Now that my UC is gone fine I have the pouch, I’m dealing with inflammation in other areas. My Sed rate and and C-reactive protein are all elevated and have been since before my surgery. 

My gastro doc has just told me that he doesn’t think it’s related to my previous colitis diagnosis. He sent me to a rheumatologist. She’s checking for lupus, Lyme disease, and diff types of arthritis. My whole body aches, it hurts to bend down or squat bc my knees a and feet hurt. My hips are pretty bad too. 

Anyhow, I’m only 38 and in relatively good shape. Idk what to think or where to go from here. Has this happened to anyone else too?? Do y’all think it’s related to the previous inflammation with my UC? 

Original Post

UC is an autoimmune disorder. Surgery to remove the colon may remove the UC, but it doesn’t remove auto immune disorder from your body. UC was just one manifestation of it- there can be others (for example, ankylosing spondylitis, which is similar to what you are complaining of). Those other autoimmune disorders/inflammation usually get treated with biologics. 

Age and what shape you are in have nothing to do with it. Rolf Benirschke played in the NFL with Crohn’s Disease that wasn’t well controlled for many years. Ditto with Derek Sanderson who played in the NHL at a star level in the 1970s with ulcerative colitis and other autoimmune disorders.

That’s reassuring to hear you say that. But I just feel like I should have kicked this by now, you know? I got one part fixed but my body isn’t agreeing with me on the rest of this mess! 

I’m bummed I guess bc I’m ready to start living again now that my colitis is cured! I’m feeling better in that area but then there’s this to take care of. 

I also feel like if it’s not one thing, it’s another. More so when I explain to my friends or coworkers that I have another doctors appt but this time it’s something new. I’m afraid they’re going to think, “she’s always got something wrong with her,” you know? I don’t want to be the sick person all the time. Or for people to think it’s just bc I want attention. I’m struggling with that part. 

I really feel for you Bubba1028. I don't have arthritis etc but I sure am familiar with  the feeling like sickness has become one's identity. I seemed to have issue after issue. Just when I think something was resolved a new one would come up. I truly started to wonder if I wasn't somehow bringing it on myself.  I still don't know. The whole thing has been quite a process but I feel like I may have come out the other end of this dark tunnel. I am feeling much better in an emotional sense and my body has responded likewise. I am putting this here only to maybe give you some hope which it sounds like you might need right now. Not knowing what's going on is sooo difficult. Best of everything to you....

I think it's wise to get Lupus ruled out. That seems to fit your symptoms very well.  If the softer tissue is affected too fibromyalgia is very similar to lupus, but the diagnosis for that like IBS is often exclusion of other diagnosis.

 

Both are just inflamation of parts of the body.  In your case it may have affected the bowel first and they diagnosed that as UC?  Did you have a pouch due to dysplasia?

Thanks for your responses everyone. I had UC and was recently checked- scope 3 weeks ago- for pouchitis. My pouch looked awesome. 

I did get my blood work back and no lupus markers present. Also, my sed rate has decreased almost back to normal. My ACE level was high which the doc says might indicate sacoridosis (I believe I spelled it correctly). She wants to follow up with a chest CT, to rule it out. I looked it up online and it says it is associated with inflammation of the joints and lungs. I’ve got no symptoms in my chest, no cough, no pain, etc. So I don’t think it’s that, but I’ll still do what she wants to do for testing. It’s better to rule stuff out I guess. My biggest fear is that it’s fibromyalgia. I hear that’s very painful. But the doc didn’t indicate she was worried about that during my appt, thankfully. 

I go back to meet with her this Wed to discuss the results. 

Min the meantime, I went camping with my husband this weekend. We had to leave early bc I was just so uncomfortable on the air mattress, and just count get comfortable. Also, it was a pain in the rear to try and set up the tents and stuff when it hurts to bend down. Hard to even walk to the bathroom. Anyhow, back at home now, showered and going to nap! Haha

how far out from surgery are you? were you on high dose steroids prior to your operation? after my first op I had an adrenal crisis from long term steroid use about a week or two after surgery I could hardly get out of bed, hurt all over, short of breath, etc. may not be that at all especially if havent been on steroids lately however stress of operations and illnesses can cause it as well. idk, just a thought. i did a long taper of steroids over 2-3 weeks and after the first dose it was like a night and day difference. again this is just one of those "IF your surgery was very recent and the steroid usage." may not be that at all

She said it's all related to the body's inflammatory response due to the colitis. When I met with my doc, she suggested I start biologics, bc of two reasons: 1) my bone density test came back lower than it should for someone my age, so she doesn't want to put me on pred to kick this inflammation and 2) I can't take NSAIDS like large doses of ibuprofen like she would normally prescribe as a first attempt to kick the inflammation. 

So, last week I started with Cimzia, which is a biologic similar to Humera or Remicaide. Cimzia is okay to take if pregnant, which is why we chose this drug over the Humera or Remicade (and my hubby and I are trying to get pregnant). It requires two shots for a loading dose. I take another loading dose next week. And from there, it's one shot every 2 weeks. 

And it works! I started last Thursday (one week ago) and I feel almost 100% better. It's amazing. Here's hoping it will continue. 

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