who ran some very specialized tests and within two days had diagnosed me with efferent limb syndrome (the rectal stump goes at a diagonal vs. vertical causing problems emptying). I also had a chronic stricture at the connection site, my pouch was not symmetrical, and my anal muscles had been re-trained to never relax. He offered simple, safe solutions and got me off most of my meds, although I took Entocort for the IGG4 autoimmune pouchititis I was diagnosed with. The next three years were a marked improvement, but he always honestly told me that because my pouch had mechanical issues, it may require a re-do by one of their surgeons. When I had the fistula scare earlier this year, felt absolutely terrible, ended up in the ER, was swollen and looked 5 months pregnant, I thought the fistula was to blame for my worsening symptoms. When I had the exam under anesthesia (EUA) with Dr. Remzi, my mind was blown when he told me the issues were due to my poor pouch function. I guess 8 years of never pooping properly had finally caught up with me. I also felt so much better after the prep and tests for that exam (see epic barium enema post) that it finally clicked that my pouch never was empty and that my pelvic pain and swelling were due to that. After months of contemplation-including weekly therapy sessions, prayer, polling of friends and family, and meditation, I decided to schedule the loop ileostomy surgery to give my pelvis, as Dr. Remzi said, “A chance to cool off.” I was nervous about the surgery for a number of reasons. 1. It’s another freaking surgery! How many of these have I had? 2. I remembered my hate/hate relationship with my former loop ileostomy and was hesitant to get back together 3. What if something went wrong again? Could I take that mentally and physically after all I’d been through? If you read my last post, you know I decided to woman-up and try again. I decided it’s never okay to give up when you have so much good work to do and life to live, so I told myself, the universe, God, that I’d try one more time, but I made clear that I needed this to work. I put all the positive energy I had towards it. I enlisted the good vibes and prayers of my community, family, and friends, and I felt the love! I had the surgery Tuesday, was released Friday, and am enjoying the distinct lack of pelvic pain.
Liz & wonderful Hubbs.
I’m loving my ostomy and if I can avoid diversion pouchitis, will probably keep Stella (my new stoma) for as long as possible. I’m so thankful for the ability to keep going-for the support of all of you, and I encourage you to pay attention to your body and seek answers when something feels wrong. Years of dealing with chronic illness and the constant pain that accompanies it can skew your perspective and dull your instincts. We can adopt a mantra of, “this is just how it is for me,” because it seems like part of accepting our illness. I encourage you to keep seeking answers-to seek the counsel of the best physicians you can find-to try alternative therapies like yoga, acupuncture, as long as you do it as a fully-informed patient. I have never stopped researching, but I almost stopped fighting. There’s no guarantee that this surgery will last forever or that I’ll be free of complications, but I can take solace in knowing that right now, I feel better, and I feel better because I didn’t give up on myself, or on the promise of improvement.