Surgeon's Recommendations

My ds surgery was 10.10.07. After months of complications from the initial surgery, my weight was lost in a comfortable amount of time. I really had no problems all these years managing  my weight of 117-125. ?Suddenly, in July, I crashed. Weakness, nausea, weight loss, dehydration and 2 bouts of pancreatitis. The months followiing, i was in ER 8x in 4 months with on and off with severe bloating, nausea etc. Had every test known and nothing significant showed in all my CT scans, mri's, xrays, ultrasounds. met with my surgeon back in august to have him take a look at my labs and belly no suspicions of anything related to the ds surgery. i did have anemia but hemaglobin raised to normal levels with ferrous sulfate 3x day and eventually 2 iron infusions this past november. my last labs showed plenty of ferratin in my blood and normal hemaglobin. however, my symptoms of the weakness and bloating and fatigue never really got much better. i came on this site early december and was shocked to find that i had not been taking suffieicent amounts of protein and supplements these past 6 years. Upon recommendations of many of the members and vitalady, i increased my vitamin and protein regimine. my last labs were dec 14th.

today, i went with my new labs to the surgeon. vitamin d was a little low and so was protein. hemaglobin and ferratin levels were fine. the rest of my blood work was good. my dr. examined my bloated belly and asked questions about bowel problems. i have been constipated mostly since july/aug. when i first started getting sick. drs. then recommended (my family dr, and gastro dr.,) i take miralax daily and 2 stool softeners every night. i suspected the constipation was from the iron, vicodin for my neck and side effects of a couple of the medications i take for sleep and depression. so i continued on.  well, today, dr. felt it is time to get off all iron, miralax, stool softeners and take metamucil natural fiber only. take a bottle of citrate of magnesium and added flagyl for one month. he explained there could be a possible narrowing somewhere in my insides (i cannot give medical terminiology) and if my stools did not improve he may have to go in and 'open' up a space so the bile may more easily pass through. he said he has done this in some patients, but it is not all that common. he said if he got in there and it all looked good, he would like to do a revision of my common channel. of course, i said no way! i will try this his way for the next month and see if my stools look normal again in color and see if the constipation and bloating desists. that is what i am hoping for. he seemed to feel if i did have to have a revison *THE WORST CASE SCENARIO* i would only gain back 10-20 lbs AT THE MOST. and my malabsorbtion issue would largley improve.

so, today i am concerned. i will say since i upp'ed my protein and vitamins i am having more stamina but the persistant insomnia (non responsive to large quantities of medications) is kickiing my butt. so it is hard to tell why i am so fatigued. is it the sleep depravation or vitamin d deficiency or low protein level which was not that bad, the lab was 5.9. since these labs i have been getting at least 150 gr protein per day, so my protein level might be higher now? he said vitamin d deficiency (my lab was vitamin d, 25 oh was 22) on the low side and he gave me drops and increased my vitamin d regimine.

i guess my question is: has anyone ever heard of a similarity to the narrowing inside re: the bowel issues? does anyone suffer from constipation from the iron and or other medications that causes bloating? Does anyone have any advice or knowledge concerning my issues?

i do have a copy of my surgical report but i cannot read or understand how long my common channel is from this report.

thanks for listening.

Perhaps he's talking about scar tissue causing a partial obstruction to the side of your intestines transporting bile to your common channel. I'm curious to know what kind of D he increased your dose. If he prescribed D it's likely D2 in oil and it won't do you any good. What might help more is 100,000 or 2 capsules a day of Vitalady's dry D3. My other concern is when you were taking ferrous sulfate instead of Vitalady's Tender carbonyl iron or Proferrin heme iron. Ferrous sulfate is notorious for being hard on intestinal systems and very difficult to absorb. 

Please don't be offended but I think I would get a second opinion from another DS surgeon. Perhaps Dr Kemmeter in Michigan or Buckwald in MN. I've never heard good things about Dr L's nutritional follow up or surgical skills. 

--gina

 

no one in my family likes dr. L. i felt because of all the surgical complications i had. my husband felt he shot from the hip. i had staple failure, a hole in my stomach, immediate infection of the incision, had stent put in my stomach for 6 weeks, sepsis 2x went home on a wound vac and tpn for 6 weeks. that was a lot of complications that could have cost me my life. but for me, his bedside manner is so wonderful, he came to see me every day, kind, caring, went the extra mile etc. so from my perspective, i thought he was a lifesaver and his reputation at the hospital was stellar! i chose him because a friend of mine had her ds done by him, did all the research before her surgery and i went on her reccommendation. she had no issues. he is the kind of dr. when you are with him, he makes you feel so secure and safe. could i have had all these complications with another dr>? perhaps, God only knows. the only other dr. i have heard of in my area is dr. harez. have you heard of him?

the vitamin d he gave me is emulsified vitamin d (as cholecalciferol) 18,000 per day. it says ingredeients are: water and gum arabic emulsifier and sesame oil. so are you saying this is no good?

im so confused

oh, regarding the iron, i was just taking ferrous sulfate..what my hematologist recommended. i have yet to order vitalady's vites ... waiting to pay off some christmas debt. i am using up the vites that i have. as far as the iron, she read my labs. i just dont know who to listen to? the dr. re: taking iron or not. i think i will heed his advice for a month and not take the iron and see how it looks in one month. right now, my ferratin level is good and hemaglobin is good as well. the hematologist told me after the two infusions that there was nothing he could do for me. my hemaglobin was now in normal range. i do not have another dr. that oversees and understands the ds component. i am searching now for a internist who will take the time, do the research and care for me from a ds perspective.

Ferrous sulfate is the first go-to for hemas. However, they dont usually have much experience with DSers. Search "iron and ds" and you will learn more about our particular iron needs. I knew going into my hema appt not to bother with this form of iron, and fortunately, I had a good hema who listened and worked with me. Your iron may be simply causing you more harm than good!

Dr. L did my surgery as well, but I have been fortunate to have no complications.

I met a woman in his office who said she used to be tired all the time and one day, when she was out if town, she literally collapsed. Her protein was so low, that they had to give her a "bunch of bags of protein." My words, not hers. As I imagine it, I suppose they gave her ivs of protein. She had noted her protein was extremely low and very expensive. She had admitted to being very noncompliant with her protein, and advised me to take my protein requirements very seriously.

Another woman in the office ( same day) was going in for a revision. She was single and said she never ate. Hated eating. Thus, she was going to be getting the malabsorption portion of her surgery reversed.

You mention taking iron. A hematologist can perform a test to determine if you are absorbing it or not. You take your pills and they test your iron levels, before iron, an hour after, and 2-3 hours again. My hema simply told me not to waste my time with iron after my tests showed I did not absorb carbonyl or heme iron.

My guess is your bloating and constipation are probably related. Your iron, vicodin and other rx can definitely mess you up, regardless of whether you have had a DS or not. Getting off everything is a smart move. I have never heard any constipation issues with any antidepressants, but I could be wrong.

Have you considered physical therapy for your neck? I am in pt for my shoulder and it is doing wonders.

As far as sleep, I sleep worse now than I did before my DS. Someone mentioned to me, that maybe I dont need as much sleep anymore. That makes sense to me.

In short, it sounds like the path you are on is a good one. Eliminate all, or as much of your meds as you can. Keep in mind that even stool softeners can be habit forming (or so I've been told) and my pcp has told me metamucil can actually cause constipation in some people.

Give your body a chance to adapt to the changes you make before jumping into surgery. And keep us updated on how things are going for you.

Best wishes.

unfortunately, i cannot get off my nightime meds. or i will spin off in a manic phase and really be sick. i have to sleep. i am so exhausted. i definately am not taking any vicodin anymore and yes i have tried pt. and have had 3 cervical epidurals. i have a herniated disk, bulging disk, bone spurs and arthritis. i am going to stay off the iron for one month and see how my labs look. i will definately be using vitaladys recommendations...she has been wonderful! thank you for your advice. peace.

It sounds like you have some other health problems that make your case more complex.

I woke up in the middle of the night thinking of you. Calcium! How much calcium do you take? Many DSers have found they are constipated from calcium, and each person finds their own way around it that works for them. I dont have that problem, but what I hear most of is people taking magnesium citrate (and someone correct me if I am wrong!) to help with their constipation.

At some point (maybe a couple of weeks?) after you have eliminated the vicodin, the iron, and the stool softeners, eliminate the calcium from your diet for one week. No longer! And see what kind of impact that has on you.

I was very happy with Dr L as a surgeon. He has a very good reputation at the hospital, etc. However, he does not specialize in treating you and your nutritional needs long term. He was the one who told me about OH. His vitamin supplementation plan post DS was not nearly as comprehensive as Vitaladys. I follow Vitaladys and I do NOT get all my vits from her. Many of us have found alternative sources for some things. I strongly encourage you to search "ds and vitamins" on this board to get a great deal of information about prices, types, etc. While you are at it, search "ds and constipation" and see what others have done.

Dr L's option of a reversal is rightly considered an option. However, my opinion is that it is a last resort option, and I wouldnt even bother thinking about it just yet. You have a lot of things you can rule out before more surgery!

Also a Dr. L patient and went for check up today. Haven't had the issues you're having so no comment on that aspect. What time was your appointment, I was there 9:ish am...

It's sad that these surgeons as well as their hired nutritionists still know very little about how a DSer keeps healthy. My surgeon was no better.  My labs came back low and she wanted to try again in 3 months with no change recommendations.  We did that twice before I took matters into my own hands.  Years later, she's still recommending an exgtra 400iu of D for DS patients.  Flipping clueless!   For that reason, I am very grateful for the community we have here and the information we share.

I also support trying everything before succumbing yourself to another surgery.  Cutting is what Dr. L knows best.  I would consult an endocrinologist to see to your nutritional levels if you cannot do it yourself.