DSRIGGS
Yes, that is chocolate covered bacon
- Joined
- Nov 19, 2014
- Messages
- 4,635
Hello - I am a DS'r who is roughly 14 months out from surgery and I have gone from 361 pounds pre-op to 173--177 now. The weight flew off in the beginning and for the first 3 months I ate very little, but at about 6 months I really began to eat a great deal of food....more than most DS'rs from what I am told. In fact I eat at least 250 grams of protein daily, as well as probably 175-200 carbs a day (try to do a lot of veggies, some whole grains and try to stay away from simple carbs too much, but I won't lie I do have some).
Yes I am Scott IlliniDS from the other board and was outspoken, in fact didn't like the way the break off of this board happened. Now that we have that out of the way, I am here looking for support socially/personally and from a medical/living with DS perspective.
Okay, so to my current issues. I have felt very weak and fatigued since day 1 of this journey and it has gotten significantly worse. I supplement strongly and have had labs at least every 3 months and started noticing the beginning of a downward trend with Albumin, Total Protein, Hemoglobin, Hematocrit (Yes I am anemic, but not iron deficient and I am seeing a hematologist) and after an emergency hernia repair the end of September (Peteresen Defect) I found out my Zinc was low (it was not in previous draws). As I mentioned above I eat a ton of protein daily and yet my Total Protein and Albumin continued to drop. My surgeon's office did not even think me low protein and Albumin was an issue (4.8 and 2.5 respectively) so I had to push it with my GI who ran a fecal fat test which came back incredibly high showing extreme malnutrition which my lab values obviously backed up. Additionally I was told by surgeon's office to go on Iron for anemia even though my ferritin was fine (nearly 300) and they didn't even test any other iron components (I had them tested and they were fine)...so I found out on my own that I was not iron deficient anemic.
In any case I was in the hospital 7 of the last 15 days as I was very dizzy, weak, fatigued, lower legs increasingly ache, unbalanced, nauseous, and my heart rate was dipping into the 30's and my BP was also very low at around 80/40. The hospitalist did a cardio work up including an echo and the ticker is fine, so he finally agreed that I needed to go on CREON to address the spiraling downward trend for Tot Protein and Albumin. He put me on one 6,000 unit pill of the Pancreatic Enzyme with meals, and then his replacement a couple days later took that up to 18,000 units with meals and 6,000 with snacks. A few days later when I got out of the hospital my GI's office called me saying the results of the fecal fat sample were back and I needed to go on 72,000 units with larger meals (max dose) and 36,000 units with smaller meals. This was roughly a week ago and although I haven't gained any weight (and I wasn't losing significantly for the 2 months before..just weak and fatigued with protein numbers dropping) I am pretty confident the CREON is doing what it is supposed to because I am not having oil slicks and my poop is more solid/less oily.
My hematologist whom I saw today to review labs she drew last Friday to investigate my anemia, told me that the issues I am having are due to the malnturition and that until I can get caught up that I will probably continue to be anemic and struggle to get my Zinc (0.47 on 0.66 - 1.1 range) and Copper (Copper just slightly out of range ...0.72 with ref range of 0.75 -1.45) up. That being said I double my zinc tonight so I will be taking 200mg per day and am starting with 2mg of copper a day. If my RBC's (3.5) don't come up in month the Doc is going to do a bone marrow aspirate/biopsy to check production and possible issues/causes.
A question I have for any of you with any history of malnutrition. With such low Total Protein and Albumin numbers I am told it is a slow go to get back in range. I am getting ready to call my GI (not scheduled back until December, 11) to see if TPN is an option to boost me back to a normal range and then use the creon for maintenance. Thoughts on if that is possible? When I spoke to the hospitalist about TPN she was fearful of complications and didn't think it was a good idea, or what it would do for me. Any ideas/history in this regard?
I really feel like hell right now and am having difficulty driving and working so I need to get well quickly. The malnutrition is creating a host of issues and I believe is the root cause for almost all of my medical issues right now, so I want to address this as quickly as possible and am hoping I don't have to wait for the total protein to come up by better absorption from the CREON enzyme (hoping some infusion based therapy can get me up to range quickly).
Thanks for the input and sorry for the book.
and hello to many of you that I know from the past...good to see many of you are here.
Yes I am Scott IlliniDS from the other board and was outspoken, in fact didn't like the way the break off of this board happened. Now that we have that out of the way, I am here looking for support socially/personally and from a medical/living with DS perspective.
Okay, so to my current issues. I have felt very weak and fatigued since day 1 of this journey and it has gotten significantly worse. I supplement strongly and have had labs at least every 3 months and started noticing the beginning of a downward trend with Albumin, Total Protein, Hemoglobin, Hematocrit (Yes I am anemic, but not iron deficient and I am seeing a hematologist) and after an emergency hernia repair the end of September (Peteresen Defect) I found out my Zinc was low (it was not in previous draws). As I mentioned above I eat a ton of protein daily and yet my Total Protein and Albumin continued to drop. My surgeon's office did not even think me low protein and Albumin was an issue (4.8 and 2.5 respectively) so I had to push it with my GI who ran a fecal fat test which came back incredibly high showing extreme malnutrition which my lab values obviously backed up. Additionally I was told by surgeon's office to go on Iron for anemia even though my ferritin was fine (nearly 300) and they didn't even test any other iron components (I had them tested and they were fine)...so I found out on my own that I was not iron deficient anemic.
In any case I was in the hospital 7 of the last 15 days as I was very dizzy, weak, fatigued, lower legs increasingly ache, unbalanced, nauseous, and my heart rate was dipping into the 30's and my BP was also very low at around 80/40. The hospitalist did a cardio work up including an echo and the ticker is fine, so he finally agreed that I needed to go on CREON to address the spiraling downward trend for Tot Protein and Albumin. He put me on one 6,000 unit pill of the Pancreatic Enzyme with meals, and then his replacement a couple days later took that up to 18,000 units with meals and 6,000 with snacks. A few days later when I got out of the hospital my GI's office called me saying the results of the fecal fat sample were back and I needed to go on 72,000 units with larger meals (max dose) and 36,000 units with smaller meals. This was roughly a week ago and although I haven't gained any weight (and I wasn't losing significantly for the 2 months before..just weak and fatigued with protein numbers dropping) I am pretty confident the CREON is doing what it is supposed to because I am not having oil slicks and my poop is more solid/less oily.
My hematologist whom I saw today to review labs she drew last Friday to investigate my anemia, told me that the issues I am having are due to the malnturition and that until I can get caught up that I will probably continue to be anemic and struggle to get my Zinc (0.47 on 0.66 - 1.1 range) and Copper (Copper just slightly out of range ...0.72 with ref range of 0.75 -1.45) up. That being said I double my zinc tonight so I will be taking 200mg per day and am starting with 2mg of copper a day. If my RBC's (3.5) don't come up in month the Doc is going to do a bone marrow aspirate/biopsy to check production and possible issues/causes.
A question I have for any of you with any history of malnutrition. With such low Total Protein and Albumin numbers I am told it is a slow go to get back in range. I am getting ready to call my GI (not scheduled back until December, 11) to see if TPN is an option to boost me back to a normal range and then use the creon for maintenance. Thoughts on if that is possible? When I spoke to the hospitalist about TPN she was fearful of complications and didn't think it was a good idea, or what it would do for me. Any ideas/history in this regard?
I really feel like hell right now and am having difficulty driving and working so I need to get well quickly. The malnutrition is creating a host of issues and I believe is the root cause for almost all of my medical issues right now, so I want to address this as quickly as possible and am hoping I don't have to wait for the total protein to come up by better absorption from the CREON enzyme (hoping some infusion based therapy can get me up to range quickly).
Thanks for the input and sorry for the book.
and hello to many of you that I know from the past...good to see many of you are here.
...BUT it is NOT in a condescending, this is my site, me and my girls are in charge kind of way. A lot of the candor is laced with pragmatic realism and most importantly for me FACTS, not just opinion, I know you know what I mean! I've always said that sometimes our written words are many times not taken in the context they were meant, because it is really hard to express emotion and feeling and intent in the way we write, so I try to give everyone the benefit of the doubt. We are all different, but have one VERY important common denominator and having access to this kind of REAL medical knowledge is an absolute nessecitty, so, again, WELCOME!!!
