GI issues just suck…unless you’ve lived it, it’s hard to tell people what it’s like living with constant cramping, bloating, trips to the bathroom, indigestion…you name it.
I have CVID enteropathy…kind of like Crohns but not the exact same. It’s due to my immune deficiency and that I have no IgA, which is what protects the lining of the GI system.
I spent more than 12 years on budesonide…which is supposed to be used a short term steroid treatment. Until it also started to lose effectiveness and my symptoms were getting worse again. My doc tried for years to get me to do Remicade but I was really nervous as I tend to have bad reactions to some drugs (I was on IVIG and got aseptic meningitis 3x).
While you wait for more testing…and hopefully better treatment options, one thing I found I (and some other friends with similar issues) ended up doing with our diet was FODMAPs. I had actually self regulated to eating that without even knowing it was a formal plan…mostly because those were the foods that didn’t trigger symptoms as much.
I also found that doing yogurt or some other more natural probiotic makes a big difference. I go with yogurt…but not the crappy high sugar ones. Greek yogurt with lower sugar and higher protein. A friend does kefir. I used to hate yogurt…but I eat it almost every day…and it makes a difference for me.
I finally ended up starting Entyvio at the beginning of the year…my doc wanted me off steroids, and they weren’t working anyway. I did a bunch of reading and Entyvio is gut selective, so it seemed to be the best options for me. OMG I wish I started it sooner!! I am actually off steroids since July 4 (in 12 years the longest I could get off the steroid was about 5 days). I’ve had very minimal side effects so far and my GI symptoms are much better! I go for a endoscopy Monday so they can see if the scope looks better given the symptoms are so much better. Had to fight the insurance a bit, so they want some documentation to keep me on the drug.
Good luck…the fatigue might be a function of the inflammation and if you are losing weight, you are not getting enough nutrients/calories absorbed.