M.D. as the patient

[baistuff]

So here is the cliff notes version of my history.

Perfect Gi system for 30 years plus. A few months left of residency developed a nasty bronchitis that did not clear up. After 2 weeks of it took a Zpack. Between the Zpack, working 36 hours shifts + in the ICU, being a new dad, developed acute diarrhea out of the blue (frequent, no blood, not much pain.) After 1 week of symptoms, negative cultures, got scoped, patchy colitis. Normal terminal ileum. Grossly looked like CD, histologically more like UC. Officially called IC. Was living and training in the NYC area. Had several opinions from the biggest names in the IBD world.

Went on 5ASA- made everything MUCH worse. Then did 2 weeks of flagyl, which helped, followed by VSL 3- helped a lot. Got scoped a year later feeling better just to take a look- grossly normal. Slides showed some "post inflammatory changes" but nothing major, nothing acute. GI said, stop everything and see what happens.

The next 5 years I would describe best as off and on IBS like symptoms. Some bloating, gas, soft stool, but nothing really bad at all. No meds. 5 years later got scoped again- Normal. For the past 5 years, overall fine. again, some IBS like symptoms, but no meds, no diet problems, overall doing fine.

Last fall, caught strep from kids. had to take antibiotics, took VSL3 with it, but no matter- several weeks later developed urgency, very loose stool, some wt loss. Was time for a 5 year follow up scope anyway... Rt sided colitis- interestingly, the slides were again more consistent with UC, but of course with a normal left side, by definition they call it crohn's.

Tried 5ASA again- big mistake. made things much worse. Again. Tried VSL3- helped but not as much as 10 years ago. Tried Rifaximin- neither here nor there. Did a course of Uceris- Significant improvement. before finishing it, had long talk with my GI. As a doc, and in a large inner city hospital a lot, I did NOT want any biologic or immune modulator- would be a set up to catch a nasty infection. Instead I was able to enroll in a clinical trial for fecal transplant- which we thought would be good b/c of my issues clearly being tied to dysbiosis.

Fecal transplant went well. I can't give too many details because the trial is still ongoing. But suffice it to say, I really don't have too many complaints.

But then again, I've never had it bad to begin with (knock on colon) so it's hard to draw too many conclusions.

M.D.

 

[baistuff]

So here is the cliff notes version of my history.

Perfect Gi system for 30 years plus. A few months left of residency developed a nasty bronchitis that did not clear up. After 2 weeks of it took a Zpack. Between the Zpack, working 36 hours shifts + in the ICU, being a new dad, developed acute diarrhea out of the blue (frequent, no blood, not much pain.) After 1 week of symptoms, negative cultures, got scoped, patchy colitis. Normal terminal ileum. Grossly looked like CD, histologically more like UC. Officially called IC. Was living and training in the NYC area. Had several opinions from the biggest names in the IBD world.

Went on 5ASA- made everything MUCH worse. Then did 2 weeks of flagyl, which helped, followed by VSL 3- helped a lot. Got scoped a year later feeling better just to take a look- grossly normal. Slides showed some "post inflammatory changes" but nothing major, nothing acute. GI said, stop everything and see what happens.

The next 5 years I would describe best as off and on IBS like symptoms. Some bloating, gas, soft stool, but nothing really bad at all. No meds. 5 years later got scoped again- Normal. For the past 5 years, overall fine. again, some IBS like symptoms, but no meds, no diet problems, overall doing fine.

Last fall, caught strep from kids. had to take antibiotics, took VSL3 with it, but no matter- several weeks later developed urgency, very loose stool, some wt loss. Was time for a 5 year follow up scope anyway... Rt sided colitis- interestingly, the slides were again more consistent with UC, but of course with a normal left side, by definition they call it crohn's.

Tried 5ASA again- big mistake. made things much worse. Again. Tried VSL3- helped but not as much as 10 years ago. Tried Rifaximin- neither here nor there. Did a course of Uceris- Significant improvement. before finishing it, had long talk with my GI. As a doc, and in a large inner city hospital a lot, I did NOT want any biologic or immune modulator- would be a set up to catch a nasty infection. Instead I was able to enroll in a clinical trial for fecal transplant- which we thought would be good b/c of my issues clearly being tied to dysbiosis.

Fecal transplant went well. I can't give too many details because the trial is still ongoing. But suffice it to say, I really don't have too many complaints.

But then again, I've never had it bad to begin with (knock on colon) so it's hard to draw too many conclusions.

M.D.

Will post more on FMT soon.

 

[D Bergy]

Hello.

I have connected bouts of pneumonia or pre pneumonia congestion with the onset of the disease. Z paks will help temporarily, but mycoplasma becomes resistant to it pretty quickly, and it comes back in a few months.

Find a way to better treat and reduce the mycoplasma pneumonia and see what happens. It is not all of the Crohns problem, but it was a large part of mine. I believe the part that caused fistulas.

Best regards.

Dan

 

[tzvia]

Interesting story, MD. Your symptoms and relief seem to be related to things that have to do with bacteria, ie antibiotics, vsl3, and fecal transplant. What are you thoughts hit bacteria and it's role in crohns vs autoimmune theory? Or can the two be part of the same theory?

 

[baistuff]

Interesting story, MD. Your symptoms and relief seem to be related to things that have to do with bacteria, ie antibiotics, vsl3, and fecal transplant. What are you thoughts hit bacteria and it's role in crohns vs autoimmune theory? Or can the two be part of the same theory?

If I knew the answer, I'd be holding a prize with the name Nobel on it.

I think everyone agrees that there is interplay between the immune system and ecosystem in the gut. Which is the chicken and egg here? Hard to know. I really think every case of IBD is different. Why do some get small bowel involvement and others not? If it's PURELY bacterial, how do some get crohn's of the stomach or esophagus? If it's PURELY bacterial why do some get uveitis, pyoderma or other extraintestinal complications?

There is obviously a host defect that with the right signal or trigger (or multiple ones) cause an inflammatory cascade in the GI tract. Depending on age, other factors (genetics, medications, and who knows) probably all factor in disease severity, location, extent and ultimately prognosis.

I don't think IBD is all that different than other diseases that have an inflammatory, immune and enviormental components (asthma comes to mind.)
Why does one person run in cold air and get severe bronchospasm, yet I can breathe in dust and have no issues? Why do some asthmatics get a touch of wheeze and others need intubation if they walk near pollen?

This is why things like FMT, SCD and all the meds will cause amazing results in some, but worsen others. It's simply impossible to tell.

I laugh when I hear people talk about curing certain diseases with such various manifestations. My approach is find what may be your trigger, your agitator and what gives you relief. Run with them.

In my case dysbiosis was prominent. No GI problems forever, then 1 antibiotic and boom. That's why FMT was an attractive option for me. But 1 FMT, though helpful, cannot correct my host defect. It likely will recur. How and when might be due to other illness, age, stress, or who knows? As a 40 year old adult living in the Northeast, my ecosystem, environment at home and at work is not the same as a 7 year old with crohns in California. Once we start looking upon this disease with an individual flavor we might get somewhere.

I have a lot to say about FMT, but alas, I am behind on pateints.