jbird1972

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My nausea has continued since my last surgery, it did improve, and I feel like the last surgery did clear up some adhesions that were causing intermittent small bowel obstructions.  I still have the same symptoms (nausea/pain/vomiting), but my pain is in a completely different place, which I took as a positive, maybe a signal that we are getting to the root of the problem.  My surgeon at U of C referred me to the GI doctor at U of C.  I met with her on Friday for the first time, she is very nice and very knowledgeable.  They are thinking that I may have a Sphincter of Oddi dysfunction (which by the way, is weird enough to have been on that show Mystery Diagnosis), it has to do with the bile duct/sphincter being too tight, and allowing fluid to back up, which causes the symptoms I am having, but the symptoms could also be from some other things, so they took some labs to rule some other things out, and I am going tomorrow for a special MRI called an MRCP, it will allow her to get a good view of my anatomy as it stands now, including a view of the bile/pancreatic ducts and the pancreatic duct function as they will inject me with a medicine that will cause the pancreas to excrete Secretin so she can see where the pancreatic duct is, and also verify that I do not have any malignancies (God forbid) and make sure that I have not had a form of Pancreatitis all this time, not likely, but possible.  If all of these tests are still leading in the direction of the Sphincter of Oddi dysfunction, then they will schedule me for a therapeutic ERCP, it is done under endoscopy, and they use the endoscopy tools to reach the bile duct, and they use a cutting tool to splay open the Sphincter of Oddi to relieve the pressure and open the duct so it can function properly...there is a 30% chance of successfully solving my problem, and because I am a woman and I fall into a certain age group, there is also a significant risk of my developing Pancreatitis right after the procedure.  She has already told me that because of this, she will reserve a room for me for observation overnight, but I will only have to stay if I wake up in any pain at all after the procedure.  She advised me of all of the risks vs benefits, and even though a 30% chance of fixing me is not much of a chance, I have to do it because I can't keep on like this,  I need to improve my quality of life, and life for my family.  It has helped me to write these blogs, and to read the posts of others that are struggling, just a reminder that we are not alone.

I just want to start off by saying that a reversal is the LAST thing I wanted, and through all of this it is the only regret that I have, I don't regret doing it to make myself well, I just regret having to do it because then you fall into a place where you sometimes feel like you don't belong to either group...not that we always need to belong, but anyone who has been through this can understand.  Since my reversal 11/3/08 at University of Chicago (under the care of a wonderful doctor, Dr. Alverdy...both of my surgeons have been great, really), I was still suffering with these intermittent small bowel obstructions, and I do mean suffering because they were coming out of nowhere, at any time, and I work in the ER and it happened to me at work a few times and it's hard to just say, oh I need to go pace for a while and throw up, but I have the best co-workers around so they made it possible somehow.  I struggled to get through the holidays, in the ER over Thanksgiving, made it through the family visits over Christmas, and ended up back in the ER 12/28/08.  The elusive small bowel obstruction showed itself on film, which is a feat in itself as anyone with this problem knows they are usually camera shy for us.  I didn't have any bowel sounds at all, and that is a bad thing.  They helped me out with nausea/pain, and I thought I would be seeing my original surgeon the next morning, but who knew he was on vacation

Once I realized that he would not be able to care for me, I asked my husband to send my surgeon at U of C an email, and I called his office myself from my hospital room.  While I was waiting for his call back, I did see the covering surgeon, both of them, and they were convinced that it was just my gallbladder (they had rustled up an old ultrasound that was done in Feb 2008, which did show stones), and that even though I had no bowel sounds, there was nothing wrong with my intestine, and one of them even called me before I was transferred to U of C by ambulance to tell me not to let the other surgeon touch my small intestine.  I know I am making this a long story, but if you are going through something medical, you do need to listen to the experts, but you have to listen to your own body, your own intuition to tell you which experts you need to listen to.  I think there was someone else on here that said it best, to remember that they say that people "practice" medicine, it is always evolving and no one knows everything all the time.  On 01/02/09 I had my gallbladder removed (laparoscopically), and adhesions removed that were interfering with a piece of small bowel.  If I had stayed at the other hospital, I would have left with the same problems I started with, and another surgery.  I have only been home a few days, and I have the usual post-op pain/nausea, but we are watching the nausea...I think the next game plan, if it continues, involves investigating if I have Sphincter of Oddi Dysfunction, let's hope we can just get past this and be done.
I never took it lightly to have my surgery reversed, quite the opposite.  Anytime we have surgery, just the effects of anesthesia wreak havoc on your system, the depression, fatigue, nausea, hair loss, the list goes on.  Take care, and I hope all of you that are struggling find a resolution in this new year!

I just want to start off by saying that I don't have any regrets about having the surgery, I feel that the problems that I have had have been more the exception than the rule, but having said that, it hasn't made it stink any less that my family and I have had to endure this over the last year or so.

I had my surgery 10/30/07, stayed one overnight, home the next day.  I battled some weakness early on, but attributed that to surgery and my body adjusting to the decreased intake, which I am sure it was.  I was feeling fine and getting stronger, losing weight like crazy, working out and loving it for the first time in my life, and then in Feb 2008 I started having problems eating...I would eat a normal amount (no overeating, I am very compliant), and then feel as if it were piling up throughout the day, and by the time dinner rolled around either I couldn't eat, or I would eat and just be miserable for the rest of the night (nausea/vomiting- if you can call it that, nothing would come up except saliva, still that way now) and even feel the next morning as if the food were still there.  I talked to my surgeon, and even though he thought it was very unlikely that I would have stenosis that far out from surgery, he wanted to do an EGD (scope) to see if there was narrowing there, and there was...that kept happening off and on, I have lost track of how many scopes I have had, maybe 8-10 in 2008.  I was ok for a while and then it all started again, so in June 2008 I had an exploratory laparoscopy where they diagnosed an internal hernia, lysed (removed) some scar tissue and adhesions, and figured the problems were solved.  I was again ok for a while, then started having the constant nausea/vomiting again, had another EGD, and they found a Bezoar, basically the food I was eating could not get past the anastomatic ulcer I had been battling, and it was caught in the pouch and the body's response was to calcify it into a stone of sorts and it was rolling around in the pouch, which is why sometimes I could eat fine, and other times not so much. They broke it up with the scope and pulled it out, said the ulcer I had was pretty much healed, and they dilated me some more while they were in there.  I was fine again for a bit, and then it started again...so, I had another surgery in August 2008, another exploratory lap, they found a piece of my old stomach hidden behind some blood vessels that was still attached to my pouch, and food was trickling down into it and getting trapped, so they removed that part of the old stomach, problem solved...unfortunately in the process of healing from that surgery (because my pouch had been revised), I was only able to eat about 500 calories a day and I was losing about 5 pounds a week and felt very weak/tired/dizzy, I was off work for a couple months, ended up with a central line (couldn't get a PICC line, after 4 hours of trying I was too dehydrated) and IV nutrition at home for 12 days (this was in September 2008)  I came off of the central line, my nutrition still wasn't any better, but the line had to come out and they were confident that I would be able to eat more, well...I couldn't, so we really started to worry about the overall lasting effect this was having on my health/my body, I work  in healthcare so I think part of my problem is that I know too much.  I was still ending up in the ER for weakness/hypoglycemia/dehydration, and no one seemed to have an answer for me, except to wait and see.  We couldn't do that anymore, I have two kids and my 7 year old was sure I was going to die, I think seeing that central line sent him over the edge. I decided to consult with my husband's surgeon, Dr. Alverdy at Univ of Chicago.  On 11/3/08 he did an exploratory lap with possible reversal of my RNY, and I was praying that he didn't have to reverse it, but at peace with it if that was going to make things better.  He told me that he would look for any obvious problems that he could fix, but if not then he would just do the reversal, confident that no matter what I would feel better and not have nausea anymore.  We talked about the possibility of weight gain, and at this point I needed to gain a few pounds back and he felt that I would not gain all my weight back.  No obvious problems were found, so he did the reversal, and I spent 11 days in the hospital due to some other complications.  I felt like that solved my overall eating issues, still not able to eat very much, but I have chalked this up to healing from surgery, he made the connection between my pouch and old stomach very narrow so that I would still have restriction when I eat.  Right before that last surgery, I ended up in the ER with a possible small bowel obstruction, and I am still struggling with that even now.  I have had 3 episodes of it since Thanksgiving, including a trip to the ER on Thanksgiving.  It is a very scary experience, lots of pain/nausea/and my version of vomiting, mostly worried that if it doesn't resolve itself I will end up in surgery again and probably lose my job in the ER because I am out of FMLA, and I love my job, I love my co-workers, I just love being able to help others.  I love my support group, but I don't talk about my problems there because they won't understand and I think it will scare people, and that is the last thing I want to happen.  I am a big advocate of this surgery, of course it has to be done for the right reasons, but I am so mad that I can't even be a good example of it, I wanted to do this for myself and my family and be an inspiration to others.  Now, I just want to be well, to be able to make plans and not worry if I am going to have some sort of episode that will ruin everyone's night/plans.