Has anyone experienced bloating?

Posted by judithbramson12 @judithbramson12, Mar 2 10:57pm

Has anyone experienced bloat? I can’t seem to get rid of it. Any information of success would be greatly appreciated, I've tried probiotics, 5 different brands and they did nothing. My primary recommended that,
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@tlcatlin

I had eight rounds of folfirinox and my tumor did shrink about 35%, but it was still completely wrapped around two major vessels and unlikely to pull away enough to allow surgery. Since the chemo itself just about killed me I decided to stop and just live as well as I can for as long as I can. It's been five months since I stopped chemo and I have felt so much better! I'm enjoying my life and although I know it won't last I'm going to live it for all I'm worthwhile it does. The one thing that causes me problems is the gas and bloating. Dilaudid and morphine have not helped with that pain because I think it's actually nerve pain from the pressure of the gas. Opiates don't work that well on nerve pain. Cutting back on the Creon seems to have helped maybe a little and a higher dose chewable simethicone seems to work better than the capsules. I have tried taking a half milligram of lorazepam at bedtime and that seems to help a little. It doesn't even seem to matter what it is I am eating. Most of the time it's only a problem when I lie down to sleep because during the day when I'm upright I can usually pass the gas one way or the other fairly effectively so far. It's when I lie down at night that it's a problem. A hot rice sack seems to help although it could be that it just feels comforting . I also just started taking some dexamethasone in the mornings to see if that anti-inflammatory property will help. If anyone else has any more suggestions I would sure love to hear them. I'm going to try adding Beano and Lactaid and see if that helps.

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Welcome, @tlcatlin. Is the Beano or Lactaid helping? Have you tried sleeping with the head of the mattress raised?

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Which chemo are you on? Where is your bloat? Are you on generic Lyrica?

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I am not on chemo. My bloat is in my abdomen. I’m not on any cancer related therapy except Zenpep. I didn’t have chemo after my Whipple. The rest of my meds are vitamins and a benzo, Lorazapam, for my anxiety, and a probiotic and Imodium AD 3 times a day.

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@colleenyoung

Welcome, @tlcatlin. Is the Beano or Lactaid helping? Have you tried sleeping with the head of the mattress raised?

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I haven't tried lifting the head of the bed but I think that's a good idea. I think I added too many things all at once and ended up having diarrhea for almost a week. I know better than to add more than one thing at a time but I did it anyway! so now I have dropped back to just simethicone and the creon and trying to get the diarrhea under control before I add anything else.

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@judithbramson12

I am not on chemo. My bloat is in my abdomen. I’m not on any cancer related therapy except Zenpep. I didn’t have chemo after my Whipple. The rest of my meds are vitamins and a benzo, Lorazapam, for my anxiety, and a probiotic and Imodium AD 3 times a day.

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Judith,

Are you being treated at a center of excellence?

I am not a medical professional, but it is common for post-Whipple patients to be on chemo - pancreatic cancer cells are very sneaky.

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I’m being treated at Mayo Clinic in Jax, FL. I go every four months for followup as I am cancer free at this point. I was told the Whipple was successful and got it all, margins clean. But learning to live with half my digestive system gone has been very challenging. I’ve had to experiment to find the foods that would add weight and not cause diarrhea. I have made good progress.

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@judithbramson12

I’m being treated at Mayo Clinic in Jax, FL. I go every four months for followup as I am cancer free at this point. I was told the Whipple was successful and got it all, margins clean. But learning to live with half my digestive system gone has been very challenging. I’ve had to experiment to find the foods that would add weight and not cause diarrhea. I have made good progress.

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My husband is having the Whipple procedure in April at the Mayo Clinic in JAX. Who was your surgeon? Can you provide me with the foods that have assisted you in weight gain and doesn't cause diarrhea?

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@judithbramson12

I’m being treated at Mayo Clinic in Jax, FL. I go every four months for followup as I am cancer free at this point. I was told the Whipple was successful and got it all, margins clean. But learning to live with half my digestive system gone has been very challenging. I’ve had to experiment to find the foods that would add weight and not cause diarrhea. I have made good progress.

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Congratulations on your weight gain and no diarrhea…. Can you share what foods and enzymes/dosage you are using?

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My surgeon was Dr, John Stauffer. I think and was told he is the best!
As for the foods. this is what is working for me. I take Zenpep and only eat five times a day as I need 1800 calories to gain back my weight. I'm small and 93 pounds is my normal weoght. So I eat between 360 and 500 calories each meal. I don't do snacks. It took months to get it right for me.
My foods are not the most nutrious, but I am going for the calories. Here goes: Oatmeal with strawberries, sourdough bread, white bread, bagels and lox, English Muffins, pasta, sauce with no added sugar (I don't need insulin, no diabetes, so no added sugar in any food), bananas, granola sugar free, all cheeses, Muenster has 240 calories, so I eat three at a time, salmon, chicken, peaches, mangos, blueberries, lots of peanut butter, margarine for the breads, etc., yogurt with no sugar, fat or additives, stevia and truvia for sweeteners, (oatmeal is yuck without it), tuna, eggs, Hellman's Mayonnaise, potatoes, especially sweet for calories, tomatoes. Vegetables are good, but I don't do much with them. That is why my nutrition could be better.
That's all I can think of right now. I plan my menu based on the calories so I reach 1,800 to 2,000 each day. I repeat the same menu days in a row just to get the calorie count. So I know each day exactly what I am going to eat. I paln it thenight before. And I write everything down: each food and its count, bowel movements, water in ounces, probiotic. I don't do snacks as they mess up my timeline; I need at least two hours between meals. No water for at least 60 minutes post eating or exercise.
I learned not to eat if I am upset as it interfers with my digestion and can cause diarrhea for me. So I wait until I have become calm. It took a long time to get a schedule that works for me. I f something doesn't agree (diarrhea or pain), I never touch it again.
I guess I got carried away, too much information. As we are all different what works for me may not work for someone else. For me, it's experimentation. I increased my Zenpep without asking and it made a difference. I learned from this blog that Imoium AD three times a day helps with diarrhea. Stopped mine right away, so I take it three times a day.
Good luck to your husband and you as caretaker. It's a frustrating recovery, butit is doable. I'm 84 and physically strong as exercise is part of my recovery plan. That's another story. My emotions can mess me up. That's my Achille's heel.

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