SIBO and crohn's -where do you start?

[paddywack]

First, I didn't think SIBO went under EIM because it's intestinal, so I apologize if this is the wrong spot to post it.
I looked for other threads but I didn't see anything very recent.
And I didn't want to crash the parents forum, because while I am a parent, my kids don't have IBD.

I mentioned in another post that my GI thinks SIBO is a possibility. I had an MRE that showed no inflammation or active disease (yay).
He hasn't ordered any testing specifically for SIBO, and my insurance company won't pay for rifaximin unless the doc says I have "IBS with diarrhea".

Do I even WANT rifaximin?

I followed a low fodmap diet 4 years ago, and some people follow LF to treat SIBO, which I why I've heard of it.

But I haven't found much online that is based clearly on evidence.

If anyone has experience with crohn's and SIBO, I'd be interested to know how you were dx'd, what the treatment was, did it work? Etc.

I'm unfamiliar with the terrain and it's overwhelming.

 

[my little penguin]

Did they test for sibo ?
When was last scopes ?
Have you tried formula only to see if that helps ?

symptoms just pain/cramping ? Or diarrhea/constipation ?
Any joint or eye issues ? Pain or stiffness ?

 

[paddywack]

Did they test for sibo ?
When was last scopes ?
Have you tried formula only to see if that helps ?

symptoms just pain/cramping ? Or diarrhea/constipation ?
Any joint or eye issues ? Pain or stiffness ?

I have not had a test for SIBO.

I was diagnosed with esophageal lichen planus 10 years ago because I was choking on everything.

I had an EGD to dilate the strictures in my esophagus, it required a lot of follow up and for a while I was having endoscopy dilation every few weeks or months.

I had other issues. Chronic anemia, malnutrition, etc.

My GI suspected crohn's, but didn't confirm the diagnosis until they did a pill cam endoscopy.

This latest round of symptoms is primarily nausea.
I asked for a refill on zofran and he gave it to me, but he asked me to follow up if it continued.

Nausea hasn't stopped, he ordered a fecal calprotectin and the results were completely normal.
He ordered labs, too. Everything was normal. A lot of my normal results are right at the edge of high or low, except for lymph absolute, which is always a little high.

Doc ordered an MRE and found no active disease or inflammation.
He said a gallstone is again noted and larger in size but not necessarily causing the symptoms. Given your medical history, recommended starting treatment with rifaximin for SIBO.

If symptoms persist despite treatment for presumed SIBO, recommend a HIDA scan to assess gallbladder function.

My father had crohn's and PSC. He had a liver transplant in his late 40s.

I've had HIDA scans before and they didn't find anything.

I sent him a message last week with a lot of questions. He answered a couple of the questions (I offered to make an appointment because it was a long list) but suggested I make an office appointment or schedule a breath test.

I called the clinic yesterday to make an appointment and they said he has no availability.

So I sent another message to say that I tried to schedule but couldn't and maybe I could schedule a breath test before taking antibiotics.

Haven't heard back yet.

 

[paddywack]

I have not tried formula only. That's one of the questions I asked about in my message to the doc.

I have fibromyalgia, so joint pain, yes.
But different pain? No, nothing significantly new or different. I'm exhausted, as usual.

I bounce between constipation and diarrhea. I've been taking miralax daily when I notice things slowing down per doc's instructions.

I usually have abdominal pain and diarrhea when I get my period.

I'm also trying to lose weight, or at least to make healthier choices in what I eat.
I've been cutting way back on sugar, trying to quit eating it.

 

[my little penguin]

Things that stand out
The esophagus problems - did they do a lot of biopsies ?- eosinophilic eosphagitis (EoE) can cause you to choke etc… due to reaction of eosinophils to food proteins - causes inflammation and other issues
It Can effect the esophagus/stomach or lower intestine … - link between that and crohns
Some develop both
Chicken egg sorta thing

arthralgia and myalgia (joint and muscle pain ) are actually EIM of crohns - see a rheumatologist- they can tell if it’s related to crohns or independent of crohns flares.

formula only (if amino acid based ) actually fixes
EoE ,crohns and multiple other Gi issues similar to steriods
It does not fix joint issues though

can you get a second opinion ??
Highly recommend a fresh set of eyes
They will review all your records from front to back


Even if you cant see the doc in the office most still have video visits which they don’t advertise and you can at least talk through things
Worth asking

 

[my little penguin]

https://apfed.org/about-ead/egids/eoe/

 

[my little penguin]

https://apfed.org/about-ead/what-is-an-eosinophil-associated-disease/

 

[my little penguin]

https://spondylitis.org/about-spondylitis/types-of-spondylitis/enteropathic-arthritis/

 

[paddywack]

Things that stand out
The esophagus problems - did they do a lot of biopsies ?- eosinophilic eosphagitis (EoE) can cause you to choke etc… due to reaction of eosinophils to food proteins - causes inflammation and other issues
It Can effect the esophagus/stomach or lower intestine … - link between that and crohns
Some develop both
Chicken egg sorta thing

arthralgia and myalgia (joint and muscle pain ) are actually EIM of crohns - see a rheumatologist- they can tell if it’s related to crohns or independent of crohns flares.

formula only (if amino acid based ) actually fixes
EoE ,crohns and multiple other Gi issues similar to steriods
It does not fix joint issues though

can you get a second opinion ??
Highly recommend a fresh set of eyes
They will review all your records from front to back


Even if you cant see the doc in the office most still have video visits which they don’t advertise and you can at least talk through things
Worth asking

It's definitely lichen planus. It was diagnosed separately by 2 different docs, years apart. Tons of biopsies.

The first diagnosis of LP was at least 16 years ago. And it stumped them for a while. The GI actually thought it was EoE until the biopsies came back.

I've seen a rheumatologist twice. He ran the full gamut of lab tests.
That was probably 5 or 6 years ago, and then again 2-3 years ago.

There was a positive antibody result, but it was just one, and the rheumatologist said it was non-specific and there were frequent false positives.
He checked pressure points and checked joints for movement and pain , etc.

He said that RA or any Inflammatory condition in the joints is usually symmetrical.
My joint pain is often one-sided and moves about vs staying always in the same joint.

He concluded that it's fibromyalgia, and the 2nd visit he emphasized that fibromyalgia is real.

Re the GI clinic:
The scheduler was checking for phone visits, too. She asked if I wanted to see a different provider. I hate starting over with new providers.

My current GI is typically detailed and deliberate. I don't know where the jump to SIBO came in. Maybe he's working a process of elimination that I'm unaware of?

I've been on Remicade/inflectra for about 5 years. I've had medication and antibody levels checked several times and they've been normal every time, so far.

 

[my little penguin]

Joint pain /muscle pain arthritis is NOT. Symmetrical in arthritis associated with inflammatory bowel disease
It is also negative for blood markers
It’s known as spondyloarthritis
Completely different than rheumatoid arthritis
It can come and go
It can also move from joint to joint
Extremely common in ibd associated arthritis
It’s the black sheep of arthritis
Some docs know it as ERA
You need a rheumatologist who has past experiences with SpA or ERA
My kiddo was dx with juvenile ERa or JSpA
6-7 years ago

glad they confirmed the LP

 

[my little penguin]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3261248/

 

[my little penguin]

Tagging @Maya142

 

[paddywack]

Joint pain /muscle pain arthritis is NOT. Symmetrical in arthritis associated with inflammatory bowel disease
It is also negative for blood markers
It’s known as spondyloarthritis
Completely different than rheumatoid arthritis
It can come and go
It can also move from joint to joint
Extremely common in ibd associated arthritis
It’s the black sheep of arthritis
Some docs know it as ERA
You need a rheumatologist who has past experiences with SpA or ERA
My kiddo was dx with juvenile ERa or JSpA
6-7 years ago

glad they confirmed the LP

Thank you for the information and the link.

If it's Inflammatory arthritis, how do they treat it?

The rheumatologist I saw mentioned low dose naltrexone, but I don't want to take NSAIDs for obvious reasons.

He mentioned something else for the pain.. gabapentin.
I have chronic major depression, that's been diagnosed for 20 years. I've had it much longer. I'm not going to be able to come off the antidepressant meds.
I've tried it a couple of times and come to the conclusion that it is physiological and I can't regulate brain chemicals through will power.

I'm on inflectra every 8 weeks.
I take citalopram and buproprion daily.
I take omeprazole daily for reflux.

They have FINALLY figured out how to treat the LP. I have a prescription for budesonide in an oral suspension, thick like a gel.
I swallow that once per day and don't eat or drink for 30 minutes.
Just this year I was able to go 6 months between dilations. That's amazing.

I get migraines and I'm getting them more frequently the past year or two.
I have a triptan for that, but since it acts on neurotransmitters and I take SSRIs, I don't take it unless I'm out of options.
Migraines last around 12 hours for me, so I think they're mild compared to what some people live with.

At a certain point, I can't keep throwing meds at things.

My daughter was diagnosed with PCOS in the past year, so we're making healthier changes as a family.
Less sugar, whole grains, etc.

The rheumatologist suggested Tai chi, yoga, and water therapy.

It sounds like there's not enough here to narrow it down to SIBO.

The doctor first put me on azathioprine for crohn's. 3 weeks later I was in the hospital with pancreatitis.
I could FEEL it for 6 days before the lab levels finally showed it.
I had been to urgent care and the ER previously that week.

It took 3 months for my liver numbers to get back to normal. At the time the dysphagia was so bad I couldn't take pills without crushing them, so we tried Methotrexate injected weekly.
It didn't help and I felt like I had been hit by a truck for 3 out of every 7 days.

A few months later I started Remicade, and it's still working, as far as I can tell.

Except I started getting frequent nausea a few months ago.
So here we are.
The current situation is tolerable. Not great, but manageable.

Chasing this SIBO stuff seems like more work than it's worth right now.
Denial is one of my primary coping strategies. So maybe it is worth it.

 

[paddywack]

Extra fun, I'm 42. I don't have perimenopause, but apparently things start falling apart after 35?

Nothing like multiple health problems to make a person feel crazy.

 

[paddywack]

The doc sent a script for augmentin.
I filled that and I'm taking that and then we'll see.

I feel like my doctor is getting sick of me. But he's probably just really busy and hasn't given it a 2nd thought.

I'm in MN, US, and the weather has been all over the place the past week.
Two different snow storms, in the 30s and 40s today, and supposed to be 50 degrees and raining on Wednesday. Along with some snow and possibly a hard freeze overnight from Wednesday to Thursday.

I'm halfway through my infusion cycle. I have no idea if that has any effect.

Previous scans have noted non alcoholic fatty liver, but the docs never said anything about it except that it was noted. They noted a gallstone , but said it wasn't necessarily the problem.

The weekend wasn't great. I had a migraine , extreme fatigue, and joint pain.
I slept a lot.

I woke up without the migraine this morning, thank goodness!
But the joint pain has gotten worse as the day goes on.

Nausea is about the same. Happens daily but it's usually mild enough that I can deal with it.

I've been having some pain on the right side of my abdomen and back.
It's probably another echo of nothing that a normal person would never notice.

If it's something, I expect it will make itself known.

In the meantime, there are too many variables for me to determine causality.
The easiest thing to test would be diet. But I don't know where to start.
I'm thinking about scheduling with a dietitian or nutritionist.

 

[crohnsinct]

At this point you have nothing to lose by checking in with a registered dietician. Please try an RD though and not a nutritionist. RD’s have more training and it would be great if your GI office has one or you could find one who concentrates on IBD/IBS/SIBO.

In the past, we have found RD’s and with other issues physical therapists very helpful in raising theories as to what could potentially be going on and communicating with the physician for more testing etc.

Good luck and hang in there. I know how utterly frustrating this is.

 

[paddywack]

In the past, we have found RD’s and with other issues physical therapists very helpful in raising theories as to what could potentially be going on and communicating with the physician for more testing etc.

Good luck and hang in there. I know how utterly frustrating this is.

That's helpful to know, thank you!

I couldn't remember the difference between the two.
My clinic does have RDs on staff. I'll check to see if they have any appointments available.

I don't understand why the doc hasn't made any suggestions about the fatty liver or gallstone. I assume there are some dietary changes that could hopefully prevent it getting worse? I probably shouldn't assume.

 

[crohnsinct]

@paddywack thought of you while reading this thread on twitter.

 

[paddywack]

@paddywack thought of you while reading this thread on twitter.

That's interesting, thanks. I'll have to learn their shorthand. Some of it I understand, some is familiar but I don't remember the standard values.

I asked my GI for a referral to see one of their RDs.
I have a video appointment about a month out.

I've had bad headaches and joint pain this week.
Plus taking an antibiotic.
The painsomnia is wearing on me.

Something I'm thankful for, though: the augmentin pills are HUGE.
For at least 10 years I had to crush all pills because I couldn't swallow them without them getting stuck.

The budesonide treatment works beautifully. I can swallow even these monster pills.

That's amazing