Any ideas anyone?
Last updated: November 2020
I am still learning how to navigate this site, and was surprised when I discovered what I wrote 2 months ago did not show up here in "stories." I must have posted it to the wrong location. Other than from a monitor (which was appreciated) I heard nothing back from anyone, so I want to try again here, but with updates and revisions.
Here is my story:
15 years with severe UC unresponsive to drug therapies. (Developed multiple serious side effects from the drugs instead, including drug induced Lupus.) 3 surgeries in 2015-16, now with a J-pouch. Many problems with my J-pouch right out of the starting block. Trip out to Cleveland Clinic fall 2017. Worked with multiple GI doctors and colorectal surgeons, as well as many alternative medicine practitioners. Currently see naturopath doctor ~once/month. In late June my most recent colorectal surgeon stated, “there is nothing more Western Medicine can do for you.” She wasn’t giving up, it was an accurate statement of fact.
I've worked with 6 dietitians, tried so, so many different diets, have had so many screenings and tests, etc. But I don’t know where to go from here, or if it is time for me to accept ~15 BMs/day, constant fatigue, need to use artificial stimulation to fully empty J-pouch, need to only leave the house between 9 am-1pm (when things start to seriously deteriorate for the day).
I have learned so much how to manage my pain and illness, but thought perhaps someone out there in the community would have a similar story and could suggest something that worked for them. I can manage a lot, but saddens me that I cannot travel at all (outside 1 hour radius of home) which means I cannot see my family at all. They all live out-of-state, so nieces, nephews, great nieces & nephews, all growing up without my every seeing them. The most difficult symptom is not being able to empty my J-pouch without use of artificial stimulation. REALLY disabling and limiting. Does anyone have any suggestions?
Does living with IBD impact you financially?