mistercy
Full Member
Posts: 228
Surgery Type: DS
Surgery Date: 03/26/2013
Surgeon: Mitchell Roslin
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Post by mistercy on Jul 27, 2014 7:55:30 GMT -5
Listen to NYB, she knows what she's talking about. If you have a good relationship with your PCP, they can do things like prescribing Creon. Is your PCP knowledgeable about your DS? Is your PCP on Health First? It's true -a surgeon like Herron is more focused on surgery - I switched to him because I needed the hernia repair.
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Post by Melinda on Jul 27, 2014 9:31:53 GMT -5
Again, I don't think adding 1/2 of a baked potato one day is going to do anything to make you gain weight. You will need to consistently add carbs to every meal. Protein only and you will lose weight. I've said, Jp and NYB also stated, carbs really are the answer. If you absolutely run to the bathroom after one little bit of carbs, then start taking Immodium. Potatoes, rice, brown rice, breads (try different kinds), ice cream, more yogurts, crackers (I enjoy a gluten free type I get at Sam's Club), pastas, there are endless things to try. Drinking protein shakes and eating more protein will not put weight on you. Creon may help, but again, it will do NOTHING without adding in the carbs. Sugar does bring about weight gain, but if you have bathroom issues that bad, that will probably send you right away to the bathroom. Fruit for instance might give you issues but that's a carb. For a while I was drinking fruit smoothies and gained weight. I had to cut them out for a while to lose the weight again. Have you tried bananas? I never had to run to the bathroom after eating those. Apples or grapes I did, but never bananas. You obviously need to eat, and eat a lot more. A bite or two here or there isn't going to cause you to gain weight. It has to be a real concentrated effort with substantial amount of food increase in your diet EVERY day to see any sort of changes.
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Post by newyorkbitch on Jul 27, 2014 9:45:18 GMT -5
Start with whole grain bread, brown rice, brown rice cakes, sweet potato, lentils, chick peas...try immodium, try taking some beano when you eat...
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Post by lovy19 on Jul 27, 2014 10:23:14 GMT -5
Thank you again for your continued support and advice... Is beano over the counter? also in ref to vitamins I take vitalady Vits....tried to snap a pic of exactly which ones I take but for some reason i cant upload so I will write it
Morning 5 Tender Iron 60mg Capsule (300 essential Elements) 1 Puritans Pride Copper 2mg
Mid-Day 1 Tender Vitamin A 25,000IU 1 Superior Source Vitamin B-12 5,000mcg 2 Tender Calcium (300mg=600mg Elemental) 1B Complex-55 1Tender Vitamin E 400IU 1 Kirkland Multi Vitamin/Mineral 1 Puritans Pride Zinc 50mg
Evening 2 Tender Vitamin A 25,000IU 1 Tender Vitamin E 400IU 2 Tender Calcium (300mg=600mg Elemntal) 1 Kirkland Multi Vitamin/Mineral 1 Tender Vitamin D3 50,000IU 1 Puritans Pride Zinc 50mg 1 Superior Source Vitamin B-9 Folic Acid 1,200mcg
Bed Time 2 Tender Calcium (300mg=600mg Elemental) 1 Tender Vitamin A 25,000IU 1 Superior Source B-1 Thiamin 1 Country Life Magnesium Citrate (140mg Elemental) 1 Kirkland Vitamin C 1,000mg 1 Tender Vitamin K-1 1,000mcg
I will also try the brown rice, bread lenthils etc.going to CVS to get immodium and beano..will also go to the supermarket for these items I hope it helps because my stomachis making a strange loud noise no matter what i eat, this is why i thought i needed to speak to a surgeon to find out if anything else is going on with me.
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Post by lovy19 on Jul 27, 2014 10:39:29 GMT -5
Potatoes, rice, brown rice, breads (try different kinds), ice cream, more yogurts, crackers (I enjoy a gluten free type I get at Sam's Club), pastas, there are endless things to try. Drinking protein shakes and eating more protein will not put weight on you. Creon may help, but again, it will do NOTHING without adding in the carbs. Sugar does bring about weight gain, but if you have bathroom issues that bad, that will probably send you right away to the bathroom. Fruit for instance might give you issues but that's a carb. For a while I was drinking fruit smoothies and gained weight
Hello I still eat small portions but it is all day long, I can eat all day but I m constantly in the bathroom, this morning I had 3 slices of bacon and two sunnyside up eggs and a slice of wheat toast and after eating that I went to the bathroom three times smh I know it was the toast. I have tried ice cream, yogurts and anything with sugar content and straight to the bathroom I go, its becoming stressful, I would love to drink a smoothie but I know the consequences.. I just want it to stop, I am going to try the immodium and pray it helps because pretty soon I will be a skeleton.
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Post by lovy19 on Jul 27, 2014 10:42:03 GMT -5
My PCP is somewhat knowledgeable I print him out papers to read up on it but its been a while since I saw him due to insurance problems, at one time I was seeking a knowledgable PCP when it comes to DS but I could not find one. I will speak to him about adding creon, This is why I wanted to see the surgeon as well because he will know exactly what the problem is. I just would love to feel normal again.
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Post by Joanne on Jul 27, 2014 12:37:48 GMT -5
My PCP is somewhat knowledgeable I print him out papers to read up on it but its been a while since I saw him due to insurance problems, at one time I was seeking a knowledgable PCP when it comes to DS but I could not find one. I will speak to him about adding creon, This is why I wanted to see the surgeon as well because he will know exactly what the problem is. I just would love to feel normal again. I agree you dont necessarily need a surgeon. Surgeons tend to think of doing surgery - that's what they do. A surgeon might suggest lengthening your common channel, but I dont think you're there yet. A good internest will know how to deal with this. Creon isn't specific to DS'ers. There are other conditions that make someone malabsrob. But I also think you could try an elimination diet. Try to stabilize your diarrhea by eating only those things you know dont cause you problems. Then eat as much of them as you can. Then slowly add in complex carbs one at a time, gradually increasing what you eat both in variety and quantity. My suspicion is you are losing so much weight because everything is running right through you. Have you ever been tested for C-diff? ETA: I just read some of the other replies where you are looking at seeing Dr Herron at Mt Sinai. Not a bad idea, either. From what I know about him, he is very conservative, methodical, and helpful. If he takes Medicaid and you could see him, start there. You can always find a good internist, too.
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Post by lovy19 on Jul 27, 2014 14:10:08 GMT -5
Hello thank you for your feedback... I know that I can eat chicken, fish, steak...basically any meat with no diarreah, but once I add a potatoe, rice, bread etc it starts, i can't even eat a cracker, I can eat meats all day but then its like im on the atkins diet I will still lose weight. I know I need the complex carbs but they run right through me. This is why I wanted to start with Dr. Herron he could at least tell me what is wrong with me by running certain tests. I went and purchased Immodium I will have barbecue chicken and baked potatoe with a lil brown rice and see what happens. I meant to ask what is a C-Diff?
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Post by newyorkbitch on Jul 27, 2014 14:46:02 GMT -5
Google it please.
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Post by Gail R on Jul 27, 2014 16:05:12 GMT -5
Some people have said that they tolerate carbs better when consumed with plenty of fats. Try a third of a potato with lots of sour cream, butter and cheese.
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Post by lovy19 on Jul 27, 2014 17:36:46 GMT -5
Hi Gail it is so nice to hear from you. Thank you so much for the feedback
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Post by Girlrocker on Jul 28, 2014 8:56:47 GMT -5
Some people have said that they tolerate carbs better when consumed with plenty of fats. Try a third of a potato with lots of sour cream, butter and cheese. I'm one of those! You've gotten a lot of good feedback and guidance. I'm sorry you're having diarrhea issues and you do need to see a good internal medicine doctor, someone ideally who specializes in GI if possible. I do well with my starchy carbs when they are piled with protein and fat; lots of butter on my toast with my eggs, tuna/egg salad with whole fat mayo on bread or toast. I mostly eat Udi's gluten free bread at home and work, but I'll eat regular bread/buns when I get a cheeseburger or a sandwich from Subway. Sour cream, butter, mayo, salad dressings, avocado/guacamole all great fats to incorporate into meals that have starchy regular or complex carbs.
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Post by lovy19 on Jul 28, 2014 13:11:40 GMT -5
Good Afternoon I just wanted to say you guys are AWESOME!!!! I took advice from all of you, first I went to the pharmacy and purchased Immodium, I then went to the supermarket and purchased a small bag of brown rice, a bag of potatoes, sweet yam and green banana, I also purchased wheat rice cakes and whole weat bread. When I came home I cooked barbecue chicken boiled some of the potatoes yam and green banana. I wanted to see if I could keep the food down so what I did was made a plate with two drumsticks a baked potatoe lots of butter a green banana, a piece of sweet yam and a small portion of brown rice. Amazingly I was able to keep it down no running to the bathroom at all I did have a very small amount of gas but not that smelly. I am so excited that I was able to keep the food down, so I decided to eat another small plate and that stayed down as well. This is my first time since surgery that I am able to keep any carbs down so what I am beginning to think is that it was not that I cannot keep carbs down it is the kind of carbs that I was eating. I used to eat candy, cookies, cake anything that I thought would stop the weight loss but all it did was send me to the bathroom so I am thinking that maybe it is the simple carbs that I cannot tolerate. This morning I had some bacon eggs and witha piece of wheat toast and that stayed down as well no BM wow... I bought some yogurt its called probiotic La yogurt but I am scared to eat it because im doing so well lol. I'm still going to see my PCP this week to take labs and also touch base with Dr. Herron. It just feel so good not to be in the bathroom all day. Once again thank you all so much. Oh I was wondering does anyone eat peanut butter and crackers or is crackers a NO NO.
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Post by Girlrocker on Jul 28, 2014 13:28:17 GMT -5
Good Afternoon I just wanted to say you guys are AWESOME!!!! I took advice from all of you, first I went to the pharmacy and purchased Immodium, I then went to the supermarket and purchased a small bag of brown rice, a bag of potatoes, sweet yam and green banana, I also purchased wheat rice cakes and whole weat bread. When I came home I cooked barbecue chicken boiled some of the potatoes yam and green banana. I wanted to see if I could keep the food down so what I did was made a plate with two drumsticks a baked potatoe lots of butter a green banana, a piece of sweet yam and a small portion of brown rice. Amazingly I was able to keep it down no running to the bathroom at all I did have a very small amount of gas but not that smelly. I am so excited that I was able to keep the food down, so I decided to eat another small plate and that stayed down as well. This is my first time since surgery that I am able to keep any carbs down so what I am beginning to think is that it was not that I cannot keep carbs down it is the kind of carbs that I was eating. I used to eat candy, cookies, cake anything that I thought would stop the weight loss but all it did was send me to the bathroom so I am thinking that maybe it is the simple carbs that I cannot tolerate. This morning I had some bacon eggs and witha piece of wheat toast and that stayed down as well no BM wow... I bought some yogurt its called probiotic La yogurt but I am scared to eat it because im doing so well lol. I'm still going to see my PCP this week to take labs and also touch base with Dr. Herron. It just feel so good not to be in the bathroom all day. Once again thank you all so much. Oh I was wondering does anyone eat peanut butter and crackers or is crackers a NO NO. Yes, it's always a good idea to tweak the food intake to resolve problems, and many issues can be resolved this way. It's also a good idea to stay connected to a support community because people who live with this surgery daily really are on top of all the things we deal with. I learned that one a long time ago! Imagine all you could have saved yourself asking sooner the moment you were having problems?! But you asked now, and are sorting things out and that's what is important. It takes trial/error, changing things up to figure out what works best for your own body. There's a set of guidelines food-wise: protein first, 120g or more at your stage (animal based is best), moderate complex/good carbs, nice amount of fat. Which foods work best for you is unique to you. And you have to stop being afraid to try, it's part of the process of figuring it out, worst IS you'll wind up with gas or in the bathroom, and well, you've already been there done that! Maintenance is different and harder, because we either know how to 'diet' or eat like bottomless pits, but not this life in the middle thing. I think you will stop losing and some weight will come back, you just have to focus on the a GOOD food progression, like what you've just added. I love peanutbutter and eat it all the time. It's lower in protein and you have to watch the brands, some have more sugar, but it's a great snack. Good on crackers - pick a complex carb/gluten-white flour free alternatives that doesn't have gluten/white flour, since that definitely seems to not agree! Trader Joes, if you have one, has tons to choose from. Walmart, Target have them too - brown rice based, almond based; Wasa Krisp Bread is good, Kavali, those have found in regular grocery stores too. I also love the soy-flaxseed tortilla chips from Trader Joes, I put everything on them!
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Post by PrettyGirlBounce on Jul 28, 2014 14:02:25 GMT -5
Actually, crackers are a no-no for me UNLESS I load them up with peanut butter, or lots of cheese, deli meats (salami, ham, bologna, etc)....or scoop up tuna, chicken or egg salad with them. Then I have zero negative effects.
Crackers alone? NEVER!!
It's all trial and error as you found out with the yams and other new foods. You tolerated them with ease. Yay!
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Post by lovy19 on Jul 28, 2014 14:22:22 GMT -5
Hello Sharyl you are absolutely correct I should not have waited this long, I wish I had connected sooner because maybe I would not be looking like a skeleton right now. I am gointo go to target and pick up some products, I am also still going to ask my PCP about creon.
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Post by songbird177 on Jul 28, 2014 23:39:49 GMT -5
You can always increase your probiotic to twice a day and see if that helps as well. I had to do that with mine.
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Post by Gail R on Jul 29, 2014 12:44:23 GMT -5
I use a lot of probiotics. I try to find it naturally in foods (google it) and I take two different tablet and capsule supplements. You must take into account that they will often cause a little loose bowel for the first week or so until your body adjusts to them. I truly beleive that they keep my system balanced.
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Post by Girlrocker on Jul 29, 2014 14:17:00 GMT -5
Hello Sharyl you are absolutely correct I should not have waited this long, I wish I had connected sooner because maybe I would not be looking like a skeleton right now. I am gointo go to target and pick up some products, I am also still going to ask my PCP about creon. Hey, now you know, when things go wrong, when your body is talking to you, you won't wait! And you know we are here for you any time. Stick around, even if you don't always post, reading, skimming will help you keep in touch with a support community while you transition through all of this. I don't doubt you're genuinely concerned about your weight, but the flip side is some people think they are really skinny, bony and it's not quite what they think. Of course, can only tell so much sometimes what people are saying in posts. You might want to see first how you do with changing up your food, give it a month or so. It's not a fast process, putting on good weight. If you are truly concerned that you are border-wasting away, than check re: Creon too.
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Post by Leonie on Jul 29, 2014 14:46:26 GMT -5
Hey Lovey. I am glad that you are taking such positive action. Well done.
May I ask, how often are you eating? My guess is that you should be eating at the very least every two hours.
Here are some carbs that give me no problems: The carbs in heavy cream nuts of all sorts, especially macedamias and almonds, but not peanuts. good quality dark chocolate mushrooms squash strawberries in small quantities tomatoes
I am sure that you will be able to make a list for yourself as you experiment.
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Post by jpcello on Jul 30, 2014 4:57:16 GMT -5
This is why I wanted to see the surgeon as well because he will know exactly what the problem is. I just would love to feel normal again. Lovy - the problem is you're not eating enough carbs. Yes, the carbs will cause some gas and bloating, but the alternative is you will continue to lose. You either need to add carbs to stop the weight loss (complex and simple) or you need to start the Creon to help you absorb what you are eating better. It's all about finding a balance. Right now you are completely out of balance (not enough carbs, too much weight loss).
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PeteA
Full Member
Posts: 221
Surgery Date: 4/15/13
Surgeon: Dr. Phillip Schauer
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Post by PeteA on Aug 3, 2014 16:06:45 GMT -5
Just because you are not newly post-op doesn't mean that pro-biotics won't help. The high protein diet may have thrown something out of whack with your gut flora that a probiotic would help. I would be more inclined to experiment with the immodium first though.
I think you might find some drinks that would be intended to help you add weight. I would stop at like a GNC and talk to them about meal replacements as opposed to protein shakes. Something meant to build you up.
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Post by goodkel on Aug 4, 2014 3:38:59 GMT -5
At 5'5" and 115 pounds, your BMI is still in the normal range at 19.1.
Normal weight = 18.5–24.9
I wouldn't do anything unless your BMI falls into the underweight range.
You are only 2 years out, just at the end of your rapid weight loss window.
Many people at this point find that they look drawn and haggard until their fat redistributes and their skin shrinks a bit.
Plus, there is bounceback you haven't had, yet, that can add 10-20+ pounds to your final weight.
You are not underweight even if you appear so. You are supposed to see the veins in your arms and the bones in your neck.
If you DO hit an underweight BMI, the only safe way to stop weight loss and not sabotage yourself with carbs is with Creon.
I've seen many people regain WAY more than they wanted by using carbs to try to stop/slow their loss.
Once you are officially underweight, if you try the Creon and it doesn't work for you, then it is time to consult with your surgeon about a revision to increase the length of your common channel.
Meanwhile, relax. You are doing fine and what you are going through is right on schedule.
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Deleted
Deleted Member
Posts: 0
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Post by Deleted on Aug 5, 2014 8:20:45 GMT -5
I am totally with Goodkel and others. You not underweight yet. don't resort to the Creon quite yet.
As far as the carbs go, I'm with Gail, Always add fats and proteins to your carbs, no mater what kind of carbs. I tend to think that fats slow the absorption of carbs, and with us, that can mean the difference of walking calmly to the bathroom or RUNNING!!!..
Also, Loose stools are NORMAL, True diarrhea is not.. if it is not really watery stool, you just have loose stool. nothing to worry about.
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Post by illinids2 on Aug 5, 2014 11:03:02 GMT -5
I am totally with Goodkel and others. You not underweight yet. don't resort to the Creon quite yet. As far as the carbs go, I'm with Gail, Always add fats and proteins to your carbs, no mater what kind of carbs. I tend to think that fats slow the absorption of carbs, and with us, that can mean the difference of walking calmly to the bathroom or RUNNING!!!.. Also, Loose stools are NORMAL, True diarrhea is not.. if it is not really watery stool, you just have loose stool. nothing to worry about. Carbs don't tend to bother me alone but 8 do also tend to eat carbs while having protein and fat. For example fatty rib tips and fries and beans. Rice or pasta with cheese and some meat. Rarely do I just do carbs alone so I agree with your philosophy on mixing carbs with fat.
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Post by Girlrocker on Aug 5, 2014 11:54:34 GMT -5
Yes, fat is the other happy 'key' to the DS and it amazes me how working it in makes things better.
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Post by curlygirlny on Sept 1, 2014 17:01:46 GMT -5
Hope everything worked out for you. Any update?
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Deleted
Deleted Member
Posts: 0
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Post by Deleted on Sept 2, 2014 8:11:54 GMT -5
Some people have said that they tolerate carbs better when consumed with plenty of fats. Try a third of a potato with lots of sour cream, butter and cheese. Yup, Same here, mixing Fats with Carbs is a good way to slow the processing it seems. I think our guts have to work thru the fats to get to the carbs, so eating them together makes the carbs less exposed to stomach acids, and absorption in the alimentary limb of our systems, since only bile in our common channel breaks down fats.
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PeteA
Full Member
Posts: 221
Surgery Date: 4/15/13
Surgeon: Dr. Phillip Schauer
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Post by PeteA on Sept 3, 2014 14:04:24 GMT -5
I saw a lot of good suggestions. Just a quick note about the protein shakes. For gaining weight you will want to look at some that have more than just protein in them. I think they would be under meal replacements. Stop at any vitamin place - GNC, Vitamin shoppe and tell them you are looking for something to add some weight. They should be able to point you in the right direction even if you don't buy what they have.
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Post by kittykatkris on Sept 4, 2014 7:50:42 GMT -5
hey I didn't take the time to read all of the posts to your question but I just wanted to let you know if you have Medicaid you can switch to United health care community insurance, dr Roslin is now taking that. It takes a few weeks for you to kick in. and don't worry if it winds up you don't like the insurance you can switch it again every 3 months!
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