Protein malabsorption
OK....I think I am in the right forum now and I have had some great responses and supportive feedback but let me reiterate my situation please in hopes of not just suggestions but maybe someone out there can have a conversation with me from learning to deal by experience or education.
Just to give you an idea of my situation, I have to have no less than 250 + protein intake per day and I have to eat up to 5000 calories per day. If I don't eat that much or I get added excercise I start loosing weight with in a day. I try hard to keep my carbs about 100 carbs less than protein and even though when they 1st tried to measure my fat and couldn't get a reading since I had no fat, I still keep track of my fat intake as well.
When I was on the TPN for those 3 mos as well as eating regular foods my blood levels got almost to normal before stopping it. The odor I presented with frequently had gone away and I felt sure I was going to be safe and well. After about 3 months I started having the odor again and after having blood levels done in Feb and again in March it was established my protein had gone down to 3.3 and A,K vitamins had gone down as well as zinc. It has become clear I can't maintain my protein and thus my vitamins are falling off. Also, I'm anemic. I have been following a vitamin regimin from Tufts Weight control clinic and from Bariatric Advantage products per my nutrtionist. It seems clear I need to have another operation to redo the length of malabsorption, my short bowel needs to be lengthened I guess. If I could just get rid of the odor that has come back thru more correct nutritional intake I would beable to avoid the operation. Can anyone address this? My next apt at Tufts is June 21. Thanks
Just to give you an idea of my situation, I have to have no less than 250 + protein intake per day and I have to eat up to 5000 calories per day. If I don't eat that much or I get added excercise I start loosing weight with in a day. I try hard to keep my carbs about 100 carbs less than protein and even though when they 1st tried to measure my fat and couldn't get a reading since I had no fat, I still keep track of my fat intake as well.
When I was on the TPN for those 3 mos as well as eating regular foods my blood levels got almost to normal before stopping it. The odor I presented with frequently had gone away and I felt sure I was going to be safe and well. After about 3 months I started having the odor again and after having blood levels done in Feb and again in March it was established my protein had gone down to 3.3 and A,K vitamins had gone down as well as zinc. It has become clear I can't maintain my protein and thus my vitamins are falling off. Also, I'm anemic. I have been following a vitamin regimin from Tufts Weight control clinic and from Bariatric Advantage products per my nutrtionist. It seems clear I need to have another operation to redo the length of malabsorption, my short bowel needs to be lengthened I guess. If I could just get rid of the odor that has come back thru more correct nutritional intake I would beable to avoid the operation. Can anyone address this? My next apt at Tufts is June 21. Thanks
NoMore B.
on 5/18/12 11:29 am
on 5/18/12 11:29 am
I know of at least one other patient that was given a 25cm common channel by your same surgeon. My concern would be that he did the same to you, despite what your op report might say.
You need to be evaluated by a real DS surgeon. I doubt Tufts will understand your anatomy and will likely want to take down your DS. Unfortunatley, to see a real DS surgeon you're going to have to travel. The closest to you will be in NY or NJ.
You need to be evaluated by a real DS surgeon. I doubt Tufts will understand your anatomy and will likely want to take down your DS. Unfortunatley, to see a real DS surgeon you're going to have to travel. The closest to you will be in NY or NJ.
Joanne ....you have just confirmed what my instincts have been telling me about Tufts. Do you know a DS surgeon in NY? Dr Schlesinger made no bones about saying he did 25cm common channel. Do you have any ideas about the nutrition aspect of this? I would love to not have another operation if this odor can be controlled by nutrition. I have been following my instincts and doing my research and no one in Maine has a clue what they are dealing with. I have no problem traveling to be successful. I'm not concerned with gaining weight if I do have a partial revision because I have to eat all day long into the night to get enough food into me to maintain a size 8. I had gone to a size 6 and was borderline size 4. I looked like a true 3rd world victim. Thanks
A 25 cm common channel is WAY too short! Your bilipancreatic juices don't have time to break down anything! The shortest my surgeon does is 75cm, which is what I just happened to measure out to, I think her max is 125cm.
Your body is only getting a "whiff" of the food you eat, and the vites and minerals you ingest.
Have you talked to your doctor about Creon? It's a Rx digestive enzyme that you take with food ( and I now also take with vites) to help digest the food you take in. It amounts to a partial pharmaceutical reversal, but with a 25 cm CC, I would think you'd be heading for a revision to a longer common channel. Obvously, your surgeon did not measure for the CC by using the Hess Method.
Meantime, get a hold of Vitalady www.vitalady.com ! she has a regiment for DSers and for Deficiencies.
I have to eat about the same amount of calories as you, and I was getting 300g of protein in a day, until the NUT told me I could mess yup my kidneys. I cut it back to 200, and my prealbumin is still in the low normal range. I have never been on TPN. I have a loss limit imposed by my PCP of 160 final weight, and you can already see my ribs through my upper chest! I caried most of my weight in my lower body.
So I was, and still am due to loose skin, a pear shape.
Thanks for telling me your story. This is the first time I am hearing there are others out there like me. I have been told here on the east coast I am about as rare as maybe 2-3 like me in the US. Just shows you the lack of knowledge up here. I have said this for several years. I want to reduce my intake to about 3000 cal and try to keep my protein up at 200-250 and keep my carbs balanced accordingly. I was once told fat is my friend so now I know I need to eliminate more fat from my diet. I drink 3 viles of Proasis a day which gives me 75mg of protein and about 300 cals. I had gotten up to 17 on my albumin but I don't know what it is now. As I said, my prealbumin is at about 3.3 or 3.7 which the head of bariatrics here said she was not going to do anything about unless my other symptoms come back...tissue thin skin, easy bruising, loss of hair, burning mouth, swelling from abdomin down to feet,and bleeding, etc. Somehow I have to be rid of the odor but I haven't been able to come up with the cause. Dr kim at Tufts had no idea where it would eminate from but I have to assume it's due to the short bowls. Still, if that is the case how come it only presents sporadically? Any thoughts on this? Thanks again