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Possible Misdiagnosis

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Posted 4/2/2009 1:04 AM (GMT 0)

pb4 said...
Don't put words in my mouth, not once have I ever said your condition or anyone eles for that matter is the same as mine yet you keep repeating that

You keep assuming my situation is like yours. You even stated that you thought my trigger was the antibiotics and probably poor eating habits but that in order for the disease to be triggered I had to be predisposed to getting the disease.

pb4 said...
and don't take out of context my remark on fecal transplantation because all I said was I wouldn't do it and by saying that it doesn't mean that no one eles should.

These were your words on the subject of fecal transplantation:

"I don't think swapping poop was ever intended to be a natural thing...don't know if I'd call it evolving or de-volving at this point"

"De-volving" sounds quite disparaging to me.

pb4 said...
Just because you can't have an adult conversation about veiws and opinions that are not the same as your doesn't give you the right to have attitude, I was not the only one that expressed my veiw about the gentic factor and IBD, others also stated they had a hard time believing it wasn't genetic. Singling people out that ask you questions that you can't give an explanation to so you just get attitude instead is not very supportive by the way. In the past posts I was simply asking you questions about how you think you got UC and why you didn't believe genetics had anything to do with it and it obviously got you thinking didn't it or you wouldn't have started this post titled "possible misdiagnosis".

You weren't just asking me questions, you were belittling me, just like you are doing now when you say that I can't have an adult conversation about views and opinions that are not the same as mine and that I have an attitude.

And it did NOT get me thinking. It got me upset that you kept insisting that my colitis was genetic-based when it wasn't, that you were conjecturing that someone in my family would get colitis, that you kept referring to articles that did not offer any proof. So I called up one of the researchers and asked myself. I had never thought that I did not have antibiotic-associated colitis. In fact, that's why I did fecal transplantation. I read that it helped those who have colitis due to antibiotic use.
Posted 4/2/2009 1:19 AM (GMT 0)
Well in order to not offend the other members on this board, I cannot help how you interpret everything I say, you seem to be quite defensive in posts to me any time I have anything to say and it happens to be my personal veiw about the poop swapping so what that doesn't mean I don't support those that do it, whatever works is all that matters. Well I would think it got you thinking since you posted about it possibly being a misDX and I was asking you questions you just got defensive instead of communicating....sometimes things appear to come across a different way when typing compared to talking and many easily misinterpret things due to that so if I got you upset that was NOT my intent I thought in regards to the genetic discussions we were just debating things, I was not looking to fight/argue with anyone, so I do apologize for upsetting you regardless of the topics that were discussed because that was not my intention....I just wondered what made you know so for sure that your condition wasn't inherited and what all you were basing it on, I know not every IBDer gets it apparently via inheritiance/genetics and that is confusing to me as to how and why as it obviously is to many people including some researchers, anyways, I just thought it was an open discussion on the topic I wasn't trying to single you out or belittle you. But I have never said that you or anyone eles condition was/is the same as mine, I've known for a long time there are virtually no 2 IBDers alike and what works for some doesn't work for all.
Posted 4/5/2009 7:44 PM (GMT 0)

fruitgirl said...

However, antibiotic-associated colitis is also referred to as pseudomembranous colitis because the colon forms a pseudomembrane due to the infection. I believe this looks different than ulcerative colitis when a colonoscopy is performed.

It is very possible the doctor was not able to tell the difference, because he only looked at a very small part of the colon when I was flaring. I was too inflamed to have a colonoscopy done; so he did a sigmoidoscopy, and even then he said he wasn't able get very far up the colon. I had a colonoscopy after the flare was over. By then I was 98% healed.
Posted 4/5/2009 9:36 PM (GMT 0)

 

therearemiracles said...
I'm going to do a stool test tomorrow, I have to pick up the kit today ......     I'm just a number to them. When you mention UC in my town to any MD (trust me I've been to the only 3 we have) they don't want to help you they say see your GI, but my GI I can't in for two months every time, I feel by myself and have since day one. My marriage fell apart b/c of UC he didn't believe me for the first 3 years. I've been my own adovate.

Hi 'miracales:

My g'son has had the same problem with his GP...  he will not intervene with the GI for ANY reason!  He just keeps telling my g'son...   "wait till you see the GI & discuss it with her".     Like you, it takes from 1-2 mos to get an appt with her. 

There are only 2 GP and 2 GI's within 1 hr of where we live.    That's a 2 hr return trip.   

This forum, & having access to the Internet has been a life saver.  Thank God, for suggestions from other experienced UC patients & finding online "home remedies"!   Some of these experiences & remedies have help my grandson tremendously in coping with the effects of an otherwise overwhelming disease!   One day at a time....

PS:  I too had a broken marriage due to chronic illness many years ago.   I still can't believe I raised my children alone, worked to retirement & managed to become a "senior citizen"....    never thought I'd live this long...   let alone cope!   Life has been a "barrel of challenges", in every aspect....    but I'm still alive and loving it!   If it wasn't for modern medicine, none of us would be alive today.   So I consider myself to be living on "borrowed time" and treat that as a privilege.

It's my g'son who has UC & no words can describe how much I love & care about him.  

I too live with a "mess" of medical problems...  hereditory Muscular Dystrophy, Paget type Bone Disease, Bone Marrow problem, faulty Heart valve, Asthma. My  biggest problems are pain & mobility!   To me, Ulcerative Colitis appears to be a much more difficult illness to deal with than all of my problems put together!  My heart goes out to you dear.

Posted 5/5/2009 1:08 AM (GMT 0)
I took an antibiotic February of this year for a sinus infection.  I started having symptoms after that.  I had a colonoscopy done on 4/6 and was diagnosed with UC.  Could the diagnoses based on the colonoscopy been wrong and I have antibiotic-associated colitis?  Or could the antibiotic have triggered my UC?

I am taking nightly Rowasa enemas, and my symptoms cleared up very quickly.  I have never felt that sick.  I had a C.diff test done that came back negative, but I heard you can get false negatives.

I do notice if I eat fried foods, I have 3-4 BMs the next day, but normally I just have one a day. 

I guess I'm wondering if antibiotic-associated colitis could appear as UC during a colonoscopy? 

Would my treatment change based on the diagnoses?

Posted 5/5/2009 1:27 AM (GMT 0)
I know I took quite a bit of antibiotics for a few years prior to being diagnosed with colitis, my mom has mild colitis and my sister had it real bad after she was on heavy antibiotics for long time. I think it is very possible that it can lead to colitis, but I don't know if would be a different type of colitis in our cases. Mine didn't happen exactly during or right after taking antibiotics, it was months later. I suspect it could have set up a bad environment in my gut for the wrong bacteria to take hold, but I am only guessing here.
Posted 5/5/2009 1:33 AM (GMT 0)
Hi Zippy,

You can get it months later and it could still be antibiotic-associated Colitis. And then it could also be UC, triggered by antibiotics. In other words, you could be predisposed to getting Colitis. In either case, Probiotics should help balance the bacteria in your colon.
Posted 5/5/2009 1:35 AM (GMT 0)
when I was first diagnosed my original GI noted high white blood cell counts....this was 15 years ago and to date I do not know of any formal test for c.diff that I have had....but I just might not know of them? My latest GI that I am seeing at UPMC Presbyterian in Pittsburgh has noted he would like to test me for c.diff...
Posted 5/5/2009 12:29 PM (GMT 0)
Does anyone know if a biopsy can tell the difference between Antibiotic-Associated Colitis and UC?
Posted 5/5/2009 6:29 PM (GMT 0)
I always thought maybe my colitis was caused by c.diff or antibiotics but a week ago I had a stool test and it came back clear. Well, not just one stool test, three, and they were all clear. As for the idea that it is from antibiotics, maybe it is. I can't say for sure. What I can tell you is this, the results the doctor gives you isn't always the full pathology report. I finally saw my pathology report from 2 years ago and it said right on it "Chronic ulcerative colitis". Does that mean it is not caused by antibiotics? Would it say something different if the cause were antibiotic? I am not sure but don't think so. I find it funny that all this time I thought I had a bug and no one ever told me the pathology report was pretty clear. Now I am starting to believe I am just an unfortunate person with incurable UC.

Posted 9/19/2021 7:25 PM (GMT 0)
Hello. This is my first time writing in the forum so hopefully I don’t ruffle anyone’s feathers. Just looking for help for my 20-year-old son.

My son was diagnosed seven months ago. It has been the road from hell. He originally had rectal bleeding with no pain. They started him on Lialda and 12 hours later hours he was curled up in a ball with intense pain, cramping and 22 times of pure blood overnight, leading to hospitalization within a day with full on pancolitis. He’s been in and out of the hospital five times between June 18 and August 12. He had been colitis again. He has been switched to interview which did not do anything, now Humira and that is still not helping anything. He started to Humira July 1. He has also been on multiple rounds of oral prednisone, saw you Medrol in the hospital and interestingly enough anabiotic’s. The only times he has seen any relief is when he has taken antibiotic‘s. In June they started him on vancomycin and on day three, prior to any solumedrol being started his pain was instantly gone.He started to form and feel better and even went back to work. He lasted three days As he began the taper of vancomycin then took a downturn and he went back in the hospital again - bleeding, horrid diarrhea, repeated trips to the bathroom. I don’t understand why antibiotics seem to work but the Biologics do not.

Strangely enough when he went on the Vancomycin, the right side of his colon cleared up within 10 days between CT scans. This happened twice.

I’m also told he was CDIff colonized… But not infected.

Thoughts anyone?
Posted 9/19/2021 7:26 PM (GMT 0)
I also forgot to mention, that he had an IBD panel through Prometheus and it came back “not consistent with ulcerative colitis“. Neither of the two p-ANCA markers were positive.
Posted 9/19/2021 8:04 PM (GMT 0)
Hello, sorry to hear your son is suffering so much. Blood tests are not very helpful in diagnosing UC, as there is no specific marker that will indicate UC (there are general markers of inflammation and immune response but they don't tell you where in the body the problem is coming from).

What sort of doctor is he seeing? A GI who specialises in IBD is warranted if he hasn't seen one yet. Has he had a colonoscopy?

(Also just throwing this out there - if he has a chronic C diff infection, do you have a hospital offering fecal transplants?)
Posted 9/19/2021 8:38 PM (GMT 0)
MissuJen,

UC is confirmed by scopes and biopsies. Did your son have scope?

Has your son tried Dificid? It’s more effective than vancomycin in treating c.diff
Posted 9/19/2021 9:16 PM (GMT 0)
Also. Humira does not work for all UC patients (maybe 50%?), and a small number of patients are allergic or intolerant to mesalazine-group drugs which includes lialda.
There are other drugs to try however, if he does have UC.
Posted 9/19/2021 9:51 PM (GMT 0)
@poopydoop - hello and thank you for replying! Yes he has had colonoscopies… Each of them come back and say infectious or inflammatory… Nothing really definitive but maybe a colonoscopy doesn’t say that in the report?

You are correct in that there is no blood test for ulcerative colitis. However… Typically those inflammatory markers the seed rate and the C-reactive protein will be elevated. his or not and never happen even during pancolitis. Aside from that Prometheus has an IBD panel that is a 17 panel assay… And it checks genetic markers serology and inflammatory markers. It usually comes out and says whether it’s Crohn’s or ulcerative colitis. The p-ANCA antibodies are typical for someone with ulcerative colitis to have but he has none of those. Which is probably why the Prometheus came back and said “not consistent with inflammatory bowel disease”. I understand that’s not definitive though… Whole thing just does not make sense as he started this six months ago and the only thing that has affected his ability to form any poop and/or stop any bleeding has been antibiotic’s. Perhaps that is just coincidental. It just concerns me when none of the UC meds including infusions have helped him, none of the inflammatory markers are raised, antibiotics help him, and his pain is 24/7 whether he has to go to the bathroom or not. The pain is not cramping it’s sharp pains like “glass shards“. It just seems odd.
Posted 9/19/2021 9:53 PM (GMT 0)
@poopydoop with regards to your comment on Lialda… Yes, I think possibly he had a reaction to it because he was fine before he took it and it just sent him into the bowels of hell. He’s allergic to sulfa drugs so there’s a little bit of a common thread there. Perhaps it is just his bad luck that the Entyvio did not touch it, and now the Humira is not working. Maybe he will have better luck with Remicade. Shall we say four is a charm? LOL
Posted 9/19/2021 10:02 PM (GMT 0)
@poopydoop in response to a question about a G.I. doc. Yes he is seeing a G.I.… Due to insurance switching around he has seen a different one and then of course when is in the hospital different one shows up every week. They each have their own plan of care and have added to and the taken away his meds so many times. His original doc is now concerned that his original diagnosis was not correct… However the doctors that he’s seen since … said “well I go by whats on the piece of paper“ and did not want to discuss my question of why antibiotics seem to help but nothing else does. They also did not want to entertain a decision as to why the long 8 to 10 inch thing came out of them… As well as small white curvy and opaque triangular things when he was on a full liquid diet only. Just wish they would sit down and actually have a back-and-forth discussion
Posted 9/19/2021 11:15 PM (GMT 0)
What was your son's health like a few months before he got sick & what was his symptoms very early on? I agree with poopydoop, I would look for an IBD specialist which is different from a regular gi.
Posted 9/19/2021 11:24 PM (GMT 0)
Hi thanks for all the detailed replies. Wow, you have been through a lot (both of you), what an unfortunate pun too, bowels of hell.... I'm not medically trained, but the fact that the original doctor is doubting his original diagnosis is pretty telling, and the fact that your son has responded to antibiotics but none of the other treatments warrants further investigation. Even if he does have UC, if there's a chronic C diff infection at the same time, that needs addressing.

I'm sorry you're tied up with insurance restrictions re GIs as well. I do think it's important to for a patient be able to have a back and forth discussion with their specialist, as well as be involved in deciding the treatment path. If you have the flexibility to do so I would maybe even get another opinion from another GI (maybe even people on here can recommend a good doctor who is local to you).

Maybe it helps to share some personal experiences. Re blood tests, all my blood tests have come back normal, even when I had pancolitis. My CRP has never gone higher than 10, and usually it's around 1-2 (and that was even with severe ulceration in my rectum). I've never heard of p-ANCA being used to diagnose UC (at least, I've never seen it in my blood tests nor heard a doctor mention it) but I'm outside the US so maybe there are different protocols where I live. That being said, my scopes and biopsies have always been totally consistent with UC, so there was never any uncertainty in my diagnosis (certainly never a query of infectious colitis) If quincy pops in here I'm sure she would ask to see the biopsy report. And... it took 5 GIs before I found one that I was happy with - one that works exclusively with IBD patients.

Another thing that might give some relief is (high strength) probiotics.

Post Edited (poopydoop) : 9/19/2021 5:27:11 PM (GMT-6)

Posted 9/19/2021 11:28 PM (GMT 0)
@straydog thank you for your question. This all started in August 20 20 with tingling in his throat. He had tingling every time I eat or drink something. After a few weeks fatigue set in. This was all right after he moved to Arizona from California. He was caught in a dust storm so at first it was thought maybe he had valley fever. about 10 to 12 weeks after the tingling started he began with painless rectal bleeding. He had a CT scan the day after that started and it was totally normal. He then had a colonoscopy which showed mild colitis and the doctor thought he saw three small ulcers. Since then he has developed multiple cysts on both kidneys. He had one cyst for a few years. He then developed a polyp on his gallbladder as well. Coincidentally, had a horrible belt with pain after eating that was very much like a gallbladder attack. Started in the center upper abdomen radiating to the back between the shoulder blades and then finally under the right rib cage. within 10 minutes after eating.

After the initial colonoscopy in December of 2020 the doctor put him on Lialda. Once he started that within 12 hours he was in horrible pain. And within a day or two he was in full on pancolitis in the hospital. It’s been hell ever since.

I’ve researched for G.I. docs… But have not for “IBD specialist” I thought they were one in the same. Any suggestions? I have started looking for a functional medicine doctor and found one that was an MD who trained as a functional specialist at Mayo. I am looking into her.

For a classic case of El Torito colitis all of these weird symptoms just seems so very strange. Especially given the fact that antibiotics seem to work to make him feel better.
Posted 9/19/2021 11:31 PM (GMT 0)
Lol… I hate the inaccuracies of voice to text… Yet I still use it. That was supposed to say classic ulcerative colitis
Posted 9/19/2021 11:34 PM (GMT 0)
@poopydoop @quincy
It would be wonderful to get some names of the dogs in the Scottsdale Arizona area or even within a 50 mile radius that specialize in IBD only. Thank you so much! What a blessing this form is it’s helpful to be able to talk to other people and hear stories. I’m so worried about my son. I’ve already lost one child I can’t lose another.
Posted 9/19/2021 11:35 PM (GMT 0)
@poopydoop I am curious… Wouldn’t one of the colonoscopy reports actually say alterative colitis? The pathology? I have never seen those words on any of his colonoscopy is… Only active colitis on the first one in chronic active colitis after that. Each of them mention differentiating between infectious and inflammatory based on clinical results.
Posted 9/20/2021 12:38 AM (GMT 0)
You need the pathologist report from the colonoscopy— not the dr report. Dr report will only be on visual findings while the pathologist will be on a microscopic level which is the definitive diagnosis tool. You will need to contact the dr who ordered the colonoscopy to get the pathologist report.

Have you checked the Mayo Clinic? There’s one in AZ I believe. Not sure if they have GI who specializes in IBD there or not but you could call and ask.
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