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Posted 5/7/2024 7:16 PM (GMT 0)
Okay, here are the scope results from back when I first had an issue (severe bloody diarrhea for about a week) which is what prompted me to see a gastro dr and have a colonoscopy done. Although, I've never had anything that bad happen since then. Look for dates at top scopes for June 2022, and make sure you know which your looking at conoloscopy vs sigmoidscopy because they are not in the correct order on the link page.

The second set of scopes is from a follow up Sigmoidscopy that was done in July of 2023, again just look for the dates at top of scopes. I did this unsedated so I could see exactly what the dr was referring to. I did see some yellow streaks on the tissue inside.

The third document is whats called a Prometheus test. That was done because we weren't totally sure that I actually had UC. For about two months before I had the first ever issue, what you see on the colonoscopy results from back in June of 2022, I was gargling hydrogen peroxide for 2 to 3 minutes twice a day to whiten my teeth. I never thought much about the dangers because I was spitting it all out and rinsing my mouth. I did feel a little discomfort in my abdomen, but just assumed it was hunger pains because I sometimes go all day with out eating. The Prometheus test didn't show any markers for IBD.

https://www.dropbox.com/scl/fo/ot9ii72upqghxbqimhv5x/AF5hzcEkaYtRW9F3c6zLM58?rlkey=8x4ok4ab1bolh2z1klm6i0cjk&e=1&st=yvar9p8y&dl=0

JML
Posted 5/7/2024 10:25 PM (GMT 0)
For the most recent images, it looks like the first three images are for the 2022 colonoscopy; the fourth image is for the 2023 sigmoidoscopy; and the fifth image is the Prometheus Test.

(That means the second image is labeled wrong, for those looking at them).

Can you show the right side of the Prometheus results (where the "Inflammation Results" are shown? They got cut off in your image.)

When you first got sick, did they do any stool cultures? Have they done any more since then?

Do you have any family history of any so-called autoimmune diseases such as IBD, lupus, rheumatoid arthritis, psoriasis, etc?
Posted 5/9/2024 12:09 AM (GMT 0)
I will post the right side (inflammation results) of the prometheus test tomorrow. Can't do it on these little hand held devices, need to be on my desktop pc.
After that I will sit down and respond to everyone's questions one by one, wanted to post what everyone was asking to see first.

JML
Posted 5/9/2024 12:52 PM (GMT 0)
Okay, I fixed some things at this link that someone brought to my attention and added the inflammation info that was not totally visible in the Prometheus results page.
https://www.dropbox.com/scl/fo/ot9ii72upqghxbqimhv5x/AF5hzcEkaYtRW9F3c6zLM58?rlkey=8x4ok4ab1bolh2z1klm6i0cjk&e=1&st=yvar9p8y&dl=0

JML
Posted 5/10/2024 1:54 AM (GMT 0)
Thanks for sharing the results. If I were you, I'd seek out an IBD specialty center in your area, perhaps at a university hospital or at a hospital in a large city nearby. Then probably get another full scope with biopsies done.

To me this looks like IBD, possibly Crohn's, and it is well beyond "mild" and well beyond what mesalamines can treat. You need to get the diagnosis confirmed and get on a stronger, appropriate medication.
Posted 5/10/2024 2:12 AM (GMT 0)
Also, I'm actually a little surprised that the Prometheus results came back with "Pattern Not Consistent with IBD."

Of course, I don't know their precise algorithm, but your results show several items that are somewhat of a red flag for IBD. You have mutations in three of the four genes they look at. Your vcam-1 levels are just above reference, and your SAA levels (an inflammatory marker) are well above reference. Your antibody levels for Crohn's are all below reference, but a couple are just a little below and none are really low.

So, again, I don't know their algorithm, but their conclusion looks suspect. Keep in mind their results miss IBD about 20-30% of the time (I think their sensitivity is in the 70-80% range for detecting IBD when it's truly there).
Posted 5/12/2024 6:29 PM (GMT 0)

beave said...
Thanks for sharing the results. If I were you, I'd seek out an IBD specialty center in your area, perhaps at a university hospital or at a hospital in a large city nearby. Then probably get another full scope with biopsies done.

To me this looks like IBD, possibly Crohn's, and it is well beyond "mild" and well beyond what mesalamines can treat. You need to get the diagnosis confirmed and get on a stronger, appropriate medication.

Now, you're scarring me, what the H. Are you going by the colonoscopy results from 2022? Yes, those results looked pretty bad, keep in mind that I was gargling hydrogen peroxide two times a day, for two months prior to that. That alone might have caused major inflammation. I've never had constant, bloody diarrhea for a week straight like I did back then. If you compare the latest sigmoidscopy results from 10 months ago there's quite a difference.
Final Diagnosis:
Colon. Recto-sigmoid, biopsies:
Mild active chronic colitis and cryptilis
Negative for crypt abscesses, granulomas and dysplasia.
These results would justify something much stronger than Mesalamine?

Yes, my dr told me that the prometheus tests are only 80% accurate, not 100.
I'm due to see him again in July and am going to request another colonoscopy.
Posted 5/12/2024 6:55 PM (GMT 0)

FlowersGal said...

JustMyLuck said...
Hi Everyone,
Entyio is a nasty medication, it's like playing the death lottery the longer your on it, eventually the complications it causes is what kills you (especially as you get older) not the UC.

Thanks guys,
JML

Just as a data point — entyvio is considered as having the least side effects of the biologics. It is not a “death lottery”. Any medication will list all sorts of horrible possible complications. But when you look at the actual statistics it’s never quite as bad as they list. People have died from untreated UC too.

Anyway just wanted to state I’ve been on entyvio for 7 years now, happily in remission, and absolutely no side effects!

You are one of the lucky one's. Here are reviews from actual patients. 1 star at 17% vs 10 stars at 25 % is not a very wide spread. Many people losing their hair, that's serious and something that you usually see in chemo patients. https://www.drugs.com/comments/vedolizumab/entyvio-for-ulcerative-colitis.html
If you're say 81 yrs old, you immune response is already low, throw entyvio in the mix and get pneumonia while in the hospital for an unrelated issue,........you're chanes of making it out of the hospital alive are probably very slim.
Posted 5/12/2024 9:46 PM (GMT 0)
Yes, going by the colonoscopy results of 2022. That looked bad, and serves as a baseline for what you're deaing with.

I don't see what the hydrogen peroxide has to do with this at all. I think you're making a connection that just isn't there.

As for drug side effects, you simply can't rely on online reviews. That's not how science works. You're going to find that people who experience unusual side effects make a review, while thousands who don't aren't saying anything. It's like reviews of anything else - the ones who have a problem are the ones likely to write a review. If I eat at a restaurant and have a normal experience, I'm not writing a review. If I eat at a restaurant and the waiter says I"m ugly and the manager laughs at me, I'm writing a review.

Look at controlled clinical trials where the drug is compared to placebo.
Posted 5/13/2024 12:03 AM (GMT 0)
Many of you have suggested that I find a better dr, the problem is that they're all the same. They all just go by the standard of care/American journal of medicine/physicians book of medicine,(not sure what it’s called) regulated by the medical authorities. It's just like how there are possible natural cures for some cancers, but a dr is not allowed to talk about them with you. They must stick to the script literally or risk losing their license.
I recently went to see a different gastro dr after reading her bio and watching her greeting video. She talked about how since she was from Iceland she took a different approach to care that differs from western medicine and how she was more open minded about natural cures. I thought she would be perfect.
What a let down she turned out to be. Every single thing I brought up she just dismissed.
I brought up things like taking turmeric to reduce inflammation as well as studies that have been done on tauroursodeoxycholic acid. As well as asking her if she heard about the recent trial currently going on with sacral nerve stimulation. https://columbiasurgery.org/news/groundbreaking-study-treating-ibd-here-s-what-know-about-sacral-nerve-stimulation
She just said,"Oh no,no,no, none of that is fda approved coarse of treatment.” I was just trying to have a conversation with the woman about possible new advancements in care and each time she just cut me off and changed the subject.
The final straw came when I told her that I would once again have stop taking mesalamine for the summer because it made me extremely sensitive to the sun and I work outside. Her response was, “ then we’ll need to get you started on Entyvio”.
I was thinking to myself, really, there are 72 different medications for uc and she’s wants to take me from the safest one all the way up to one of the more dangerous without even doing a colonoscopy to justify such a drastic change.
At that point I said, “I think we’re done here and got up and just walked out of the room. She just starred at me as if to say, “where do you think you’re going”, way too funny.
I don’t know what other doctors to try, this dr and my current dr are both part of the hospital, but different practices. I though that would be better than seeing a dr with a private practice. The other issue is how many different gastro dr's is my insurance going to allow me to try before they stop covering them.

JML
Posted 5/13/2024 12:28 AM (GMT 0)

beave said...

When you first got sick, did they do any stool cultures? Have they done any more since then?

Do you have any family history of any so-called autoimmune diseases such as IBD, lupus, rheumatoid arthritis, psoriasis, etc?


Yes, he had my stool tested, but don't remember him saying anything about it, so I guess everything was normal. I'm going to ask to have it tested again because it seemed odd to me that when I took antibiotics recently for an unrelated issue it was as if my uc completely just went away as if it was bacterial related. (I'm going to explain in a separate post)
No family history of ibd on ither side and as far as I know no other autoimmune diseases.
Posted 5/13/2024 2:49 AM (GMT 0)

beave said...

I don't see what the hydrogen peroxide has to do with this at all. I think you're making a connection that just isn't there.


Scroll down to the "Are there any risks" I was using 12% undiluted.
https://www.healthline.com/health/gargling-hydrogen-peroxide#risks

JML
Posted 5/13/2024 2:55 AM (GMT 0)
Something happened to me recently that is very interesting. I was having problems with pain in my bladder and urinating a lot more than usual. At one point I was urinating every 15 minutes and even right after I went I still felt like I had to go. I couldn’t even pass gas because I was afraid if I relaxed my muscles to pass the gas that I might urinate. I was also dealing with slight abdominal pain and bloating at the same time. I assumed the abdominal pain and bloating might be from UC and it was just putting pressure on my bladder thus causing frequent urination but wasn’t sure. I went to see my primary doctor and he didn’t think it was uc related. He thought it could be a UTI and immediately started me on antibiotics while we waited for the urine analysis results to come back. I took the 500 milligrams of antibiotics every 12 hours. Three days later I got a call from my his nurse saying the urine test didn’t show any bacteria and to stop taking the antibiotics, so I did. Interestingly though, the three days that I was taking the antibiotics and for the three or four days after I had no UC symptoms whatsoever, it was as if it just vanished. I felt better than I had in the past two or three years, I had extra energy and started working on/fixing things in my apartment again. I also noticed three other things 1st my stool no longer smelt like I was dying, 2nd my stool was a more normal, darker shade of brown and 3rd my stool was firmer than usual.
Has anyone else ever had this effect while taking antibiotics?
I’m now wondering if I don’t have some kind of bacterial thing going on in my colon. I wish I had done the entire antibiotic cycle instead of stopping it, maybe I could have totally killed off all the bad bacteria instead of giving it a chance to make a comeback like it did.

JML
Posted 5/13/2024 3:15 AM (GMT 0)
Follow up to the antibiotic post

I called my primary doctor to let him know I was still having bladder and lower abdominal issues and he ordered a CT scan. Unfortunately, I was actually feeling better by the time the scan date rolled around but I went and did it anyway because this issue seems to come and go. I got a call from his nurse a couple days later. She said the scan didn't show anything that would cause my symptoms except maybe the diverticulosis, but probably more so, the degenerated discs in my back which I already knew about and has been causing a lot of pain for the last couple of years. She said that the doctor recommended that I go back to my orthopedic doctor, there’s a chance the nerves in my spine are now being pinched or compressed which can cause bladder and bowel issues. I’m going to pick up the CT scan results and post here. I have a appointment to see an orthopedic doctor on Thursday.
I had no idea that the nerves in the spine control bowel and bladder functions.
https://www.medicalnewstoday.com/articles/nerves-that-control-bladder-and-bowel-function

JML
Posted 5/14/2024 11:39 PM (GMT 0)
Here are two results from my recent ct scan on May 1st. One for my spine, which could be the cause of my bladder issues and another that covers GI which again could be the cause. https://www.dropbox.com/scl/fo/bswuymlxbdbhw3d8909x9/AKJE72nIGgpp07QoXUS5l9k?rlkey=3jpdthl7aiqdkdlvrisj4n7fu&e=1&st=089pf4lc&dl=0
My primary dr sent me for it to try to determine what was causing my bladder problems. Unfortunately, the idiot choose to have the test performed using barium. When you do a barium ct scan you can't drink anything after midnight the day before the the scan. In order to get a good scan of the bladder it needs to be full. By the time my scan took place the following day I had already urinated several times. The notes on the results said the bladder couldn't be evaluated because it was underdistended. So I basically subjected myself to all that radiation for nothing, and still don't know what's causing the bladder problems.
I know, I know, find another dr. How would I go about doing that and be able to afford the trial and errors? They have to be in my network and I have to pay a $45.00 copay each time I see one.

JML
Posted 5/15/2024 1:09 AM (GMT 0)

Old Hat said...
JML-- I did manage to find the forum member who posted about SCAD: it was lka58 who seems to have last updated us in Oct. 2023. There were questions about her diagnosis/treatments, but the consensus apparently was that she had a form of diverticular colitis.

Thank you Old Hat. I just searched diverticular colitis and apparently it's difficult to tell the difference between UC and diverticular colitis.
I just found this on PubMed Central, it's my goto when it comes to the latest studies and trials being done.
"Pathogenesis is multifactorial with multiple reports noting clinicopathological overlap between diverticular disease-associated colitis DAC and inflammatory bowel disease (IBD) especially in patients with granulomatous colitis. In this setting, caution should be exercised to avoid an inappropriate diagnosis of IBD."
What I don't understand is how can there be an inappropriate diagnosis of IBD. From what everyone here says, the biopsies confirm it. If your biopsy results say UC, then you have UC, end of discussion.
My latest sigmoidscopy 2023 biopsy results showed UC, but no granulomatous colitis. The ct scan results that I just posted showed scattered diverticulosis.
You had said in a earlier post that lka58 was using UC meds to treat her diverticular colitis. So I guess as long as I treat my UC I'll also be treating any possible diverticular colitis as well,.....right?

JML
Posted 5/15/2024 1:27 AM (GMT 0)
A few comments:

It's well known that some people with IBD respond positively to certain antibiotics. But it's only a temporary effect. Antibiotics do not work as a long term treatment. The thing is, antibiotics may make one's IBD better, or worse. It varies from person to person and even from antibiotic to antibiotic. One might make you feel better (for a short while) while that same one sends me into a flare. Another one might send you into a flare and make me feel better temporarily. But again, studies have been done, and even the antibiotics that show short term benefit do not retain that benefit long term.

As for biopsies, they don't show UC or not. They can show patterns and findings consistent with UC, or patterns and findings consistent with Crohn's, or patterns and findings that show something else entirely. The diagnosis is always a combination of factors - scope results, blood work, symptoms, patient history, biopsies all put together.

Finding granulomas can help distinguish UC from Crohn's when it's otherwise not clear. But not finding granulomas doesn't rule out Crohn's. They're not always present even in Crohn's, and even if they are present, they're not necessarily going to be present in every tissue sample looked at. Finding one means something, but not finding one doesn't mean anything.

As for your back, those look like minor issues that would be found on the scans of just about anybody over the age of 40. My lumbar spine is far worse (three consecutive fully ruptured discs). It's very unlikely that the issues seen there are causing any bladder or bowel issues.

And one final comment: A CT or MRI is helpful for looking at tissue outside the colon (such as lymph nodes, small bowel, liver, kidneys, etc), but a colonoscopy is still the better way to assess the inside of the colon.
Posted 5/15/2024 1:30 AM (GMT 0)

beave said...

I don't see what the hydrogen peroxide has to do with this at all. I think you're making a connection that just isn't there.

JustMyLuck said...
Scroll down to the "Are there any risks" I was using 12% undiluted.
https://www.healthline.com/health/gargling-hydrogen-peroxide#risks

JML

The risk would be if you accidentally swallowed some (or a lot), and the risk would be to your esophagus and to your stomach. It's not going to make it intact all the way to your colon and it's not going to cause what was seen in your scope results unless you were doing something like hydrogen peroxide enemas.

Post Edited (beave) : 5/14/2024 5:33:44 PM (GMT-8)

Posted 5/24/2024 5:37 PM (GMT 0)

beave said...
Thanks for sharing the results. If I were you, I'd seek out an IBD specialty center in your area, perhaps at a university hospital or at a hospital in a large city nearby. Then probably get another full scope with biopsies done.


Okay, I called my insurance co and requested a complete list of all the gastroenterologists that are within my network. I found a university hospital, but it's a good hour away from me. What exactly would be the benefit of going to a university hospital over the hospital that I currently go to? I thought it would have something to do with all the Dr's being recent grads and having knowledge of all the recent advancements in medicine. However, when I scroll thru the list of gastro Dr's at this hospital most appear to be middle aged and older just like at my current hospital.
The other thing is that I feel comfortable at my hospital because it's fairly new and always clean. Many of the hospitals in the big cities are old, rundown, dirty, poorly staffed and overwhelmed with patients. The drs just don't have the extra time to really evaluate someone and search out other possible illnesses that have similar symptoms/too guick to just label someone so they can move on to the next patient.



Thanks,
JML
Posted 5/24/2024 7:25 PM (GMT 0)

beave said...

The risk would be if you accidentally swallowed some (or a lot), and the risk would be to your esophagus and to your stomach. It's not going to make it intact all the way to your colon and it's not going to cause what was seen in your scope results unless you were doing something like hydrogen peroxide enemas.

I must have some kind of hypersensitivity issue going on. I wish there was some way to prove it to you. I know if I were to gargle hydrogen peroxide right now, later tonight, I would be in pain and my next bm would have blood in it. The tiniest amount of any chemical affects me. I get the same effect from using Flonase nasal spray, it drips in the back of my throat/post Nadal drip and triggers pain and a bloody bm the next morning, the same thing with non alcohol mouth washes. It even happens when JUST BREATHING IN CHEMICALS, even organic. I’ve been building a slot car race track and have to glue in the metal rails that the cars ride on. I try and work on it ½ hour a day. On the days that I work on the track and use the glue I know for a fact that a couple hours later my throat will hurt and I will have an mild upset stomach. Later that evening and all through the night I will have pain in my lower abdominal area and the following morning I will have blood in my stool. No pain or bleeding on the days that I didn’t have time to work on the track.
I’m guessing that the fumes are attaching to my mucous and somehow reaching my already inflamed colon. The chemical in the glue is Ethyl Cyanoacrylate.
I get the exact same results from just breathing in scented oils and essential oils (made my own plugin refills with them). I love some of the scents, but they eventually cause gastro pain, bleeding and my cat goes into hiding and won’t even come out to eat. I go around and remove them from every room and a week or so later all is good again.
I wasn’t always like this. It just developed over the last couple years.

JML
Posted 5/26/2024 8:08 PM (GMT 0)
Antibiotics story here. When my sister with crohns was living in Austria and she had a flare up, the hospital gave her a course of antibiotics and it fixed her 🤷🏾‍♀️

Btw entyvio is probably the next safest medicine for ibd after the mesalazines....
Posted 5/27/2024 4:43 PM (GMT 0)

poopydoop said...
Antibiotics story here. When my sister with crohns was living in Austria and she had a flare up, the hospital gave her a course of antibiotics and it fixed her 🤷🏾‍♀️


Yes, they certainly made me feel great for a while, but my uc did return a couple days after stopping them. Like (Beave) said, the benifets are only temporary. It makes sense that they would help. Everything that I've read about IBD suggests that it stems from colon bacteria being out of wack so to speak. That's why I think the fecal transplant studies are interesting. Gross, having somone else's stool put inside you, but hey, if it works. https://www.webmd.com/ibd-crohns-disease/ulcerative-colitis/fecal-transplant-what-you-should-know
Did your sister's crohns return as well?

poopydoop said...
Btw entyvio is probably the next safest medicine for ibd after the mesalazines....


There seems to be many different variations of mesalamine. I remember reading on another uc forum back when I was first diagnosed that some people had better results simply by changing brands.
If entyvio is so safe then why don't dr's put everyone on it who has moderate to severe uc instead of even bothering with any other meds?
After reading some of the negative reviews I hope I don't have to chance it, but I'll cross that bridge if I have to.

JML
Posted 5/27/2024 6:57 PM (GMT 0)
Hi JML to answer your question, entyvio doesn't work for everyone.. it's also very expensive.... that's why. Remember also stories and reviews on the internet will be biased by the worst cases...most people who do well on a product don't bother to leave a review and are out getting along with their lives.

Re my sister, she has crohns and needs to be on medication permanently. She currently uses humira. She was in Austria for a year and in that period had one flare up which resolved after a course of antibiotics. She still kept taking her regular meds before, during, and after that flare (can't remember which ones she was on at the time). She was surprised at being treated with antibiotics, but it worked...
Posted 5/28/2024 7:11 AM (GMT 0)
When I suggested a university/academic hospital, I was suggesting one that has a dedicated IBD specialty team. Not all do. Many GIs treat IBD along with countless other gastro diseases, but only a few GIs treat IBD as their primary concern. Some universities have a doctor, or even a team of doctors, that focus specifically on treating IBD patients. That's what I'm recommending you look for.
Posted 5/30/2024 8:01 PM (GMT 0)

poopydoop said...
Hi JML to answer your question, entyvio doesn't work for everyone.. it's also very expensive.... that's why. Remember also stories and reviews on the internet will be biased by the worst cases...most people who do well on a product don't bother to leave a review and are out getting along with their lives.


I thought biologics were pretty much your last hope before needing to have your large colon removed. Where do drs go next if entyvio doesn't work? Is that when they start stacking medications? Other than corticosteroids like prednisone, which you don't want to be on for any longer than you have to, which uc meds are most dangerous?
Sorry for the back to back questions. When I find a new dr and they start rattling off different meds that I can try, I would like to have some info in the back of my mind.

Thanx,
JML
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