Sarcoidosis

[Pauline Totten]

Hi guys I am new to this forum and was just wondering if anyone else has also been diagnosed with sarcoidosis along with crohns. Both my husband and I have crohns and my husband was diagnosed with sarcoidosis 20 years ago and I was diagnosed with sarcoidosis just over a year ago. I was told the sarcoid was related to the crohns as it is also an autoimmune disease. Just interested in seeing if anyone else has been diagnosed

 

[Terriernut]

Oh dear. I had to look that one up. As if Crohns wasnt bad enough for the both of you! At least you understand one another. Bless your hearts.

How was it you were both diagnosed? And what are the probabilities of you both getting that?! (are you one person in two bodies young lady?!)

 

[Pauline Totten]

My husband had no sarcoidosis symptoms and was picked up on a routine chest x ray. I was diagnosed following an ultrasound showed an enlarged spleen. I then had a lung biopsy done at Papworth. It's a very frustrating disease as crohns and sarcoidosis can have similar symptoms but not the bowel ones. We were diagnosed with crohns within a few months of each other. It has been really helpful as we both understand what each other is going through. I have had a lot of surgery and I can't fault my local hospital here in Bedford

 

[Terriernut]

My grandbaby was born in Bedford hospital! :heart:

Thank goodness you two can support each other! I often thought of trying to meet a fellow crohnie just so someone would have a CLUE what it was like.

But I cant say I've seen someone with this on this forum...perhaps one of our moderators or admin staff know. I'm just glad you are here and hope you can find many of us to chat to when you both need it.

 

[doctor's mom]

My husband had no sarcoidosis symptoms and was picked up on a routine chest x ray. I was diagnosed following an ultrasound showed an enlarged spleen. I then had a lung biopsy done at Papworth. It's a very frustrating disease as crohns and sarcoidosis can have similar symptoms but not the bowel ones. We were diagnosed with crohns within a few months of each other. It has been really helpful as we both understand what each other is going through. I have had a lot of surgery and I can't fault my local hospital here in Bedford

How are both of you doing? What medications are you taking? I've been researching on connections of sarcoid and Crohns and stumbled upon your post.

 

[Pauline Totten]

Hi we are both doing ok apart from joint problems. I was recently told I had two fractures in my spine which the consultant said could possibly be sarcoid related. I am not currently taking medication for either illness but my husband is on azothioprine. I don't know of anyone else who has been diagnosed with both diseases

 

[doctor's mom]

according to this case report from JRSM
http://shortreports.rsmjournals.com/content/3/2/10.full
The incidence of both sarcoidosis and Crohn's disease co-existing in a patient has been suggested as early as 19471 with very few definite cases reported in the literature. Fries et al.2 produced two cases of both inflammatory bowel disease and sarcoidosis, but were unable to identify a link between the two conditions. These granulomatous disorders are often reported as ‘mimicking’ one another, with up to 10% of patients affected by sarcoidosis to have alimentary tract involvement3 and approximately 40–50% of patients with inflammatory bowel disease4,5 to demonstrate respiratory symptoms.

 

[doctor's mom]

Pauline! If you go to "Extra Intestinal Manifestation" forum you'll see some people have both, just like you and your hubby. I think many "crohnies" also undiagnosed with sarc, especially with coughing problems. My daughter had her Xray done before her gallbladder removal surgery and now, after seeing a pulmonologist, there is a possibility she has it.