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Hi all, back home after my Friday, June 14th RC with a neo bladder at Hamilton St Joe’s with Dr Bobby Shayegan and his team. Came home Friday, June 21st, so its now been about 36 hrs, and so far so good. Feel like I got hit by a truck, but each day brings its own little move forward. Last night’s was a BM, a few actually (finally!) – my last one had been Thursday noon, yikes! Don’t have pathology report back yet, but things look good so far. Have been fortunate with recovery – the team described me this way Thurs am – “Mr J is doing great, as well as we would expect a patient to after this kind of surgery”. Thanks for all your advice and support on my previous post, it was very helpful. Tho the care at St Joe’s was excellent, it is good to be back home. Eating a little more variety each day. Any advice re: low residue diet vs. high fibre? I am going mostly the low res route, with little bits of protein and fibre thrown in for good measure. My throat is sensitive but I think its the acid reflux meds. Flushing is going well so far. There are moments it feels like a very long road back to full health and strength, and others where I am amazed that I can walk and laugh a little and keep in a conversation after the first few days post surg last week. I was surpised I can get in and out of my bed on my own now. Low furniture and chairs, and Lazyboys are another thing. Hoping to get out and walk around the corner to the stop sign today in the heat! Thanks again,
Gord
Gord, just make sure you are getting enough nutrients and vitamins on the low residue diet if you continue on that. I found that my appetite was not good enough to really focus on all that. I ate what I could when I could, but it wasn’t all that much for awhile. My personal opinion, based on nothing other than personal preference is to eat what you enjoy and everything in moderation. Others will have a different view, no doubt. I would not go high fibre; lots of internal healing going on at the moment. The hospital probably has a dietician who could help with the scientific realities of both.
Troat is probably sensitive due to a variety of nasty tubes inserted during surgery. My voice has never been the same – much more raspy and quiet – which most seem to appreciate since it keeps me quiet more!!!
GregGlad things are going well, God. And thank God for BM’s. Amazing how things so yciky feel so good!2. My prayers are with you for continued quick recovery.
Ki
Gord nice that you are home where we all like to be when healing. Take care and I wish you the best in your recovery.
Flo
Hey just a quick note to give you some very good news. Saw my surgeon today and he informed me that my cancer was entirely in the bladder, no sign of cancer in any other samples taken during my RC surgery, 11 days ago….by my reckoning, bladder gone = cancer gone! Thx for your support these last months, I will count on it continuing thru my adjustment to life with a neo bladder.
GordHi Gord, this is great news. I am also glad to hear you are faring well after your RC. Stay positive. The first few weeks are the hardest, then slowly, life gets back to normal. Take care of yourself.
Zina
Gotta love that kind of news Gord. Yippee! Hope your recovery continues to go well.
Monique and Mike
Hi Gord,
So great to read you are doing well. I am 8 weeks post RC with neobladder by Dr. Shayegan and things are going great for me. I just had a follow-up appointment with Dr. Shayegan and we discussed low residue diets.
I had read about metabolic changes due to removal of a portion of the ileum and found that I was not experiencing any of these issue. I also had a copy of Dr. Shayegan’s notes on my surgery and learned that he did not remove any portion of my terminal ileum. I believe this has helped me being able to eat the foods I like (fruit, vegies, fiber) and not worry about how it is digested. Dr. Shayegan agreed that eating a regular diet is fine. I agree that was good to be cautious with certain foods for the first few weeks to allow for healing of the ileum.
Each surgery may be different – when you visit Dr. Shayegan next, have him explain what portion of the ileum he took. I have a Studer Pouch – and for me, they went in 25cms from the termination of the ileum then removed 60cm to create the neobladder.
If you have any questions, please do not hesitate to contact me. nickerson.dw@gmail.com.
Dawn
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