Pain and swelling 3 months after radical nephrectomy

Hi Shaz and welcome.

I am only 4 weeks in (RAPN) so personally haven't had this yet - but I have been reading from others and it seems this can happen sometimes weeks later when the nerve endings start to wake up again/repair themselves. They will have cut through your stomach muscles and it could be that the muscles are "complaining" having now also started to repair themselves. 

My belly is still swollen (elsewhere here, I've read some people call it a "rugby ball"!!) but have resigned myself to having this for some while yet. It's gone down a bit in 4 weeks but could be a long-term thing, potentially. I guess it will eventually subside - again, I think that's the stomach muscles reacting against the assault they have had. 

So yes, I think that is normal and from what others have said, I think the late onset of spasms and pain can also occur in some people - maybe most, even, but only being four weeks in I haven't yet had this myself. 

I was disturbed to have the swollen belly, as despite everyone else talking about "swelly belly" after hysterectomy, when I had my hystero two years ago I had no swelling at all. However, this surgery has cut through different areas of my torso and that will have made a difference.

Codeine can be a funny thing sometimes...some people are straight allergic to it. Others can get addicted to it if long term - it stops working, as your body gets used to it, so you end up taking more and more. As long as you are not allergic to it, it might be worth a try. If you can get it, take the dispersible one, as it gets into your body quicker if in liquid form (tablets disperses in water) and hits the spot quicker. It was Co-codamol dispersible I used to take, which is I think codeine plus paracetamol so don't double up the paracetamol if you opt for that one. The GP, if you have rung, will advise best on which form to take. 

Thanks Mate for your detailed response it makes sense. I guess I was thinking I  had over done it and pulled something as I  felt so good and well on the road to recovery then these muscle spasms started and sharp  stabbing pain and when you just don't know what too expect you think is it right.

Thanks for the positives  I hall carry on and hope the swelling reduces down more so I can get my regular jeans etc on at the minute wearing bigger sizes as the stomach is tender and they are more comfy.

Take care and good luck with recovery and feedback .

Shaz

I had the same fear...I walked about half a mile just a very few days after surgery, and that was when I noticed my belly swelling had increased. So of course thought I'd overdone it! too much, too soon. However, the swelling is still there 4 weeks on, and reading others' info, it seems it's a fairly common thing. So I don't think my activity caused it as such. I am prepared that it may take weeks or longer to go down. Bit anxious as I am due to drive to France on 1st July. The one thing concerning me is whether I will be able to get my swimsuit over the bump!!!! - one of my main delights when there is having a pool more or less to myself, as I love swimming but never get to go in the UK (too expensive, and nearest pools too inaccessible). If I try it on two weeks before going and it's uncomfortable, I may have to buy a bigger size swimsuit 

I always wear loose baggy things anyway, normally: cut-offs, for example. I like clothes a size too big as I hate being constricted, at any time. I think I was about 19 when I last managed to get into a pair of jeans!! (Huge hips for my figure) My incisions are still tender but I believe this will pass. I am currently fighting with a rash and itching...third medical visit today in six days, and this time the doctor reckoned it is a bacterial infection and seemed to indicate it might have started when they shaved me for surgery... I said, but they didn't shave me! I don't have hairs on my belly!!! Anyway - I now have antibacterial cream and a wash, so hope it will subside within a few days now. That is probably also making my incisions feel sore as the rash is around and over all but one of them. I put it all down to the surgical glue, which they glued me up with despite my medical records stating I am "allergic to dressing glue"!! - and the rash was starting to appear about a week in, when the glue was still on....glue was still stuck solid for three weeks and the nurse last Tuesday had to remove it for me.

Do follow up the codeine suggestion from your nurse, but go via the GP to get it. GP might have an alternative suggestion. 

Thanks Maite I have a gp appointment so see what they say ,good look with recovory and belly reducing down Im sure you will be fine mine had gone down loads so bring on your costume

Good luck and thanks again for your support

Shaz

Hi! I am 5 months on from a nephroureterectomy and have had stabbing/shooting pains in my abdomen like little elves are jabbing me with sharp tools and ripping bits of me apart! Sometimes I shout out loud as it can be very sudden and intense. I was told it is the nerves reknitting. I have also been numb on the operated side of my hips and back... feeling just starting to come back at last.  I also still have a swollen abdomen. It has all improved a lot over the last 2 weeks however. Was beginning to wonder if it ever would! So don't despair.

Thanks Tillyv its good to know that things improve slow but sure,if we are told how things might be we would  be prepared instead ofcthinking is this how it should be.

Thanks again for taking the time to reassure me take care and keep well  

Shaz

Yes indeed... better info, less down-playing and generalising, more realistic expectations and we would have a lot less stress! Up and on. X

I'm up for better info! I felt out on a limb once I was discharged after surgery. The 24/7 phone number I was told I could ring, turned out to be only for emergencies. There were a lot of things I wasn't told (and I am the world's worst/best at asking hundreds of questions to try and get every little detail possible) which is perhaps because we are all individuals, all different; but I have found out a lot more by talking and reading on here, sharing others' experiences and progress, and also researching online where there are half a dozen different results for each question but I have pieced them all together like a jigsaw to get the best possible indication. 

I guess realistically they can't really tell us all the possibilities as you would have thousands...one for each individual, at least! And the medics don't know half the time how our body is going to react, as we are all so different from anyone else.

But thank goodness we have forums such as this, where we can share our worries with others, and be reassured that we are certainly never alone!

Definaltey  Tillyv and Maite  we dont know what we dont know as you say its really helpful listening to what others have to say and reduce stress 

Thanks again it has really put my mind at ease ,take care

• Shaz

Hi. Hope youre ok. From experience you will still be experiencing some discomfort as it's still very new. In time it'll go. See how you are. But contact the nurse or GP if symptoms worsen . I'm 10 months post op, I'm retaining a lot of fluid around hands, arms, face and abdominal area, the hospital say it won't be water retention, yet a colleague friend who is a nurse has said that I will have water retention. They said some people's kidneys functions ok after  surgery although eGFR is lower and will remove all excess fluid but  for some it doesn't remove all! My egfr is 48, but I'm still following my slimming world healthy eating , yet I've gained weight since august last year. It's all very strange. Makes me feel very down. I have discomfort /pulling in the larger incisional area. Just trying to get on with it .. smalls steps is what they say!!