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SIBO & Infection Experience (Crohn-like symptoms)

Hey everyone,

Firstly, I’d like to thank everyone contributing to this forum, it’s been a great support. I’ll try to summarise my story here and hope it helps someone else. This is for all of you who are suffering right now and you don’t know what it is and your doctor has no idea either.

I’ve had ankylosing spondylitis for a long time now and I’ve treated it over the years with various medications, but last year as I was coming off a course of biologic drugs, I started having severe reactions to medications: cold hands, red chest, feeling hot, difficulty breathing and severe abdominal spasms.

With each reaction, my symptoms got worse and I started having reactions to foods as well - cold hands, stomach pain, horrible gas with hiccups, throat problems (my throat would swell up - this was later found to be tonsillitis), swallowing problems, diarrhoea and blood in my stool occasionally. A few months later, my eyes started to go very red and painful as well which was made worse by any screens and I went through a period of anxiety about a month after that. Anything that would go through my digestive system would cause all the horrors above to get worse. It got so bad I ended up on a liquid diet for more than a month and I lost 32kg over the next 6 months despite numerous doctors, tests and diagnostic procedures.

I’m pretty well off financially and I’m telling you this to understand one thing: I had access to the very best doctors and medicine money can buy in two developed countries. That didn’t make any bit of a difference, but it was better than the public system which offered me a wait time of "only" 3 months to see a specialist.

I saw 21 doctors over 9 months when I was very sick. I’d say only 5 were actually useful, 5 others believed me, but had no idea what it could be and the rest didn’t believe my symptoms and they recommended therapy or a psychiatrist. Mind you, these people were charging $300+ per 15 min visit to tell me this. This was scary, mainly because these are top people in their respective fields and you see a lot of incompetence. Nonetheless, I wasn’t too flustered. It took 25 doctors to diagnose my ankylosing spondylitis all those years back, so I was used to this process to a degree. I just thought now it would be different. It wasn’t.

Naturally, the first thing they looked for was Crohn’s because it’s related to the same gene as Ankylosing Spondylitis (HLA-B27): endoscopy with biopsies, colonoscopy with biopsies, Capsule endoscopy (for small intestine Crohn’s, which happens in 7% of cases and is not detected by the others), MRI Enterography. All relatively clear - they found mild gastritis and some intraepithelial lymphocytosis in the duoden.

I went on a few different routes to eliminate other stuff - infections, cancers, neurological issues and even got to the allergy department, which was a waste of time (the science is not there yet and the tests are terribly inaccurate at best). Most things came up clear, a few infection antibodies tested positive that I had them at some point, but there was a lot of noise as well. If you scan any human to the level I was investigated, you’ll find problems they never knew they had.

Finally, we went down the infection route one more time. This time, with treatment (Ciprofloxacin). The evidence? Well, it wasn't anything else. It worked…. Somewhat, but not fully. I could eat a little better, I stopped losing weight, my health improved. After another few sets of tests and procedures, they finally suspected SIBO, they gave me a breath test and treatment - antibiotics and probiotics. It’s a nasty condition and it recurs. I still haven’t recovered by a long shot, but it’s going in the right direction.

We really don’t understand SIBO, what causes it and a good chunk of gastro doctors don’t even know it exists. It can affect all areas of your body and give you a bunch of symptoms that have no apparent connection with your gut (including anxiety by the way, which I never experienced in my life). I still believe I had some sort of infection along with it, but I’ll probably never know what.

A few learnings:
  • Trust doctors, but use your own thinking. For complicated cases, you’ll find a lot of complacency, laziness and downright incompetence along the way (even from the best)
  • Keep your own medical file with everything. Especially important when going from doctor to doctor and hospital to hospital - you can ask for copies at each hospital
  • The best way to summarise info for a complex case for a new doctor is as follows (this took me months):
    • Symptoms
    • Treatments and effects on you (if any)
    • Conditions other doctors considered and what tests they did to prove/disprove those
  • Send them the summary above and the reports of the most important scans and blood tests ahead of the consultation. Figure out if they read it when you see them - if they haven’t, you’re wasting your time
  • The way I'm telling my story makes it sound very linear. It wasn't. It was a constant zigzag between departments, doctors and disciplines
  • Keep going! You know if you’re really sick, you can feel something is wrong to your very core, so when they send you to therapy, remind yourself they’re idiots, smile and leave.
  • Some people close to you may not believe you if they haven’t been through a similar experience themselves before
I hope this helps someone else in pain out there. Don’t give up hope and don’t give up trying to figure it out. Everything has a cause and everything has a treatment (even if humanity might not understand it very well yet).
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Thank you for your post. I appreciate your optimistic and pragmatic outlook. I am going through something similar and I needed the reminder that problems have solutions.