CONSIDERING DS? A RARE DS COMPLICATION TO CONSIDER ?

I have had a very, very rare and life threatening problem that started just over a year after my DS surgery (having lost all of my excess weight during that year). Since Jan (the last 6 mo.), I have had 5 hospitalizations and 3 surgeries for small bowel intusseption. The first two (laproscopic) repair surgeries by bariatric surgeons (AZ & CA) did not work. This last one on July 29 by a general surgeon (WA) involved emergency open surgery and removal of 8" of the upper portion of my common channel, which was ischemic and too damaged from intusseptions to repair. I now have only 75 mm of common channel, making it difficult to stop losing weight. I begin taking the digestive, Creon today. However the worst part is the pain since this last surgery, which has been the most difficult part. My intestines do not work. Eating causes excrutiating pain. Librax has helped a lot, but not all of the pain. 

Prior to this problem, i would have recommended DS to everyone. I had a few of the ordinary ds problems, but this group has been great and helped me through. I felt better after the ds surgery than i had felt in 30+ years; I was thin and energeti****il this. Even if the DS surgery did not cause the intusseptions , it has greatly complicated treatment. Two bariatric surgeons and the general surgeon are recommending revision to a RNY, which has a few reports of its own problems with intusseption in the jeugenium(sp?). I also was told that if i do have blockage in bile ducts, which may be part of the problem (no gallbladder) the surgery to fix them will be horrendous because of the bypass. 

These are long term things to consider. I am a rare case; i know that. However, the multiple things that can be complicated by the DS surgery, might be something for some people to consider, especially if they have a long history of irritable bowel syndrome or bile duct problems (which did not bother me for that full year following ds surgery).

I sure hope you are all fixed up now.  I have been around DS World for about 15 years and you are the first case like this I have ever seen.  I wouldn't worry too much about the 75cm CC.  That's what I have and I never even made it to goal.  I wouldn't jump into any kind of a revision too quick.  They would have to be explaining to me how a pouch could possibly serve me better than a stomach.  Especially since your issues are with the intestine...not the stomach.

I'm so very sorry you have had such terrible problems! Like Patty, I have never heard of this particular problem from the DS before either, and that's with about 10 years here and on other DS related sites. I also agree with her than going from a nice DS sleeve to a RNY pouch doesn't make sense, since the problem seems to be with your intestines and not with your sleeve.

Anyone considering any form of bariatric surgery should understand that there are risks. It's all major surgery, even lap band (which, even when removed, can leave behind lasting problems). We have the surgery because the risks of surgery are less, for us, than the risks of not having surgery, and of course also for the improvement in quality of life. Unfortunately some people will have complications. I wi**** were otherwise.

I hope time will help with the lasting problems and that the Creon will help you maintain your weight.

Larra

Like Patty said, I'd be expecting a big arguement over trading a stomach for a pouch.  They can make changes in the rest as they see fit...probably the same way they would with RNY anyway.

I do hope you get a good solution soon - better yet, hoping that creon does the trick.

I've been reading in the bariatric community for about 11 years now, and you are the very FIRST DSer I've head of having this particular problem. I have, however, heard of a number of RNYers with it. I suspect that the surgeons wanting to revise you to an RNY don't understand the DS. I'd definitely get a second opinion, preferably from a well-known DS revision surgeon like either Dr. Rabkin or Dr. Ara Keshishian, both in CA.

Do you have contact info for those docs. I'm definitely in the market for an expert.

Dr John Rabkin - 415.668.3200  www.paclap.com

Dr Ara Keshishian - 818.812.7222 www.dssurgery.com

Thanks!

I also am having a rare problem. I have been told I have BLIND LOOP SYNDROME . I have been hospitalized 4 times with sepsis(Bacterial infections of the blood) stemming from this. I also am on TPN for nutritients(I absorb calories well) And IV nutrition is a nightly thing. I have BADAS from the blind loop and am currently dealing with severe incapacitating arthritis of the joints and ligaments. I was finally taken seriously when the RASH started, For over a year I have been hurting and getting blood infections but when I had a horrible rash all over, the docs had to look at me. I am searching for anyone who also has these problems, but there seems to be few of us or the docs are all poo pooing them and telling them they all have LUPUS(What they told me 1st)...Geeze I don't think I have ever seen so many of one type of patient be told it was probable lupus and never get a diagnosis. I am a revision, and 12yrs post op. Anyone have a similar experience?

I pray they find a good treatment plan for you and are able to correct the problem.  I have no insight for you.  It is very frustrating.  I am 6 years post DS.  I am having chronic issues, but not as severe as yours.  It is frustrating when they cannot make a decision and really don't know what is going on.  I have had debilitating abdominal pain since my surgery.  Frequent ER visits first few years.  I learned to manage pain and suffer through at home by year 3.  Recently have been severe again.  For once, the imaging showed a internal hernia and such.  Had surgery and told that I was fixed.  Would never have that pain again.  Two weeks later back in ER :(

I think the problem now is getting the rest of the medical community to catch up on what our insights look like and how they work to better IDENTIFY the true problem to treat.  Good luck.