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Crohn's flare up without GI symptoms?  

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braveness23
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July 1, 2020 3:26 pm  

Hi all,

I had my entire colon removed 4 years ago and my rectum and anus removed two years ago.  These were the only parts of my GI where I ever experience Crohn's.  However during flair ups I would also experience fatigue and inflamation in my joints.  I also have spots of scaling of my skin which I have assumed are part of Crohn's but I've never gotten a clear confirmation of this.  

Since my surgeries I have not experienced one speck of Crohn's in my GI tract.  However I have recently been experiencing an increase in fatigue, joint pain and my skin issues.  It's not bad enough to make me miserable but it is definitely noticeable.

Has anyone else here experienced Crohn's flair ups that don't have any GI symptoms?  Is that even a thing?  My General Physician told me to see my GI doctor but ... no GI symptoms.  

Incidentally, this is happening at a time of year that I would commonly have flair ups when I had my lower GI.  The transition into Cincinnati's hot, humid summers really stresses my body out and even brings on mild depression.  I'm supposed to be in Canada swimming in Georgian Bay right now but the borders are (rightly!) closed and I wont be getting my cool, dry fix this summer.

braveness23


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Dona
 Dona
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July 1, 2020 5:20 pm  

Hi Braveness,

 Just a thought. If you are having joint and skin problems, they might be unrelated to your Crohn's. Might be a form or rheumatism or psoriasis, both of which I think are auto - immune problems too.

I say this because although I had ulcerative colitus, my mother suffered from both of those other problems. The good news, would be if you could consult a doctor specializing in these , it could possibly lead to a different treatment and outcome altogether.

 

We were lucky enough to visit Georgian Bay the May before last. What a beautiful place. Too cold to swim then, but the tranquilly was wonderful.

Best of luck ... lots to learn. And yes, good to stay on one side of the border or another, wear a mask and attempt to stay upbeat.

 

 

 

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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braveness23
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July 1, 2020 5:32 pm  

Thanks, Dona.  I was under the impression that Crohn's, rheumatism and psoriasis were all essentially different manifestations of the same core immune system disorder.  Many of the biological drugs such as Stelara are commonly prescribed for each of these.

Georgian Bay is magical.  Right now the water is getting close to being perfect.  My family has owned an island near Parry Sound since 1948 and I have been up nearly every year of my life. 

 

Here is our island:

@45.298465,-80.2866959,1089m/data=!3m2!1e3!4b1!4m5!3m4!1s0x4d2b990a56456877:0xde90c2cf8fa18d9f!8m2!3d45.2989151!4d-80.2841181" target="true"> https://www.google.com/maps/place/Milner+Island

 

 


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braveness23
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July 1, 2020 5:34 pm  

Weird, the link isn't embedding correctly


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Dona
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July 1, 2020 6:38 pm  

Milner Island must be close to where we were. Our friend owns a house and the island ( small island) called :Knightsleigh . We launched from Perry Sound. So I do know the general area. So beautiful... sunsets were amazing and the bird life was showing up. Wonderful for you to have been going there your whole life. Our friend lives in Toronto.'

Ah.. I found it, you are a bit to the west of Knightsleigh.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Dona
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July 1, 2020 6:40 pm  

P.S> my mom's time was before all the biological infusions and all the 'maubs'. They used sun treatments and tar ( !!!). So awful. She never had any gut issues, but as you said they are all related. I'm the only other one in my family with any of these.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Lynne
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July 1, 2020 7:52 pm  

https://www.hellobc.com/stories/visiting-milner-gardens-and-woodland-on-vancouver-island/

Hi Braveness.  I can relate on several fronts.  I've spent summers around SE Ohio and it's soo humid and hot! I've also lived in the PNW for many years so can also somewhat guess what Milner Island is like.  If this link to the gardens/woods is correct, it is stunningly beautiful.  I can see how you would crave being back there!

I had my colon out and a jpouch many years ago and just got an ileostomy in Nov.  The last couple years before my ileo surgery I did have some joint and skin (hives) issues that I think were all related to my immune system.  I'm doing well now after a scare of possible PPG post surgery that really pushed me to focus on overall immune health which I believe is still tied to the health of my gut even w/o a colon - ie trying to ensure no leaky gut, healthy mucosal lining in small intestine, highly nutritious/easy to digest foods, etc.  It's frustrating that our modern medical system is so siloed.  You might benefit from talking to a really good primary care or naturopathic doc who can view your health in it's entirety.  Sending you all the best wishes!


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VeganOstomy
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July 2, 2020 9:41 am  
Posted by: @braveness23

Has anyone else here experienced Crohn's flair ups that don't have any GI symptoms?  Is that even a thing? 

These are called "Extraintestinal Manifestations" and they are quite real and recognized. However, as Dona pointed out, they could be unrelated to Crohn's so it's best to check with your doctor to find out more.

I had a lot of symptoms outside of my gut when I was flaring: mouth sores, joint pains, eye inflammation, back spasms, muscle soreness, etc. 

My Crohn's was diagnosed BEFORE my GI symptoms, but of course, after my GI went to hell, then they were a persistent problem for me until my surgery.  

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SqueakyandLiza
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July 7, 2020 2:59 am  

Hi Braveness,

I have been having what I think is problems with my Crohn’s lately. And I also am having a bit of a rash on my arm and some joint pain. I didn’t even think about it all being related until I read your post. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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