I am not sure if I should post this on the DS forum or the Revision forum. I apologize in advance for it being so long. I have rewritten it several times trying to make it shorter. This is the best I could do.
I am facing the very real possibility of having the surgery to lengthen my common channel. I don't hardly know anything about how it effects you. I tried to search for info on some support sites, but all I get are people talking about how long theirs is or how long should it be. My doctor is a long way off from where I live, and I have not been able to get there to get answers. He did say he would want me to be in the hospital a week before the surgery getting nutrition.
I had a revision from the RNY to the DS in Jan 2013. I am 5'3" and currently weigh 101 lbs. My labs are good-not great. I started losing too much weight about 10 months after the surgery. My doctor told me to eat constantly, all the time, and gave me Pancrease. The pancrease hurt my stomach, and I got down to 99 lbs. in 2014. Trying to eat all that food, I have almost constant very painful stomachaches, gas and bloating got very severe, and my bowel movements were very frequent and so urgent, most of the time I didn't make it to the bathroom. But I rarely had diarrhea. I got up to 115 lbs. for a little over a year, but then started coming back down to my current 101 lb. I seldom leave the house because of the urgent/frequent bowel movements.
I have lost all taste for food. I am never hungry. Food tastes funny, or like sawdust. I forget to eat. I changed my diet several times. Sometimes a food will not bother me, then later it will. I dread eating. This has all gotten so bad, I can't take it anymore.
If anyone has had this surgery, can you tell me-
If it will help with not wanting to eat and food tasting funny?
Will it help my appetite?
Will it help with the stomachaches, gas, bloating, and urgent/too frequent bowel movements?
How long are you in the hospital? How long is recovery?
Did it cure your malabsoprtion problem?
How do you get nutrition in the hospital? (I realize there may be more than one way).
Are there additional lifestyle changes you have to add to your life?
Thank you for your patience. I would be so grateful with any answers you can give me.
I am so sorry you are going through all this!
I have no personal experience with this so I can't help there. In your area, as you know, there are no DS surgeons. The closest I can think of to you are Dr. Boyce in TN and Dr. Ayoola in Denton, TX. Both also do RNY to DS revisions. I have no idea whether or not they would be willing to help you.
I will also send you a pm.
I'm so very sorry to hear you are going through this!
I think the most important thing for you to do is to make sure you have the best surgeon possible for this revision and that you trust him or her. Is the surgeon you refer to the one who did your original surgery? Do you trust him/her completely? If not, please get a second opinion asap.
I see you are in Kentucky. I did a quick search and found a list of bariatric surgeons:
I hope this helps you. Keep posting to this board, too!
So sorry you are having all these issues. I personally have not been where you are, but I do know that my surgeon, Dr. Hazem Elariny, did revise one patient. It was a man who had the DS (as an original surgery). If I remember correctly he simply could not stop losing weight and his labs were awful. This is probably 10-12 years ago but it might be worth a phone call to his office in Vienna, VA (either by you but maybe your surgeon would consult with other surgeons). Good luck - I hope you find some relief.
I didn't have the revision but I have had some similar experiences to yours. I'm a 6'1 male and weighed just under 300lbs (around 40 BMI) in 2014 before having the SADi DS. At about 10 months, I started losing too much weight and dropped down to 135 lbs (my goal was 185 lbs). There were various side effects from being too thin, then I gained about 10 lbs up to mid 140's. I was still too thin, had kidney stones, some UTI's, etc and dropped back down to 135 again.
My doctor and I discussed lengthening my common channel if I continued to lose weight, but it was already about 350 cm which is a SADi standard. The real mind blower here is the very short common channel can create malnutrition, but up to some point a longer one does not really prevent weight loss. In other words, you still lose the weight at 350 cm, which in your case may still be a problem.
I would have needed a much longer common channel or to eliminate (reverse) the bypass.
Since I highly prefer to avoid surgery, I started eating all day long in small amounts. This is where you can get into trouble - stay away from gas and bowel movement foods but try to add calories. For me, everyday includes a shake from Baskin Robbins, tons of protein from cold cuts, chilli, fish, peanuts, certain cheeses (not too soft), and some candy. I also eat a lot of fruits and drin**** tea with some sugar (but I add it). The gas comes from white flour foods (bread, cake, bagels) and too much fat. In your case, I would still have the fat but make them healthy (e.g. avocadoes).
I gained weight back over time, and although I'm still thin, the added weight has eliminated other side effects of being too thin.
Good luck and keep a positive attitude.
That sounds bad. I'm sorry you are going through that. I haven't done this but have seen several posts over the years so this is all second hand.
A couple questions. Do you know the current length of your CC? I understand there are several drugs like Pancrease did your Doc try anything else?
The people I've see that got their CC lengthened seemed to do very well with the absorption. I don't remember any of them having quite your symptoms but deficiencies and being underweight can cause a host of ancillary problems.
I think they may do TPN in the hospital to make sure you are getting the nutrition to be as healthy as possible for the surgery. It doesn't sound like there is anything they can do food wise to make up for that.
I would be hoping that once you don't have to force yourself to eat all the time some of these issues may resolve themselves.
I'm a little unsure that this may actually be your problem but I assume that once you are under the Docs care they will check that there aren't any kind of obstruction or other issues.
Good luck - get well. That's the important part.