Does anyone else deal with severe denial

[Courtswife]

I was dx with Crohns about 6 years ago and I don't know if its something the doctor said that stayed with me. After my test results she stated initially I had acute symptoms and perhaps it wasn't crohns, and then she came back and said actually.... So that lack of her being sure feels like it stayed with me. I am on Humira and sometimes I don't know if it's killing me or helping me. I never know when my symptoms are my disease or not, or when to give myself "credit" for dealing with this regularly. I've never had surgeries, and Diarrhea isn't my primary presentation. I get episodes of severe bloating, trapped air, can hear my stomach gurgling and basically with eating I can eat one thing one time and be fine, and another time and feel like death. Lately I'm dealing with a lot of pain in my muscles and joints, weird muscle cramps and aches, tingling, flushing episodes, temperature regulating difficulty and tingling in extremities. So I freak out I have some other auto immune like MS. OR always thinking its something else.

Do you chalk it up to Crohn's do you get other tests done? And I guess since I usually look strong most of the time when I do say I can't do something I end up feeling guilty. It isn't in my nature. So emotionally I try to live like I can do what other people do.

I'll give you an example: My Crohn's hasn't felt like it's really been acting up lately, aside from fatigue and it's literally day to day. One day I can be fine, the next can be so uncomfortable in a variety of ways.

So last night I went to the casino. I ended up playing for hours and not eating for the longest time so I ate at Bobby Flay's Burger palace.... and the burger was rich and greasy. I just had a mood for a good old fashioned burger and of course the bun was topped with sesame seeds, I usually ask for one without, but like I said had been doing so well. Since I was starving I literally inhaled the thing, and then had a donut (it's sort of tradition) to keep me awake on the way home. I had a lobster roll earlier. I took myself on a date. And today I am paying for it immensely. I woke up aching everywhere like I have the flu, with severe stomach pain, and hurting everywhere and feeling like it's my fault. And also how can I feel like I have a terrible hangover and I didn't even have a single drink. I did stay up late, but again, can't I go out and have fun once in awhile without having this issue? If I tried to eat less greasy like a salad that can destroy me as well. But I do know rich red meat is usually a trigger for my crohns.

I am guessing people on here will be like, "are you insane" and "duh", but sometimes I can do this and be fine. So it's more the emotional idea I want to eat like others and be able to do things like others. So again denial. I don't want to go around like a gremlin with special instructions. And now even writing this I feel sad. I come from a background of trauma and neglect so it's hard for me to validate my feelings sometimes.

Anyone else here ever feel like this or relate?

 

[curlywurly]

Hi Courtswife
You don't say how old you are I assume you have had the IBD tests blood stool and Colonoscopy. I was also diagnosed six years ago too.
I was quite bad back then the runs and weight loss unfortunate for me the usual meds have not worked and they have made me ill.
My main symptom now is constipation bloating &pain. I know how it can get you down when you can't enjoy yourself I think you know that this disease effects everyone different and I don't go out socially very often these days I am lucky have an understanding hubby who knows how tired I get. I will say you are not insane and not alone we all know it is a bugger of a disease but try to keep your chin up

 

[dogmomto2]

I never know when my symptoms are my disease or not, or when to give myself "credit" for dealing with this regularly. I've never had surgeries, and Diarrhea isn't my primary presentation. I get episodes of severe bloating, trapped air, can hear my stomach gurgling and basically with eating I can eat one thing one time and be fine, and another time and feel like death. Lately I'm dealing with a lot of pain in my muscles and joints, weird muscle cramps and aches, tingling, flushing episodes, temperature regulating difficulty and tingling in extremities. So I freak out I have some other auto immune like MS. OR always thinking its something else.

Hi Courtswife. Yes, I can totally relate. Same bloating, trapped gas, stomach gurgling , muscle/joint pain and inconsistent reaction to food. I do get diarrhea, though, every morning when I wake up. I was diagnosed 30 years ago, and was in remission for a very long time (until 2018, when my entire large intestine started to bleed). Now I'm on Entyvio and prednisone hoping for remission again soon. Sometimes it feels like the constant dull pain in my colon and muscles/joints is going to drive me absolutely mad; it's like a constant reminder that my body's self-destructing. Sometimes it doesn't bother me at all and I just deal. Good luck to you and all of us who suffer from this dreadful disease!