Post Whipple Surgery incontinence - Underwear?

I have been following your plan. Amazing to me to me it WORKS! It truly was a game changer for me. I wanted to test it a while before I got to excited. I can’t thank you enough as it has truly changed my life. Of corse being too confident I ate some thing new, veggie burger, set me back four days, but I recovered. Got sucked in by lots of calories and protein. No more processed food!

Thank you from the bottom of my over worked digestive system. My only question is where the heck were my doctors on this. When I told them their reply was, “ Oh yes, that is ok.”

I’ve learned I must be my own advocate. Once out the door if I didn’t push, you totally forgot me.

Thank you again!

Yay!!!! So happy it’s working for you! I am like a new person! ❤️ this made me cry lol

Oh, don’t cry, you have given me back to myself for the first time in eight months. Things can change, but now I’m enjoying every minute. I’m the one crying! Eternal thank you!

One thing I orgot to mentioned is the first time I used ONE piece of toilet paper I shout OMG! I should have owned stock is Scott Tissues. Now I just shout YES! Thos who have been there know exactly what I mean!

Excuse the left out letters. I can't type without looking, but I was so excited not using a roll of paper!

After my Whipple, I endured nearly daily diarrhea and sudden urgency. One of my surgeons suggested I try to go without taking a pancrealipase and try to eat small meals that were non-fat and low fat and I dutifully complied. My weight kept dropping and the symptoms weren't improving. Sudden urgency and bowel control were of constant concern. I reported my symptoms at every exam that were recorded but were never sufficiently addressed. Imodium had no effect but being prescribed any of the Rx brands helped with control. Lomax, Lomatil, Loperamide and the generic form diphenoxylate atropine. While those antidiarrheal medications gave some control over the symptoms, it did nothing for the weight loss and struggle to maintain/gain back weight.

The Eureka moment was when I was relating my symptoms to a fellow survivor who also underwent years of what I was experiencing. He finally found a knowledgable registered dietitian with CSO designation (Certification Specialist Oncology). These R.D.'s have additional coursework and practical experience in dealing with patients that have GI cancers. He was prescribed a pancrealipase and that resolved his symptoms. With that I requested a pancrealipase and from the moment I took the first capsule, my symptoms of urgency, diarrhea, steatorrhea, and weight loss stopped. My surgeon now admits it was a mistake not to put me on a pancrealipase right after surgery.

While Exocrine Pancreas Insufficiency (EPI) can be one source of the GI symptoms of diarrhea and incontinence, a co-morbidity can also exist. Sometime a post Whipple or pancreatic cancer patient may develop lactose or gluten sensitivity (celiac disease). IBD/IBS, Crohn's Disease and Small Intestine Bacterial Overload (SIBO) can co-exist complicating the diagnosis and requiring a diagnostic work-up with a GI specialist. To determine if EPI is the cause, classic symptoms will usually have a prescriber have the patient try a pancrealipase. When classic symptoms are not evident, the fecal elastase test will be ordered. If a pancrealipase does not resolve the issue, then the next step is to eliminate dairy and gluten products and introduce one back at a time and observing GI symptoms. If no resolution on a pancrealipase and gluten and lactose intolerance are ruled out as causes, then A GI specialist does a diagnostic work-up for the other pathologies that may involve doing an upper and lower GI series and other blood chemistries.

I, too, experienced months with no enzymes. My oncologist was horrified. Finally I was prescribed Zenpep, but it to a while to regulate the dosage. I’m very happy for you as I will never forget those four months. What is the name of the drug you were prescribed? It surprises me how many doctors don’t begin with something that works. After reading your post, I realize many doctors make this error.

Good luck with your new meds.

At the time of my initial diagnosis, I had a stent, biopsy, and ERCP. I knew that the CT had shown an atrophic pancreas and I wondered about deficit in pancreatic enzymes. I had no appetite and constant diarrhea. When I saw the oncologist a few weeks later, he immediately started me on Creon. It was helpful. Less BM's and return of appetite. The dose was gradually increased. I worked with the hepatobiliary dietician at MSKCC and gradually increased the dose. I had been having a BM after every meal and sometimes an urgent need to have a BM at other times. Things improved as the dose was increased. It took six months of dosing increases to control the symptoms. Now I have had a Whipple procedure I am reregulating. I have been advised to eat six times. This has been difficult as it means eating about every three hours and I am not hungry at 3 hours. It is taking some adjustment. I am starting to feel significantly recovered 5 weeks after surgery. Not easy

You are doing much better than I did. I’m first beginning to feel recovered and it’s nine months. I wasn’t given enzymes for the first four months. Horrible. Interesting you are not hungry, but with all the crap (no pun intended) I went through, I was and still am hungry all the time. I have to stop myself because if I eat too much (I am 4’11” and my regular weight is 93). I do feel almost normal except for my reactions to food. And then………..I go back to square one. So I eat the same amount and the same meals, BORING, because I know I can tolerate them. Today I burnt my toast and ate it anyway, thus having a reaction. Thankfully it wasn’t real bad, but I know it was a set back. I keep making mistakes now and then, so it seems Victoria’s Secret will have to wait! The irony is that I don’t know it’s a mistake until it happens. Foods on the good list don’t always agree with me.

Keep up the good work. You’re doing great!

I agree it might help more patients to be sent home from their Whipple surgery with enzymes at the outset.

I didn't get my enzymes until about 4 weeks after the surgery, and from there it took a few more weeks for things to normalize. Waking up 3-4 times per night for a bowel movement is not good for sleep quality, and fatigue was my second biggest long-term difficulty (after bowels) with recovery.

I was back to work full-time 7 weeks after Whipple, but requiring numerous mid-day breaks/naps to get through it. Still heavily dependent on coffee to get through a day. 🙁