Abdominal pain even with remission

[teeny5]

I'm not sure if i have asked this before, but does anyone have abdominal pain even when in remission?

My struggle is I have been in remission for quite some time, but still have pain. Don't get me wrong I am not complaining, I am very thankful for the remission, but what is the deal???

If I walk around too much...I have pain. If I over exert myself...I am in pain. I could be eating totally safe foods, but be kind of stressed out...I feel pain. I do something semi-physical at work...I feel pain. Sometimes I get vaginal spotting, sometimes not. WTF.

Has anyone experienced this? Am I doing something wrong? My most recent blood work is good and my last gyno exam was good. So physically i am in great health, but i still have pain. Even my last scope was great...scarring, but no inflammation.

Is the pain related to Crohn's??? I just feel like I have been in remission for long enough that i should be able to live a normal life. However, I still find that I cannot do as much as others because I get exhausted or start to have pain. So hard to explain to people because you look totally normal on the outside. Inside you feel 80 years old.

Any insight is greatly appreciated.

 

[ronroush7]

Have you told the doctor of your symptoms? If all of your symptoms look fine, they may say you have IBS. If you feel like more is going on, keeping pressing until you get answers. Let us know.

 

[tots]

Is it still really remission?

My Dr asked me what I expected from remission, I said a salad and a bowl of Cherrios. His
answer? We all have diet restrictions, my response- then why are we doing the Remicade and calling it CD?

Lauren

 

[aypues]

Like ronroush7 said, irritable bowel, a common illness, can coexist with an uncommon illness, Crohn's.

 

[teeny5]

I have mentioned it before, but he feels since its not all the time and not a lot of pain to not worry. He feels it is more my body telling me I'm doing too much. I guess I just get frustrated that in my thirties I can feel like I'm 80 years old. I thought yay remission I can do anything! Apparently not the case...yes I can eat almost anything, I have normal poops, blood work is fantastic, scope was clean....but, don't over exert yourself or your angry Crohn's monster will remind you it still exists. IBS has never been talked about, I might need to look into it.

Just annoyed the past few days...sometimes I get bitter about having the disease and the things that annoy me are: what I've mentioned here, the never ending pills, fear of eating certain foods, and the fear of going into a flare at any moment.

 

[ronroush7]

Sending support

 

[aypues]

I have mentioned it before, but he feels since its not all the time and not a lot of pain to not worry. He feels it is more my body telling me I'm doing too much. I guess I just get frustrated that in my thirties I can feel like I'm 80 years old. I thought yay remission I can do anything! Apparently not the case...yes I can eat almost anything, I have normal poops, blood work is fantastic, scope was clean....but, don't over exert yourself or your angry Crohn's monster will remind you it still exists. IBS has never been talked about, I might need to look into it.

Just annoyed the past few days...sometimes I get bitter about having the disease and the things that annoy me are: what I've mentioned here, the never ending pills, fear of eating certain foods, and the fear of going into a flare at any moment.

When was your last MRE? Are your iron and ferritin levels being checked too? Albumin good?

 

[tots]

I hope they can get a handle on it quickly for you!


Lauren

 

[Charlotte.]

I have mentioned it before, but he feels since its not all the time and not a lot of pain to not worry. He feels it is more my body telling me I'm doing too much. I guess I just get frustrated that in my thirties I can feel like I'm 80 years old. I thought yay remission I can do anything! Apparently not the case...yes I can eat almost anything, I have normal poops, blood work is fantastic, scope was clean....but, don't over exert yourself or your angry Crohn's monster will remind you it still exists. IBS has never been talked about, I might need to look into it.

Just annoyed the past few days...sometimes I get bitter about having the disease and the things that annoy me are: what I've mentioned here, the never ending pills, fear of eating certain foods, and the fear of going into a flare at any moment.

No idea if these ideas are helpful but what about SIBO, lactose intolerance/fructose intolerance ect.? SIBO can make weird symptoms, I remember, was quite painful as well (after eating, so normally though out the whole day), but different from terminal ileum pain that I have now.

 

[Cat-a-Tonic]

I wonder if it might be something like endometriosis? I don't know much about it, but I believe I've read that it can only be diagnosed via laprascopy, and it's related to the lady parts, so that could potentially account for the spotting as well. It could also explain why you're having pain even when the IBD is in remission, as it's apparently a fairly painful condition. It's at least something to ask your doctor about. I hope you can get things figured out!

 

[teeny5]

All blood work is great, I had a complete blood panel done a few months ago.
I have never had a MRE, had a CT scan when diagnosed...about 8 years ago.
I am lactose intolerant so I avoid dairy.
I've never looked into SIBO or endometriosis....hmmm...worth a check I think.
Don't really have pain after eating so much, more when I get over exerted from physical activity than anything else. Like my body says...."oh, you thought you could do all that, silly girl."

 

[aypues]

All blood work is great, I had a complete blood panel done a few months ago.
I have never had a MRE, had a CT scan when diagnosed...about 8 years ago.
I am lactose intolerant so I avoid dairy.
I've never looked into SIBO or endometriosis....hmmm...worth a check I think.
Don't really have pain after eating so much, more when I get over exerted from physical activity than anything else. Like my body says...."oh, you thought you could do all that, silly girl."

Insist on a MRE asap!! 8 years is way too long between imaging tests. There is no other way to really examine disease in the small bowel.