Fatigue and fear of eating after open radical neph and ileus

Tumourhumour

Hello everyone,

I'm 38, german, had erythema nodosum on and off for the last 25 years or so, had a particulary hefty bout starting late December 2022, left me bedbound for over six months, PCP checked my blood, creatinine was 1,2, referred me to a nephrologist. She found a mass in my abdomen, X-ray, MRI and CT confirmed an 8cm tumour in my left kidney, no metastases.

Had an open radical nephrectomy mid August due to my horseshoe kidney. I had a median laparotomy, from under my navel up to a couple of cm under my ribcage. According to my doctors I'm healing perfectly and everyone gushes over the stitches.

Histology report: chromophobe RCC, not metastases found in lymph nodes.

Was in hospital for 5 days, was on IV piritramide and IV metamizole, left with oral tilidin and metamizole.

Had a post operative paralytic ileus at home, the worst pain I've ever experienced. Husband and I only barely managed without going back to hospital, but since then I've developed a fear of eating and lost over 6kg. I wasn't overweight before and shouldn't lose too much more. I've only eaten baby food like pureed veggies and fruit, dextrose and for the last three days I forced myself to have a protein shake to get some protein in after having none for almost four weeks. I'm too afraid to take my iron supplement for fear of constipation. I still feel nauseous often and have digestive issues which are unsurprising giving what I eat I guess. Since I'm vegan I supplement B12.

One of my main problems is my extremely low energy and having to gasp for air when doing too much. Too much is something like taking a shower or walking 5 to 10 minutes on the slowest setting on my treadmill. I sit and lay in bed all day, try to get up every 30-60 minutes to walk around the house but I'm fatigued so quickly. Thankfully my husband does everything and I can focuse 100% on my recovery and have no pressure whatsoever.

Considering I wasn't healthy and was bedbound until surgery, I did not start recovery on a high note and I know it will take time until I feel better. But I do am worried about my low energy and like to know if there's anything I can do to improve other than eating more and taking my iron?

Thank you so much for your help! I feel like I've already read years worth of valuable information and you've already helped me understand so much like the weird pain I sometimes get in the place where my kidney was.

eug91

Guten tag tumourhumour!

Welcome to the forum. First off, CONGRATULATIONS on getting through your nephrectomy! Well done!

As for you feeling low-energy, it's hard to say. Everyone's healing process is different. Your body's been through an ordeal, and it will take a little time for it to get back to where you were before.

With my neph, I thought I healed pretty quickly in terms of getting back to work and walking around the house. But anything more strenuous and I was drained. My doctor told me with my age/health, I should be able to get back to strenuous exercise eight weeks after my surgery, but I just couldn't do it. At eight weeks, I tried a light jog on the treadmill and I felt like I was going to collapse. It took me at least three months before I could exercise like I could before.

Everyone heals at a different rate. You're only four weeks into it, so it's still very early. Keep walking, listen to your body, and if you're still concerned don't be afraid to ask your doctor.

Hope this helps!

Bay Area Guy

Years before I had kidney cancer, I had a pretty bad eating disorder. I needed to lose weight to get my blood pressure and cholesterol to healthier levels. My doc offered pills, but I chose to exercise and change my diet. Well, I overdid it. I’m 6’2” tall and I went from 255 pounds down to 150 pounds in a very short amount of time. I then had two incidents where my intestines twisted. The first one required some fairly simple surgery (still painful, but not too involved). In the second one, my colon twisted so much that it completely blocked everything. That required a much more involved surgery that took out 18 inches of my sigmoid colon and left me, temporarily with having to poop into an ileostomy bag. My weight dropped below 140 pounds and my iron level was so low, the surgeon would not “reconnect” my intestines until I got it back up. My energy level, like yours, was very low. But with the ileostomy, like you, I was scared to eat a lot of solid food. Here’s what we did:

1). Cream of Wheat is quite high in iron. So I had that twice a day and my wife would crush a multi-vitamin with iron in it (100% of the RDA for iron) and I’d have that mixture.

2). The drink supplement Ensure has a lot of iron in it. So I had that twice a day.

3). I’d have a roast beef sandwich for lunch, and another type of meat for dinner to get iron into me.

4). I would have a banana and yogurt just before bed because I was trying to firm up my output. Before the Apple and yogurt, my output into the bag was mostly liquid. The banana and yogurt helped firm it up. Since you have the reverse problem, you can skip that.

5). I didn’t have much in the way of veggies as the doctor said they were a little too fibrous and could clog me up. And that, in fact, did happen early on when we tried to purée spinach. I got a bowel obstruction and had to go back to the hospital.

The surgeon expected it would take me six months to get my iron levels up. With this “diet”, we got it there in two months, and got my weight back up to 180. The surgeon was shocked. But she got me reconnected. I slowly reintroduced different fruits and veggies back into my diet. I’ve maintained the 180 pounds +/- 5 pounds depending on salt intake and pigging out on vacation once in a while. And my blood pressure and cholesterol readings are very good now.

So, in your case, doing 1, 2 and 3 should help get your iron level back up. And once that happens and you’re able to walk more, the exercise should help with your digestion issues. But before doing any of it, talk to your doc and see what he thinks. We’re all different and what worked for me might not work for others.

Tumourhumour

Thank you so much for your help and apologies for not answering sooner.

I very slowly began to eat more calories, gained some weight back and with more calories my energy level increased. I'm still very much fatigued but better than when I first wrote here.

My iron levels were abysmal and it took me a while to encourage myself to take my supplements. But I'm on it and I've experienced no concernable side effects.

Thank you again!