Why is my child responding so well to antiobiotics but not immunosuppressors?

[Malgrave]

This is a question that I have been wondering many times this year, when my little son has been hospitalised due to bad flare and severe anal bleeding. He has ileostomy so normally what should come out of his bottom should be only some mucus. But when the bleeding gets very bad we know that we have to leave for hospital This has happened 5 times since April.

He has been treated with Remicade and Imuran for the last 7 months but he did not respond to them. The inflammation levels have been high every time when we arrive to the hospital. During his hospitalisation he is given antiobiotics intravenously (e.g. Tazocen and Flagyl) for a week or so and as a result, the inflammation levels get normal by the time we go home. Also the bleeding disappears almost completely. The possibility of diversion collitis has been excluded.

What can explain all this? Why is he responsing so well to antibiotics? We have not got a proper explanation from his doctors. Or is this just normal to all Crohn's patients?

 

[kiny]

think it's more "why would someone with crohn not respond to antibiotics?"

the place where crohn is is in places with high bacterial load, both from pathogens and commensal, terminal ileum and colon

antibiotics lessen bacterial load which shows improved healing, the cleaner they get the ulcers in mice the faster they heal, it lessens antigen response to commensal and saccharomyces

I have no idea why antibiotics for crohn have been pushed aside by some doctors, I'm going to guess money since most are generic by now.

The idea that crohn is one single disease is also too far fetched currently, there are many immunoglobulin responses in the blood from people with crohn's disease, some are reacting to saccharomyces, others to invasive E coli, others to MAP, crohn isn't one single disease, immune responses differ greatly from one person to the next.

Even if all of the recent studies would be incorrect, and the immune response isn't directed at a single pathogen or commesal, simply decreasing bacterial load will improve healing since you get less bacteria penetrating the gut wall.

 

[kiny]

what they also learnt about the immune system is that T cells regulate each other, a very very small fraction of T cells are involved in crohn in upregulating inflammation, other T cells are able to mitigate this upregulation

immune modulaters currently indiscriminately lower T cell response, which is why they have side effects for some people, drugs that upregulate T cell response, the immune system, help instead of worsen crohn, because T cells keep each other in check

 

[karj]

hi malgrave, that sucks about your son. I know what bleeding all the time is like because it is what i go through on a daily basis, so i can only imagine what it can be like to watch your child go through it. it sounds like they need something to keep the disease under control long term, as the antibiotics are only short term solutions. I myself have tried prednisolone, flagyl, and 6-mp to no effect. The 6-mp did improve crohn's symptoms but the side effects were worse for me so had to stop taking them. so I am getting my first remicade infusion on monday as this is the only drug that i have not tried. but maybe your son might respond better to steroids such as prednisolone, i know the side effects are bad but it might suit him better since imuran or remicade have not worked. also i know people that didn't do well on imuran but did well on 6-mp, or that didn't do well on remicade but are currently doing well on humira so maybe that might work?

 

[steve55]

Please excuse my ignorance, are there plans to reconnect the colon at a later date? Was he on Modulen exclusively and failed to go into remission? Where is the crohn's located?

I think his response to antibiotics tells us that his gut flora is out of whack. I think you should ask his doctors to consider a fecal transplant and perhaps that will correct the flora. I know when they reconnect the colon in patients, this is something they typically have to do anyways to recolonize the colon flora. But this can also be done in the intestines.

 

[Aussie]

Hi Malgrave, I was wondering where in the bowel is your son's Crohns? Small bowel, large bowel and or perianal?

There are a number of reasons why antibiotics help in Crohns.

1. Underlying infectious colitis ,ie. he has picked up C diff, which can be difficult to eradiate and can come back repeatedly after treatment.

2. Diversion colitis - I know you said that has been excluded, but how? Even good pathologists will struggle to differentiate between active Crohns and diversion colitis.

3. Active perianal Crohns will respond to antibiotics, although tends to recur once the antibiotics are stopped.

4. Perhaps the perforation from the colonoscopy is inadequately treated and occasionally flares when the antibiotics are stopped.

Usually you would expect Crohns to settle once the faecal stream is diverted (with the ileostomy).

Best wishes.

 

[Malgrave]

Thank you very much for your great replies. They certainly gave me a lot to think about!

The plan is to close the ileostomy as soon as his GI tract gets better (unfortunately we have waited for two years now and it seems that it is getting worse instead). Based on the colonoscopy 2 years ago we were explained that the disease is both in the large and small bowel. Granulomas were found in small bowel and stomach. The two colonoscopies performed this summer show that the disease is only in large bowel and there are no granulomas. Can they disappear just like that? The latest two colonoscopies also showed that it is not the diversion collitis. I asked his Gastroenterologist if she was 100% sure about that (I have also heard that it is almost impossible to make the difference with the CD and diversion collitis in these circumstances) but she said, yes, it is certain. For me my son's symptoms look like classical symptoms of diversion collitis but I am not of course an expert here: anal bleeding, lot of mucus, bleeding started exactly one year after the ileostomy was put on place,.... And why the disease in large bowel gets worse and small bowel and stomach are surprisingly fine?

As parents we were of course shocked due to perforation and ileostomy but we remember when the doctors tried to comfort us by saying that the ileostomy will in fact allow his large bowel to rest and heal and in fact the ileostomy is a very good thing for him. Now thinking back after two years, we can only say that things have got only worse (although I must admit that my son was doing quite OK after 6 months of the ilostomy, but little by little his inflammation levels started to raise and finally bleeding started).

Finally thanks for the suggestions about C diff and fecal transplant. I will defineteley raise these issues next time when we meet his doctor!

 

[karj]

i originally had the disease in the small bowel and illeum and then it moved to the large colon and small bowel is fine. i would reallly love to know how that happens too!! have they looked into candida? i never heard of it before until jandeacs suggested that i might have it. but like i said don't know much about it.

 

[Malgrave]

Thanks a lot karj!
No, candida has never been tested, as far as I know. And no C diff either. I will ask about these first thing. Do you know how these are tested: from blood or stools?

 

[kiny]

should test for saccharomyces lgG and for transglutamine IgA and gliadine IgA and IgG to rule out yeast intolerances, any doctor in Belgium can do these tests, they are extremely simple ELISA tests, I live there, but for some reason hospitals often simply neglect these tests. I am still getting tested for other immunoglobulin reactions long after I was diagnosed with crohn, since they never did those tests in the hospital.

saccharomyces test is called ASCA, transglutamine should be below 1 U/mL and gliadine should be below 7 U/mL

 

[karj]

Thanks a lot karj!
No, candida has never been tested, as far as I know. And no C diff either. I will ask about these first thing. Do you know how these are tested: from blood or stools?

don't know sorry :shifty: but i have my first remicade infusion tomorrow so i was planning to ask them about it so will let you know what they say but i think kiny chipped in there

 

[Malgrave]

Thanks a lot Kiny and Karj!
Good luck Karj for your first infusion! I wish that it will work for you:thumleft:

 

[kiny]

btw, did they ever tell you why they gave him azocen and Flagyl, I don't know what clinic you go to but the "big ones" linked to the universities will never give antibiotics to treat crohn, their policy is that they only give antibiotics when there is the possibility of further infection because of a fistula or after surgery. Janssens pharmaceutica and UCB are right next door to the hospitals, you don't have to think very long to know why they are big humira and remicade fans, companies that make them are 2 blocks away from them.