Crohns or not Crohns, an annoying 2 years or misdiagnosis

[HorologyM]

Hi all,

I'm happy to find a great forum so I'm wondering if anyone can relate to my story as in my opinion it doesn't add up. I just hope I'm not in denial.

Since October 2019 I have been experiencing a lot of lower abdominal pain just below my naval. Sometimes it can be very intense and frightening and other times it is an annoyance.
It is not there all the time. Sometimes I can have a couple of days without any discomfort.
I have no problem with going to the toilet. I am pretty much a once a day guy. I very very very rarely have diarrhea although sometimes the stool has been stringy and not thick. I have never passed blood.

I actually find that after I urinate I start to get the pains.

From October 2019 until June 2020 I had various visits to the doctor and had numerous blood work, stool samples urine samples CT scan, MRI. All came back fine.
In July 2020 I had a colonoscopy. 3 polyps were removed and tested (came back innocent) they also found what they refer to as a small superficial inflammation area. I asked where this is and they said its on my right side. I have never had or do have any pain or discomfort in that area.

I was asked if I use a lot of ibuprofen which I don't and if Crohns disease is in the family. My mother has Crohns since the mid 1990's and has a stoma.

I was then referred to the hospital specialist in October 2020. More stool samples were taken and this time I was told that there was inflammation detected, I don't recall the levels. At this point I was instructed to take Entocort for a few weeks. It did nothing for me after completing 75% of the course.

I then had a procedure which involved me to swallow a pill sized camera and pass normally. The results came back with nothing different other than the small superficial inflammation area.

I was then provided with Budenoflak which did actually make a difference. Once I came off of it the pains started to the return.

The specialist is now 100% convinced I have Crohns and is now wanting me to take Purinethol which is where I am having concerns. From my understanding this is a heavy drug and not something that you should take if you don't need to. I just feel that once he found out about my mother he seems to think I have it.

For the last couple of years I was very stressed with work and it has brought on a big level of anxiety in me which has affected my life. As I was made redundant at the end of last year I am now wanting to use the time to feel better. My specialist bluntly told me though that no amount of stress can cause inflammation and that is the difference between Crohns and IBS.

I'm just really curious if other people have the same symptoms that I have because I am finding it difficult to find people that do.

Sorry for the rant but I just feel a little stuck

 

[my little penguin]

So crohns can be present (doing damage ) on the inside without any outwards signs
Others have lots of outside symptoms so that can be easier

crohns can happen with constipation or diarrhea depending on the location
Form matters just as much as number of bms a day
Bristol stool chart can help

having a pill cam after taking a steriod (buesonide is a steriod ) may have muddied the waters on what is going on .

inflammation is not caused by stress
There can be other causes such as different diseases but stress isn’t a cause

if you were not having any outwards signs prior to meds doesn’t mean damage isn’t being done

my kiddo was dx at age 7 (now 17) no family history of crohns (lots of ibs that is not under a gi care so … who knows )

can you get a second opinion (depending on the country your in ) or record /pathology review at another hospital /Gi ??

My kiddo was a once a day kid but was considered constipation once we learned about Bristol chart
No major symptoms just things found on scopes
But symptoms have progressed over the years

6-mp is an immunosuppressants but low on the crohns pyramid of drugs

other option same level is methotrexate
Which is what they prefer to use in young male kids or teens in the US now for crohns
Next level is biologics
My kiddo has been on all meds over the years
Least side effects with biologics and most healing of intestine

happy pretty pink intestine with no inflammation is the goal
Leaving inflammation fester is never a good thing

He currently takes Stelara and methotrexate but has mild crohns and moderate juvenile arthritis

 

[HorologyM]

So crohns can be present (doing damage ) on the inside without any outwards signs
Others have lots of outside symptoms so that can be easier

crohns can happen with constipation or diarrhea depending on the location
Form matters just as much as number of bms a day
Bristol stool chart can help

having a pill cam after taking a steriod (buesonide is a steriod ) may have muddied the waters on what is going on .

inflammation is not caused by stress
There can be other causes such as different diseases but stress isn’t a cause

if you were not having any outwards signs prior to meds doesn’t mean damage isn’t being done

my kiddo was dx at age 7 (now 17) no family history of crohns (lots of ibs that is not under a gi care so … who knows )

can you get a second opinion (depending on the country your in ) or record /pathology review at another hospital /Gi ??

My kiddo was a once a day kid but was considered constipation once we learned about Bristol chart
No major symptoms just things found on scopes
But symptoms have progressed over the years

6-mp is an immunosuppressants but low on the crohns pyramid of drugs

other option same level is methotrexate
Which is what they prefer to use in young male kids or teens in the US now for crohns
Next level is biologics
My kiddo has been on all meds over the years
Least side effects with biologics and most healing of intestine

happy pretty pink intestine with no inflammation is the goal
Leaving inflammation fester is never a good thing

He currently takes Stelara and methotrexate but has mild crohns and moderate juvenile arthritis

Many thanks for the reply,

The Pillcam and the colonoscopy were both done before I took any kind of meds.

I believe you are right and a second opinion is a good idea. I'm living in The Netherlands.

 

[Lady Organic]

Hi and welcome. Yes for a second opinion. Make your best to find a clinic or hospital with a gastroenterologist who will:
1) scope and take biopsies and, (if diagnosed with help of finding lesions compatible with IBD)
2) will be the one giving you a treatment from his/her observations + microbiology report and,
3) will be able to keep long term fallow up and assess treatment response with future scopes.
ideally, you want a ''all-in-one'' GI to take care of diseases such as IBD. One who scopes, treats and fallows up closely.

 

[Scipio]

I believe you are right and a second opinion is a good idea. I'm living in The Netherlands.

In the Netherlands you may wish to consult with Dr. Geert D'Haens and his team at Amsterdam Medical Center. They are among the top IBD specialists in the world.

 

[HorologyM]

In the Netherlands you may wish to consult with Dr. Geert D'Haens and his team at Amsterdam Medical Center. They are among the top IBD specialists in the world.

I will ask my doctor for a referral, thanks a lot.