Hello - please don't give up. I am a DS patient who was revised by Dr Keshshian (Dr K) in August of 15 due to malnutrition that was caused by my ALIMENTARY LIMB BEING TOO SHORT . Yes I said the AL was to short and this was not allowing for proper nutrition or absorption of vitamins. Many people are under this silly notion that the only thing that matters for absorption with the DS is the CC. THAT COULD NOT BE MORE UNTRUE.
My quick story (yes you will see some similarities). I had a DS with Dr Stephen Marshall in Peoria, IL in September of 2013. At the time I did not know that there were two ASMBS standards of care for the DS Surgery. The first being what I call the standard or cookie cutter DS where the Surgeon gives the patient a predetermined CC & AL length without measuring the total small bowel and with no regard to patient height or other medical history. The second being the Hess Method where the total small bowel length is measured and then the patient is given roughly a 10% of the total SBL CC & then and AL of roughly 40% of total SBL. I was given the former with a CC of 100 CM & AL of 150 CM. My total SBL was not measured. A year after surgery I had an emergency intestinal hernia repair as it was causing a blockage. Roughly a month later I ended up back in the hospital for a week as my BP was 70/40, Heart Rate was down in the low 30's and I kept passing out. I was given a full cardiac work up short of stress test. Everything was perfectly fine. When they looked at labs they finally saw that my Total Protein was 4.5, Albumin 2.5, Zinc very low, Copper very low, A, D, E & K were now low and I was very anemic but my Iron and Ferritin were well in range. I was extremely malhourished due to lack of absorption (and later I found out it was due to the AL not the CC). I went on 400,000 IU's of Creon daily (that is what we refer to as a metric shit ton). This brought my numbers back up in to range and I was advised to stay on this until the 2 year post surgical mark as my absorption should have picked up by then.
I started consulting with Dr in April of that year as my oldest son had severe gastroparesis and Dr K eventually did surgery on him and pretty much eliminated the problem. We started talking about my and he agreed that I should try to hold out to the 2 year mark before we did anything. Well in July of last year I dropped about 20 pounds in two weeks (sound familiar) and Dr Marshall told me, well your labs are great (they weren't great and I was on 400K freaking IU's of CREON so guess what they would have bee without it) so let's wait another 30 days. I called Dr K that night (we talked and traded email all the time) and he told me I either needed to have Dr Marshall put me on TPN or get out to him ASAP to get revised to lengthen my common channel. So my wife and I hopped on a plan a week later and were in Glenadale in Dr K's office.
So we talked and Dr K explained several things to me about what he was going to do. The first was that he needed to measure my total SBL to determine what length my CC & AL should have been and then he would do what is called a side by side anastomosis taking some of my BPL (Bilopancreatic Limb) and putting it into the "absorbing part of the DS". It ended up that my total SBL was 725cm, so with a 100cm CM CC and 150cm AL I only had 250cm of 725cm absorbing. That was only 34% of my small bowel absorbing nutrients when it should have been 50% of my SBL absorbing nutrients.....so Dr K added to my channels and got me closer in balance to where I should have been.
What have the results been? I went off the CREON immediately and my numbers didn't drop. Had I done that previously I would have been in the hospital. I am not perfect yet and it has been a slow journey but I have gained roughly ten pounds from 170 pounds at Surgery to 180 pounds now. I am 6'2 so at 170 I am a freaking bone back and I am an ex Offensive lineman in football. My labs are not perfect but much better. Dr K and I decided that my goal weight should be 200-205 lbs and he told me it would take time to get there and I am confident that I will.
Okay now that you have my background and see similarities (BTW I had a stone 3 weeks after my original DS but none since) to your situation we need to get some understanding of your:
- Daily protein intake
- Daily supplementation schedule
- Copy of latest labs
- What are your CC, AL & BPL lengths if known and do you know if you had the Hess Method DS or the standard?
So let me tell you how much protein I eat daily and my supplementation schedule
Daily Protein Intake (all from food
) 200-250 grams minimum
Vitamin Regimen -
Vitamin A 200,000 IU (divided up in two doses throughout day)
Vitamin D 200,000 IU (divided up in two doses throughout day)
Vitamin E 800 mg (divided up in two doses throughout day)
Vitamin K 4,000 mcg (divided up in two doses throughout day)
Zinc 300 mg (divided up in two doses throughout day)
Copper 2 mg
Cal Citrate 2,000 (divided up in two doses throughout day)
Multi 2/day
Folic Acid Once Daily (have to check dose)
Vit C Once Daily 500 mg
Probiotic Primal Ultra Defense 1/Day
Protonix 40 mg 2/day
B12 None as my numbers were very high to begin with
Iron None as I am well within range (I am still iron deficient anemic)
So as you can see I eat a ton of protein and I take a ton of vitamins. We need to see how your numbers compare but I have a feeling you are probably nowhere near these levels.
Please provide the information I requested and as the ladies have already stated , WE CAN AND WILL HELP. Before talking to Dr K you really need to get this information documented as he will want to know, and yes you should absolutely talk to Dr K. He is the best Dr of any sort I have ever met as he is incredibly curious and incredibly compassionate wanting nothing but the best for anybody, HIS PATIENT OR NOT. I hesitate to say this at times because I feel like I burden the man, but the first time I emailed him to talk to him about my son's case was on a Saturday morning around 7 AM central. I went from my office to get a cup of coffee and by time I was back I had missed a call from California. Yep, Dr K replied to my email with a phone call within 5 minutes. I can't tell you how many emails we have traded since then but it isn't double digits it is in the hundreds. I tell you this to let you know that he is incredibly responsive and wants to help. Get the information for us and then reach out to Dr K. You can find his direct email on dssurgery.com. You can call or email his staff, who are great, but you can also email him directly describing your situation and that you are looking for some help in solving your problems.
Finally, I know you are tired and frustrated. Believe me I know how tiring and frustrating it is to feel weak and hurting all the time due to malnutrition. That being said, PLEASE DO NOT JUMP INTO ANYTHING. You might respond to simple changes in diet (Upped protein - do that immediately) an increased supplementation, or you could end up like me needing a revision to get your channel lengths the proper dimensions so they are optimally absorbing., or it is possible you need a complete reversal but I think it is very possible that you don't need that.
Sorry for the book, but welcome and please get us the protein and supplementation schedule/dosing immediately. We can help. Some of these ladies are more than 10 years out and doing very well. I would have been lost without this place because most DS Surgeons offices absolutely suck at nutrition and supplementation guidance....this site is fantastic about that because we live with it, those Nutritionists don't live with the DS and most don't understand it. Hang in there!!