A place to share stories of how you have experienced or are experiencing with the immediate and long-term challenges associated with whipple surgery. How did or have your dietary habits changed? Has your ability to perceive taste changed throughout the treatment and post-surgical process? What helped (or didn’t)?
Janet, on May 28th, 2008 at 12:42 pm Said:
I had a whipple on 3/25/08 and am still recovering. I would love to learn more about the issues others are having. Will I ever be able to eat normally again or am I stuck on a low fat non dairy diet for the rest of my life? Any help or advice you can give me would be appreciated. Thanks,
whipplelife
June 15, 2008
whipplelife, on May 28th, 2008 at 12:53 pm Said:
Janet,
This is why I started this blog to see what we can find out together. I’m still working on organizing my thoughts to describe the details of my last four months, but I hope that some of what I’ve gone through can help, though it can’t define your or anyone else’s path.
I can tell you that one month ago I could hardly eat anything. Even the “several small meals a day” was just too much. I was getting most of my nutrition via as many Carnation Instant Breakfast drinks a I could take in a day but that just wasn’t enough. Once things started to turn around, though, they did so rapidly. Last night I had steak, a baked potato and salad for dinner! I don’t eat like that every night but I’ve found that I can without ill effect. I’ve also found that Pancrecarb helps and even though my pancreatic enzymes are at a normal level my doctor told me that higher is better in my case, so if I know I’m going to be eating a large meal or something that’s “on the edge” as far as what my system can take, I always take the pancrecarb first.
What was drilled into me, and what I learned the hard way, is that nutrition is essential and whatever you can do to maintain your nutrition you have to do. I went back to the hospital twice, in part because my body just wasn’t getting what it needed to sustain the recovery.
whipplelife
June 15, 2008
Posted on May 29, 2008 by whipplelife
Thinking about Janet’s question, “Will I ever be able to eat normally again?” I have to remind myself and anyone reading this post that everything shared here is personal, anecdotal, and non-medical. My experience and insight may or may not have any relevance for anyone else’s situation. Having said that, it was only a very few weeks ago that I raised the same question for myself. One old acquaintance said, “Well, when you’re feeling better maybe we can get together and grab a bite,” and I found myself replying that I didn’t know whether I’d ever eat in a restaurant again. That was only three or four weeks ago when I was three months out from my surgery. But things have changed.
The shortest answer to Janet’s question is, yes, people do “eat normally” even after a whipple procedure. Both prior to and following my surgery I’ve heard of and talked to a handful of folks who’ve faced this question personally and found that they’re able to resume a diet similar to what they enjoyed before their surgery. In my case I found that as I “pushed myself” to try to new things and old favorites I was able to tolerate more and more of a regular diet as the days progressed. I was cautious and had my pancrecarb tablets available if I knew I was going to try something a little more questionable, but I’ve been able to resume a diet which closely resembles how I was eating prior to the surgery, and this within fourth month after surgery. Of course, one benefit of the surgery is that though I’m back to a “three meals a day” eating schedule, I find that I don’t have the desire or ability to eat the quantity of food I did before. My consumption is far more reasonable than it was which doesn’t mean that I’m only eating tiny amounts I just find myself thinking “small” instead of “extra large” these days!
Another change which has helped as been the way I eat. All the literature says to take small bites and even though I can eat most anything I do find that smaller bites than I would usually take make the experience more enjoyable and easier to approach. But then, I haven’t mentioned my change in tastes.
Because my treatment entailed receiving chemo and radiation before surgery, my sensation of taste has been changing for months. Even now, one day my sensation of sweet (or example) will be extraordinarily sensitive and the next, less so. There are some foods that seem completely bland to me now that I found flavorful before, and it keeps changing. I don’t know whether this will stabilize and if so when, but I have found that the changes seems to be less dramatic than they were several weeks ago. I’ve also found that overall my sensation of taste is more “normal” than it was just a couple of months ago.
Finally, Janet asked about dairy. From asking around I’ve found this to be one of the most personal aspects of dietary change. I’ve heard of some folks who’ve not been able to tolerate dairy and others who have had no problem. In the weeks immediately following my surgery I got almost all my nutrition from Carnation Instant Breakfast with 2% milk and though I was drinking milk several times a day I didn’t have any immediate problems. Later, though, I began to notice that I did have a sore and sour experience most mornings and wondered whether it was just my body’s reaction to food after not having had any all night. As things went along I noticed that if I had dairy later on in the day I had that same uncomfortable feeling I’d noticed in the morning, after drinking CIB. As a personal experiment I cut out most diary and the uncomfortable feeling went away. Then, trying CIB or something else with milk I found that same feeling returned. Now I’m very careful about drinking milk, eating ice cream, etc. and have noticed that if I keep my consumption to small quantities I usually don’t have too much of a problem. We’ll see how this continues to unfold.
whipplelife
June 15, 2008
Janet, on May 30th, 2008 at 12:12 pm Said:
I tried to drink Ensure a couple of weeks after I got out of the hospital and that was a VERY painful experience. I haven’t tried any kind of nutritional supplement since. It sounds like Carnation Instant Breakfast with LF milk was ok for you? I may try that then. I find myself eating less food and less variety, trying to stay away from fats and fiber, I’ve experimented with the enzymes and I don’t see that they really do that much good. I was told to take 2 before every meal. That didn’t help. Then I was told to quit taking them altogether, that didn’t help. Now I’m being told to take 4 of them before a very fatty meal. That didn’t help.I’m back to not taking them at all and just watching my fats and fiber,,,again not helping. During my last visit, the Doctor said he’ll send me to a dietician if things don’t improve. I think I’ll he headed in that direction soon, ;o)
I feel fortunate that my cyst was non malignant and no chemo or radiation was required for me, just the surgery. BUT,,,,,it’s still no picnic and there’s very little information about recovery after the surgery.
Thank you so much for starting this site. It’s helpful to connect with someone that has gone through the same thing. Thanks again!!
whipplelife
June 15, 2008
whipplelife, on May 30th, 2008 at 12:45 pm Said:
Janet,
What were you told about how pancreatic enzymes were supposed to “help.” I from my understanding and experience taking them is related to breaking down the food so it can pass through the entire system more easily. I’ve never had pancrecarb “help” when it comes to how I feel actually eating but since my surgery I’ve found that it does help further on down the line with issues related to bowels.
whipplelife
June 15, 2008
Janet, on June 5th, 2008 at 12:29 pm Said:
I re-read your post and I see CIB was not a good choice so I won’t try that. I was told to take 4 enzymes before a really fatty meal and it would help digest the fat. I’ve tried the enzymes off and on ever since the surgery. Sometimes they help, sometimes they don’t. I decided to try them again yesterday with lunch and dinner and they did help digestion as far as preventing diarrhea, so I’ll stay on them and give them another chance. It just seems like diet is a very tricky thing and maybe patients should be referred to a dietician before they are released from the hospital. I don’t think there’s enough information given out, and the trial and error method is extremely frustrating.
Did you have much bloodwork done to see if you’re getting enough of the proper nutrients? I haven’t gotten anything done yet and am a little nervous about the possibility of becoming diabetic. Any thoughts on that?
Thanks,
whipplelife
June 15, 2008
Janet,
I’m sorry it’s taken me so long to get back to this discussion. I hope you realize that CIB worked for me for quite a while. It was, in fact, my primary source of nutrition for the first three months, though it was insufficient in and of itself.
As for the pancrecarb, since I’ve been able to eat I’ve found that using the enzymes helps primarily with the entire dietary process, most readily apparent in the effect on my bowels. I haven’t noticed an immediate cause and effect, but if I do take the enzymes I notice that things “move” more normally. If I don’t take the enzyme I can tell an effect after a couple of days.
I completely agree with your frustration about trial and error which is one of the reasons I started this site. I’ve tried to track down information for quite a while and only found minimal information available, even from pancreatic cancer sites. They’re mostly about the disease itself.
The blood work I had done around nutrition was done in connection with my two post-surgical hospitalizations. It was clear that nutrition was a problem so during both hospitalizations I received TPN in addition to receiving a regular diet. In both cases the effect was immediate. I felt and looked much better as I received the IV nutrition. Since I’ve actually been getting better over the past month I don’t think nutrition has been much of a problem. I take a daily multivitamin and at my first quarterly cancer-screening at the end of May there was absolutely no problem with my blood work.
I’m glad you asked about diabetes because that was quite a surprise to me. I assumed that the condition my “develop” over time but at my quarterly screening in May I was told that it would show up immediately or not at all. The surgeon explained the functioning of the pancreas in a way I’d never heard before and said that the reason they monitored by blood sugar so closely the week after surgery was because if a diabetic condition was to show up, it would have shown up immediately. Since my non-fasting blood sugar, at the May screening, was 78 I was told that my remaining pancreas has adjusting effectively and is producing sufficient insulin. Now, what I do to my body from this point out is my own business (fault) but I won’t be diabetic because of the whipple.
I hope this helps.
whipplelife
June 15, 2008
Thanks for the information about diabetes. My surgeon didn’t tell me much about it so that helps. A friend of mine is diabetic and had a spare monitor so I borrowed hers and have tested myself a few times. My readings are in the normal range so I imagine I’m not going to have a problem either. I’m coming up on the 3 month mark after the surgery and haven’t taken a multi vitamin yet. I’m half afraid to take anything after my incident with Ensure.
I’m not taking the enzymes regularly, but not having any serious problems with my bowels so I’ll just wait and see how that goes.
Thanks again for this site, it’s been a big help!!
Janet
June 17, 2008
I’m doing a multivitamin, low does aspirin and a iron supplement daily with no problems. I understand that maintaining proper absorption of various vitamins can be a problem for some people, though.
BTW - I was told to stay away from Ensure because it can be so difficult to take after this kind of surgery. I’ve recently tried a little dairy again and in smaller quantities am not having a problem.
whipplelife
June 18, 2008
Well you’ve talked me into trying a multi-vitamin. The doctor did say to get one without extra iron, as that might cause bowel problems, so I’ll look for one this week and try taking them. Thanks for the info!!!
Janet
June 18, 2008
It amazes me how quickly my ability to eat has changed once I really started getting better. Case in point…to celebrate my son’s last day of eighth grade we went out the dinner and I had a salad, potato and steak - even a beer! This with no ill effects (though I did take pancrecarb first).
whipplelife
June 21, 2008
To those who’ve gone through treatment…has and if so how has your taste changed? During treatment my taste was all over the place, especially with salty and sweet. Most of my taste has returned to what it was before, but my ability to handle sweet tastes is still WAY off. Not that it’s all that much of a problem, believe me, I could deal with an objective barrier to keep my away from sweets
but I’ve wondered whether anyone else has experienced a radical change in their taste and if so how it changed over time.
whipplelife
June 21, 2008
When I first came home from the hospital, everything I ate tasted as though it was drenched in salt. That has gone away over time but I’ve completely lost my taste for coffee. I used to drink at least 4 cups a day. Now I’m lucky to be able to drink a half cup a day. Other than that, my tastes have pretty much stayed the same.
Janet
June 28, 2008
I have had a whipple surgery 7 years ago…now am facing major stomach pain and discomfort….can the rest of my pancreas be removed as I have chronic pancreatitis and autoimmune panreatitis
John
July 6, 2008
John, I hope that someone reading this blog will be able to give insight into our situation, but would you be willing to share more of what’s happened to you? Do you know what’s causing the stomach problems and pancreatitis?
whipplelife
July 7, 2008
Had my Whipple for a pre-cancerous cyst in May 2006, so am over 2 years out. Cyst was found accidentally on a CT scan and was rapidly turning cancerous. Am one of the very lucky ones, so I hate to complain about minor health issues resulting from the surgery.
After a year off the enzymes (Pancrease MT 20–what’s “pancrecarb”?), am now back on them. Have found they largely have solved the diarrhea problem I was having. I kept attributing it to lactose intolerance so it dragged on longer than I should have let it. Unfortunately for me, I didn’t lose weight during the period, but have actually dropped a few unexplained pounds on the enzymes! Taking them consistently seems to be the secret. Mine are extended release so that must have something to do with the consistency.
Am wondering if anyone uses the OTC enzymes? Mine are $300/month (I pay for Rx’s) and OTC seem to be around $30. Are they the same?
I am able to eat everything, although I am careful with fats and need my lactaid pills for milk products, which is unrelated to the surgery. High fiber foods also don’t seem to agree well, but I eat them in small quantities. I do have periodic days or periods when the runs return. Has anyone else had the same problem and found a solution? I can’t find a cause and effect reason.
To those new to life after Whipple, I experienced a lot of what you are talking about with reference to food and quantities. Things returned to normal all too quickly and my portions and food variety were normal after about 5-6 months. It was almost a year though before I felt “normal”, especially including energy. I still don’t think my energy is quite as great as it had been pre-surgery, but its close.
Also should mention that I had an incisional hernia and had to have it repaired a year later. Surgeon reopened my entire vertical incision and put mesh in the entire length. Again, cutting all the muscles was major surgery and I was in the hospital for 5 days.
Hope this helps someone and I look forward to continuing here. I know only one other person who has had the surgery and she is currently not doing well with her pancreatic cancer. She has had persistent diarrhea and lost major weight as a result. I am so pleased to have found a forum!
Vicki
July 30, 2008
Hi Vicki, My enzymes are called VIOKASE 8000 tabs and they aren’t real expensive. I have the generic called Plaretase and they seem to work pretty well when I have large meals or eat out. I don’t take them for all meals every day. I try to stick to a low fat Weight Watchers diet most of the time and that helps with the diarrhea quite a bit. Anytime I have too much fat without the enymes, I’m in trouble. I didn’t know there were over the counter enzymes, what are they called? You can probably get generic enzymes like mine relatively cheaply. Hope this helps, let me know, thanks!!!
Janet
August 1, 2008
Hi Vicki! I’m sorry it’s taken me so long for me to get back to this forum. I take Pancrecarb MS-8 which is a brand name for pancrelipase. It says that it contains Lipase, Amylase and Protease. The instructions are to take three with a meal and one with a snack, though I basically just take it when I know I’m going to have a heavier meal.
Until this week I’ve had no problem with eating anything so long as I remember to take the Pancrecarb with some regularity (I don’t take it every meal) and have a yogurt drink every two or three days. This past week, though, I had about 36 hours when my digestion was very much like it was three months ago or so. I was in a fair amount of pain and became pretty dehydrated. Thinking back on the days preceding I realized that I hadn’t taken any enzyme and I had eaten quite a bit. I did everything I could to calm my system down and it worked pretty quickly.
whipplelife
August 10, 2008
Thanks for all the info. Sorry I haven’t answered but have been busy with my ill father and out of town.
Talked to my surgeon and he OK’d trying some over the counter enzymes (50 caps for $12!–Super Enzyme by Twin Labs). They aren’t quite what I was taking but have tried them tonight. So far, I’ve had no ill effects. They have 50,000-8,500-50,000 in them– very light on the lipase, but I’ll try. Found them at a health food store–owner wasn’t as knowledgeable as she thought, but for about an $800 difference over 90 days, its worth a try!
I also eat a very low fat diet, but do have probs with fiber such as in salads and fruits. Still can’t figure things out–seems to be no rhyme or pattern.
Will let you know how they work!
Vicki
Vicki
August 26, 2008
I had a whipple in 2006, the cyst I had was non-malignant, I can eat normal food now BUT experience constant loose stools and abdominal cramps/bloating….my Gastroenterologist told me not to take the pancreas enzyme because I didn’t need it, the Surgeons told me after surgery that I can eat whatever I want….but doesn anyone else get a “sick” feeling after going to the bathroom ??? I get lightheaded, abdominal cramps, fatigue….not all the
Nancy
November 16, 2008
Nancy, I’m 10 months out from my Whipple surgery and was told to take enzymes if I thought they helped. After a few months of experimentation they are absolutely necessary for me. I’ve found that to keep from feeling sick, such as you describe, I need to keep up with my enzymes, occasional yogurt, and a sense of moderation. The more I “push” my diet, the more difficulty I have. The more moderate I am in my eating, while keep up with supplements, the fewer problems I have.
whipplelife
November 16, 2008