Still seeking anwsers for lengthing of cc.

[feeder]

It will be 3 years sense I have been to Mayo Clinic. As a lot of you know I am not the kind of person to rush into anything. Been trying to wrap my mind around a revision to lengthen my cc. for the past 2 years. The revision would be done by a very good cutter who does the DS. For many years now I have wrestled with what came first the chicken or the egg? And can we go back in time and be the same way before the revision? I think not, but maybe. After tracking my life and peeling back the onion peels I see several things that if could be controlled I would not have the revision. When I ask the 3 cutter doctors who do the DS if these problems will resolve after the revision they can not say for sure. I am a very high risk as I am full of adhesions, and mesh. Many abdominal surgeries. Been anemic sense I was in my teens and after my 3 child was told not to have anymore. In my early 20's was diagnosed with chronic fatigue and colitis. In my 30's was told I had Fibo. In my 40's told I had sleep disorder called narcolepsey. Never let these things define me or stop me from doing what I was called to do, just needed to do things different and slower.

After my DS the anemia was kicked into high gear. Hemo says any WLS can kick start things that may not rear their ugly heads until years from now. I have been IV dependent right out of the DS gate. Been told by her that if it was just anemia that the iron infusions would fix it. It makes me feel better after each one but never get my red count up out of low or my hbg is low. She tells me I have a blood disorder of unknown sorts and in time it will come to light until then we just manage it.

Chronic low blood sugar. Started after my DS. Water, exercise, heat, stress, and overgrowth all can play a role in this. I have this tested every 2 months and my alc is 3. sometimes its 3.1. Trust me I work on this as it leads to a very bad quality of life.

Overgrowth. I can not say enough about this. In the last 3 years my overgrowth seems to be leading me through some dark days. antibiotics, you bet ya. 500 x 4 a day 7 days a week. 3 weeks out of the month. Trial and error hear. Seems I do not absorb all the antibiotic. Try telling that to a GI who is not going to think out side of the box and even if he understands it is mandated by guide lines from FDA and insurance. The overgrowth keeps my vits. and nuts. from being absorb keeps my tummy feeling full all the time, feeds off the sugar that I do intake in fruit, and leaves my blood sugar low.

My hemo tells me its time to have another bone tap but that she would like to send me back to Mayo for it and have me checked out there. Why I asked? Insurance is stating how many iron infusions one can have in a year and until we can find out what is wrong with you Mayo can over ride this with a treatment plan I can follow here. Why can't you override it, I asked? Wanting me to get testing on other things as well and switched the conversation.

Saw my Pcp who has given me my antibiotics for the last 3 years as directed by Mayo treatment plan. Tells me he does not feel comfortable giving me the antibiotics but will send me to a GI. Seen the GI 3 weeks ago. He puts me on the antibiotics but wants me to go back to Mayo and get a updated treatment plan. Do we see a pattern here?

I know people with Lymme disease who take many antibiotics as it gives them quality of life back and manages symptoms when it flares. Can I get this overgrowth under control with long term antibiotics and will the doctors prescribe them in the dosage I need throughout my life?

Will I be able to reley on infusions every 2 months for life? Will a revision fix this not knowing if it is DS related in the first place.

Will my low blood sugar be under control with a revision or is this something else also?

Off to Mayo I go. Seeking answers. Any thoughts here. People who have had cc lengthen can you give me some insight.

 

[KathyF]

I have no insights, but a great big hug. Are they considering a kissing X revision? Seems like that would be the least traumatic option for increasing your absorption.

 

[Munchkin]

Feeder, you need to talk to @DianaCox about this and get some information of new treatments for overgrowth. She has posted some very interesting info that makes a lot of sense. Also for the long term anemia, I wonder if anyone is working on something implantable? That would make sense to me and seems doable.

 

[brooklyngirl]

Wow, I don't have anything valuable to respond, just wanted to throw you some support. Best of luck, I hope you get some answers!

 

[DianaCox]

I'm not sure what I can contribute, except perhaps to consider whether this might be a circumstance where a fecal transplant might help? It seems like something that could be considered a reasonable choice of non-surgical option.

 

[Munchkin]

I'm not sure what I can contribute, except perhaps to consider whether this might be a circumstance where a fecal transplant might help? It seems like something that could be considered a reasonable choice of non-surgical option.

Exactly!

 

[hilary1617]

Also, it might make sense to get a comprehensive study of all the microbes in your feces to see if there's one in particular running amok.

There's a crowd-sourced research project that will give participants that info for around $100. My DS surgeon knows some of the people at Fermi Labs(?) who are running the project and thought I should get the testing when I was having real problems a while back after after cancer surgery and I was testing negative for c-diff, but there was a possibility that something else was causing a challenge because I had been on antibiotics that could have wiped out the friendly organisms and let the bad ones thrive. I received a kit but never ended up sending it in because they identified my problem as bile salt diarrhea and found a medicine that worked for me. It is called the "American Gut Project"... http://americangut.org/

 

[Ladytaz]

I had my common channel lengthened from 100 cc to 200 cc. I had chronic bacterial overgrowth and if nothing else the fact that this has been cured 100% since the day of my revision makes it all worth it. My quality of life was getting worse and worse. I have heard that some people who have WLS are susceptible. My own feeling is that for whatever reason, either by mistake or by design, there was a blind loop left that kept the bacteria trapped. No amount of Flagyl would cure it, no amount of probiotics. No matter what I did it came back and I am sure it always would have come back had I not had a revision. It is a no brainer for me. Even if I had regained every pound I lost my quality of life would be far better then it was. I was where I accepted that certain things were over for me. I knew I could never remarry or live with a man because it was too humiliating to wake up in a pool of my own waste. I could never work outside my own due to the smell and the frequency of my bowel movements. There were many things I thought I could never do again because I thought that this was my new normal and there was nothing to be done about it.
I honestly don't know what is keeping you from doing it. I am sure you have your reasons and I appreciate your caution but when I found out I could possibly be relieved of CIBO I couldn't jump on the table fast enough. If you are afraid of regain all I can tell you that my experience has been positive because I was given restriction for the first time and because I gave up foods that I knew I couldn't eat in moderation, that I was addicted to. I am sure that that alone, giving up the white carbs, along with the revision, is what made the difference. If not having chronic intestinal bacterial overgrowth means never eating a slice of white bread or pasta again it is a small price to pay for me and definitely helps my resolve to avoid them.
Today I am normal sized, eat very well and work in an office with a shared bathroom that I am not at all worried about using. In fact, not too long ago I walked in and there were two co workers complaining about the smell someone apparently left and I was so grateful that I didn't have to worry about being found out. While my shit stinks as much as anyone else's it doesn't seem to stand out anymore.
Not everyone with WLS suffers from CIBO and I certainly didn't do anything to help as far as my diet went but even when I did eliminate the white carbs it didn't cure the problem so I know that wasn't the only reason I had it, but I am sure it contributed to it. I don't recall reading if you avoided white carbs or not but I am sure you have done everything you could to fix the issue short of a revision. It sounds like you have good surgeons on your side. Please, do not suffer more then you already have. It can get better. I have no regrets whatsoever about my revision except maybe I wish I had worked harder to save my sleeve but in the end I lucked out and I have no repercussions from having a pouch.
Good luck to you.

 

[feeder]

I had my common channel lengthened from 100 cc to 200 cc. I had chronic bacterial overgrowth and if nothing else the fact that this has been cured 100% since the day of my revision makes it all worth it. My quality of life was getting worse and worse. I have heard that some people who have WLS are susceptible. My own feeling is that for whatever reason, either by mistake or by design, there was a blind loop left that kept the bacteria trapped. No amount of Flagyl would cure it, no amount of probiotics. No matter what I did it came back and I am sure it always would have come back had I not had a revision. It is a no brainer for me. Even if I had regained every pound I lost my quality of life would be far better then it was. I was where I accepted that certain things were over for me. I knew I could never remarry or live with a man because it was too humiliating to wake up in a pool of my own waste. I could never work outside my own due to the smell and the frequency of my bowel movements. There were many things I thought I could never do again because I thought that this was my new normal and there was nothing to be done about it.
I honestly don't know what is keeping you from doing it. I am sure you have your reasons and I appreciate your caution but when I found out I could possibly be relieved of CIBO I couldn't jump on the table fast enough. If you are afraid of regain all I can tell you that my experience has been positive because I was given restriction for the first time and because I gave up foods that I knew I couldn't eat in moderation, that I was addicted to. I am sure that that alone, giving up the white carbs, along with the revision, is what made the difference. If not having chronic intestinal bacterial overgrowth means never eating a slice of white bread or pasta again it is a small price to pay for me and definitely helps my resolve to avoid them.
Today I am normal sized, eat very well and work in an office with a shared bathroom that I am not at all worried about using. In fact, not too long ago I walked in and there were two co workers complaining about the smell someone apparently left and I was so grateful that I didn't have to worry about being found out. While my shit stinks as much as anyone else's it doesn't seem to stand out anymore.
Not everyone with WLS suffers from CIBO and I certainly didn't do anything to help as far as my diet went but even when I did eliminate the white carbs it didn't cure the problem so I know that wasn't the only reason I had it, but I am sure it contributed to it. I don't recall reading if you avoided white carbs or not but I am sure you have done everything you could to fix the issue short of a revision. It sounds like you have good surgeons on your side. Please, do not suffer more then you already have. It can get better. I have no regrets whatsoever about my revision except maybe I wish I had worked harder to save my sleeve but in the end I lucked out and I have no repercussions from having a pouch.
Good luck to you.

 

[feeder]

Ladytaz, it seems me and you have total different side effects when it comes to SIBO. So sorry you went through this. You can be assured if I experienced the side effects you have described in your post with out a doubt a revision would have been done years ago. Waking up in your own waste, smelly bowel movements daily confined to ones home would make it a no brainer. It was not until 2 years after my DS I ended up at Mayo trying to figure out what was wrong with me. Not experiencing the regular side effects that go along with SIBO, they did a boat load of testing on me. Confirmed indeed I had it. Told to me that very few are the way I am but they are out there living with it. I had to learn the signs in how it did effect my body. Drop in blood sugar, eyes blurred, brain fog, weak in the legs and arms, fatigued. Start the antibiotics suffer through the die off and hope and pray for better days. Until the next time it hits again. During this time I am to up all my vits. and protein as the overgrowth keeps them from being absorbed. Was also told at the time the further out I get the more it can happen. It has played out this way for me.

Afraid of regain you ask. You got to be kidding. Do you really think I am not having a revision because I might gain a few. I do fear, but it is not the weight gain. How about the recovery on a weakened body. What will I end up with after? I am full of mesh, adhesions, scare tissue, rods screws. Two years ago I had a hernia repair with a TT. Still my body has not fully healed from it. I could go on and on, but regain plays little into this.

 

[Ladytaz]

Ladytaz, it seems me and you have total different side effects when it comes to SIBO. So sorry you went through this. You can be assured if I experienced the side effects you have described in your post with out a doubt a revision would have been done years ago. Waking up in your own waste, smelly bowel movements daily confined to ones home would make it a no brainer. It was not until 2 years after my DS I ended up at Mayo trying to figure out what was wrong with me. Not experiencing the regular side effects that go along with SIBO, they did a boat load of testing on me. Confirmed indeed I had it. Told to me that very few are the way I am but they are out there living with it. I had to learn the signs in how it did effect my body. Drop in blood sugar, eyes blurred, brain fog, weak in the legs and arms, fatigued. Start the antibiotics suffer through the die off and hope and pray for better days. Until the next time it hits again. During this time I am to up all my vits. and protein as the overgrowth keeps them from being absorbed. Was also told at the time the further out I get the more it can happen. It has played out this way for me.

Afraid of regain you ask. You got to be kidding. Do you really think I am not having a revision because I might gain a few. I do fear, but it is not the weight gain. How about the recovery on a weakened body. What will I end up with after? I am full of mesh, adhesions, scare tissue, rods screws. Two years ago I had a hernia repair with a TT. Still my body has not fully healed from it. I could go on and on, but regain plays little into this.

I didn't realize how many issues you had. Most of the people I have spoken with who resist revision do so because of fear of regain. I honestly couldn't have cared less at that point even though I had already gained a significant amount of weight. I learned there are worse things in the world then being heavy. I know that about a year after my first WLS I developed http://en.wikipedia.org/wiki/Bowel-associated_dermatosis–arthritis_syndrome
a very painful condition. I was advised then to have a reversal but I refused to consider it due to my fear of gaining weight again.
I have had at least 10 abdominal surgeries so I know about not wanting to have any more. I am susceptible to bowel obstruction as it is, more surgery would not be a good idea. I recently spent a few days in the hospital due to an obstruction. I was in terrible shape in 2010 when I had my revision and it took a long time to recover. It was actually a few years before I even got close to being healthy. It was a very slow process. The last year or so I have been healthier then I've been in years and I don't take it for granted any more. I'm able to work and exercise and play with my grandkids, things I was afraid I'd never be able to do again. I hope that you are able to regain your health as well.