Whipple's tiredness

[ELYENSIS]

I had Whipple's two years ago. Suffer from steatorrhea ever since, but now feeling physically tired all day. With steatorrhea have malabsorption. Lost 40 Kg in body weight. Why do I feel so tired with no energy ?

[Keidor]

Only been 14 weeks for me. Still in chemo and starting radiation. My energy under the circumstances is pretty good. Golfing 18-27 holes 3-5 days a week and up from 7-9 in the morning going to bed at midnight lately. I gained about 3-5 pounds and hope to gain more. Lost 30 in process of cancer plus operation. I do try (don’t always get it in) meditate daily and work out 1-2 times a week.

Of course I don’t know the future so your circumstance may be better off asking Doc. I wish you well.

[Sherry-FL in reply to Keidor]

This is my first post; my brother (44) had the whipple on June 22nd and it has just been one problem after another. He was hospitalized for 6 weeks and is now trying to take chemo (GemCap), but has had to back off over low white cell counts and now is diabetic. He has lost about 40 lbs I think. You both seem to be doing relatively well and are wondering if you found any tricks?

[Keidor in reply to Sherry-FL]

Did he get a shot for low white blood cells. Ask Doc about Newlasta or google it. I had one shot and WBC sky rocketed. Finally went back down but you can get another shot then. Something to think about.

[ELYENSIS in reply to Sherry-FL]

I have very close controlled diet. My main reason for feeling weak is the steatorrhea i.e. mal absorption.Everything I eat my digestive system rejects. I have trialled courses of everyknown pancreatic medication, again my digestive system rejects all of these. Steatorrhea is a major concern, everytime I open my bowels, the toilet requires 4 to 5 flushes to clear. Blood tests do not show any abnormalities especially in the potassium, sodium groups. Haemoglobin, red & white blood counts are within the tolerance bands.

[Whippsicle]

Hi,

just signed up. I had a Whipple's in 2007. For 18 months I felt really bad. Loose stools & floaters, and I got depressed over it all. It got so bad the doctor sent me to EA. Luckily for me there was a doctor there who actually assisted at my op. He immediately put me on Creon capsules. Immediate improvement.

If you are not on Creon best check it out with doctor.

Now feel really great..

[ELYENSIS in reply to Whippsicle]

Thanks for info. I have been prescribed Creon capsules (25000 strength units) since October 2015 at 16 per diem. Not had any effect whatsoever.

[catterboxcharlie in reply to ELYENSIS]

I have taken creon since my op 6 years ago. Take 25000 but 3 tablets with main meal, 1 with snack and 2 if eating something that ddoesn't fit either criteria. Have been really well with this regime. Also take 2 omeprazole, 1 morning1with evening meal. Also have a very low fat diet and watch fibre in take. Works forme so good luck. X

[ELYENSIS in reply to catterboxcharlie]

I take Creon 25000 4 with main meal , 2 with snacks, also Omeprazole 1 in morning and 1 at night time. Also take Nutryzme 1 3 times a day. But still suffer from steatorrhea and severe abdominal pain after two years.

[Bmanda]

Hi, I am new here but just wanted to mention the Creon. Steattorea and major weight loss was put on Creon 25,000 the dose was gradually increased as had no effect at all also Omeprazol 10mg. Gastrostopy before Creon was normal apart from small DU. 10 months after Creon a gastrostopy revealed extensive haemorrhagic gas duodenitus with ulcer now much larger. The only change in the 10 months was introduction of Creon. I had been led to believe that Creon was pretty harmless. Guess I wanted to warn people of possible side effects of this drug which the docs seem to dish out and up dosages as if they're sweeties. I'm still being investigated a year later battling with weight loss and steattorea. Wishing all well and keep on keeping on xx

[Whippsicle]

Hi,

I had my Whipple 9 years ago but for about 18 months after felt much the same as you describe. Eventually I felt so bad and depressed that I went to the doctor who sent me into EAE. Fortunately one of the doctors on duty assisted at my operation and immediately said "Well you need to start taking Creon" and started me on Creon 10000. Which was increased to Creon 25000 by the surgeon. It made one hell of a difference once I started taking it. I can't understand why the surgeon didn't prescribe Creon on my discharge. Any I now feel fine, occasionally get reflux symptoms which only last about a day but I cannot remember I had this. If you're not on Creon you should ask your doctor if you can give it a try.

All the best.