Struggling with the after effects of intestinal surgery for crohns

Posted by sassgardian21 @sassgardian21, Feb 27 10:08pm

I've struggled with this disease since I was very young, I can't remember a time before my symptoms, but I was mistreated, disbelieved, and misdiagnosed until I was in my mid 20s. I had a bowel resection and roughly 12 inches of necrotic bowel removed, including the removal of my iliocecal valve. Since then I've been on Remicaide, Infliximab, Entyvio, Humira, and Cimzya, and over the decade have continued having symptoms but during colonoscopies have been unable to find active disease. Still, I've struggled with chronic fatigue, enteropathic spondylitis, Gerd, insomnia, Hidradenitis Suppurativa, an extremely hypersensitive gastrocolic reflex, incredibly painful, frequent, and highly acidic diarrhea, and the chemical burns around my rear that have resulted from the increased level of hydrochloric acid in my bowel. The pain is chronic, and intense. My doctors are generally pretty dismissive, lumping my symptoms into 'general discomfort' and in the past even having labeled me as drug seeking. I pass food I've eaten withing 2 hours, in states that look significantly undigested, and sometimes my bones/ joints are so weak or swollen I can't move on my own. I also often lose control over the muscles in my rectum and become incontinent. Deeply embarrassing for a woman in her 30s.
I went to medical school young to try to diagnose myself, and while I was unable to finish, I learned a lot. I believe my current most pressing symptoms are the result of my surgery, not my condition. I'm currently taking painkillers, antispasmodics, proton pump inhibitors, and an ulcer medicine designed to coat my intestines and reduce the acid damage when I use the bathroom.
I already closely monitor my diet, in fact I can barely eat but once a day. I see my doctors far too often, and feel they're sick of my complaints. My insurance refuses many of the treatments they've tried.
What could help with the side effects of the surgery?

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I’m so sorry you’re suffering so. I had 18” of my colon resected in 2022 and I don’t have any of your symptoms. I then contracted Covid in December of 2022 and to this date, don’t have my taste/smell back. It’s been awful, but what you’re experiencing is much worse! I also have several food sensitivities that I have stayed away from for 6 months and am slowly reincorporating them back into my diet. I know you said you don’t eat much, but possibly having a food sensitivity test done would help. Maybe the foods you’re eating are contributing to your symptoms. It’s worth a shot to give it a try and see what your body is sensitive to. I know mine has changed since my surgery. My test was done through a blood test with my chiropractor, but I’m sure an allergist could do it for you. I wish you well on your health journey!

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I have collageneous collitis (aka microscopic collitis because it can only be diagnosed through biopsy). If I get a flare from food, NSAIDs, or high stress then my GI tract purges. I have 2 minutes to find a bathroom or the water balloon pops; sometimes the food is not digested (looks like dinner went thru a blender) but usually it is. Perhaps your doctor could test for additional autoimmune diseases (once we have one we tend to collect more of them). My collitis is controlled by not eating gluten, NSAIDs (aspirin), and minimizing legumes and some nuts (similar to a FODMAP diet). GI tracts are also highly sensitive to stresses. I have celiac disease, reactive arthritis (dormant for 34 years), hypothyroid, and a few other oddities. I hope that you have a supportive environment and can mentally escape because being so ill is its own form of torture.

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