Doc says my husband has Crohn's?

[HusbandwithCrohns?]

Hello everyone,

I found this website today and I was hoping that all of your experiences can help me understand my husband's situation.

My husband is 33 years old. He has never had any severe bowel problems. In 2014 he underwent a colonoscopy which diagnosed him with IBS and and colon inertia.

One month ago my husband got sick with a fever, it lasted a couple of days and with it he started having moderate to severe diarrhoea. Following this he started feeling spasm-like pains in his rectal area. A few years ago a GP told my husband that he had an anal fissure. It eventually healed, so we assumed this was the fissure coming back. With the diarrhoea there was some bleeding so that was a cause of concern. When he went to the emergency room, the doctor said that he had an abscess and that the blood coming out was something different and he would need a colonoscopy.

The doctors in the emergency room drained his abscess and his spasm pain immediately went away. He underwent an endoscopy and a colonoscopy/endoscopy. The doctor indicated in the colonoscopy report: Moderate inflammation with aphthous ulcers at sigmoid, rectum, descending colon. In the endoscopy report he indicated: moderate gastritis at body, antrum and moderate duodinitis at first part of duodenum.

Immediately following the colonoscopy the doctor put him on prednisone. Even prior to the colonoscopy the doctor kept telling us that he suspects crohns. This was a week ago. During that week the doctor also had my husband do an MRI which revealed the following: right side of the colon is filled with fecal matter and has apparent wall thickening, to be correlated with colonoscopy. It also indicated a left sided short low lying intersphicteric peril-anal fistula.

In the meantime the biopsy report from the endoscopy/colonoscopy revealed the following:
sigmoid colon biopsy: serial levels reveal colonic mucosal tissue with picture of focal active colitis, most likely infectious in aetiology, no changes of IBD, no dysplasia or malignancy.
rectal biopsy: serial levels reveal rectal mucosal tissue with picture of middle focal active proctitis, most likely infectious in aetiology, no changes of IBD, no dysplasia or malignancy.

the biopsy report concluded that he has focal active colitis and mild focal active proctitis (it also tested his gastric area and it indicated a h. pylori associated moderate chronic non-active gastritis)

His blood works came back mostly normal except for slightly elevated calcium, but his CRP number was very high at 65.1.

We met the doctor yesterday and he was very rushed, he insisted that my husband has crohns and that he should eventually start taking Humira to treat his fistula. Currently the only symptom my husband has is the fistula which is causing him no pain at all or drainage, he has never had abdominal pain throughout this whole ordeal, prior to this month he hardly had any symptoms except for the slight gas here and there after a heavy fiber meal. Today he is passing normal stools and having regular and healthy bowel movements. You wouldn't know he is sick and he does not feel ill.

I am very sorry to overwhelm you all with this, I am just confused as to how certain/quick the doctor was to state that my husband has crohn's. He is very rushed, sees us for less than 10 minutes, and does not even discuss side effects of drugs like Humira. I am starting to worry that perhaps we should see another doctor?

I am not sure if this is the right place to post this, I am just very confused and I was hoping someone has gone through something similar.

Thank you all!

 

[my little penguin]

It’s a lot to take in at first
But your husband has high CRP which means active inflammation
Fistula (which form with Crohn’s disease )
Colitis (inflammation of the colon )
And proctitis (inflammation of the rectum)

All of these are found in Crohn’s disease
Ds was dx at age 7 and now is almost 1
So I understand how it can hit you in the gut
He was on humira for over 5 years
It worked very well for his Crohn’s disease
He is currently on Stelara

Getting a second opinion is never a bad idea
We did but realize your dh has a lot of signs and symptoms of crohns

You can have silent crohns
Meaning damage on the inside while feeling “ok” on the outside

 

[HusbandwithCrohns?]

My little penguin,

Thank you very much for your reply. I know that I am perhaps in denial and trying to cope with this diagnosis. It did not help that the doctor was not attentive and seemed very nonchalant about the medication, I read that your doctor has to have a discussion with you before starting you on Humira and he was very dismissive of my questions about side effects.

What also made me doubt the diagnosis was the fact that the biopsy report indicated that the active colitis and proctitis is "infectious in aetiology," which made me think that perhaps an infection is causing this and his fistula and not an IBD. The report says "no changes of IBD" which is also an unclear phrase?

I guess if it is Crohn's and it does look likely, is it normal for a doctor to start him on Humira right away before trying other less toxic drugs first? most reports indicate moderate inflammation, so why Humira? is it to treat the fistula? should we be more careful before starting this medication?

Thank you very much!

 

[my little penguin]

All drugs are toxic
They just don’t get the same attention
If you read the insert on infant Tylenol
Steven Johnson syndrome /liver failure and death
I gave that one to my kids as babies without a second thought
Docs don’t tend to explain side effects
It’s risk vs benefit
I will take the benefits of biologics any day
Over the risks of immunosuppressants
The drug pyramid has a bottom up
Which starts woth the least amount of risk but also the least amount of benefit
And moves up to the top
Ds has been on them all

As far as pathology
Most won’t check the crohns box unless they find granulomas
Which are only found in 30% of crohns cases ....

 

[HusbandwithCrohns?]

My little penguin,

Thank you very much, you have been very helpful and informative. We are taking it all step by step and praying for the best.

Thanks again

 

[David]

Welcome to the community. I'm so sorry to hear about your husband. This is no doubt a trying time and my heart goes out to you both.

I'll echo what My Little Penguin said and suggest a second opinion. You weren't happy with the doctor and this is a serious situation and you want to be sure of the diagnosis, especially with the biopsy suggesting a possible infectious origin.

Please keep us updated!

 

[HusbandwithCrohns?]

Thank you very much David for your response.

We went to see a different doctor today (came recommend highly by Crohn’s patients).. We discussed my husband’s case in detail. The first thing he said was that he was extremely surprised that this diagnosis took place so quickly and that it should be a process of elimination. He did say the the fistula my husband has is perhaps the only indicator of Crohn’s but it could also be caused by the diarrhea. He was also surprised that the other doctor put him on prednisone right away. He is recommending that my husband does a stool test to figure out what kind of infection he has and to have another colonoscopy in three to six months to try to see if his bowel is doing better. He says that even if it turns out to be Crohn’s, he wouldn’t put him on Humira right away. He does however think that it is not Crohn’s and is caused by infection.

You can imagine now that we are very confused and not sure what to do. We are thinking of seeing a third doctor now since the two doctors are giving us completely different information.

Thank you all very much for your support.

 

[my little penguin]

Definitely see doc three when doc one and two don’t agree
Sorry things are so confusing
Also understand if it is crohns there are two schools of thought
One starts at the bottom
With 5-asa (Pentasa etc..)
These treat the surface of the intestine not the entire thickness
Crohns affects entire thickness
-a small portion of folks are good on just these
Second level is immunosuppressants (methotrexate/6-mp/imuran)
These suppress the immune system so it stops attacking itself
A larger portion will do ok with these but risk of lymphoma for 6-mp/imuran
Top tier is biologic (entivyio/humira/stelara/simponi /remicade )
These work with the immune system to block pathways thought to trigger inflammation

Other docs take pathway two start at the top to get things as healthy as possible as quickly as possible

Neither path is right
Just a path

Also insurance will play a factor
Most require you prove that lower level (cheaper drugs)
Fail first -this can take months to a year it more depending on how long they require you try each drug

Be aware steroids will lower fecal caloprotectin (measurement they use to determine inflammation)


Best of luck with doc three

 

[HusbandwithCrohns?]

My little penguin, thank you very much for all of this information, I am learning a lot from this process. We have booked another appointment with another Crohn’s specialist that came recommend from another Crohn’s patient. Earliest appointment was coming Sunday due to holidays.

Thanks again !

 

[Delta_hippo]

I'm sorry to hear about your husband. I think if I had doc A saying humira now and doc B saying let's do a stool test in case it's infection I would choose B any day of the week. A stool test is quick and easy and will help further diagnosis.

Humira is a serious drug for people with moderate to severe crohns, if your husband needs it then it can be miraculous but if he doesn't then you don't want him on it.

I wish you both all the best

 

[HusbandwithCrohns?]

Delta_hippo,

Thank you for your reply. I feel the same as you. I would like to do everything possible to make sure he is getting the most accurate diagnosis (even if we end up with Humira at the end). I would like to know I tried my best.

Thanks again! I am very overwhelmed by everyone’s response and dedication to helping me.

 

[Delta_hippo]

The other option to possibly consider is anti-map treatment rather than biologics - for some people it seems their crohns is due to immune system not managing to deal with a nasty bacteria called MAP (rather than generally overreacting where you need an immune suppressant). If doc B is thinking maybe infection maybe crohns might be willing to prescribe (not all docs are as its an alternative theory of crohns). If you Google human para website I think the doc on there advises try it for a few months see if it makes things better.

My only other comment is, crohns is a very individual disease, some get it mild, some severe,different diets help some people not others, same for the medications. But, my advice is, don't ignore it, it can be very serious. Whatever route you go, keep on top of the blood tests and poo tests, you need to know the inflammation is under control.

I wish you all the best.

 

[HusbandwithCrohns?]

Dear all,

Thank you all for all your help during this time. We finally got to see a third doctor and he was more adamant than the second one that my husband doesn’t have Crohn’s and what he had was just an infection. My husband did a full blood profile and a stool test so we will await those results.

This has been a confusing journey, but I find myself believing the last two doctors appointment especially since they came highly recommend by Crohn’s patients.

Thank you all again !

 

[my little penguin]

So glad your getting answers
Hope it all works out and the infection clears

 

[Courtswife]

My little penguin,

Thank you very much for your reply. I know that I am perhaps in denial and trying to cope with this diagnosis. It did not help that the doctor was not attentive and seemed very nonchalant about the medication, I read that your doctor has to have a discussion with you before starting you on Humira and he was very dismissive of my questions about side effects.

What also made me doubt the diagnosis was the fact that the biopsy report indicated that the active colitis and proctitis is "infectious in aetiology," which made me think that perhaps an infection is causing this and his fistula and not an IBD. The report says "no changes of IBD" which is also an unclear phrase?

I guess if it is Crohn's and it does look likely, is it normal for a doctor to start him on Humira right away before trying other less toxic drugs first? most reports indicate moderate inflammation, so why Humira? is it to treat the fistula? should we be more careful before starting this medication?

Thank you very much!

I struggle with this so much. I got put on humira 6 years ago and I have been nervous it was the correct decision ever since. I get so scared of medications. Supposedly it is keeping my disease at bay. I never had anything severe either so when I was diagnosed I had and have a lot of denial I just posted about that this morning in mental health support thread.

I often wonder if the Humira is keeping it at bay or causing the symptoms, but I obey and try and trust the doctors. I am always torn between a more natural approach and the fear mongering that the medical community spreads stating all the things that can happen if I didn't have this thing keeping my inflammation at bay. But I think also there is an emotional piece that is the denial and that is the tendency to doubt etc, at least for me. It is a big decision, and feels very scary.

You can always get a second opinion, but most likely you just don't want this to be happening at all, is my guess. My heart goes out to you. <3

 

[HusbandwithCrohns?]

Thank you my little penguin.

Courtswife, I feel your pain, we are still wondering if it is Crohn’s, but all the other doctors we have seen are now telling us to wait to see if something similar happens again before confirming that it is.

We have gone to see a surgeon who deals with fistulas now for a consultation. He was reassuring. He was also surprised that the first doctor diagnosed my husband with Crohn’s even before looking at the biopsy results. He told us to come back after a month with a stool test for calprotectin to see whether he still has inflammation after he has gone off the prednisone. We are now tapering down as per the second doctor’s instructions ( a bit faster than the first doctor). So far not many withdrawal symptoms just some muscle pain.

The surgeon said that his fistula is low and partially healed. He is recommending what I understood would be a lay open fistulotomy? He says if the stool test is okay he can do it by the end of July/beginning of August. Issue is we are moving countries by early September. Would it be okay for him to travel at that point? His fistula is just 30mm Low lying interschpinteric (excuse spelling).

The other thing I’m worrying about is what if it is Crohn’s? And if so are we rushing towards surgery? His fistula does not bother him at all he doesn’t feel it, but what is the risk of not treating it?

Thank you all for all your help and support