Yet another diagnosis - Crohn's

[Carebear]

Well the doctors finally determined the cause for my weight loss and muscle weakness.  I met with my Family Physician on Christmas Eve, and was told that I have Crohn's disease.  Not the best Christmas present.   

I will see the GI specialist in the new year to discuss treatment.  This one really caught me off guard.

So I came here to purge myself of my concerns and to hear from others who live with Crohn's as well.   Thanks for lending me your ear.

That makes seven autoimmune diseases now...drat! 

[Ark mom]

Oh, Carebear!  What a crummy Christmas gift for sure.  I'm sorry to hear this and wish I had some experience in that area to offer you advice.  Hopefully others with Crohn's will write. 

I hope that you get treatment for it soon so that your symptoms ease for you.  Peace and hugs. 

[susanep]

Bless your heart. These things just keep on giving don't they?

I don't have anything to really offer. A nephew of mine years ago was told he had Crohns, but then he was sent to Vanderbilt in Nashville, and they said he didn't.

 I just know he lost weight too, and very sick.

susanep

[anita]

Carebear,

How did they determine this?  I always thought a GI was the one to diagnose this after colonoscopy biopsy results.

Maybe you'll get a different take on this when you see the GI.

[Winnie]

Well my blood work showed that I had ulcerative colitis until I changed my diet and now the inflammation markers are normal.  I had pain and constipation, not the normal symptoms for this disease and my biopsies were all negative.  So continue to think positive and if I were you find triggers that make your symptoms worse and play around with your diet.  My stomach is much better since I took dairy, gluten, peanut and eggs out of my diet.  I am not normal but better!

Winnie 

[Lesley_x]

Hi Carebear, I am currently suspected of having small bowel crohns and my calprotectin has showed marked inflammation which is increasing but they found nothing on scope (though steroids could cause a false negative) so I'm having to get an MRI to check small bowel.

Are you symptomatic? What treatment are you going to get? How did they diagnose you?

I'm on prednisolone and the improvement in my symptoms has been unbelievable but rheumatologist wants to get me onto a steroid sparing agent (probably azathioprine). GI says no since he doesn't know where the inflammation is coming from though! frustrating.

[Nancy60]

A friend of mine who was diagnosed with RA/possible Lupus/Sjogren's/Fibro  was later diagnosed with Crohn's and once she got the Crohns under better control her jointpain really improved dramatically.  They eventually took the RA/possible Lupus diagnosis away and felt her arthritis issues were due to the Crohns.  Getting the correct treatment made a difference for her.  (she had tried all the standard RA/Lupus meds and some of the big guns too with only minimal improvement).  Maybe getting treatment for this will make a difference for you too!  Keeping my fingers crossed for you.

Nancy

[Aussierose]

Hi Carebear,

I was diagnosed with Crohn's almost 20 years ago. I will say at the outset Crohn's has barely troubled me but I have several members of my extended family with Crohns and it varies widely in it's effects. One has needed surgery to remove affected bowel but most manage their disease with medication, including prednisolone.

My Crohn's was diagnosed 'backwards'. I had anaemia which was traced to Vit B12 deficiency. The B12 deficiency was so bad I had developed peripheral neuropathy from it. B12 deficiency is common in Crohn's if it is the ileum that is affected - make sure you are tested. The GP ran some tests and discovered I was not absorbing B12 so sent me to a GI specialists. He did a colonoscopy with biopsies and a contrast xray to make the diagnosis (as I said this was 20 years ago). I had one course of meds (6months) and nothing since. The B12 injections are ongoing. Any symptoms are very mild which I mostly ignore.

I hope your Crohn 's settles quickly. Good luck.

[Carebear]

Carebear,

How did they determine this?  I always thought a GI was the one to diagnose this after colonoscopy biopsy results.

Maybe you'll get a different take on this when you see the GI.

Hi Anita,

You're right.  I hadn't explained myself very well earlier as per brain fog.   

I am seeing a GI specialist, and have had an endoscopy, CT scan of the abdomen and a colonoscopy.  When I last saw the GI specialist, he asked me if I wanted to see him or my family doc to discuss the results.  Well, I didn't think they would find anything so I decided to see my family physician because it would be easier to get an appointment.  And because I was sure the results would be negative, she and I would need to talk about what to do next.

The tests indicate that it has only affected the ileum.  I remember words like inflammation and thickening.  That's as much as she could tell me, so now I wait patiently for the GI specialist to return from Christmas vacation.

[Carebear]

Well my blood work showed that I had ulcerative colitis until I changed my diet and now the inflammation markers are normal.  I had pain and constipation, not the normal symptoms for this disease and my biopsies were all negative.  So continue to think positive and if I were you find triggers that make your symptoms worse and play around with your diet.  My stomach is much better since I took dairy, gluten, peanut and eggs out of my diet.  I am not normal but better!

Winnie 

Hi Winnie,

You have made a good point about diet.  I just found an app for my phone that will allow me to keep of track of my symptoms, what I'm eating, and how the two may be related.  I have been gluten free for many years because I am celiac, and soy has been out of my diet for a year or so too.  It will be interesting to see if I can discover any food triggers.   

[Carebear]

Hi Carebear, I am currently suspected of having small bowel crohns and my calprotectin has showed marked inflammation which is increasing but they found nothing on scope (though steroids could cause a false negative) so I'm having to get an MRI to check small bowel.

Are you symptomatic? What treatment are you going to get? How did they diagnose you?

I'm on prednisolone and the improvement in my symptoms has been unbelievable but rheumatologist wants to get me onto a steroid sparing agent (probably azathioprine). GI says no since he doesn't know where the inflammation is coming from though! frustrating.

Hi Lesley,

I have had symptoms for a few years that could be attributed to Crohn's,  but they may also be related to my Sjogren's and RA.  I've had weight loss, muscle weakness, fatigue, nausea, and the most excruciating pain in my abdomen (just below the belly button).  The pain has been increasing in intensity, frequency and duration in the last two months.  I had a two day "event" recently that brought me to my knees.   

I've been taking Methotrexate for over a year now for RA, and sometimes it is also used to treat Crohn's.  It has helped my joints but obviously not my GI system.

[Tivia]

Bless your heart. These things just keep on giving don't they?

I don't have anything to really offer. A nephew of mine years ago was told he had Crohns, but then he was sent to Vanderbilt in Nashville, and they said he didn't.

 I just know he lost weight too, and very sick.

susanep

When I first got sick as a kid with inflammatory bowel disease, It was dx'd as Crohn's and  Ulcerative Colitis, needless to say I was extremely sick. Over the years after years on things like Imuran, Remicade, Asacol, pred, Sulfasalazine enemas and suppositories ..it finally went into a long remission.  Diet is very important as is not stressing out, having all these debilitating diseases at the same time takes a toll, but hang in there.

[stprdi]

Regarding your gums ... would changing toothpaste help.  I have heard Biotene is effective for people with mouth/gum issues.  I have to be careful with mine because sometimes my regular toothpaste sets my mouth on fire.  There are days when under my tongue feels just raw. 

[harlin]

Hi Carebear,
Wow, so sorry to here this. How come we keep getting more and more?

I just don't understand. I have not been dx with Crohns but fairly certain I have it. Have all the symptoms. I really dread eating out (my favorite pastime). I always eat out when I am done shopping and my next stop is home. Within 15 - 20 minutes it hits me. I have tried everything.

Keep your chin up!
Blessings, harlin