I heard from Dr. Kroh's nurse today and I am scheduled for July 6th to have my abdominal/GI surgery (remove rest of stomach, re-route some intestine, and place a j-tube that will hopefully come out 6 weeks after surgery if I can eat enough). This surgery has to come before the replacement of the spinal cord stimulator. I'm really nervous, but I trust the team I am working with, and this is my only chance at a more normal life, and I have to take it. I'm just trying to take it one step at a time. If anyone out there has read my blog and then had this revision that I'm about to have, please provide feedback as to how it improved your quality of life, abdominal pain, nausea, etc...Thanks!

 Hey Jules,

I am not on the boards very often but read your update.
I did have my remaining somach(remnant) removed, plus some extra intestines removed/re-routed in an attempt to stop my pain when I ate. I do not have any type of spinal cord stimulator- they had me on the fentynl patch for years. I finally told them that, although it kept me at a "lower level of pain" I felt I couldn't function- I did not feel safe driving my kids anywhere- and always felt "out of it". I still go through periods where eating and certain movements just cause too much pain and have to watch what I intake extremely carefully. I have since developed two ulcers that have not healed, so the nausea daily. I went to Cleveland and they told me that they could go in and try to re-route me again, but there is so many adhesions, scar tissue and  they don't know really how I am routed that it would be open and major recovery with no guarantee that it would get rid of my pain. Plus, I was told that I would be in the hospital for at least 3 weeks and that they wanted me to stay in the Cleveland area for another 3-4weeks after that.
I am working with a pain specialist now and doing my best to "not" have to go the surgical route.
I know that if it is needed, I will go back to Cleveland, but, am trying to just live with what I have.
I do have pain, partially managed, but, for me, it is what it is. I currently dont have the strength or desire to search and hunt for anwers anymore- Too much money spent and time used with Doctors discouraging me from trying to solve the problem. I appreciate that they were open with the fact that trying to fix my messed up anatomy could further endanger my life. 
I am glad that you have a course of action and are confident in your plan. After 10 years of complications, I just decided, I am done trying to improve and am going to live with what I have for awhile. I sincerely hope that this helps with your problems and can aid in your having some periods of enjoying life without pain.

Wigglypoo

 Thank you so much for responding. I feel bad that you are still in such a bad place physically, but it sounds like you have made peace with it. Unless another miracle cure is invented, they have told me in Cleveland that this is the only option. They are cautiously optimistic, and I do appreciate their honesty and support. I told my surgeon in Cleveland about this website, and that I'm so glad that there is a place for us to share, vent, and even look for solutions by reading about eachother. Thank you again, it means a lot to me. I'll keep you posted

 Hey jbird, I definitely commend you for writing throughout your struggles. Since my Roux En Y back in November, I had my gallbladder taken out in hopes that it was the reason I was so nauseas... it was not. So then I had a g-tube placed, sadly though the G-tube misfired and wasn't working. Then I had been put on TPN. I couldn't live off the TPN for the rest of my life, so after fear of my life, I was then reversed. In a matter of 5 months, my body has been through hell and back. My roux limb was taken out and it has been a little over two weeks since my last surgery and I wish I had good news. I ended up with a very disgusting infection in my open incision and I have nerve damage in my stomach and makes pain very severe. I too for the past few months have been on fentynl patches that took a very tiny edge off but did not help. With the infection, I have had extreme sickness (nausea, vomitting.) I was reassured that I will eat normally one day, granted I did not have my stomach taken out, rather reconnected, I am afraid of food. I also can't have normal bowel movements. I was hoping that the reversal was my new beginning, but now I am thinking that it isn't the end. My body has rejected a lot and out of everything, the reversal and infection have been the scariest, hardest thing I have been through yet. Jbird my prayers are with you and only wish nothing but the best for you. 

Oh man, Allie...I was really hoping that things had turned around for you.  I know you had a very rough start and I was praying it was just that, a rough start.  Did anyone ever narrow down why you became so ill, or did they just start slicing, dicing, and testing you to rule stuff in or out? I really hate this for you, I hate this for anyone.  I think I would feel some comfort if after all this you were fixed, but you're not! I wish I knew the answer...did you ever get a 2nd opinion or did your original surgeon do all of this? I would still get another set of eyes on this, even if it's the 3rd set, you need the right doctor to help you, one that sees these problems everyday.  I'm trying to remember where you live, but I would find the largest tertiary (teaching/research/university hospital) hospital that you can get to...it's great if it's close, but in my opinion the 450 miles I travel one way to get to Cleveland has been worth every mile.  There are some bariatric surgeons that won't want to help you because they did not do your surgery...what a culture, right? I would be happy to give you the name of my surgeon at Cleveland Clinic, and/or help you find someplace where your problems aren't so rare & bizarre.  Here is my email address (I check that more frequently than I am on here, julesmagnini@gmail.com)
Don't give up, you're strong, and they won't break you! prayers and hugs to you!