I got a whole bunch of autoimmune disease due to chronic infections. Psoriasis, arthritis, thrombotic thrombocytopenic purpura, diabetes, and colitis.
Colitis actually wasn't my main problem, but it has been one of the most persistent, even after I got the other autoimmune stuff under control.
I'm kinda surprised by what I read here. Most people seem to have idiopathic UC, and try to manage it with immunosuppressants. That wasn't an option for me due to the infections, and also cancer risk. Moreover, the cause was not a mystery, and the specific bacteria could be identified with PCR tests.
What I'm wondering though is why do some people say to eat small more frequent meals? This didn't work well for me because then I would have to go all the time. So I would not eat for 12-18 hours, then when I did eat I would have to go a bunch of times over the next few hours, but then it would stop.
What is irritating my colon seems to be toxins from bacteria elsewhere in my body, which end up in the bile and cause diarrhea. I'm not sure why most of the inflammation is limited to the large intestine.
After I eat and get the urgent diarrhea, then I can eat again and have a normal bowel movement. Overnight more toxins build up and the next day I've got diarrhea again.
I really hope this resolves along with the other autoimmune stuff.
Have you been treated to get rid of the bacteria? Do you know what the bacteria is?
As far as eating -- I think when most of us are flaring we eat lightly if we have to leave the house and try to make appointments for later in the day so we don't have to go so much.
67 yo female diagnosed UC 2013. Remission on Entyvio 10/2016-12/2017. Humira didn't do much Nov 2018. Remicade (5 mg 3/2019, 10 mg 8/2019, 6 wks 1/2020, 4 wks 4/2021), REMISSION 12/2021!! Current: Inflectra 10 mg/4 wks 1/2023, Dexilant, cocktail of meds for hypertension
As far as eating -- I think when most of us are flaring we eat lightly if we have to leave the house and try to make appointments for later in the day so we don't have to go so much.
67 yo female diagnosed UC 2013. Remission on Entyvio 10/2016-12/2017. Humira didn't do much Nov 2018. Remicade (5 mg 3/2019, 10 mg 8/2019, 6 wks 1/2020, 4 wks 4/2021), REMISSION 12/2021!! Current: Inflectra 10 mg/4 wks 1/2023, Dexilant, cocktail of meds for hypertension
The infection is borrelia burgdorferi (Lyme disease). I'm rather surprised that this of all things is causing UC, as this bacterium doesn't primarily infect the gut. The infection is in skeletal muscle and cartilage, but it seems to release a toxin that my liver excretes into the bile. When this reaches the large intestine, it triggers inflammation.
The problem is that killing the bacteria with antibiotics often just releases more bacterial toxin and causes more inflammation. I am on another round of antibiotics and have knocked down the bacteria enough that I'm having less pain and diarrhea the last few days, but I'm certainly not done. This makes for very slow progress. I need to get rid of those bacteria, but can't do it too quickly without completely wrecking my gut (and risking a bunch of other autoimmune things).
This explains why it's often so hard to identify the cause of UC, as the infection that's causing it isn't even in the gut. I can eat some non-inflammatory things and clear out my bowels, and get some temporary relief, but after a day or two the inflammation just comes right back as more of the inflammatory stuff comes out via the bile.
I usually skip breakfast and do what I need to do before I eat, because as soon as I eat I won't be able to go anywhere for a few hours, as I'll be too busy doing my other business.
I'm a little surprised at what I read here where people seem to develop UC out of nowhere. I starting getting this only after I already got a lot of other autoimmune stuff. I had some diarrhea for years, but the more specific symptoms such as pain on the left side are more recent.
I'm also wondering what does cause UC in most cases. I'm guessing there can be other bacterial triggers besides borrelia burgdorferi, but that is the main one in my case.
The problem is that killing the bacteria with antibiotics often just releases more bacterial toxin and causes more inflammation. I am on another round of antibiotics and have knocked down the bacteria enough that I'm having less pain and diarrhea the last few days, but I'm certainly not done. This makes for very slow progress. I need to get rid of those bacteria, but can't do it too quickly without completely wrecking my gut (and risking a bunch of other autoimmune things).
This explains why it's often so hard to identify the cause of UC, as the infection that's causing it isn't even in the gut. I can eat some non-inflammatory things and clear out my bowels, and get some temporary relief, but after a day or two the inflammation just comes right back as more of the inflammatory stuff comes out via the bile.
I usually skip breakfast and do what I need to do before I eat, because as soon as I eat I won't be able to go anywhere for a few hours, as I'll be too busy doing my other business.
I'm a little surprised at what I read here where people seem to develop UC out of nowhere. I starting getting this only after I already got a lot of other autoimmune stuff. I had some diarrhea for years, but the more specific symptoms such as pain on the left side are more recent.
I'm also wondering what does cause UC in most cases. I'm guessing there can be other bacterial triggers besides borrelia burgdorferi, but that is the main one in my case.
UC is autoimmune with no exact cause. Did you have a colonoscopy and get an ulcerative colitis diagnosis? UC is a form of colitis, but not all colitis is UC. It sounds like you have an infection that is causing the colitis. UC is not an infection.
Be sure to take probiotics to help feed good bacteria when taking antibiotics. Take them a few hours from each other.
67 yo female diagnosed UC 2013. Remission on Entyvio 10/2016-12/2017. Humira didn't do much Nov 2018. Remicade (5 mg 3/2019, 10 mg 8/2019, 6 wks 1/2020, 4 wks 4/2021), REMISSION 12/2021!! Current: Inflectra 10 mg/4 wks 1/2023, Dexilant, cocktail of meds for hypertension
Be sure to take probiotics to help feed good bacteria when taking antibiotics. Take them a few hours from each other.
67 yo female diagnosed UC 2013. Remission on Entyvio 10/2016-12/2017. Humira didn't do much Nov 2018. Remicade (5 mg 3/2019, 10 mg 8/2019, 6 wks 1/2020, 4 wks 4/2021), REMISSION 12/2021!! Current: Inflectra 10 mg/4 wks 1/2023, Dexilant, cocktail of meds for hypertension
UC is not an infection, but many autoimmune disorders are indirectly triggered by an infection.
A well-known example of this is multiple sclerosis and Epstein-Barr virus. The virus isn't the direct cause of the nerve damage, but the infection leads to an immune response that damages the myelin sheath. One of the ways to treat MS is to use antivirals (eg tenofovir) to suppress the virus, and at least in some patients this stops the autoimmune attack on the nerve cells.
Similarly, I have an infection which is indirectly causing my immune system to attack the inner lining of my large intestine. That infection is not in my gut at all, it is somewhere else, but if I can eliminate that infection then the immune attack on my colon should stop. That's my goal here.
Mostly I got regular colitis, but lately it has been sometimes painful or bloody, so I guess that's ulcerative colitis. I could get a colonoscopy done, but that's no fun and I already know what it's going to find since I have all the symptoms. The main reason to do that would be to get my insurance to approve something like termfya or entyvio.
I don't want to be taking immunosuppressants like those because I have a history of some suspicious skin spots that looked like melanoma. These went away, and the reason for that is that the immune system sees the cancer as foreign and attacks it. If I take too many immunosuppressants then my immune system won't attack the cancer, and then I'll have a much more deadly problem than UC.
I do take hydrocortisone sometimes to manage flares, but I don't want to risk being on immunosuppressants long term.
So I'm going to have to deal with this the same way I dealt with the other autoimmune stuff, and get rid of the infection that is triggering it.
As for probiotics, I have tried that and it didn't seem to make much difference. My immune system is reacting to something very specific here, and it's not the bacteria in my gut.
A well-known example of this is multiple sclerosis and Epstein-Barr virus. The virus isn't the direct cause of the nerve damage, but the infection leads to an immune response that damages the myelin sheath. One of the ways to treat MS is to use antivirals (eg tenofovir) to suppress the virus, and at least in some patients this stops the autoimmune attack on the nerve cells.
Similarly, I have an infection which is indirectly causing my immune system to attack the inner lining of my large intestine. That infection is not in my gut at all, it is somewhere else, but if I can eliminate that infection then the immune attack on my colon should stop. That's my goal here.
Mostly I got regular colitis, but lately it has been sometimes painful or bloody, so I guess that's ulcerative colitis. I could get a colonoscopy done, but that's no fun and I already know what it's going to find since I have all the symptoms. The main reason to do that would be to get my insurance to approve something like termfya or entyvio.
I don't want to be taking immunosuppressants like those because I have a history of some suspicious skin spots that looked like melanoma. These went away, and the reason for that is that the immune system sees the cancer as foreign and attacks it. If I take too many immunosuppressants then my immune system won't attack the cancer, and then I'll have a much more deadly problem than UC.
I do take hydrocortisone sometimes to manage flares, but I don't want to risk being on immunosuppressants long term.
So I'm going to have to deal with this the same way I dealt with the other autoimmune stuff, and get rid of the infection that is triggering it.
As for probiotics, I have tried that and it didn't seem to make much difference. My immune system is reacting to something very specific here, and it's not the bacteria in my gut.
To date, data on Tremfya and Entyvio have shown no increase in risk of melanoma or non-melanoma skin cancers.
If you had "suspicious skin spots that looked like melanoma," and they went away without surgical removal, then they weren't melanomas.
If you had "suspicious skin spots that looked like melanoma," and they went away without surgical removal, then they weren't melanomas.
Bloody D can be caused by multiple things including cancer and c-diff. Did you have stool tests that identified the pathogen?
If you do have UC, you will need a colonoscopy for a definitive diagnosis. Without that, you are just guessing.
Hope you feel better soon!
67 yo female diagnosed UC 2013. Remission on Entyvio 10/2016-12/2017. Humira didn't do much Nov 2018. Remicade (5 mg 3/2019, 10 mg 8/2019, 6 wks 1/2020, 4 wks 4/2021), REMISSION 12/2021!! Current: Inflectra 10 mg/4 wks 1/2023, Dexilant, cocktail of meds for hypertension
If you do have UC, you will need a colonoscopy for a definitive diagnosis. Without that, you are just guessing.
Hope you feel better soon!
67 yo female diagnosed UC 2013. Remission on Entyvio 10/2016-12/2017. Humira didn't do much Nov 2018. Remicade (5 mg 3/2019, 10 mg 8/2019, 6 wks 1/2020, 4 wks 4/2021), REMISSION 12/2021!! Current: Inflectra 10 mg/4 wks 1/2023, Dexilant, cocktail of meds for hypertension
Where in your colon is affected...entire colon including rectum?
MODERATOR - UC FORUM *Heather*
MODERATOR - UC FORUM *Heather*
beave: I had a thread on the melanoma here
https://www.healingwell.com/community/default.aspx?f=30&m=4359926
It's well established that melanoma can be treated with immunotherapy, and a suppressed immune system is a risk for this type of cancer.
If there's no evidence that Tremfya or Entyvio raise the risk of cancer, that's good. It's probably irrelevant to me at this point as it would be difficult to get this treatment anyway. Tremfya costs what, like $14,000 or something ridiculous.
CCinPA: Yes I had a PCR test that identified the borrelia infection. It wasn't a stool sample.
I'm sure we'd all like to know exactly what molecule is triggering the inflammatory response in the colon. It would be useful as a diagnostic test if that were possible to detect.
As for whether it's colitis or ulcerative colitis or whatever other IBD, there's inflammation in my colon and it seems to be autoimmune. Call it what you want. I need it to go away.
My real question here was what I can do to deal with this until I can get rid of the source of the problem. Unfortunately the treatment options seem to be rather limited. More corticosteroids aren't great, and something like Tremfya or Entyvio isn't feasible either.
quincy: Mostly just pain in my lower abdomen, sometimes center and sometimes left side. Rectum is occasionally bloody when I poop.
https://www.healingwell.com/community/default.aspx?f=30&m=4359926
It's well established that melanoma can be treated with immunotherapy, and a suppressed immune system is a risk for this type of cancer.
If there's no evidence that Tremfya or Entyvio raise the risk of cancer, that's good. It's probably irrelevant to me at this point as it would be difficult to get this treatment anyway. Tremfya costs what, like $14,000 or something ridiculous.
CCinPA: Yes I had a PCR test that identified the borrelia infection. It wasn't a stool sample.
I'm sure we'd all like to know exactly what molecule is triggering the inflammatory response in the colon. It would be useful as a diagnostic test if that were possible to detect.
As for whether it's colitis or ulcerative colitis or whatever other IBD, there's inflammation in my colon and it seems to be autoimmune. Call it what you want. I need it to go away.
My real question here was what I can do to deal with this until I can get rid of the source of the problem. Unfortunately the treatment options seem to be rather limited. More corticosteroids aren't great, and something like Tremfya or Entyvio isn't feasible either.
quincy: Mostly just pain in my lower abdomen, sometimes center and sometimes left side. Rectum is occasionally bloody when I poop.
I suggest you get some stool tests to check for bacteria/parasites and also check the inflammation markers. Since you have been on antibiotics you could be at higher risk for c-diff.
If you actually have IBD (UC or Crohns) you really should get scoped to determine the extent of the disease (or even if you do have it). Some people with IBD can treat without meds, but most here use meds to get the disease to remission so that life can be lived as a normal person.
Mesalamine is often the first treatment option for UC. It works for some and not for others. It's an oral med with the least side effects and doesn't mess with our immune system. None of the meds for UC are cheap though -- even mesalamine.
67 yo female diagnosed UC 2013. Remission on Entyvio 10/2016-12/2017. Humira didn't do much Nov 2018. Remicade (5 mg 3/2019, 10 mg 8/2019, 6 wks 1/2020, 4 wks 4/2021), REMISSION 12/2021!! Current: Inflectra 10 mg/4 wks 1/2023, Dexilant, cocktail of meds for hypertension
If you actually have IBD (UC or Crohns) you really should get scoped to determine the extent of the disease (or even if you do have it). Some people with IBD can treat without meds, but most here use meds to get the disease to remission so that life can be lived as a normal person.
Mesalamine is often the first treatment option for UC. It works for some and not for others. It's an oral med with the least side effects and doesn't mess with our immune system. None of the meds for UC are cheap though -- even mesalamine.
67 yo female diagnosed UC 2013. Remission on Entyvio 10/2016-12/2017. Humira didn't do much Nov 2018. Remicade (5 mg 3/2019, 10 mg 8/2019, 6 wks 1/2020, 4 wks 4/2021), REMISSION 12/2021!! Current: Inflectra 10 mg/4 wks 1/2023, Dexilant, cocktail of meds for hypertension
Quin... my suggestion is to try mesalamine oral and rectal if you have inflammation in the rectum. it's a topical medication, is not immunosuppressant. I agree to know what areas of your colon that are affected.
q
MODERATOR - UC FORUM *Heather*
q
MODERATOR - UC FORUM *Heather*
I initially suspected c.diff because of how awful this smelled. However it doesn't seem to be c.diff.
The antibiotics seem to have worked since I had almost normal poop today, but I don't know how long this will last.
The basic problem with c.diff is if you take antibiotics that it is resistant to, and this kills other bacteria but leaves the c.diff.
I will try mesalamine. Suppositories might not work too well since as soon as I eat, stuff is exploding out my butt. Oral may be an option though.
The weird part is how the inflammatory stuff can remain in my small intestine without causing a reaction, but once I eat, it moves into the large intestine and then the problems start.
The antibiotics seem to have worked since I had almost normal poop today, but I don't know how long this will last.
The basic problem with c.diff is if you take antibiotics that it is resistant to, and this kills other bacteria but leaves the c.diff.
I will try mesalamine. Suppositories might not work too well since as soon as I eat, stuff is exploding out my butt. Oral may be an option though.
The weird part is how the inflammatory stuff can remain in my small intestine without causing a reaction, but once I eat, it moves into the large intestine and then the problems start.
I finally got some mesalamine (oral, not suppositories) and it seems to reduce the diarrhea. I actually felt slightly constipated today, which hasn’t happened in a long time. Usually stuff is exploding out my butt right after I eat.
I’m a bit surprised, as I only took 400 mg, and I’ve heard of people taking a lot more. Hopefully the constipation doesn’t become a problem.
I am still trying to get rid of the borrelia infection that is apparently causing all this. It is a frustratingly slow process. When I successfully kill the bacteria with antibiotics, the debris from the dead bacteria end up in the bile and irritate my gut.
Borrelia smells bad, and in recent weeks I have noticed less smell, so hopefully that’s progress. It is still irritating my gut tho.