Hello from Washington State home of the Seahawks

[2legsshrt]

I had a BPD-DS in 2001. I lost a lot of weight. My first problem was malnutrition in 2007. It ended up with me in a coma and both legs amputated. Now I have had to have Open Heart Surgery which did not go well due to too much calcification of my heart. I was doing pretty good, holding my own now in the last 8 months I started losing weight again. I have lost 30 lbs. in 8 months I take lots of supplements and I am trying to eat 2000 calories at least each day. I don't know what is going to happen. They are still looking into it. I have other problems and I am not sure I could make it through a revision considering my heart situation. I wish I had never done this but it sounded like the answer to my prayers when I did it. It was fairly new at the time. My wife also had it 6 months later and she has gained weight lately but she has a problem with about 6 bowels movements every morning. She has been gaining weight lately but she has been feeling better since she was able to gain a little. We are 62 and I 64. I need to have something happen soon. Dr.Lee Trotter saved my life in 2007. They didn't think I was going to make it. They had given me an infusion of albumin and I stopped breathing. They had pretty much given up on me and told my wife not to expect me to make it. They intibated and put me in a medically induced coma. My heart stopped pumping blood out of my feet, thus amputation. Dr. Trotter was able to get me on the right track, he recognized what was going on and got me on supplement and protein through my feeding tube and I did well or at least I pulled through. He also amputated my legs below the knee and even though he was a bariatric surgeon his skill made it so I was able to be fitted with prosthetics and could walk normally again. I even went back to work, tho not at the same job but worked for 2 years. I can't seem to stop losing weight now and I don't know why but malabsoption is suspected. I am 14 years into this and really don't want to die and leave my wife behind. I hope I can get this straightened out. I will stop now. All I can say is Dr.Trotter said this particular operation should not have been given to us since we were only 100 lbs overweight. It was too drastic and was meant for someone more like 200 or more over. This surgery was performed on me by Dr.Adrian Heap also my wife 6 months later. She has different problems like 4-5 bowel movements every morning. Dr. Heap told us we only had to take a multiple vitamin and we would be fine. Dr. Trotter is going to try to get me on the right track one more time. I live in Spokane, WA and Dr. Trotter has moved to Rapid City, S. Dakota but he has a special place in his heart for me I believe and if he can't get me turned around will do the revision. I have a lot of trust in Dr. Trotter and I think you can understand why. When everyone else had given up on me he didn't and that is why I am here today. I forgot when I was really sick I got down to what would be 120 with my prosthetics. With Dr. Trotters help I got back up to 173 last fall. I now weigh 143.
I pasted this from another group I belong to that I have been getting advice from. I wrote this since then I have been trying to follow advice from them and I have managed to keep my weight loss to a minimum that was in October 2014 I now weigh 139.
I was invited to check this forum out by Brooklyn Girl so I thought well I've got nothing to lose. Since then I have every test they could think of to see what is causing this weight loss. I am currently trying to eat 150g of complex carbs and 200g of protein each day. That is how I have slowed my weight loss.

 

[southernlady]

Welcome @2legsshrt
I am glad you came over here. We will do our best to help. And your story is important for newbies to read.

Does Dr. Trotter have you on something like Creon or considering TPN to help you regain some weight?

Oh, and I do disagree with Dr. Trotter on one thing...I only had 68 excess lbs to lose and still got a DS, however mine was a bit less aggressive than many as my common channel is 175. While many consider the DS extreme for lightweights, it can be customized.

One thing I have learned is that for me, the amount of BM's I have is related to my calcium intake AND how many carbs I eat. And while I try to stay with healthy carbs...I'm not perfect and still slip up. My happy place is two BM's per day, usually in the morning hours. And I eat lots of fat to keep them easy.

 

[DianaCox]

Welcome Pat! I'm VERY glad you found your way here. You have had a very tough road with your surgery (whatever it actually was - Dr. Heap is notorious in the DS community, as you know). It is not that you should not have had the DS - you should not have had whatever it is Heap apparently gave you. Whether it was the DS in a version (too short of a common channel and/or alimentary tract?) that was too drastic - because the DS can be customized - or because you have never gotten proper nutritional advice, I am confident we can give you the information you need to help improve your health.

For starters - have you been prescribed Creon (or Viokase) yet? In order to absorb more calories, including protein, right away, you should be taking these prescription digestive enzymes to enhance digestion of the food you are eating.

Do you have a copy of your surgical report? If he told the truth (some surgeons have "fudged" what they did), it might help us figure out what's going on and what could be done to fix it, either by nutritional adjustment or to suggest a relatively simple surgical revision.

 

[southernlady]

Oh, and btw, Pat, your wife is also welcome to join...my husband is here on his own account as his journey is different from mine. He had his DS 5 weeks before I did.

 

[Bagaof4]

to the board. So glad to have you join us. So sorry to hear of all your troubles, but you will find great information and support here!

 

[Larra]

Hi Pat! Good to see you here. You will find a very well informed group of people who will do whatever they can to help you.

 

[brooklyngirl]

So happy you made it, Pat! I'm not an expert, I'm only 18 months out, but it seems to me like you should be on Creon and/or TPN (IV nutrition). Have either of those been tried yet?

 

[2legsshrt]

Welcome Pat! I'm VERY glad you found your way here. You have had a very tough road with your surgery (whatever it actually was - Dr. Heap is notorious in the DS community, as you know). It is not that you should not have had the DS - you should not have had whatever it is Heap apparently gave you. Whether it was the DS in a version (too short of a common channel and/or alimentary tract?) that was too drastic - because the DS can be customized - or because you have never gotten proper nutritional advice, I am confident we can give you the information you need to help improve your health.

For starters - have you been prescribed Creon (or Viokase) yet? In order to absorb more calories, including protein, right away, you should be taking these prescription digestive enzymes to enhance digestion of the food you are eating.

Do you have a copy of your surgical report? If he told the truth (some surgeons have "fudged" what they did), it might help us figure out what's going on and what could be done to fix it, either by nutritional adjustment or to suggest a relatively simple surgical revision.

According to the operative report it was a usual DS common channel 75cm. It was before he got creative. Dr. Trotter is not my doctor just sort of a friend that pulled me through a tough time he has since relocated to S.Dak. There are no surgeons in my area that even do the DS. I am not on TPN and hope I don't have to be. I am trying to get this under control with diet. It is really weird after my bout in 2007 I gained weight and maintained it for 6 years then just started losing. No major changes. I have not gotten on creon yet waiting to get my diet under control. All of my Blood tests are normal except WBC high RBC low Iron low. Waiting to see a Hemotologist now.

 

[JackieOnLine]

hello & glad you are here

 

[brooklyngirl]

According to the operative report it was a usual DS common channel 75cm. It was before he got creative. Dr. Trotter is not my doctor just sort of a friend that pulled me through a tough time he has since relocated to S.Dak. There are no surgeons in my area that even do the DS. I am not on TPN and hope I don't have to be. I am trying to get this under control with diet. It is really weird after my bout in 2007 I gained weight and maintained it for 6 years then just started losing. No major changes. I have not gotten on creon yet waiting to get my diet under control. All of my Blood tests are normal except WBC high RBC low Iron low. Waiting to see a Hemotologist now.

I think the creon will be the thing to HELP get your diet under control. If I were you, I wouldn't wait if something easy like that could help. Tagging @DSRIGGS maybe he can give some insight since he's been through something similar (and also got the nasty "just eat more quinoa" speech ad nauseum from the same people on PB when it was more serious than that).

 

[hilary1617]

Welcome @2legsshrt ! I'm so sorry for your difficulties!

I would suggest trying Creon ASAP. I don't understand why you would wait to do so. Whatever your diet is, Creon will help you digest it better. It seems to me you are going to be fighting a losing battle if whatever is going into your mouth is being lost rather than digested. If you aren't absorbing, it doesn't matter what you are eating. You can always look to tweak diet later once the food you are eating is better absorbed! Please consider taking Creon or ZenPep now! There's only an upside!

From a personal experience perspective, following a pancreas/liver surgery for cancer, I started losing weight excessively (at a rate of about one pound per day). My surgeon prescribed Creon, which immediately stopped the undesirable weight loss. It also helped improve my nutritional status tremendously. It clearly helped me get more out of my meals. Within *days*, I felt so much better!

I took three 24,000 unit capsules at the beginning of each meal.

Creon did cause me to experience some gassiness when I ate carbs, but the good news is that with the Creon, I really didn't need carbs. I was able to focus entirely on getting in the protein and vitamins that DS'ers really need, adding carbs, which we don't really need, in small amounts just for fun/taste as I liked.

My body finally has adapted and appears to have regained some of the function I lost, so I am off Creon now, but will go back on it in an instant if I lose any weight or have bad lab results.

Wishing you all the best! Hilary

 

[newanatomy]

Hello and welcome, GO HAWKS!

 

[DianaCox]

@2legsshrt: when you see the hematologist, make sure s/he checks for copper and ceruloplasmin, and offers INFUSIONS if your ferritin is less than 30 ng/mL. That is within the normal range for "normies," but we have years of experience on these boards that DSers who get lower than that often have a TERRIBLY difficult time getting back up to a higher range, preferably well into the 100s. If your hematologist needs to confirm this, I *think* I can put him in touch with Dr. Brian Henderson in San Mateo CA who understands this thoroughly - I say *think* because I have just learned to my dismay that he retired at the end of the year. But Dr. Rabkin can confirm this as well, I'm sure.

 

[Larra]

Pat, we (along with other helpful people) discussed the Creon issue months ago on another forum. Yet here you are, still trying to get your weight and nutrition under control with diet alone. I don't understand your aversion to Creon, but it's clear that you have one. To me, at this point, it seems irrational, because you have tried, and tried hard, to work your diet without Creon and it hasn't worked.
Try the Creon! I (and as you can see other well informed people) truly believe it can and will make a big difference for you. And you will feel so much better! I'm not saying this would be a permanent thing - no one knows that. For many people, once levels get back up to normal, you can keep them there with a healthy DS diet. Playing catch-up is much harder. How many more months/years do you want to live in poor health? IMHO this has dragged on more than long enough. You gave it the old college try and then some. It's time to move forward with something more than just diet.

 

[DianaCox]

Pat, I would like to second the suggestion above to get your wife reading and posting on this website. Not only is there information here that is pertinent to her personally, I suspect you may be having trouble comprehending the advice you have been receiving, over and over again, perhaps as a result of your malnutrition affecting your thinking processes. PLEASE have her join or at least read this thread.