DS Revision - severe anemia

Hi there,

I was here a few years back when I had my DS in 2011 with Dr Stewart. He has since passed and I now live in GA. I'm experiencing severe anemia for the last 2 years. My numbers were staying at a 10.8-11 in 2012 which is where I was pre-surgery, but I've been as low as a 5.8 and hospitalized. I'm doing iv Venofer every 3 weeks and I hang out at a 9.7. My hematologist recommended considering revision of the malabsorption, I'm also scheduled to see a gastro to make sure it's not blood loss somewhere else. No symptoms of anything like that though. 

So, I need surgeon suggestions. I am in the Atlanta area and I don't see any DS surgeons near me. I can travel so I'm not limited and with it being a revision I want the best of the best. 

Thanks in advance.

There are many who do regular iron infusions once or three times a year and it's just a part of their life now.  I would be trying different types of iron, maybe patches instead of oral iron.  Also, have you addressed adding digestive enzyme like Creon to help you absorb more?  Surgery should only be considered as a last resort.

I agree with Val - revision should be the absolute last resort. If you want to consult with a reputable DS surgeon on the East coast, you could try emailing Dr. Greenbaum in NJ or Dr. Elariny in VA.

Larra

Who do I see for the Creon? Should I try another hematologist? This one took me off oral and I'm only doing Venofer injections, now she wants me to do InFed, but I'm not sure about that one because of the side effects. I handle Venofer well. My periods are the only thing we can figure to make my count so low. When I did weekly Venofer I got up to 10.9, but I'm not sure how safe that would be to keep doing weekly. I don't see a surgeon here, I have my family dr, a hematologist and a gastro. Both he and the hematologist said I shouldn't have done the DS, so I'm facing that at each appointment also. Not fun. I was on hemacyte and that seemed good, but it hurt my stomach after a while. I see Vitalady does tender iron. Should I get that and how much should I be doing? 

Thanks!

I think Dr Dennis Smith is still in GA near Atlanta. 

Vitalady's Tender iron is carbonyl iron and she was carrying Proferrin as well. I had really good luck with a combo of Vitalady's Tender iron tablets (not the capsules) and Proferrin (heme iron). I was taking 300mg of carbonyl in the afternoons and 2 Proferrin every evening at bedtime. You have to take the carbonyl slowly--build up to the full dose over a couple or 3 weeks time.

--gina 

Gina, Dr. Smith is now in Celebration, FL. He moved there 1 March 2015.

Your PCP could prescribe the Creon. You might use one of the surgeons recommended to find a hema that night have a better understanding of what works and what doesn't for malabsorption from the DS. It sounds like this one has just arbitrarily decided you don't absorb orally at all - hence their taking you off oral meds.  I think Gina's suggestion about proferrin and the carbonyl is a great idea - at least to see if it means a longer period between needing new injections.

I would definitely rule out internal bleeding before considering a revision.  I'm surprised that wasn't done already.  Can you also work with a hormone specialist/ob doctor to see if you can lighten up or eliminate your periods?  Good luck.  I have anemia issues and I'm hoping that now I'm on a daily regimen of progesterone and estrogen that it will help.  I'm 47 so I'm in early menopause anyway.  Not sure if that would be appropriate for you since I'm not sure how old you are.  Maybe birth control pills?  Just something to consider.  Good luck and keep us posted on what is working or not working for you.  It will help others in the same boat.  

Cathy

I'm 34 and actually we want to conceive so it's important to me to get this under control. That said I do have very heavy periods, in fact my previous hematologist (different state) said she knew when I'd had a period because my numbers dropped by nearly a full point. I have a small fibroid and am under the care of an ob as well. Once we do conceive and birth I do plan to either do an ablation or partial hysterectomy, leaving the ovaries in tact. 

I would assume I would have some symptoms after 2 years of an internal bleed? I have none. I've gone off gluten and that's eliminated the stomach pains I was having. My only issue is the anemia. I even feel fine, energy, no bruising, etc. I'm going to look into a surgeon to see and a new hematologist. This one is also pushing injectafer and iron dextran which I've told her repeatedly I don't want. 

Thanks!

Heavy periods alone are sufficient to cause anemia even in women who absorb iron normally. I think the blame your doctors have placed on the DS is misplaced and based on their lack of familiarity/understanding of a complex operation. You are probably their only DS patient. Again, revision is your last resort. Dr. smith, who was suggested by someone, has moved to Florida - he still might be closest to you, depending on where you are, and he has an excellent reputation as a DS surgeon.

Any doctor could prescribe Creon for you. Whether or not it helps with iron absorption I don't know. Creon contains digestive enzymes that help with food absorption (i.e. things like protein and fat and such) but I'm not so sure about iron.

Larra