Good morning to all,
I would like to thank you in advance for reading this and providing any information or suggestions that you can.
I had my first surgery where they removed my full large intestine in January of 2016. I had my ileostomy for 2 year until January 2018. During the times with the ileostomy I had no issues whatsoever. I was active, ate what I wanted to, traveled, etc. I got my Jpouch created and reconnected in January 2018 and have been feeling generally unwell since.
The year of 2018 I took with a grain of salt because I knew there would be a large adjustment period adapting to the new pouch and getting used to using the washroom again. During these times I would be using the washroom many times in a day, in pain, and feeling gassy, bloated, and generally unwell.
Fast forward to March 2020 , I have tried a cycle of Cipro and Flagyl together because of some pouch inflammation seen on a pouchoscopy. The antibiotics made me feel better, but not normal by any means. From what I am reading on this site, people with a successful jpouch surgery and no other underlying issues should be feeling like they did prior to getting diagnosed with Colitis in the exception of using the washroom more often. Ever since getting off the antibiotics I have been going through SO MANY ups and downs.
I have been experimenting with supplements, diets, and more to try to get my symptoms under control. I have been working with a Naturopath for 3 months where I got some stool tests and a Food intolerance test. I have some good days, and some bad days. But even on my good days, I do not feel normal, I watch every single thing that I eat, still in pain and discomfort and I am still stressed about when the next time I will use the washroom will be.
Ive had to stop exercising and going out to social events because most days I just do not feel up to it. Currently I am eating a generally low fibre diet, no gluten, no dairy, no eggs in hopes of getting some relief but still have so many bad days. At this point my mental health is a huge factor and it is completely deteriorated because I am scared of all foods now, and dont feel comfortable eating anything really.
I had a colonoscopy, a ESG for my upper digestive tract, and a CT scan recently to really figure out what was going on and why I am feeling the way that I am. According to my GI doctor, all is normal, and she has no idea why I am not feeling normal and has basically given up and referred me to a dietician.
My current symptoms are alot of gas, bloating, stomach pain, tailbone/hip pain, alternating bowel movement patterns, and now newly dealing with incontinence at night time which has been a HUGE bummer and something is telling me I have pouchitis again.
I could go on and on about how I feel, but I am just truly confused at this point as why I feel so bad for someone who's tests are coming back normal and I am not feeling well.
I am truly at Witts end with my Pouch because its coming up on 3 years now And I thought I would be feeling SO MUCH BETTER after getting these surgeries done.
I really appreciate any words of wisdom from anyone on here,
Thank you in advance,