Bacteria ?

Welcome to the forum.

Keep taking your medications. Most of us must take daily medications in order to control our UC. Very few can stop their meds successfully. There's nothing wrong with taking pentasa-rectal every day for multiple decades. Some of us have been taking our medications for 20+ years. They're 90% topical medications, well-tolerated by most without side effects.

Why are you attempting to stop your medications?

Somebody said...
Welcome to the forum.

Keep taking your medications. Most of us must take daily medications in order to control our UC. Very few can stop their meds successfully. There's nothing wrong with taking pentasa-rectal every day for multiple decades. Some of us have been taking our medications for 20+ years. They're 90% topical medications, well-tolerated by most without side effects.

Why are you attempting to stop your medications?

Hi, I'am not.
But why are you thinking this? Some patients like me are trying to investigate as much as possible to find why they have a disease. I think this is a really positive attitude for those people, we are programmed to do so.

While some people are ok with relying on meds without bothering too much, and that's fine, some people are trying to investigate more with the goal to become perfectly healthy again without any med dependency. It gives a positive momentum against diseases and it is a new era where patients are more and more listened. When this momentum points strongly toward a direction, even researchers are impacted because it gives them new ideas on where to start looking for the solution.

Somebody said...
U.C. is chronic, so having to control it with meds is normal. That's the beauty of mesalamine is that it can control many mild to moderate cases with minimal side effects.

Did you do a stool test as part of your original diagnostic testing? If not you should inquire about that.

The cause(s) of U.C. is/are not completely understood unfortunately. There may be more than one. It's a mix of genetics and environmental factors, gut flora being a big one. Most people with U.C. have fewer bacteria that are considered beneficial than people who don't have U.C. The thing is, is it because our immune systems misidentify healthy bacteria as pathogens and kill them off, or is the imbalance actually causing the inflammation?

No I didn't, but do you have any recommendations ? What should I test ? Which bacteria ... ?
Thank you

Post Edited (SolveITF) : 5/7/2018 8:27:16 AM (GMT-6)

it is also important to consider etiology as distinct from treatment.

Your hope that there is an infection, persisting all this time, that if treated will cure you. It is possible, but so is winning the lottery.

the best way to pursue your idea would be to get some type of FMT from a private clinic where it is not a medical procedure. Medically, it is only available for c-diff treatment. IF there is a "bad actor" in your gut, transplanting a bacterial ecosystem from a healthy donor can remedy the situation. Possibly repeat FMT may be necessary.

you can also have a genome study done to see how many of the 100s of associated loci you have.

to a varying degree in individual cases, genetic susceptibility of the host tissue, susceptibility of the ecosystem of your gut microbes, some triggering event, and other conditions in the mucosal layer lining the colon all come together in a perfect storm.

but be cautious. what unlocks the door does not always lock it. Even if you had an infection that changed the ecosystem of your gut microbes, or which caused a leaky-gut situation, that agent could be long gone. Other therapies (only tangentially related to the straw that broke the camel's back) could be needed to control or produce remission. Many may consider sustained remission a "cure", and I will not debate semantics - but once the immune system has "learned" something, we do not currently have good ways to edit out that learning. In this sense autoimmune (either antigens to host tissue, or to needed gut-bacteria) is not currently curable.

good luck

Post Edited (DBwithUC) : 5/7/2018 2:31:21 PM (GMT-6)

Much like Pandora's Box opening, there's no easily undoing UC. Yes, our bacteria makeup is weird but is that a cause or a side effect (what came first: the chicken or the egg)? I'd wager the bacteria weirdness is a symptom. Others disagree, it's just an opinion and no proof one is right or wrong. Test it as DB says if that is your belief/opinion.


Read about epigentics, we are born with certain genetic code that might have susceptibilities/deficiencies that may/may-not be triggered based on environmental exposure later in life (exposure to pathogens, stress, pollution, diet whatever). Most of us got UC later in life, not at birth. UC tends to run in families, especially to children where both of their parents had an IBD, and especially among direct siblings of an IBD patient which is suggestive of at least some genetic relationship. Not everyone gets it among siblings, so it's not guaranteed.

Post Edited (iPoop) : 5/7/2018 11:00:56 AM (GMT-6)

You might've already had tests for infectious causes (call/email your doctor and ask), but if not, absolutely get yourself tested both initially and again when you flare. Any gasteroenteroligist worth his/her degree should be doing this. Good to verify though!

A typical UC diagnosis involves having:

1.) A stool test negative for pathogenic causes: Campylobacter, Clostridium difficile (CDIFF), Cytomegalovirus, E Coli, Helicobacter pylori, Salmonella, and Shigella. Your doctor will get a lab results report for this test. Get a copy.

2.) A colonoscopy. Your doctor will create a colonoscopy report for this test. Get a copy.

3.) Biopsy report from that colonoscopy. Biopsies from the colonoscopy are sent out to a patholigist to analyze what is seen. Your doctor will get a biopsy report for this. Get a copy.

Misdiagnosis is rare, you most likely have a UC. Certainly verify everything was done by the book, and all three of the above were done. Each of those reports has clues to what was seen, and is typical for a UC case. If you can copy/paste the medical jargon we can help you understand it (just exclude your name and any personal ID stuff). If you have chronic changes than it is without a doubt a UC/IBD, as a one-time infection does NOT leave permanent architectural changes to your cells as IBD/UC does.

The inflammation you have is within your rectum. The rest of your intestine looks 100% normal. UC always starts at the rectum. The word "chronic" is mentioned multiple times so it is likely an IBD, and a UC. A loss of vascular pattern is considered to be a chronic change and you have that (most of us with UC have this).

Red-coloration (erythematous) is mentioned several times, which is suggestive of very mild inflammation (or at least an irritation). Erosion is mentioned which is suggestive of inflammation. Congestion is mentioned which is suggestive of irritation. Immune cells were found which are typical of UC or an infection.

Overall sounds like very mild inflammation from UC-protitis. I would expect ulcerations with UC (none were found). I would expect Crypt Abscesses with UC (none were found). Maybe only found with more severe inflammation than yours.

Colonoscopy Report
Your ileum is normal.
Cecum is normal.

Rectum:
Red-colored (erythematous) is suggestive of inflammation or at least irritation. Has erosion of the surface mucus layer which is suggestive of inflammation. Has loss of vascular pattern which is a chronic architectural change (means an IBD like UC). No ulceration. It's a proctitis (rectal inflammation)

Biopsy 1 ileum
Normal.

Biopsy 2

Found mucosa architecture changes (chronic).

Red (edematous). The appearance is like a sun-burn, red coloration from blood in an irritated area. This can be from the colonoscopy prep. This can be from very mild inflammation. Biopsies determine whether edematous is from inflammation or from prep. Biopsies make it sound like inflammation in your case.

Congestive (like a congested nose in a cold/flu), suggestive of irritation.

An infiltrate of immune cells: lymphocytes and neutrophils (common with UC). Suggestive of inflammation.

No Crypt Abscesses (Commonly UC has Crypt Abscesses).

No granulomas (NOT crohn's disease which has granulomas).

Chronically, moderately active inflammation.

No cancer.

Post Edited (iPoop) : 5/7/2018 2:51:55 PM (GMT-6)

And you can take the reports for a second opinion at a second gasteroenteroligist. The colonoscopy included a video, that they can likely forward to a second gasteroentolgist.

Get the stool test.

Actually I just remembered that my GI doc says the lab won't do a stool test IF it is normally formed. Perhaps that is the case for you since you only had blood with normal poop. You have to have diarrhea or loose stool before they will test it.

Get the stool test, why not. You posted all the things they should check for: ''Possible problem bacteria: Campylobacter, Clostridium difficile (CDIFF), Cytomegalovirus, E Coli, Helicobacter pylori, Salmonella, and Shigella.''

Any good doctor would have ruled out all of that to begin with before you were first diagnosed. Also, has your doctor ever thought maybe your issue is hemorrhoids?

Regarding a previous comment, my doctor will test my poop, regardless of how formed it is.

As expected, nothing was found.