Crohns or something else?

[sfv]

Hi everyone! I'd really appreciate any help you could give me!

My husband has been dealing with anal fissures, rectal spasms, and incomplete evacuation for years now.. No serious constipation or diarrhea, and no stomach pain. He's tried laxatives, probiotics, and fiber supplements, to no avail.

Had some basic blood work and a colonoscopy with biopsies 2 years ago which showed nothing unusual.

We started seeing a new gastro who believes it is Crohns. Did the Prometheus testing which showed "weakly positive" results for the asca antibodies (meaning Crohns over UC). The other tests aren't back yet.

The new doc wants to do another colonoscopy and an endoscopy as well.

First, does this sound like Crohns? And second, is it worth doing these procedures? Would anything have changed in just 2 years?

Thanks in advance!

 

[DJW]

Hi and welcome.

Things can change quickly with Crohn's. If the doctor is recommending scopes then it is definitely worth it.
I do know Crohn's isn't a one size fits all type of disease. It effects all of us in different ways.

Sending you both my support.

 

[hawkeye]

I'd recommend getting the scopes done, as DJW said things could change over 2 years if it's Crohn's

 

[sfv]

Need advice.. My husband has done a gluten/lactose elimination diet for the last 2 weeks and it seems to be working. No pain or bleeding at all during that time and he has also lost almost 10lbs.

However, he is still needing to take benefiber 3x a day, despite all the food fiber he's getting, and it still takes him 15 minutes or so on the toilet. So obviously it's not a cure.

But now he is convinced there is no point in getting the colonoscopy/endoscopy done this year. He doesn't think the doctor will be able to do anything for him except tell him to continue this diet.

Is he wrong? Would the procedure be able to give us any more information about what's going on?

Thanks..

 

[DJW]

I'd still follow the doctors orders if I was in his shoes. Get the scopes.

 

[Axelfl3333]

I,d get the scopes as well,the endoscopy is quick and easy the colonoscopy is a bit more difficult because of the prep it's pretty much the gold standard for diagnosis there must be something going on if husband has to stay on a restricted diet.good luck

 

[Madhu]

You have to go through with the scopes. 2 years is a long time and anything can happen if it was Crohn's. Do the scopes and if it's clear, atleast you can be relieved its not Crohn's and go about a different path of diagnosis. I hope he feels better.

 

[sfv]

Hi again and thanks- I think what he wants to know is- even with the diagnoses, what will the doctor be able to do for him besides tell him to stay on the restrictive diet? We live in a rural area so he'd have to travel for the procedure and take off 4 days of work. He is a teacher so that is hard.

We just got some more blood tests back-
-CRP is slightly elevated
-Sed Rate is quite high (both meaning inflammation)
-Osmolality is a little low (not enough electrolytes/too much water)
-Ferritin level is slightly elevated but other iron tests are normal

Everything else is normal.

After almost 2 weeks of no pain, hubby went on a camping trip Thursday night and threw the diet out the window. Friday he paid the price- the fissures opened and he bled a lot. So we know diet is definitely a key factor. I'm glad we're getting somewhere after all these years.

 

[my little penguin]

If it's crohns then typically you need a med to stop the body from doing damage to the intestine . Complications from crohns can be fistula abscesses strictures ulcers obstructions sepsis and even death so
Kinda worth the scope .
Diet can help but not handle the heavy inflammation .
Good luck

 

[sfv]

Thought we had the answer!!

Going gluten & dairy free seemed to solve the problem for a while. But the fissures have come back and are as bad as ever, despite staying gluten/dairy free. What the heck!

My husband is still taking benefiber 3x a day (upping it to 6 now), and drinking enough water, and starting taking sitz baths 2X a day again. But it hasn't improved AT ALL over the last 2 weeks.

We scheduled a colonoscopy for late December, but may decide to move that up if the pain doesn't improve. Right now he's in pain all day long and has needed 800mg of ibuprofin every morning.

 

[my little penguin]

Ibuprofen and crohns are never a good combination
Please tell his Gi right away that he has been taking NSAIDS
They can cause Gi bleeding and ulcers in folks with crohns

 

[sfv]

I googled it and it sounds like the main problem witih NSAIDS is they can make diarrhea worse. He has never had diarrhea and we are not sure it is Crohn's. Blood tests showed very little inflammation.

Thanks for the info though- he is now laying off it, although it did seem to be helping. It is so difficult not knowing what could be hurting and what could be helping.

We are now doing the low FODMAP diet to see if that helps, although it sounds like that is mainly to help with diarrhea as well, whereas his problem is the opposite. :-/

 

[my little penguin]

DS has severe constipation and has crohns
Diarrhea was never an issue
They didn't want to scope since he didn't have diarrhea
He was dx at age 7.

Good luck with fodmaps
Tried that for a while with DS
Didn't help

 

[sfv]

Can you tell me what did help with DS? And what the scope showed that proved it was Crohns? We are lost here.

Also pardon my ignorance but does dx mean diagnosed?

DS has severe constipation and has crohns
Diarrhea was never an issue
They didn't want to scope since he didn't have diarrhea
He was dx at age 7.

Good luck with fodmaps
Tried that for a while with DS
Didn't help

 

[my little penguin]

Dx means diagnosed
DS started to have recurring rectal prolapse ( unheard of after age 4- he was 7)
He stopped gaining weight then slowly lost weight
Had abdominal pain
Constipation , lack of appetite, and reoccurring vomiting.
Eventually the rectal prolapse cause rectal bleeding and they scoped him.
Visually things looked ok
But biopsies showed chronic and acute inflammation from his esophagus to his anus.
He also had multiple non-caseating granulomas in his caecum and terminal ileum.
Having granulomas allowed the pathologist to check the crohns box.

DS has a lot of extra intestinal manifestations( EIM )- mouth ulcers , vasculitilis , juvenile spondyloarthritis in his joints etc...)

Within a year of dx he had to escalate to remicade.
He currently is on humira and methotrexate plus
Partial en ( peptamen jr with prebio -80% calories ) and crohns exclusive diet .

Any Gi problems and NSAIDs can give false positives on scopes ( meaning Gi will attribute any ulcers found or inflammation found to the NSAID )
Avoiding scopes is really not recommended.
People can go from being ok to ICU very quickly

Tagging Crohnsinct
Clash
Jmrogers

 

[crohnsinct]

Hey there! Sorry your husband is having such a rough time.

My daughter seemed totally asymptomatic until her first flare which ended her in ICU. Mostly because of being terrible malnourished and her organs giving out but she was also terribly low on HGB and needed transfusions.

Ny younger daughter had constipation and abdo pain but could live with it and did for 6 years before anyone took notice. She had completely normal blood labs. It was the fecal calprotectin that got her evaluated.

CRP and sed rate can be elevated for a number of issues BUT with his GI issues and elevated labs, I would certainly want him evaluated.

Diet has been proven to help tremendously with symptoms however so far no diet has been proven to work with endoscopic proof. My daughter is on the IBD-AID diet.

He may still have celiac and if you are getting an upper endoscopy done, he needs to be on gluten in order for it to show in the biopsies...stinks I know but there is no other way. Check with the GI on this but I would hate for him to have scopes only to find out they are invalid.

Ditto MLP's comments about NSAID. They are bad for the GI system and especially bad for Crohns. Also they will delay a dx because the GI will assume the problems are from the NSAIDs they did that with my younger daughter who used them for headaches.

The kids around here like to use these heavy rice bags that are warmed up and put on their tummies. Perhaps something like that could help him.

Has he had a fecal calprotectin test. Simple non invasive poop test. Those results are pretty accurate. Elevated and you are talking a problem of an organic nature. Normal and probably functional.

 

[sfv]

Thank you both! We hadn't heard of the fecal calprotectin test. I hope we can request and have that done soon. Will also have him check with the Doctor on gluten and make sure he's scheduled for the procedures that include biopsies. We don't expect anything to show up on the endo anyway. He has never had any stomach pain or anything- just neverending fissures that don't heal.

 

[Jmrogers4]

My hubby had fissures. Our first clue was an abscess at his terminal ileum. Constipation was an issue for him but other than that it was not until high fever, chills and stomach pain over a week that sent us to the doctor. Did an ultrasound and found the abscess, he was admitted the hospital abscess drained and spent about a week while they tried to decide if they needed to do surgery or not. Crohn's was mentioned but this was over 20 years ago and we were told they needed to take care of the current problem and then we would find out what caused it. He had scopes 3 months later and biopsies confirmed Crohn's. He was put on Asacol then Pentasa (like aspirin for the gut). Neither one did much he ended up back in the hospital within a year and had several fissures over the next several years each time they were treated with prednisone, sitz baths. We tried many diets over that time seemed to work for a short time and then we were back to square one. It was not until his last surgery for fisure and perianal abscess at which time he was put on Imuran (13 years ago) we have had no hospital stays, abscesses, fisures since. He just had scopes a week ago it was all clean. GI says no sign of fisures or abscesses where they were before.
Diet I believe or at least in our case helped but was never enough to bring about long lasting remission on it's own.
Hope you get some solid answers from scopes