Can anyone relate?

Where to begin.... I'm a 32 year old wife, mother, and nurse. I was diagnosed with Crohns in 2007 when my first child was 5 months old. Great timing huh? I've been in and out of the hospital, ER, lab, radiology department, and so many doctor offices constantly since then. I've had one resection of my terminal ileum and ileocecal valve. Been on almost every medication out there; prednisone, entocort, pentasa, remicade, Imuran, humira, methotrexate, Protonix, questran, sulfasalazine, flagyl, cipro, and most recently cimzia. I still struggle with diarrhea, bleeding, abdominal pain, nausea, joint pain, and other infections from being immunosuppressed from crohns meds. I'm just recovering from pneumonia and have had to stop my meds. The fatigue I'm experiencing is overwhelming! It's hard to even convey to my husband and others about how really awful I feel. Daily life seems incredibly hard between the fatigue, diarrhea, rectal and abdominal and joint pain. It's depressing that the lady who works the pharmacy counter knows me by name and starts gathering my prescriptions before I even speak. I feel weak, depressed, guilty for burdening others, and frustrated. I have 2 precious kids and an awesome husband who deserve so much more. I am hoping for better days ahead. Thanks for letting me vent.

I can absolutely relate and my pharmacist knows my name too, I'm practically a daily customer it's crazy. The Fatigue can be awful and crippling. Have you ruled out iron, b12, thyroid, vit d deficiencies? Those are common causes but diarrhea and loss of electrolytes and immunosuppressive meds can tear us apart.

I wish i had good advice but I'm currently disabled due to my fatigue. Try to pace yourself, get the best sleep quality you can because the body repairs itself during that time.

I'm due to have my iron levels checked again. I had to get Iv Venofer (iron) a couple months ago bc my levels were low. My B-12, thyroid have always been fine. My Vit D was low before but last time it was checked it was on the low end of normal. I take oral iron and Vit D as well. My brain wants to do so much more than my body will allow. It's super frustrating. My husband is super athletic and I wish I could share a lot of his hobbies but it hurts too much.

Sounds like we are in the same boat. It's very frustrating, have you seen a chronic fatigue syndrome specialist? You may have ME/CFS or fibromyalgia.

I am fairly certain Mycoplasma pneumonia caused my fistulas and resulted in my surgery to remove my Iliocal valve. It sounds as if you might have the same problem.

It can cause Crohns like symptoms all by itself, according to a doctors treatment of the pathogen.

Just Google Mycoplasma pneumonia Crohns, you will see a lot of info.
Dan

Crushing fatigue, hip pain, bouts of pneumonia, gut inflammation. Yes it is all familiar to me. It is gone now.

Find a way to get rid of it. I now realize how bad this stuff is. I didn't to begin with.

Dan

Hi and welcome.

I've nothing to add. I trust better days are ahead.