• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Unknown (as yet) viral infection

Tesscorm

Moderator
Staff member
Hi all,

So S is having some problems and we're kinda scrambling here. His GP has moved so S is waiting to see a new GP.

For weeks, weeks now, S has been complaining about a bit of redness/swelling on his eyelid. I thought it might be blephartis and told him to speed up the GP process (ie call to book first apptmt!) or go to walk in... because it wasn't a big issue and he's been quite busy at work, he hadn't followed up yet. Not sure if this is even related....

Approx. 10-11 days ago, he started having pain when urinating. He immediately went to walk-in and they gave him one dose of an ABX as a preventative measure and tested him for the more common STDs. They told him pain should be gone within 3 days. Results came back negative for all and pain continues.

On Friday, S thought he had some allergies (he never had before??) because both his eyes were red and watery. He tried allergy eye drops Friday and Saturday and no improvement. Sunday he went to ER. They tested checked his eyes for a number of things, including uveitis and STD in eyes (can spread to eyes) and again negative. Said he had urethritis, cudn't explain why. In passing, mentioned Reactive Arthritis. Gave S another dose of the same 'one pill' abx for the urethritis and an eye ointment and told him to return next day to check eyes.

Next day, tested for UTI and negative. Said, while somewhat unlikely, thought it might be Reactive Arthritis. Awaiting test results for HLA-B27. As S and I had done our homework, when S returned, he requested a referral to a rheumatologist but ER dr said he didn't have sufficient reason to make the referral until he had gene test back. Urinating pain is lessening, so S is seeing how it goes... Eyes are still red but ER dr said it could take a few days to improve (and S thinks there's a very slight improvement).

When this all began, S spoke with girl, she mentioned that she'd had a UTI. At second ER visit, S asked them to test for UTI again as he'd just found out about girl's UTI but they wouldn't run test again.

Now S and I were trying to find a non-STD cause for urethritis and came across adenovirus, which can cause conjuctivitis and urinary tract infections.

S said that a couple of weeks ago, he had a croupy cough and like a 'whistle' when he was breathing but he said it went away in a couple of days. As well, he said a couple of weeks ago, he had a day when he had no appetite, a bit of nausea and diarrhea... he just thought he'd eaten something 'off' and it went away by the next day as well. (he can't remember how closely together he had the nausea and cough)

So, now, he's going to walk-in again today and he's going to ask for a UTI test and to be tested for adenovirus. Aside from just wanting an answer and to clear these up, our concern is that his next remicade is July 22.

I'm going to email his GI but was going to wait to see if we can get the UTI and adenovirus test results quickly.

Do any of you guys have any experience with either Reactive Arthritis or Adenovirus?? Would either be cause to delay infusion?

:(
 
  • Hug
Reactions: pdx

my little penguin

Moderator
Staff member
I think 🤔 till he tested negative
I don’t think there was a treatment per say ...
Honestly it’s been too many years
But I do remember holding it
And getting the horrid test done twice (has to be way in the back through the nose not a normal swab and only the ER could do it for some reason not urgent care or peds )
If it’s positive check with his Gi
 
Last edited:
Hi T - sorry to hear about this but sounds like you guys are on top of it. Please keep us updated. I hope it turns out to be some random viral infection that just goes away in a couple of days. S still has 12 days before his infusion - it may long be gone. I hope only for good results. Hugs.
 

Tesscorm

Moderator
Staff member
Tks.

Walk-in was unable to do adenovirus test. Had to send a referral to a ID clinic for test. UTI and prostate - both negative.

Dr said it's likely either Reactive Arthritis or Adenovirus. Said conjunctivitis starting in both eyes at the same time is very likely to be viral. And throw in urethritis and he thinks his body is fighting something.

So, will send email to GI then... maybe he can speed up the adenovirus test rather than waiting for the ID clinic to call.

A bit relieved that we're starting to get an answer... has been a scramble with no family dr and S just going from walk in to ER to walk in to ER... Will be a relief for him to get settled with a new GP.
 

my little penguin

Moderator
Staff member
Ugh 😑
Glad your getting closer
But they really need that test
Can go refer you urgently to rheumo for reactive arthritis?
Since spondyloarthritis (reactive falls under this ) does not require hla -b27 to be positive
Most people are
But folks can be positive and not have spondyloarthritis as well
 

Tesscorm

Moderator
Staff member
I've sent GI an email and did request a referral to a rheumo. S gave me a timeline of all his symptoms and I forwarded to GI as well. His timeline did actually included 4 days of lower back pain (I did see the connection w spondyloarthritis too) but the cause of 'aches' with S are often a bit vague because he still plays hockey a couple of times a week...

His GI has been really good in the past re referrals, including to rheumo when S had that chest pain years ago (thought costochondritis... we never did figure out what that was...), so I'm hoping we get referral soon.

Also hoping that hospital can do the adenovirus test and we don't have to wait for ID clinic to all us... (although walk-in dr did say they will probably call by tomorrow or Friday).
 

Tesscorm

Moderator
Staff member
Thanks MLP. Didn't hear back from GI but didn't really expect to... it was a bit late in the day when I sent email. Hopefully, something tomorrow.
 
What a bummer. Sorry to hear S is having a tough time. I hear you on the no GP, different walk-in clinics, etc, and giving all the details to Mom so Mom can sort it all out. It is so hard when they are this age and they don't have all the professionals in place that we think they should. Then they tell Mom about it and once she is doing the worrying, they go off and live their life! I had a friend who was driving across the country and their son kept calling them about his recent heartbreak--they were so worried about him they parked the vehicle and flew out to see him as a surprise. When they arrived, the son was heading out to a party and greeted the parent with, "Hi, just heading out--not sure why you are here"!!

I sure hope you can get it sorted out soon so he can stick to his infusion schedule and also that he feels better soon.
 
Happy, your story cracked me up. This is so true of young adults, especially boys I think. I can so relate to this. LOL.
 
Leave it to S to get another weird thing. That boy sure does keep you on your toes! I hope the GI calls today so you can cross this off your list of things to ponder and get back to worrying about red or white with dinner!
 

Tesscorm

Moderator
Staff member
happy, you had me literally laughing out loud! I'd sent S a bunch of texts yesterday morning re his walk in appts ;), etc.... and, usually he acknowledges fairly quickly, but... 2 hrs pass w no reply... new msg asking 'all good?', nothing... another message 1 hr later.... nada... now the phone calls start, no answer... another call... his roommate is away and I'm thinking he's all alone... by noon, I'm thinking to all the really serious complications... could he have worsened significantly overnight? Wondering how soon can I go banging on his door?? Will mgmt unlock his door for me?? LMAO!!! He finally calls, all good, relaxed... saying he'd slept in as he couldn't go to work with his eyes... Ugh! How does a mother learn to stop jumping to the worst thought?!?!? hmmm, wine would help!!

CIC - another weird thing... I know, right?!? We always go to the same hospital... rheumo (chest pain), cardiology (chest), shoulder surgery, dental surgery, derm (molloscum), now opthamology and maybe urology??... he was also born at that hospital... poor guy, shouldn't he qualify for some loyalty reward by now?!?o_O

Hvnt heard back from GI nor ID clinic yet...
 
So sorry you are still waiting for some help.

I have another couple of goodies for you--I can't remember if I mentioned them on here before or not.
First one--about 2 years ago I get a call from my son who is living in another province, "Mom, my face is all droopy." "What do you mean exactly", I say as calmly as I can. "Well one side is all frowny and I can't make it smile," he says. "Get to the hospital, text or call when you get there," I say. "Oh, I knew you were going to say that, that is why I didn't want to call you, "he replies. Yup he still needs permission from his mom to take himself to the hospital! He had just had a bunch of tests for a heart arrythmia and some thyroid weirdness and he has a big family history for weirdo heart things like hearts just stopping for no reason, so I am hoping for Bell's Palsy (oh no, not his beautiful smile), but thinking 'stroke'. I don't hear from him when I think he should be at the hospital. I call him, "Hi Mom", he says calmly. "Umm, are you there yet?" I say, not so calmly. "Uh no, it is a 20 minute walk, so I'm just about there now". 😲 Ok, it turned out to be Bell's palsy and he completely recovered and the fact that he could walk to the hospital was great, but at the very least he could have taken an Uber!

Next one--his sister was really ill with Influenza this year. I mean really ill--her husband who is a nurse stayed up all one night trying to keep her fever down and was worried that her 'brain was going to cook'. It took her several weeks to regain her strength after this.

So my son had just started a medication to treat his possible 'colitis' and the side effect list was very long with the really wonderful warning of 'acute intolerance syndrome' which sounds like his usual symptoms combined with influenza. "Umm, I don't feel so good," he calls to say.
I have learned by now to get specific descriptions of 'sick', 'don't feel good', and 'good'. 'Good' usually means his usual digestive symptoms without extra fatigue or brain fog and 'sick' means his usual digestive symptoms plus acute diarrhea, with or without extra fatigue and brain fog. But 'sick' can also mean a head cold or chest cold on top of the usual digestive symptoms. "I don't feel so good" usually means that if we are in the same city, could I please pick him up and take him to the hospital.

Of course he lists all of the symptoms on the 'acute intolerance section' of the side effects. He has actually dragged himself to work that morning (20 minute walk again!) and he doesn't know how he can get himself home and he is getting 'worse'. He is living in a different city than me. While speaking with me he agrees to ask a co-worker to drop him off at the urgent care centre. At the UCC they decide he probably has 'just' influenza. I am wondering how he will care for himself when they send him home as he lives alone and is in a city new to him. I actually call a home nursing company and they tell me that if required I can hire them to check him every two hours for blood pressure, heart rate, temperature, and monitor his fluid intake, and take him back to the hospital if needed. Meanwhile he has managed to stop at the pharmacy across from his place and picked up tylenol, a thermometer, and lots of gatorade. I gave him the number of the nursing company and checked on him until late at night. He survives the night on his own and doesn't call the nursing company. We do this for another day and then that next morning I cannot reach him. Two hours later I am just about ready to call his boss to head over and talk his way in to my son's apartment when he calls, "Oh sorry Mom, I felt better so I went in to work, but I feel crappy now, so I am headed back home". D'uh, no kidding. But now I know that I can call that nursing company on short notice anytime I think he may need help looking after himself when he next, "doesn't feel so good".

Anyhow, now he laughs at me for answering daytime phone calls from him with, "is everything Ok?"

Hope this keeps you laughing while S waits for some help.
 
OMG, I am sane after all! I think mothers share a commonality of jumping to conclusions if we do not get in touch with our kids especially if they have a chronic illness. Just the other day, I got home from being out with a friend, and my husband wasn't home and he is always home. It was also the time that my son would be coming home from work. I immediately thought that maybe my son had car troubles, and then I thought that maybe my son wasn't feeling well and called his dad to pick him up (this happened last year before his diagnosis), and all these little worries came pouring in. My son comes home from work at his usual time, and then my husband comes home minutes after that. He was at the hardware store. Boy I felt foolish. I didn't share with either of them that I was worried....... ha ha.

Anyway, we worry about our kids, and often more than we should.
 

Maya142

Moderator
Staff member
Tess, somehow I missed this thread!! I have a few questions:
1) They checked his eyes for iritis, right? Iritis is inflammation of the iris (it's also called anterior uveitis). Typical symptoms are red eye(s), sensitivity to light, pain.
2) As you've been told, reactive arthritis is a type of SpA. In some cases, it persists and becomes chronic arthritis and in others, it slowly improves and goes away.

Does S have joint pain? In terms of back pain, when does it hurt (at night, in the morning, in the evening?)? Does the pain get better or worse with movement? Are any joints stiff in the morning?

Reactive arthritis is a general term for a form of joint inflammation (arthritis) that develops as a "reaction" to an infection in another area of the body (i.e., outside of the joints). Joint inflammation is characterized by redness, swelling, pain and warmth in and around the affected joint. In reactive arthritis, the large joints of the lower limbs and the sacroiliac joints are most often affected. Two other common symptoms of reactive arthritis are inflammation of the urinary tract and inflammation of the membrane (conjunctiva) that lines the eyelids (conjunctivitis). These three characteristic symptoms may occur separately, all at once or not at all. Additional symptoms such as fever, weight loss, lower back pain and heel pain may also occur. Reactive arthritis usually develops following a bout with certain bacterial infections including Chlamydia, Salmonella, Shigella, Yersinia, and Campylobacter.

Reactive arthritis belongs to a group of related disorders known as the spondyloarthritidies. These disorders are linked by the association of similar symptoms and a specific genetic marker called HLA-B27. Symptoms common to these disorders include arthritis, especially of the lower limbs, lower back pain and enthesitis, a condition characterized by inflammation at the spot where tendons attach to bone. This group of disorders includes reactive arthritis, ankylosing spondylitis, psoriatic arthritis, undifferentiated spondyloarthritis and spondyloarthritis associated with inflammatory bowel disease.

Reactive arthritis is a poorly defined disorder that has been described in the medical literature under many different names. No precise diagnostic or classification criteria have been developed that are universally agreed upon in the medical community.
 

Tesscorm

Moderator
Staff member
happy... I'm so with you when answering the phone 'is everything ok?' LOL Especially when he's away... that long distance ring is momentarily heart stopping! :oops:

CIC - things are improving. :D Eyes are much better but not 100% yet. He's still using the ointment they've given him. Not red anymore but eyelids still a bit swollen and reddish and still a bit of crust in left eye. So it does seem to be getting better. And urethritis also seems to be almost gone... now almost two days without pain. From what I've read, with adenovirus, it's the affected areas that are treated not the adenovirus specifically. So, I'm hoping the eye drops and ointment are working and the two doses of azithromycin have finally work on the urethritis.

Unfortunately, no call from ID clinic and GI's assistant said she'd try to get an answer by Thursday at the latest. Not sure if this means GI's away or waiting to see how it plays out?? Unfortunately, without a GP, we don't really have anyone specific to follow up??? I'm counting on the GI to sort of 'back stop' the decision re the remicade - that seems to be the question that needs to be the most immediate question to be answered.

Maya - S mentioned some lower back pain (he mentioned sciatic because his leg hurt) around the last week of June, so about a week or so before everything else started; he said it went away after 3-4 days. But, I can't answer your other questions re time and/or rest/movement. He's randomly complained about an ankle pain but he had a bad (hockey) slash to the ankle, which actually caused temporary nerve damage 2+ years ago, so it doesn't surprise me if that ankle sometimes hurts... Then, he sometimes complains about his wrist joint hurting in the morning (only one, right wrist I think) but, it's not always and again... hockey? tendonitis from keyboard?? But, I know he won't check it out until 1) it bothers him more and 2) he has a GP...:rolleyes: Arthritis (rheumatoid, reactive, etc.) do cross my mind each time but... it's never been bilateral so I just let it go...

They did check for uveitis and, not sure if this is what you mean by iritis/anterior uveitis, but they also told S that they checked the rear of his eye and all was clear.

So, for now (and because I have no other choice), I'm just hoping all is clearing up and will wait for GI's recommendation for adenovirus (I don't think a remicade infusion would need to be stopped for reactive arthritis specifically, only if there's an infection). I would hate to delay remicade for no reason... I also don't want him to have it if there's an underlying infection. I'm hoping in a few more days, urethritis will not come back (and I'll assume it's been treated) and his eyes completely clear... and that will make me feel a bit better about going ahead with remi on Saturday.
 

Maya142

Moderator
Staff member
S mentioned some lower back pain (he mentioned sciatic because his leg hurt) around the last week of June, so about a week or so before everything else started; he said it went away after 3-4 days. But, I can't answer your other questions re time and/or rest/movement. He's randomly complained about an ankle pain but he had a bad (hockey) slash to the ankle, which actually caused temporary nerve damage 2+ years ago, so it doesn't surprise me if that ankle sometimes hurts... Then, he sometimes complains about his wrist joint hurting in the morning (only one, right wrist I think) but, it's not always and again... hockey? tendonitis from keyboard?? But, I know he won't check it out until 1) it bothers him more and 2) he has a GP...:rolleyes: Arthritis (rheumatoid, reactive, etc.) do cross my mind each time but... it's never been bilateral so I just let it go...
Honestly, if he has any swollen joints or persistent joint pain, I'd have him see a rheumatologist. It is perfectly possible to have unilateral joint involvement - in fact, in SpA joint involvement is typically asymmetric. Reactive arthritis falls under the SpA umbrella and can evolve into chronic SpA, so it's really important for him to see a rheumatologist if there is unusual stiffness, pain or swelling in any of his joints. Typically it's lower limb joints - knees, ankles, feet etc.
The SI joints also can be affected. You need to watch for back pain that gets worse with rest (such as while sitting for a long time or sleeping) and better with movement. Also, lower back stiffness in the morning that gets better after a while.

I'm sure when you ask him, he's going to say fine, so I figured I'd tell you what to grill him about ;) - morning stiffness, pain that gets better with movement etc.

Here is some more info from Medscape:
Signs and symptoms
The classic triad of ReA symptoms (found in only one third of patients) consists of the following:
  • Noninfectious urethritis
  • Arthritis
  • Conjunctivitis
In postenteric ReA, diarrhea and dysenteric syndrome (usually mild) is commonly followed by the clinical triad in 1-4 weeks. Some add a fourth component (mucocutaneous findings) to make up a diagnostic tetrad.

The following may be noted:
  • Acute onset of ReA, with malaise, fatigue, and fever
  • Asymmetrical, predominantly lower-extremity, oligoarthritis as the major presenting symptom, sometimes with early myalgias
  • Initial nongonococcal urethritis, with frequency, dysuria, urgency, and urethral discharge
  • In addition to conjunctivitis, ophthalmologic symptoms that include erythema, burning, tearing, photophobia, pain, and decreased vision (rare)
  • Mild recurrent abdominal complaints after a precipitating episode of diarrhea
The fact that he definitely has 2 of the "classic triad" makes me think this warrants a visit to a rheumatologist.
 

Tesscorm

Moderator
Staff member
Eye is still not really better. S says there's still a bit of crust in morning and sometimes it's a bit blurry. He's not sure if the blurriness is 'new' because he's been off work, so he's not sure if it's the screen, office lights, etc... He's calling eye clinic again to schedule apptmt. I'm going this time...

Is it possible to have a false negative with uveitis?
 

my little penguin

Moderator
Staff member
Did he see an optometrist or ophthalmologist?
Makes a big difference

Ophthalmologist is the one you want MD
There are a lot of eye issues that can occur with. Crohns including epi scleritis

As well as conjunctivitis allergic /limbal vernal etc...
 

Tesscorm

Moderator
Staff member
Unfortunately, I'm not sure. I 'expect' that it would have been an opthalmologist. It was the hospital's ER that referred him to their eye dept. As they were dealing with an eye issue that had not been resolved at the first ER visit, plus he also has urethritis plus he has crohns... I'm assuming he would have been seen by opthalmologist.

GI called; he wants to see S tomorrow afternoon. S is also calling eye clinic to see dr again and will try to set up apptmt before GI -- both at same hospital. Hoping, if apptmt is in morning, report/summary can be available to GI by afternoon.

And, as I'm going to these apptmts, I'm hoping I can get some more answers...
 

my little penguin

Moderator
Staff member
Fingers crossed you get answers
Ds has had eye issues in the past and was advised ER as necessary after hours
But eye clinic is soo much better at getting to the bottom of things
Hugs
 

Maya142

Moderator
Staff member
I'd think that with new symptoms, he would probably need to see an ophthalmologist again...it's possible that uveitis has developed. Iritis is a type of uveitis and my husband often complained of blurriness and sensitivity to light. I would at least call the ophthalmologist and inform him/her about the new symptoms.

Fingers crossed he starts feeling better.
 

Tesscorm

Moderator
Staff member
I'm really so appreciative of S's GI... with S not having a consistent GP (or any right now), it's a relief to have someone really look at the whole picture!

GI doesn't believe it's reactive arthritis. Believes joint pain would be more prominent with the urethritis and conjunctivitis being secondary issues. With S, they seem to be the only issues. (S insisted the odd joint pains he feels are due to hockey.) Also, S doesn't appear to have had any of the more common triggers. (But, we'll still wait to see gene test.)

He believes it's more likely to be (have been) adenovirus. To be on safe side, we'll delay remi by a week. The remi could have made the urethritis and conjuctivitis more severe and tougher to shake and that could be why they're taking a while to completely disappear. As S is seeing improvement, he believes virus is probably dead or almost dead (not his words exactly, I forget his exact term) and said the delay may not even be necessary but, as S's remi levels were good, he didn't think the delay would hurt.

Of course, to follow up with eye clinic and to call his office if anything changes.

Whew... seriously, between his injuries and the 'medical mysteries' (as one doctor once said of S), he keeps us on our toes! Just grateful he's come out ok again.

Thanks all!! As always, you guys keep me grounded and I so count on you all for the advice, understanding and knowledge!!! 🌺🌸🌺
 
Last edited:

Tesscorm

Moderator
Staff member
No. S said he's waiting for ID clinic to call and GI just said 'ok'.

GI went by 'elimination' really. As he didn't think S really fit the profile for ReA, he's thinking more viral.

I'm not 100% sure now but I think he also mentioned that 'viral' would explain why the two doses of abx didn't help the urethritis.

With adenovirus, symptoms can also be respiratory and gastro but milder than with ReA... So, maybe the day of no appetite and d?? Also S had a couple of days when he had some wheezing/whistling sounds when breathing and a croupy cough - only lasted a couple of days and went away on its own. Both of these could have been triggers of ReA too but I think the lack of joint pain is really what's making GI feel viral.

To be honest, the GI wasn't 100% with the adenovirus specifically but he thought that was more likely than ReA. He thought S's symptoms were a bit odd in not fitting profiles exactly. But, he'd said S had had so many tests and most of them repeated (urinalysis, bloodwork, eye exams), that 'something' would have shown up... We are still waiting for the ReA gene test though... If that's positive, then that would be cause for a closer look at these symptoms and the joint pains.

He also requisitioned bloodwork, which he said could wait until infusion. I'll have to check if it's any different from the usual infusion requisition.

Today, S said his eye is a 'little' better... just seems to be very small increments of improvement. :oops: But,it is moving in the right direction. And, GI felt that remicade could be a reason why both were more severe and taking a bit longer to clear.
 
Top