Please keep Lizzie in your prayers. She has tried everything she can, but she is still having leaks due to the indention from her first ileostomy. She also has a bump that resembles a polyp on the side of her stoma at the skin line, which is relatively new. Because of the frequent leaks, her body is on high alert and she isn't sleeping much at all. She is so exhausted. Pray that she would be able to rest and that these leaks would stop! She has an appointment with the stoma nurse on Thursday, and her follow-up with Dr. Stocchi in Cleveland is on the 24th. At this point, she kinda feels that a revision (or moving the stoma to the left side) is in her future :( Good news is that she is not obstructing! She will do great...right now it's a matter of figuring out what to do about the stoma.
Sarah - I am so sorry you are still experiencing the side effects of the immune therapy. How long do they expect the side effects to continue? Are there any medications they can give you to lessen your body's reaction? It is not fair that you have to fight these doctors when you are clearly doing everything in your power to get yourself well. I am so sorry your general doc accused you of using thyroid medication to lose weight. Being a doctor, he should know that won't work. Is there any way that you would be able to return to Italy and be treated by the expert there?
I have not been feeling well. My therapist discontinued biofeedback yesterday because it is making my symptoms so much worse. Motility continues to slow, I'm eating less, and the pain and spasms are getting worse. My follow-up appointment with my GI doc isn't until October 7th; I called today to get an earlier appointment, but he doesn't have any earlier openings at the moment, so they put me on the waiting list for when another patient cancels their appointment. The PT referred me to a neurologist for testing on the autonomic nervous system and vagus nerve. That testing may or may not get done here...My GI doc is wonderful, and he feels that it is in my best interest to go back to Mayo to see Dr. Camilleri, who specializes in enteric neurology, and Mayo would want to do all of their own neuro testing anyway.
Honestly, I just want an end ileostomy and my rectum removed. I do not want this to drag on for years like it did with my total colectomy (which should have been done three years sooner than it was). I guess that's a downside of being young! No one wants to do big surgeries! It's good that they're thorough in investigating other avenues besides surgery, but at some point enough is enough. I have a few questions for you...when did they do your ileostomy? How old were you? Did they do a loop first, or go straight to an end? Has your ileostomy markedly improved bloating/distention and pain? Getting my parents on board with me going back to Mayo and eventually having more surgery is going to be very hard. My mom has been a nurse for about 40 years, so she knows way too much for my own good in this situation. Being an oncology nurse, she has only seen the ostomies that had to be done due to damage from radiation treatment. Those poor people have a lot of problems, and because of her experience, she doesn't want me to have to go down the ostomy road, even though I feel it will help me have some quality of life. My health crashed at an inconvenient time in terms of education, so I still live at home, I am still on their insurance (but I will age off of it pretty soon), and my parents have that, "as long as you live under our roof, you do as we say" mentality. Don't get me wrong- I love my parents, and they have taken great care of me. I just need them to be ok with more surgery, if that is what I need. Are there any articles you know of that talk about ileostomy as a successful treatment for motility disorders that haven't responded to other treatments? And to anyone else reading this, your ideas are welcomed and much appreciated!
Marisa - I cannot even being to imagine what you are going through as Thursday approaches. Many, many prayers are with you and your family. Praying the judge gives this man life in prison for taking another life.
Hodaya - Praying for a great new job for you. You deserve it- to have a job you love, and a boss who treats you well. Life is too short! Go girl!
Rosemary - I hope you get an online photo album set up before you leave on your Africa trip so you can upload throughout! How exciting!
Sorry for the novel...love, prayers, and hugs to all!
Life-long GI problems.
- 2004: Motility problems completely took over my life (I was 18). Tons of doctors later...
- July 2007: Diagnosed with colonic inertia, small bowel dysmotility, delayed gastric emptying, rectal dyssynergia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic debilitating pain due to a small bowel dysmotility.
- September 2008: Barium study shows dilated small bowel loops (4.9cm), indicative of partial obstructions
- May 2010: Doctors suspect worsening rectal dysmotility; manometry inconclusive; rectal biopsies normal
- June 2010: Biofeedback (entire pelvic floor in full spasm...PT has quite the project on her hands!)
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.