So, I typed a long story, and I don't know where it went. Shorter story, my new proposed date will be sometime in October/November, meeting with the surgeon next week. I will be asking if I will really have enough rectum left to work correctly. In the meantime, the delay is good for me because not only did I get COVID and recover, I also took a nasty fall because my balance sucks after chemo. Recovering from that has been eye-opening, as it really does take older people longer to recover. Silly me, I opted not to take the hydrocodone they prescribed for pain and was back in the ER 2 days later with trouble breathing. I got a stern lecture from the MD about pain meds being critical for recovery from rib cartilage damage for this exact reason: breathing is painful, and I could give myself pneumonia or a collapsed lung. Needless to say, I am taking the hydro stuff now and doing the breathing exercises!
Sucks when we have to admit we're getting older, doesn't it? I really miss healing faster.
I'm sorry to hear you fell. I've also had balance problems since chemo due (I think) to persistent peripheral neuropathy. I've been doing some balance exercises using my kitchen counter and taking meds for peripheral neuropathy. Just another thing that makes me feel old.
Sometimes there's no avoiding pain meds. I have made that mistake before. I'm glad you got off with only a lecture and nothing more serious.
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Hi gang,
I was thinking what a great resource this site has been for me since I found it. It would have been really helpful, but maybe a bit scary, to have found it before my ostomy, but that's water under the bridge. But I got thinking about it, and now I'm questioning why doctors and hospitals don't provide this site's contact info to any patient even considering an ostomy today. And how can we change that so potential ostomates can learn about the road ahead for them by getting on here and asking questions before the docs go chop-chop. How exactly do you get all hospitals to provide their patients specific information, like this website?
I just happened to find this site something like 4 years after my ostomy when I Googled "ostomy forum" or something like that. But I never found it during previous searches.....so I found this site pretty much by pure luck. We need to find a way to make this site available to new or soon-to-be ostomates......as that's when we really need to commiserate with fellow ostomates. Anybody have any thoughts on how we do this?
Thanks,
Bob
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Me too with the neuropathy; for me, it's mostly my toes. I usually take a hiking pole with me if I have to do much walking, but that didn't help me at all when the two horses ran by me on either side! What a sight! They were nice enough not to connect with me at all, though I do think they knocked my pole out of my hand. I've tried acupuncture and OTC supplements, but nothing seems to be making much difference in my toes. What meds have you been trying? One thing I would advise all chemo patients is to wear the ice boots for all your treatments. They didn't make it clear that both of my drugs could cause it, so I only wore it for one. The last treatment, the nurse said, "Oh, you should wear it for both… oh well!" I'm going to start some gentle balance exercises once my ribs allow me to move freely, although I have been doing some minor breathing and strengthening exercises while I heal. It's just so frustrating that doing two loads of laundry is more than I can handle, and even one is a stretch! 🤬 And I'm not even carrying it anywhere! We have a laundry chute, and our son carries it back upstairs for me.
No one suggested ice boots to me. I read a little about them after my treatment was over. 😮💨
Mine goes up almost to my knees. I use a hiking pole too. It has been helpful, but 2 🐎 would probably be more than I could manage.
I'm taking gabapentin and duloxetine (aka Cymbalta). The duloxetine was a game changer. It doesn't fix it, but it really helped.
Obviously, you need to heal from your fall before you try much of anything. Please don't push yourself. I enjoy having you here, and I'd miss you if you knocked yourself flat.
Words of Encouragement from Ostomy Advocates I Hollister
I've also got neuropathy from chemo. Have you tried lion's mane mushroom? With my ileo, I use it in powder form. I settled on putting it in a cup of decaf green tea (and a little honey). I should say that it can cause a drop in blood sugar and can act as a bit of a blood thinner - so definitely talk to your doctor first. Some folks have complained it can cause an upset stomach. So I started with a small amount first (1/2 gm) - which did cause a mild stomach upset but just that first time. My oncologist said to take 2 gms a day. It has helped my neuropathy. So I stopped the Cymbalta.
Forgot to mention earlier, get some "barefoot" shoes. There are a bunch of different brands and styles on Amazon. The soles are very thin, and they let you feel the ground better. I was at my most dangerous wearing shoes, and this cleared things up for me.
Yes, I am currently wearing the TOPO brand and find them very helpful with an extremely wide toe box and not much cushioning on the bottom, so I am more aware of the ground. I found the other sneakers I was wearing were like walking on a mattress with my toes tied together, extremely unstable.
My wife has me drinking some kind of mushroom ‘coffee' that is supposed to help; I'm not sure if it's that particular mushroom. I was thinking it was for more of the probiotic effect, but I really don't know. I will try just about anything so I can fully feel and control my toes again.