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Hi all, my RC was 6 weeks ago yesterday, and I received a neobladder at St Joes in Hamilton. All has been going well for the most part, with no complications to speak of so far. I was feeling like I made progress in the last 1.5 weeks when my Malecot cathter came out, but I feel like in the past few days I have regressed.
Whereas a week ago I was hitting the 2 hr voiding mark often, it is hard to reach that now. I occasionally have lower back pain, not constant, it often seems to be connected to passing gas/BM’s. After I pass that I seem to be able to void more, and the pain subsides. I feel like my neo is sore – too much pressure? Also I am experiencing more spontaneous voiding from just standing up, which I haven’t to this point.
I am not experiencing a lot of symptoms of infection except the occasional lower back pain which comes and goes, and perhaps strong odour. No fever, no cloudy urine, no nausea, I have an appetite.
Also, I had no problems at all with leakage at night or day, until the last couple of days – I would wake feeling full, a little tinge in my back, get up and go, and go back to sleep for 1.5 – 2 hours. Last night I had my first full fledged ‘accident’ while sleeping.
Should I call St Joes and go in and get looked at and get some antibiotics for possible infection? We live an hour away. I am walking, drinking and doing more kegels. Any other advice?
I am getting a little discouraged but I do realize I am at the 6 week mark, it just may take me a little longer to get to where I want to be than I had hoped.
Gord
Hi Gord. Progression, regression, progression, regression, complication, regression, progression. Sounds like a crumby way to live. But it is temporary.
Hydronephrosis (water inside the kidney) can cause lower back or flank pain, as can infection. It is not at all uncommon in RC with neo cases and should resolve when emptying your bladder. It seems that urine can reflux (reverse direction) back into the kidney and can cause the kind of pain you are describing. Seems to be a fairly common occurrence on occasion.
Try to log when you feel the pain, when you empty your bladder and how much you have to drink in between to see if they are linked.
Take your temperature to ensure you have no infection, as a low grade fever would not be uncommon with an infection, and infections are quite common and should be treated earlier rather than later.
If the pain level increases, see your doc.
As the capacity of your new bladder increases (it is a slow increase and it has a mind of its own such that leakage is very common when you least expect it – buy stocks in Depend!) so does continence. But it is not necessarily a steady improvement. Even two and a half years out, I flood the bed on occasion. It used to be quite often; now it is quite infrequent, but annoyingly and embarrassingly present with me nonetheless. Diapers and pads have become my night-time attire even though I rarely wet them. But it does happen and I cannot predict when or why so I do not take the chance. I can be dry as a desert for three weeks and then for some unknown reason soak my bedtime attire! I have not as yet figured out why. There are also times when I need to void every couple of hours to feel empty and other times I can go five hours (by five hours, however, I am asking for an urgent and clenching reminder of the time).
Keep reminding yourself that it has only been six weeks. In my case, I had a Foley catheter in for the first seven weeks! The day after it was removed I was violently ill for the next two weeks with high temp and chills and fever and vomiting. I was fully ten weeks out before I had any sense of normalcy, and that was a weaker, less energetic, new normal – and a damp one!
“Let patience have its perfect work in you.” Out of context perhaps, but no less relevant.
Sounds like your Liz and you need to have lunch with my Liz and me. We will come to you if and when…Let me know.
Well, I am into my 7th week post RC/Neo and things are much better. I did end up heading to emerg at St Joes last Sunday after a few days of going downhill, fever on Friday and chills on Saturday. Spent three nights in the hospital, and am home on antibiotics for a UTI. Funny thing is it seems my neo is working better than ever, amts are good, time between has increased, as has my energy and mobility. Still taking it easy, but a real difference from two weeks ago. Still some issues regarding nights but I am just getting up every 2 hours, its a little hit and miss but I am only a few days into a much longer road. Working some little trips out and about during August to try and enjoy a bit of the summer that is left after being housebound for July. Looking forward to the BCC walk here in Cambridge in September, my 3 month recovery goal!
Wonderful to hear that you feel much better now and you are on track to your recovery goal. It’s the 11th day post RC for my mom and her body and emotion swings quite a lot too. And she also went to the emerg because after the home visit nurse removed the staples, the lower part of the incision cracked open and the opening is big and deep! Tthe nurse suggested us to go to see the emerg doctor just in case. We were sent home as the emerg doctor said it’s not uncommon and we just have to wait for the wound to heal slowly from inside and now we have a home visit nurse to clean and change dressing for her everyday.
As for the stoma, it bleeded a little but otherwise looks healthy. Our problem is we did not get an enterostomal nurse (her first visti will be next Tue) and the other nurse just didn’t do it right and it was pretty messy. Turn out I watched the video on the internet and took a deep breath and….. hurray we changed the ostomy pouch ourselves for the first time! It was quite a milestone for us, seriously! (It is a little complicated as the stents are still in.)
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