Swollen Ankles and Other Post-Op Symptoms

There is a lot I was prepared for after my radical cystectomy surgery. A big scar, an ostomy, a rigorous recovery, but there were so many things I had no idea that I would be dealing with post-operation symptoms long after I was healed and back to normal life.

First post-op symptom, hair loss

Due to stress, anemia, and then many hours under anesthesia, my hair started falling out significantly about two weeks post-op. Every time I took a shower, fistfuls of hair would come out during my shampoo and it was devastating. I wasn’t doing chemo or radiation so I wasn’t prepared for the hair loss at all. Eventually, my hair did stop falling out and I was left with incredibly thin hair. When it started growing back I had a very unique texture situation, and I was forced to do a big chop in the hopes that everything would start growing back evenly. Two years later and my hair is just now starting to get back to normal.

Then came the swollen ankles

I was somewhat warned about the issues I could face from having so many lymph nodes removed during surgery, we just weren’t sure how or when they would manifest. Well, that symptom seems to have arrived, and decided to camp out. After any long day on my feet, when I’ve had too much salt, do a long workout, or even just because it is a Wednesday, I often deal with my legs and feet swelling. This is lymphedema - not to be confused with lipedema. To mitigate this I must make sure I drink plenty of water, reduce my salt intake, and wear my compression garments. I have several pairs of compression stockings and I do my very best to wear them at night or even right when I get home. I find if I don’t my joints get incredibly stiff and the swelling is prolonged.

Odd G.I. Issues

Speaking to several folks who have urostomies, most of us agree that we have come away with really odd GI issues. My medical team can’t quite nail down if it is from taking a piece of intestine to create my stoma, or just a part of my body dealing with all the various changes I have experienced. Every ostomate is a little different, but I’ve found my dairy intolerance is more severe, I get bloated much easier and I deal with GI distress more often than I ever have. I just have to chuck it up to one of the several less glamorous aspects of post cystectomy life.

Hormones go haywire

I was lucky to be able to keep my ovaries as my team did not want me dealing with menopause at 28 years old. However, my hormones are definitely not what they used to be. It has been a rollercoaster that affects my sex drive, mood, energy, metabolism, just about everything. Sometimes I question if they are doing anything at all.

Talk to your doctor

Surgery brings about so many changes, and a radical cystectomy is very intense. For women, they most likely remove all of their reproductive organs and everyone will definitely have lymph nodes removed as well. This is a great amount of stress to our bodies and realistically we can never expect everything to go back to the way it was. The best advice I can give if you have found a new lingering post-op symptom is to bring it up to your doctor. I have always kept my team in the loop and they have guided me through both medical and not medical options to mitigate anything that pops up.