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Diagnosed with mesenterointestinal lymphngiectasia. Having pelvic varicosities. Had Klippel -Trenaunay syndrome since birth. Cure?

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I was diagnosed with mesenterointestinal lymphngiectasia when I was 8 months old in 1967. Biopsies were done at an ex-lap that was done at the time. It was an open and shut case. Apparently the lymhangiectasia was massive, and it could not be removed. I had no real symptoms of lymangiectasia after pain and poor feeding in early infancy except low lymphoctes until I was in my twenties when my protein and albumin started running low. Now at 46, I have since been on TPN several times, had a g-tube for feedings with vivonex for three years, and had a surgery in 2002 laparoscopically to remove adhesions and do biopsies, also to rmove my "ugly, veiny" appendix. I apparently also have pelvic varicosities, which does not surprise me, because I have had Klippel -Trenaunay syndrome since birth. This last month I had to start taking spironolactone for the first time for generalized edema, which when resolved resulted in a 15 lb weight loss. My primary doctor has continued the spironolactone at this time.

I have heard that sando statin has been used for IL. I don't know if my fat and protein goals are on target. and I don't know if I should be taking vitamins. I have the nausea and occasional vomiting, but I don't get diarrhea or constipation. I have no blood in my stool, but it often floats. It is not light in color. It is formed, and regular, not foamy.

I often use soy protein in skim miik to XXXXXXX my protein reauiremtnts, along with milk and fat free yogurt, as well as beans. Is this okay? Are there any tests I shoud be taking?? My doctor wants me to be taking fish olil for familial high cholesterol. Is this a good idea, for me to be eating oil? I know MCToil is okay, but fish oil? Is there reeally any reason for me to add mct oil if I can get by without it? After having been on TPN and g-tube feedings for so long, I have a difficult time with eating. Is there a way to get over that?

I know I have a lot of questions, I thatnk you in advance for you time.


I have been trying to manage my lymphangiectasia (IL) with diet, fat uneder 30 g/day, protein over 130g per day. I have had to go on spironolactone due to anasarca this last month. I am 5'3".

I am wondering if you have any good ideas about managing the lymphangiectasia. I am on the Fentanyl 75mcg patch and Norco 10.325 qid and hyscyamine 0.325 er q 12 hours for pain and phrnergan 25mg q 4 hours prn for nausea.
Posted Thu, 12 Sep 2013 in Digestion and Bowels
Answered by Dr. Amit Jain 2 hours later
Brief Answer:
Sandostatin is found to be useful

Detailed Answer:
Hello! Thanks for putting your query in XXXXXXX I am a Gastroenterologist (DM). I can understand the problems you must be facing

You should do:
1. Among fat you should take medium chain triglyceride which is present in XXXXXXX amount in coconut oil. And this is must
2. Protein diet you already taking in good quantity, even then if required may take albumin infusion intermittently
3. For anasarca aldactone, may be low salt 2gm/day
4.Vitamin supplement is required especially fat soluble vitamins like Vitamin A,D,E and K
5. Injection Octreotide (Sandostatin) is found to be useful in many case as it prevent enteric loss of proteins
6. Yes you can take soy protein in skimmed milk. Other XXXXXXX sources of protein are cheese, soyabeans, and white part of egg
7.I don't think fish oil is recommended at least in IL. I have never heard or read about it.
8. You should also take a proton pump inhibitor like rabeprazole along with a prokinetic agent for nausea and gastric upset after taking meals

I hope I have answered your query and this will help you. Remain in touch and get-well soon.
Above answer was peer-reviewed by
Follow-up: Diagnosed with mesenterointestinal lymphngiectasia. Having pelvic varicosities. Had Klippel -Trenaunay syndrome since birth. Cure? 1 hour later
How much MCT should I take if my protein need is 130 g and my total calories are 1500 per day?
Also, I am getting about 30g fat from food, but I can cut this down.
How much medium chain triglyceride oil do I need to take daily in order to stay healthy?

My calorie allottment is 1500 per day, I am 5'3" and 180 lbs and trying to lose weight. My protein needs are 130 grams per day and I will calculate my carb needs after you tell me how much fat I really need per day; I was consuming 30 grams of mostly unsaturated fat per day; the only saturated fat I got was the little that came from chicken breast or fish. I tried to eat some oliy fish a couple times a week for the essential fatty acids.

If you could tell me my total fat needs and my mct fat need, I would appreciate it, because I don't know how to figure it out.
Answered by Dr. Amit Jain 11 hours later
Brief Answer:
MCT 40gm/day will be adequate

Detailed Answer:
Hello!Usually other fats long chain fatty acids give around 10kcal/ gm

And MCT gives around 8Kcal/gm

Medium chain triglyceride 40 gm/day will be sufficient and helpful. Try to avoid rest of the fats however other should not be more than 10gm/day

Protein 130gm / day is adequate since you are also loosing proteins from GI tract

Your BMI is 31.9, so you definitely required to loose weight, I hope presently there is no swelling of any part of the body that is anasarca otherwise BMI will be false

You can take 1500 kcal/day

Above answer was peer-reviewed by
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