Bad flare, what next

[paddywack]

I've been pretty lucky to have avoided any serious complications, and previous flares were mostly were brief.

This one is different. Very typical for crohn's, just not for me.
10+ bowel movements per day, yellow bile and mucus, pain, chills. Barrel of laughs.

I sent the GI a message 4 days in, which was Monday last week. Doc suggested pepto, low fiber diet, and a stool panel.
I'm surprised that I haven't heard the results of that yet, but in the meantime I'm miserable and trying to figure out the next steps.

Eating triggers the GI tract, which makes the pain worse.
Tylenol isn't doing much.
Today's new symptom is chills.

What should i expect next? I have an infusion scheduled Friday. Beyond that, do I just keep taking pepto or immodium until the symptoms stop or I end up in the hospital?

My brain isn't working well. I'm having a lot of migraines, etc., and I can't think as quickly as I'd like.

I assume at some point we should be doing blood draws, maybe steroids?
I'm not feeling very patient.

 

[Scipio]

I assume at some point we should be doing blood draws, maybe steroids?
I'm not feeling very patient.

I would think your doc should be scheduling a colonoscopy to get a look at what is going on down there. It's tough to treat based on symptoms alone.

 

[paddywack]

I would think your doc should be scheduling a colonoscopy to get a look at what is going on down there. It's tough to treat based on symptoms alone.

I have one scheduled in August, because I made it a whole 5 years since my last one. Although I feel like the prep wouldn't take more than an hour right now.

Most of my previous problems have been in the small bowel. An MRE would be miserable right now. Ugh.

Thanks for replying!

 

[paddywack]

Well, stool panel was negative.
No parasites or infections causing the symptoms.
The doctor noted on the lab results that if the symptoms continue after the infusion, he may want an MRI.

I've been on the same biologic for years. As I understand it, biologics are systemic.
I didn't think it was the ideal treatment for acute flare ups.

 

[Scipio]

I've been on the same biologic for years. As I understand it, biologics are systemic.
I didn't think it was the ideal treatment for acute flare ups.

Probably not, but if the biologic is working well there shouldn't be any flare-ups. That's the goal of strong medicine such as an effective biologic - to get you into a solid remission and keep you there, preventing flare-ups.

But having a big flare after years on the same biologic suggests that the drug has lost its effectiveness, either due to formation of anti-drug antibodies or it simply stopped working. That's why I think a colonoscopy might be informative: if it shows a lot of Crohn's inflammation and ulcers, that would be strong evidence that the biologic is no longer working for you.

 

[paddywack]

Probably not, but if the biologic is working well there shouldn't be any flare-ups. That's the goal of strong medicine such as an effective biologic - to get you into a solid remission and keep you there, preventing flare-ups.

But having a big flare after years on the same biologic suggests that the drug has lost its effectiveness, either due to formation of anti-drug antibodies or it simply stopped working. That's why I think a colonoscopy might be informative: if it shows a lot of Crohn's inflammation and ulcers, that would be strong evidence that the biologic is no longer working for you.

Thanks. That's kind of what I thought.
I'll check in with the nurses when I get my infusion. If the symptoms keep up until then, maybe I'll follow up with the gastro sooner.

I hate feeling like a hypochondriac. That's just life with chronic stuff.

 

[paddywack]

I've been on infliximab/inflectra for 7ish years? Maybe more?

The pain and diarrhea gave me a break yesterday so I decided the flare was done.
Except then this morning it started up again.

 

[Andersen007]

If this happened to me, I would try to switch to pure chicken broth or exclusive enteral nutrition for a few days, to see if it calms things down on the short term while waiting for the medical investigation to progress and your treatment plan to be updated. Perhaps they will put you also on an immunosuppressant, or switch biologic altogether. Steroids short term would be an option too.

A colonoscopy or MRE would be good, but at the very least, stool calpro test (which should have been already done to be fair) to prove inflammation, along with testing the medication and antibody levels in your blood against it. Please note that you cant stay too long on chicken broth alone, and that it could take a few attempts to find an EEN formula that fits you.

If you do not want to do such a radical change, what helped me in the past is basically identifying and sticking to 3 safe foods for a while, then attempting to add 1 new food every few days and cutting it if it significantly increases symptoms. In this case food means a single thing, like chicken breast, not something processed with many ingredients as it would make it difficult to realise which ingredient is making your symptoms worse. When I am inflamed, I get very sensitive to many different foods - and a lot of those seem to make me worse even when I am in clinical remission.

 

[Andersen007]

Some symptoms you mention like brain fog, migraines, could be caused by active Crohn's but also could be due to malnutrition as your intestines may not absorb nutrients in an inflamed state as you would like. Testing for some basic markers such as iron, B12, vitamin D, folic acid, albumin along with a generic blood panel could make sense on the mid-term, as you may have a deficiency that is easy to correct. E.g. IV infusion for iron.

 

[paddywack]

A colonoscopy or MRE would be good, but at the very least, stool calpro test (which should have been already done to be fair) to prove inflammation, along with testing the medication and antibody levels in your blood against it.

They took 4-5 vials of blood yesterday. They're checking med levels and antibodies for the inflectra in addition to liver chems, CBC, some nutrient levels, etc.
I got most of the results already and the only things out of range were my calcium level, which is just slightly low, my carbon dioxide levels, and my lymph absolute is high. ESR, CRP, etc, all normal.

I don't know why he didn't order a FOBT or stool calpro. I've done them all before and was surprised when they only gave me one sample tube.

Doc ordered an MRE, which I've done before. So I know what I'm in for.

I had the worst episode in a while this morning. I haven't been in a ton of really bad abdominal pain, so I made a dumb decision and got an iced coffee with almond milk. Worst bout I've had in years. Lesson learned!

 

[paddywack]

Some symptoms you mention like brain fog, migraines, could be caused by active Crohn's but also could be due to malnutrition as your intestines may not absorb nutrients in an inflamed state as you would like. Testing for some basic markers such as iron, B12, vitamin D, folic acid, albumin along with a generic blood panel could make sense on the mid-term, as you may have a deficiency that is easy to correct. E.g. IV infusion for iron.

I have a number of other chronic illnesses, fibromyalgia among them.
Brain fog is worse for me if I don't eat. My biggest migraine trigger is usually dehydration. But I avoid taking the migraine meds because I take SSRIs. I try to stay hydrated and I have alarms set to remind me to drink water and eat at certain times.

I have iron infusions every 18-24 months on average. My hemoglobin from yesterday is good; I don't know if he ordered full iron studies.

Historically, my labs don't tell much. A normal CRP and ESR isn't very helpful early on because I've had normal results and active disease before.

I doubt that my intestines are getting much in the way of nutrients.
I dislike the texture of most nutrition drinks, but I may be past the point where that matters.

I'm following a low residue diet for the moment.

 

[Andersen007]

Yea normal blood inflammation markers don't mean that much, I also never had them elevated. I was told a low CRP phenotype typically, but not always, indicates a milder disease course. Seems to be true in my case. I do get stool calpro consistently elevated when in a flare tho. MRE is a really good exam, was it abnormal for you before? As in, did they see the inflammation? EEN is officially with water yes - but I prepared genuinely delicious puddings from them in the past using gelatine. I would still eat them but I seem to be one of the rare cases for whom it actually makes disease worse - but I am not very certain of this either. I would definetly do it if I reacted to it like most patients do.

 

[paddywack]

MRE is a really good exam, was it abnormal for you before? As in, did they see the inflammation?

Yes, it showed a stricture in the terminal ileum. That was 5 years ago. Doc was able to stretch via colonoscopy. I had a CT and a HIDA scan 2.5 years ago. That time my gallbladder was causing problems and they did a laproscopic cholecystectomy. So it's not my gallbladder this time.

I was diagnosed after a capsule endoscopy. There wasn't enough in the large intestine to confirm when they scoped, but the pill cam was *yikes*.
At the follow-up appointment the doc had the images up on the screen and he kept pointing, "ulcer, ulcer....ulcer, ulcer..."

At that point he finally had the images from my first colonoscopy, which apparently was noted as consistent with crohn's, but that dumb doctor didn't bother telling me.

I'm still working full-time. I went grocery shopping today for the household.
I'm grateful for what's gone well and I hope any issues are minimal.
And I'm off coffee and any other caffeinated or acidic beverages. Probably just sticking with water.

 

[Andersen007]

Yea sugary / acidic drinks, anything with bubbles, or alcohol can also trigger me quite easily. Smart idea to cut back on any potential triggers especially if they serve no nutritional value. Fortunately I do not have so bad symptoms as you do now, but I think I will always prefer continuing to work full time and I am very transparent about going through a flare - thankfully my manager and colleagues are very accommodating. I find this helps keep a sense of normalcy in my life and a daily routine even when things arent the best. They even let me skip Fridays in tougher times which is something I greatly appreciate.

Bit confused about your timeline btw - you are on Remicade for 7 years but had a stricture 5 years ago shown on MRE but they didnt switch meds or dose escalate? Do you know if that has ever resolved? And the colonoscopy and capsule endoscopy, when did those take place? Apperantly they found Crohns in both large and small intestines?

 

[paddywack]

Bit confused about your timeline btw - you are on Remicade for 7 years but had a stricture 5 years ago shown on MRE but they didnt switch meds or dose escalate? Do you know if that has ever resolved? And the colonoscopy and capsule endoscopy, when did those take place? Apperantly they found Crohns in both large and small intestines?

I have an autoimmune condition that causes my esophagus to stricture. The dysphagia is what made me go in the first time, maybe 17-18 years ago. They did an upper GI and a colonoscopy at the same time.

At the time, the condition in my throat was unheard of. The doc who did the procedures sent me a letter asking if I drank bleach as a child. That made me really mad. And when the pathologists finally diagnosed it, they didn't know how to treat it.

After that experience, I just didn't go back.

But the dysphagia got worse and my spouse was worried that they'd find me dead after choking on food. So after 6-7 years, I went to a different doctor.

In between treating the esophageal strictures, they did tests because of the chronic diarrhea, found the chronic anemia, etc.

The crohn's was diagnosed 10 years ago. I was on prednisone to try and stop the flare. Then Imuran for about a month, until it gave me pancreatitis and put me in the hospital.

It took months for my liver numbers to get back to normal, and then I was on methotrexate for a few months. It didn't help and I felt awful the whole time.
I was on budesonide until the remicade was approved. I think that was Fall of 2014?

The stricture they found on the MRE they treated just by stretching and with steroids. We never switched the biologic.

The doc who diagnosed the crohn's left the clinic for a better job. The next doctor left, and then the next. I got fed up and switched to the clinic the first doctor moved to. That was probably 3 years into the Remicade.
He might not realize just how long I've been on it.

And doctors rely on lab results.
When I had pancreatitis I felt it a week before the labs showed it. I went to the ER and they found it on a CT scan before the labs showed it.

Since that first colonoscopy, the crohn's is mostly active in the small intestine and the TI.

I haven't had a colonoscopy in 5 years because things have mostly been calm. The occasional flare up usually lasts a week at most.

This is different.

 

[newdiagnosis]

Kinda in the same position. Even had a recent good scope but now flared. Kinda scary to have a real flare after being stable for so long and essentially forgetting you have Crohn's.

 

[paddywack]

I got the results of the MRI scan a week after the test.
No active inflammation or crohn's, but a large cyst in the pelvis, and I should follow up with gynecology.

Woo-hoo.
In the meantime, BMs are not still back to normal.

The doc included a note that if diarrhea continues, I can take immodium or perhaps a course of rifaximin.

Not very conclusive. I already had a colonoscopy scheduled, and now I have more appointments with the other specialists.

 

[Anna's Bandit]

I hope you're feeling better now or you're getting the right treatment.