short periods (maybe a month or three) where they slow down and aren't as bad, manifest as different things kinda.

I've done a little more reading, and according to my CBC and other blood tests that was done a while ago, my hemoglobin is low, white blood cell count is a little high, and c-reactive protein is high. I was tested for infections, came back negative for all of them, AND put on antibiotics (because apparently my doctor doesn't understand what the word negative means) and I'm still having the same problems. What is wrong with me. I'm so hecking scared that my new doctor I found is going to tell me he totally agrees with my old doctors diagnosis. You don't have problems like this with IBS! There wouldn't be blood, or ulceration in my intestines!! I've already come to terms with having a chronic illness but I just don't want to suffer from not having all of my bases covered 100%.

Thank you all for your kind words and support.
11-02-2016, 07:15 PM   #11
Nimzee
 
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Oh, I already mentioned the blood test stuff. My bad :P
11-02-2016, 07:58 PM   #12
ronroush7
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Maybe you need a third opinion
11-02-2016, 08:03 PM   #13
Nimzee
 
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Haven't seen my second opinion doctor quite yet, still working on getting my stuff switched over. I'm very worried the new doctor will agree with the old one though.

From what I read, he specializes in IBD so maybe he will see the HUGE elephant in the room, metaphorically, and give me an accurate diagnosis.
11-02-2016, 08:04 PM   #14
ronroush7
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Hoping the best for you

11-02-2016, 09:17 PM   #15
Nimzee
 
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OH MY GOD.

Turns out, my doctor prescribed me an incredibly expensive medication (Xifaxan) that I didn't need (no freaking signs of an infection!!!!! All of the tests came back negative!!!!!). With 2 refills on it. A 14 day supply is going to cost my insurance 1500 freaking dollars. This is insanity.

"Xifaxan should not be used if you have bloody diarrhea" HMMMMMMM.

He told me this antibiotic would make the ~infection~ I ~totally had~ go away. NO SIGNS OF IT. I LITERALLY CANNOT BELIEVE THIS.

Sorry for ranting. I'm fuming.
11-02-2016, 09:20 PM   #16
ronroush7
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I am sorry.

11-02-2016, 10:08 PM   #17
Lady Organic
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Sorry about the prescription...
About the 2nd opinion, do not worry. Doctors do not base their opinion on another dr's opinion. The new doc will make his own and with a description of large amounts of blood he will most likely want to perform a colonoscopy.

Could the last doctor explain why you had blood? Its got to be coming from somewhere!!! Sometimes internal hemorrhoids are painless and can provoke blood. Hemorrhoids can be seen during a colonoscopy if the dr makes a special reverse maneuver at the end of the scope. i would ask about this possibility. bad diarrhea can certainly provoke hemorroids...

You speak about stool test, but did you do the calprotectine fecal test? This test may reveal presence of inflammation in the colon. Coudl be useful in your case. the new IBD special will most likely ask for it prior to a coloscopy.

Good luck and definately go see that IBD specialist.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
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11-02-2016, 11:58 PM   #18
Nimzee
 
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Hi there, Lady Organic!

He couldn't explain the blood at all, and frankly kind of ignored the question and just made a face when I mentioned it. He said he didn't find any kind of hemorrhoids, polyps or any other abnormalities (besides the "chronic gastritis, H. Pylori negative"), only the ulcers which looked like they were going away. He believed they were caused by my prep. I wouldn't think ulcers could just rear up, then almost completely disappear, within a day?

He actually did say that it's possible (possible, but unlikely ) that this is some kind of IBD that went into a sort of "remission" on it's own, because I had reduced symptoms for a couple of months, of course right when I was seeing the doctor. But he has zero explanation for the blood, besides an infection which just doesn't make any sense.

He did not have me do a calprotectine fecal test, I don't believe. Just tests for ova/parasites, C.Diff, Campylobacter, Salmonella/Shigella, Shiga Toxin, and Giardia.

I would make an imgur album of my colonoscopy pictures and link them, but frankly I feel like that's kind of gross to do, make people look at my insides lol.
11-03-2016, 12:31 AM   #19
ronroush7
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I would ask about a fecal calprotectin test

11-03-2016, 08:02 AM   #20
Lady Organic
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it is true that IBD can go in remission and come back active on its own without any treatment. Key is to have the calpro test and/or the colonoscopy, next time, when you have overt symptoms, an episode of D and blood.

I sometimes read over the forum people being told by the GI that ulcers formed because of the prep. I have never experienced this myself, so never had that discussion with my drs.

I dont think its forbidden to post pictures on the forum, but we are not allowed to give a diagnosis and i doubt, as patients, we would have the ability to differenciate a IBD ulcer with a prep ulcer.

Do you have large amounts of blood right now? If so, I would encourage you to take pictures of that so that you could show it to your next doctor. Do you have something else else like mucus or white stuff along with that blood?
11-03-2016, 08:36 AM   #21
Julia S
 
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I would get a fecal calprotectin test if I were you. If its IBS it will not be raised since IBS does not cause intestinal inflammation on its own. Wait a couple of weeks though to make sure that whatever residual inflammation you might have from the colonoscopy itself is gone. Otherwise the results might be misleading.
11-03-2016, 04:02 PM   #22
CeeCeeGo
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Totally agree about the faecal Calprotectin poo test as I have been told it will show whether you have IBS or IBD.
Take care.
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DX - June 2012 with mild/moderate Crohns. In July 2012 bowel perforated unexpectedly and needed emergency surgery.
Current meds/supplements - Budesonide (reducing dose over 3 months), B12 injections (every 10 wks), Vit D tabs 800iu x daily, Ferrous Sulphate 200mg every day, Folic Acid once a week
Previous meds - Allergic to Azathioprine, 6MP, Pentasa & Asacol, Methotrexate injections (didn't work). Stopped Humira after 2 years due to ineffectiveness.
11-03-2016, 05:40 PM   #23
Lady Organic
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calprotectine test can orient a diagnosis, but does not confirm or exclude any diagnosis.
11-03-2016, 05:57 PM   #24
Nimzee
 
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Lady Organic, I also had the most gentle prep too, the Dulcolax tablets in the morning and Miralax mixed into Powerade, so I can't imagine that prep in particular could cause as bad of ulceration as I appeared to have.

I'm not currently having significant amounts of blood, only the occasional bit of red streaks on the paper and on the waste itself. I almost always have a fair bit of visible mucous, the one time the blood was so bad it should have warranted an ER visit, it was all blood and mucous.

When I see the new doctor (have to fax some stuff over) I'll ask him about the Calprotectine test. Thank you everyone for your help so far
11-03-2016, 10:33 PM   #25
Lady Organic
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ok best of luck, keep us posted
12-02-2016, 08:55 AM   #26
gordan
 
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A second opinion can never hurt, right? I think if you need reassurance, I don't see any reason not to get that second opinion.
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