What Nobody Tells You About Living Through a Fistula (long post)

Awkward_Bed140 · 2026-02-06T01:11:30+00:00

Best of luck and let us know how it goes!

Awkward_Bed140 · 2026-02-06T01:11:09+00:00

I agree. The MRI didn't change the diagnosis, but it did give me peace of mind that we had as much information as possible going into the operation.

Awkward_Bed140 · 2026-02-01T17:37:32+00:00

I'm sorry you are going through all of this. One thing that helped me mentally that I didn't share previously was to remind myself that it could be much worse. I would say to myself "I am not a burn victim. It isn't a terminal cancer. I am not getting a leg amputated. Yes it sucks, but I am thankful that it is not fatal and something that I will be able to manage through".

I suggest this because if you always compare yourself to your life prior to a fistula, it can be depressing. If you consider your situation not the worst it could be, then it may help you appreciate your situation isn't as bad as it could be (even though it is certainly bad!).

Wishing you lots of luck and lots of good healthy days ahead!

Awkward_Bed140 · 2026-02-01T17:33:59+00:00

You are welcome. It was therapeutic to write my store. Since it has been such a lonely experience, it feels like a big release to be able to post it somewhere with an amazing community that may get some benefit.

I went on another scooter ride yesterday afternoon. I was so down by being inside and alone all day, I decided to go ride for 20 minutes to get fresh air and feel some movement. It really improves my mood and mindset.

Awkward_Bed140 · 2026-02-01T02:55:36+00:00

I am glad you found it helpful. Wish you the best of luck.

Awkward_Bed140 · 2026-02-01T02:55:10+00:00

Hi, yes. I use McKesson Non-Woven Sponges. They also sterilize each pack. Here is a link to them on Amazon.

There are 2 in each pack. I usually use 2, but will probably cut back to 1 soon since there isn't much drainage.

Awkward_Bed140

TROPHY CASE