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Ulcerative Colitis
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Posted 4/8/2018 12:24 AM (GMT 0)
I'm not disputing the fact that you feel better.....you aren't the only one with a UC diagnosis who had surgery and it ended up being CD.

Marcell came to a conclusion that you didn't state....just clarifying. That's how bs gets assumed.

q
Posted 4/12/2018 5:56 PM (GMT 0)
Has anyone been tested for antinuclear antibodies?
Posted 4/12/2018 6:18 PM (GMT 0)
Yes....and yours?
q
Posted 4/12/2018 6:20 PM (GMT 0)
Yes. Mine came back negative. They did not agree to the test until arthritis set in and they were trying to figure out if it was rheumatoid or caused crohns/ remicade/ or steroids. The ANA test negative reading lead them to believe the arthritis was because of the crohns etc.

I thought Crohns was an immune disease...and my thoughts were that I would test positive but....nope.... So I wondered about other Crohns sufferers. I was told by my doctor that I individuals taking remicade (and others with Crohns disease) may never test positive.... hmmm.. but that there were some people that did have positive readings.

Clo
Posted 4/12/2018 11:02 PM (GMT 0)

quincy said...
Yes....and yours?
q

Yes. Mine is reagent 1:80.
Posted 4/12/2018 11:06 PM (GMT 0)

clo2014 said...
Yes. Mine came back negative. They did not agree to the test until arthritis set in and they were trying to figure out if it was rheumatoid or caused crohns/ remicade/ or steroids. The ANA test negative reading lead them to believe the arthritis was because of the crohns etc.

I thought Crohns was an immune disease...and my thoughts were that I would test positive but....nope.... So I wondered about other Crohns sufferers. I was told by my doctor that I individuals taking remicade (and others with Crohns disease) may never test positive.... hmmm.. but that there were some people that did have positive readings.

Clo

I got a positive 1:80. Gotta go back to the doctor and see what it is.
Posted 4/13/2018 12:18 AM (GMT 0)
Positive ANA indicates auto-immune reaction. It could be from your UC, a different auto-immune disease such as Lupus, a reaction to medication or it could mean nothing. Further serologies can be done if your doctor feels your symtoms coincide with a second auto-immune illness.

I've been reading all your threads and both Quincy & Ipoop have been giving you great advice. Focus on what you've been diagnosed with (your UC) instead of everything else you "think" you might have. IMO it sounds like you have active UC based upon what you've been stating. And for someone with active UC and pancolitis, you are undertreating you illness.
Posted 4/13/2018 5:41 PM (GMT 0)
Mine is positive atypical discrete speckled pattern >1280.

You should do research on your result before seeing the doc. It can mean somethi g or nothing.

q
Posted 4/14/2018 12:42 AM (GMT 0)

quincy said...
Mine is positive atypical discrete speckled pattern >1280.

You should do research on your result before seeing the doc. It can mean somethi g or nothing.

q

Man I wrote a detailed text and the connection dropped. The forum tool didn't save the content sad

Well, basically I was saying that I researched and found that 1:80, with the speckled pattern doesn't have much significance in almost all cases. And that 20% of people wihtout any disease have it positive up to 1/80. And that I got tested for many things, including Iga, Ige, Igg, Igm, complements, specific allergies, VHS, many inflammatory markers (one specific for arthritis). I don't have the results for Iga yet, but all of the others are ok, except Ige, that's tremendously high. But being very allergic since I was a kid and having allergy to mites explains why the Ige came at 1113.

I also told I was worrying about CVID, but normal Igg and Igm, along with anti HBS for HBV present, the fact that I never had any lung diseases or otitis and that my son showed up with Coxsackie, and I did not get infected, means no CVID. I also can't forget that I have HPV and it never really "exploded". No warts, just subclinical very small lesions. That's evidence enough for me. If it wasn't, my pneumologist also told me to relax, after seeing my chest x-ray and the total absence of any symptons. I was also afraid of Lupus (I kinda still am), since my immunologist told me he would search for immunodeficiency and hyper immunity. But I have no symptons and no signs and my GI told me that this 1/80 could mean any inflammatory process happening and that it was surely my colitis (which makes sense, since it's auto immune). My immunologist says he wants to see all my tests to make sure my colitis is really auto imunne (he's a very experienced doctor. GI is very experienced too). As my GI is a very old man, with wide experience in many areas, he told me I shouldn't worry about Lupus. I wanna hear the immunologist will say though.

After I told my GI that I followed his diet and that all my symptons went away he accepted to try and see how the bowel will behave in next few months. He was ok about that because all of the inflammatory markers were very low and I am feeling ok. Let's see how it goes. I hope it works well in my case and changes that active instance. In my point of view, that'd be a cure (even though it's not really that).

You don't have lupus, do you?

Post Edited (marcell) : 4/13/2018 6:50:39 PM (GMT-6)

Posted 4/14/2018 4:53 AM (GMT 0)
Not lupus that has ever been hinted at.....but I will be checked for Sjogrens when i see the Rheumy in May.

q
Posted 4/28/2018 11:41 AM (GMT 0)
Back with some news. I went to my immunologist and he did what the GI's didn't: give me a diagnosis. Based on the eosinophily in the colon, he told me I have a rare condition, which is eosinophilic colitis and that my Esophagus worries him. I did some research and found that very little is known about EC and there's no treatment for it.

Cons: no cure, no treatment, I can't eat many things
Pros: Can be controlled more effectively with diet (mainly milk) and it's not related to cancer.

As it is very confusing, I'm not really sure about this diagnosis. But makes sense, because I had all symptoms and peripheral blood eosinophilly controlled with diet. In vacations now and reintroduced milk and things made of flour, along with sugar. Result: I had hurry out of my son's baptism because I couldn't hold it anymore. Same happened this morning. During the diet period loose stools happened only I ate something that had flour (but I didn't know it). This is such a complex situation sad EC would also explain the nodular hyperplasia on the ileum.
Posted 4/28/2018 2:20 PM (GMT 0)
Glad you have a diagnosis and now know what's going on at least. Hadn't heard of that before...
Posted 4/28/2018 3:16 PM (GMT 0)
Did you get a copy of your pathology report? It's good to have some answers, hopefully you keep improving with dietary measures.
Posted 4/28/2018 8:05 PM (GMT 0)

notsosicklygirl said...
Did you get a copy of your pathology report? It's good to have some answers, hopefully you keep improving with dietary measures.

Yeah I do have it. Here doctors can't hold it. So I have everything. It says I have active moderate colitis with eosinophily in most of the colon. It's just the rectum that has only 1 eosinophil, which is considered normal. But rectum too has colitis, so I don't know. Anyway, yeah, diet stops the symptoms and I come back to normal (with only IBS, which is not perfect, but better than diarrhea and urgency). The fact that I have only 1 eosinophil in the rectum but colitis is there makes me think this diagnosis could be wrong. But the scope doesn't describe the histologic findings. So rectum could be in a better situation. I don't know.
Posted 6/16/2018 4:40 AM (GMT 0)
Hey all! I have more news. I was thought to have eosinophilic colitis. After a period of diet I went to France. Ate cheese and bread and chocolate... after 5 days, during my son's baptism, for the first time since before the diet, I had to rush from the church to take a dump. I felt bad the whole day. It happened again later because I insisted in eating what I shouldn't. Now I'm back and I decided to search for a reference center. One of my co workers told me about a very good proctologist. She said her husband was thought to have UC. Doctors were prescribing all the meds for UC. Then they went to this doctor and he found out that despite his bad scope, he was suffering from a severe side effect of an antibiotic. So he doesn't have UC.

Then I decided to go to him and try to get a definitive diagnosis. I spoke to him for around 40 minutes, telling all my story and what I did and all I read here. Then he saw the scopes and biopsies. Then he told me: Look, from 2017 to 2018 you got better with no meds and diet was able to make your symptons disappear (I also told him about my irritable colon). Plus, you seem extremely anxious and stressed. I don't really think you have either eosinophilic or ulcerative colitis. You'd be much worse with UC and it's not likely that you would get better without a single medication. And those eosinophils there are not really showing EC. Your condition seems more like an irritable colon linked condition, that we could call fermentative colitis (he wouldn't give me the technical name). Basically, you're too sensible and things that ferment are your enemies. So with all your story and tests, I can tell you shouldn't worry. Though I wanna see more (asks for a calprotectin test). He explained he worked with a very notorious GI surgeon here, called Edmundo Vasconcelos (that names that huge hospital) and that he found this condition that was thought to be UC. He also told me that pathologists usually exageratte and that it's very rare for him to see a "normal colon" in colonoscopies. So he thinks biopsies are not consistent not only with what the colon looks like, but also its behavior. Also, he told me that manitol usually causes inflammations. Now I'm here anxious about the calprotectin test. I hope it's low. He told me that if it's low, then we can discard UC completely. Later I found that man was a "disciple" of Vasconcelos and one of the hospital's directors. He also saw all my blood tests with all no inflammation anywhere results.

I'll keep posting and keeping you informed about the next steps. I really hope it's good news and it's not UC. But if it is I'm already accepting the idea of taking mesalazine. I doesn't sound too bad actually.

All that makes me think about the high CRC rates in Brazil, despite the fact that people started to eat more meat (that is usually blamed) around 20 years ago, when CRC rates were already high. Fermentation and bad bacterias might be playing a role (brazilians eat a lot of rice and BEANS... and well... many italians immigrated... we love pasta and pizza. We have the best pizzas in the world, btw).

Post Edited (marcell) : 6/15/2018 10:45:35 PM (GMT-6)

Posted 2/15/2020 6:44 AM (GMT 0)
News from last year scope: No visible signs of current or previous inflammation, no ulcer, no nothing. Just a plain normal colon. Biopsies (which I asked them to describe just exactly what they were seeing): Lymphoid nodular hyperplasia (which is linked to allergies or parasites) all over the bowel. A few polyps caused by this hyperplasia. A slight congestion (which is usually a signal of inflammation, but at this level, it's normal in most people).

Fecal calprotectin test: 112. Neither positive or negative.

Background: Never took UC meds. Always had many allergies. My ige without allergy flare up is 1200 (almost 10 times the max). Immunologist tested my skin and it shows over reaction of eosinophils and mast cells (both related to allergies, being mast cells the main responsible for asthma, which I don't have). I have urticaria for no good reason. It just shows up.

The specialist (proctologist) took all that info and concluded it's not UC. He won't see me anymore because he has worse cases to take care. Referred me to his colleague, a GI doctor. According to him my fecal calprotectin and symptoms wouldn't just get better without meds. As we see here, UC doesn't get better by itself. It demands meds. All points out to allergies and/or mastocytosis or chronic urticaria. Good news is that I don't have UC. Bad news is that I don't know what I have.

I paid for a gene sequencing test. Dante Labs. It returned many messep up things. Most of them show no concrete evidence. It held my attention that some a few mutations were already seen in people with UC. But, also, many UCers don't have those mutations. So it's just a relation. Actual tests and story led to the conclusion that I don't have UC. I'm a hypocondriac, so I always consider I might have, but if I do, it comes and goes by itself, not taking a huge toll, which is not fairly common in this disease. Other mutations were shown too, like one in MDM2, which is related to p52 protein. So if I have a cancer one day, I have a high risk that it develops way faster than usually. I've been stable for quite a long time. I keep skipping my diet, so I have a few isolated diarrheas, that don't get worse and stop in the next day. I had an urgency last week and I didn't paid attention to it. So it got intense. I felt my colon moving intensively. It always comes with blood when I need to wait more than I should. I was punished that night. It's still a bit upset. Whatever I did or ate (or even a virus, since one of my close colleagues was suspected to be having the craps) will still punish for a week or two. That's how long it usually last, when it starts. Whatever I have, I hope I can find out and treat.

Venting here:

But I'll be honest: I got enough of so much depression over health issues. I have Barrett's esophagus too. It was once a low grade dysplasia, which is not there anymore (But Barrett's is). It's a constant cause of strees and worries. My GI tells me to stop it, or my bowels will always be upset. If there's dysplasia again, we have many options before it gets even close to becoming an adenocarcinoma. I also went to a neurologist to try to find out why my neck was rigid and a bit painful. Considering I'm stressed, anxious and keep using my cell phone all along the day, it was probably really just muscles. But hey! Why don't you go for a MRI! So I went for it! Result: a very small ball shape shade shows on SWI sequence. When I go to see what they concluded: small lesion on paraventricular left front lobe on SWI, no mass effect, all the rest cool etc, suggesting brain capillary telangiecstasia. I was shocked! Like... *** is this thing! But before I buried myself in more depression, I went to make a small research. And it turns out that this result is very specific. It's not a tumor. It's just a bunch of malformed capillaries that could be there for decades. They don't cause anything. And they are shown specifically in SWI sequence. If you'll have something in your brain, that's the thing you wanna have. Researchers say you don't need to do anything after you find it. It's very specific. I went back to the neurologist and showed him the results (here doctors don't get to take our results. We bring them). He told it didn't worry him at all. Didn't look like a tumor, just a malformation. But he told me to get a new RMI in april, then again after 1 year, just to make sure. Because according to him, a tumor called low grade glioma, which is not malignant, my not present mass effect too. Explained that in this case, with such a small tumor, surgery was out of question. So in case of tumor, we'd wait for it grow. But I do I have Google! "Low grade gliomas (LGGs, WHO grade II gliomas) may grow very slowly for the long periods of time, however they inevitably cause death due to the phenomenon known as the malignant transformation."
I know it's not likely to be that. Diagnosys is given and is very specific. Doctor just really wants it to be 101%. But darn I worry. It's just natural. And I honestly had enough of this bs. I just wanna live my life and not die of any crippling disease. And have some peace of mind. That's why I haven't been here. Sorry for the bigger text. Just keeping you all posted.
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