Mayo Clinic Connect
I have bronchiectasis and NTM. I also have GERD. I have been on the "big 3" for six months. I have no appetite and am losing weight. Anybody else have this problem, and if so what are you doing about it? Is it caused by the antibiotics?
Initially I lost my appetite and I wasn't understanding why. I started drinking tumeric and ginger tea with lemon,medicinal strength manuka honey, coconut oil and black pepper. I also started taking a probiotic with 12 strains/10 billion active cultures. Also includes a probiotic. The name of the product is Trunature. I also take liquid vitamins and a sublingual B12. I also take CBD oil. My appetite is much better.
Hi @extratiredalway I lost alot of weight also but mine was through anxiety as when I sorted the anxiety I started putting on weight again, with the help of Fortasip drinks from my gastro Dr, I have been on the big 3 for 4 yrs and now have more of a problem keeping the weight off unfortunatly. Take Care Heather
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@heathert What aare fortasip drinks. I continue to loose weight and have very little appetite.
@erawl I am not on antibiotics and I am loosing weight. I'm 5'7" and weight 100 lbs. No appetite. I've tried counting calories but I cannot eat 3500 calories a day, which, I believe, is the number to gain a pound. I have trouble with dairy so eating pints of ice cream just makes me feel sick. Flib
@flib you get Fortisip, made by Nutricia, from your Dr (I am in NZ but hopefully you can get it), or you can buy them on amazon.) they are really yummy if you buy the ready made pottles (the make it your self powder is yuck) and just a small drink is a meal, they work wonders, I am usually 60kg(132lbs) but went down to 47kg(103lbs), it was awful, could not look at my self in the mirror I was so skinny. They have some milk protein in them but it diddnt affect me badly. Anxiety is what makes me drop weight , I am still on the meds but got my anxiety sorted and I am not dropping weight.. Good luck and let me know how you get on.
Liked by Teresa, Volunteer Mentor
I was on the same for more than a year and also have Gerd. I lost no weight.
I was told that when we have bronchiectasis, just breathing causes us to burn more calories. So we need more calories to survive. I lost almost 30 pounds in the last year. I felt lousy and lost my appetite and my stomach shrunk. I'm at BMI 20 and make myself eat through the day. We need the reserves to help us through any exacerbation that may come. I had stopped dairy and sugar before this. Now I use coconut milk, coconut milk cheese, and coconut milk ice cream sweetened with stevia, and I've added back more poultry and some meat. I'm also eating some gluten-free pasta with alfredo sauce. And all of this just keeps me maintaining weight, not gaining. It takes 3500 excess calories to gain a pound. I wonder if my body is fully processing the food I eat. Good Luck and keep eating.
Liked by Teresa, Volunteer Mentor, Terri Martin., Volunteer Mentor
At first, after diagnosis of bronch, but before the big3, I was so sick that eating was nearly impossible. Now after losing 15 lb and 5 months on meds, I am healthier, but weight is still dropping a pound or more each month. I can do dairy, so my coffee is now 2/3 whole milk and 1/3 coffee. Smoothies with added protein and coconut cream are on the menu too. And I'm eating as much full-fat yogurt as I can stomach, but getting mighty sick of it. I don't tolerate wheat or nuts, so have to search hard for a snack/protein bar that is safe and palatable. Can't wait to be done with this! Also with probiotics and ginger tea my stomach feels better, just no appetite. Today I was pleased to manage a whole burger with fixings but no bun. Everything else, my husband wants to eat exactly as I do, and he cannot handle more weight.
I have been doing respiratory therapy for a little over a year now but have not had to deal with many illnesses, but my appetite is very variable and I have trouble holding onto my weight also. I do some of the same things you do to help, but it is challenging. Thanks for posting this as it helps me to understand this illness better.
@erawl, Hi there. I had a pseudomonas infection that caused me to lose 24 lbs rapidly. Once treated, the weight came back on. Either active infection or medications can cause weight loss. Add extra calories to your diet wherever you can.
@sueinmn I use heavy whipping cream in my 2 cups of morning coffee. That may boost your calories also. Can add mayonaise and cheese to mashed potatoes. I had lost 24 lbs rapidly, so I was sneaking in calories wherever I could. Post treatment (on antibiotics since 2013 to present) I have gained 13 lbs back and could pack more on (but I don't want to). I am 5'-4" and weigh 130 lbs. This feels ideal to me. Once the infections from mac & pseudomonas were knocked out, my appetite and weight came back. Hang in there, you will get there!
Liked by Teresa, Volunteer Mentor, Brenda R.
@sueinmn I'm a big fan of peanut butter. On everything. Sliced apples, toasted bread w honey. Mixed in w vanilla yogurt. Slathered on a Little Debbie Oatmeal Cookie. Also mayo and salad dressings. I have limited my dairy some due to it causing congestion for me, which included milk, cheese and cottage cheese. Its a challenge for sure. I'm not affected by nausea, but sometimes anxiety cuts my appetite. I just push thru and eat.
While I don't have the Big 3 I can appreciate the problem of trying to deal with weight loss as I've had three surgeries of the upper digestive tract and have a hard time maintaining weight. I've enjoyed reading some of the suggestions in this discussion group and would like to add a few of my own.
I use a packet of breakfast drink and mix it in my morning coffee. It adds flavor, calories and lots of nutrition. I've also added a tablespoon of peanut butter to hot oatmeal. You certainly have to be careful of any ingredient that might cause more congestion or that might produce an allergic reaction, though.
Liked by Brenda R., Margie E
@hopeful33250 Hi Teresa! Please share what breakfast drink you are adding to your coffee, thank you!
Sure, I add Carnation Instant Breakfast drink (the powered kind). I use one packet per cup of coffee. I always get chocolate but there is also vanilla. (Vanilla does not have as strong of a flavor as the chocolate.) With each packet you get 130 calories, 5 mg of protein and other nutrients. There are probably other powdered protein powders that you could use as well, but this one is easy to find at grocery stores, so I always get it. It was recommended by my doctor as a way to keep my weight up.
Liked by Terri Martin., Volunteer Mentor
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