I think I have come to the realization that I need a revision

DSRIGGS

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I am pretty much resolved (95% certain )to the fact that I am going to need my CC lengthened, because even with the Creon and Welchol I have too many loose stools. My weight is fine, my lab values were fined roughly 2 months ago so assuming okay now (I am due as I am supposed to have monthly but was just too busy lately) but without the CREON I would not be fine...of that I am confident. I am taking two 36K caps with each meal and 2-3 more a day, one at a time with snacks.. I have tried to back down and the loose stools get worse/more frequent (only diarrhea sometimes but almost always loose). It doesn't really seem to matter what I eat either. Less fat, more fat, less carbs, more carbs and all combinations. At this point I am tired of my ass hurting and I am pretty sure that if I don't get the CC lengthened that the loose stools will keep the fissure from healing (even with a surgery to fix) so I am pretty much resigned to the fact that I am going to need ass surgery as well as CC revision surgery.

This could get very complicated because we are in the infancy of a potential malpractice case against the partner of my DS surgeon as he is the guy who cut Cameron's vagus nerve and never thought he needed to tell us....Cameron's life has been hell the last 2 years because of the issues that caused. So although I think my surgeon shouldn't have done cookie cutter DS lenght (100 CC for everyone) I am confident that he is very strong technically with his craft and would be more than competent to revise my CC to 150CM. That being said, if the attorney does deem we should file suit against his partner he informed us that we would almost certainly name the surgical group of which the surgeon is a partner, the hospital and the maker of the DaVinci system (robotic surgical instrument used to perform Cameron's Nissen and repair, as well as my DS).
 
You may have to travel to get revised...but I would wait a few more months. Let Cameron heal first...and see if things settle down. And get yourself passed your 2nd year.
 
You may have to travel to get revised...but I would wait a few more months. Let Cameron heal first...and see if things settle down. And get yourself passed your 2nd year.
Yes, I am going to wait until the two year mark. It is just getting harder and harder because I am having a hard time sleeping lately as I have to get up and go during the night 1-5 times (bad night if more than 1-2 times) and my fissure & gut discomfort is getting hard to take. I guess I can probably get the "ass repair" a bit ahead of the revision, but I don't want to do it too far ahead and I am really doubtful my absorption is going to pick up much as I have been pretty steady for a while now.

but yes I am waiting until the 2 year mark (9/13/15 is the day) and if need be I will go to Dr K. I love California and Dr K but really don't want to put my wife through that. For me I would be medical for work so no big deal (other than I am considering/starting to look at relocating domestically and possibly internationally for the right opportunity - and naturally I am not doing that unless healthy and done with this stuff).

Regarding Cameron - he is doing much better both mentally and physically, other than we think he has another ventral hernia. He just got dilated last Monday as his wrap repair was too tight (had to have it stretched with each previous as well) and he had dysphagia. That is 100% better. He is learning to eat with the new plumbing (has to eat more like us or he will get dumping syndrome with the big drain) and is doing much better in that regard. Mentally, he is just a gazillion times better. He still battles some depression like millions of people but he is much, much, much better now that he is feeling better. He is very much ready to resume life and get back to work/school. He is very driven in that regard and we are trying to help him get his housed in order to make it possible.

Thanks for the post.
 
@Scott, how long have you been taking the Creon? It can take awhile for things to stabilize, meaning months on Creon. But if you do need a revision, at least you know who your resources are. If it does come to that, it's not the end of the world. Easy for me to say when I'm not the one considering it!

I'm so glad Cameron is doing so much better. Hopefully his mental state will continue to improve as his physical health settles down and he moves forward with a more normal life.
 
@Scott, how long have you been taking the Creon? It can take awhile for things to stabilize, meaning months on Creon. But if you do need a revision, at least you know who your resources are. If it does come to that, it's not the end of the world. Easy for me to say when I'm not the one considering it!

I'm so glad Cameron is doing so much better. Hopefully his mental state will continue to improve as his physical health settles down and he moves forward with a more normal life.
Well I can't remember the exact date that I started on the CREON but I am pretty sure it was October of last year, maybe every early November....so it is has been at least 7 months. As far as being worried if the CC extension has to happen, I am honestly not worried in the least bit. The surgery itself shouldn't be that big of a deal (the stomach part was by far the worst part of the initial recover for me) and I am pretty comfortable with the fact that I shouldn't balloon up as the extra cc length is simply a swap out for the absorption aid of the creon (sure it might not be 1 for 1 but it should be relatively equivalent if that makes sense). My hope is that the loose stools will be lessened and side effects of the CREON will go away so i can stop the welchol.

Thanks for the positive thoughts and our private conversations we have had regarding Cameron. You are a super lady.
 
1) Cameron is an adult, and I presume the law suit would be in HIS name. You would not be named in the law suit, so I'm not sure whether there would be any concerns - ethical or otherwise - about having your surgeon do the revision even while CAMERON is suing his partner and the practice.

2) I'd still rather have Dr. K do it.

3) I'd still wait as long as possible - and go ahead and get the fissure surgery done in the meantime - the diarrhea aggravates the fissure, but likely didn't CAUSE it.

4) The pain meds for the fissure surgery might firm things up a bit - and speaking of that, have you tried tincture of opium for the diarrhea yet? I've heard some people have had good results with that.

5) I'm very glad to hear Cameron is doing so much better - that must be quite a load off your mind - and maybe with less stress, your guts will do better?
 
1) Cameron is an adult, and I presume the law suit would be in HIS name. You would not be named in the law suit, so I'm not sure whether there would be any concerns - ethical or otherwise - about having your surgeon do the revision even while CAMERON is suing his partner and the practice.
yes the suit would be in his name(although we have spent a good $20- $30K out of our pocket for his issues the past several years) and btw, Dr Marshall performed trauma surgery on Cameron as he is also Director of Trauma for OSF St Francis in Peoria....I like Dr Marshall a lot, but he does do cookie cutter DS as far as CC.

2) I'd still rather have Dr. K do it.
I hear you and don't disagree, just don't want to make my wife spend another "vacation" for medical reasons and not getting a much needed rest (she has been through hell with Cameron and me the past 5 years and deserves a medal) so as long as I would get Dr Marshall to agree that he would add 50 CM then it would more than likely happen hear in the Peoria area so it is easier on everyone.

3) I'd still wait as long as possible - and go ahead and get the fissure surgery done in the meantime - the diarrhea aggravates the fissure, but likely didn't CAUSE it.
That makes sense

4) The pain meds for the fissure surgery might firm things up a bit - and speaking of that, have you tried tincture of opium for the diarrhea yet? I've heard some people have had good results with that.
I have not but will research it.

5) I'm very glad to hear Cameron is doing so much better - that must be quite a load off your mind - and maybe with less stress, your guts will do better?
My stress has dropped a ton in the last few weeks and the loose stools aren't any different
Thanks Diana
 
Would you be revising with a kissing x?

Also, FWIW my experience with CREON (and again, I was using it for different reasons, so YMMV) was that it was incredibly helpful for a long while, but then, the cost (burning, flatulence, loose stools) to reward (vitamin and protein absorption) ratio swayed in the opposite direction. I think this was because (1) my own body compensated to increase its own absorption capability and (b) stopping the CREON allowed for delayed transit time which also aided absorption (as the CREON had itself contributed to malabsorption by increasing looseness and frequency of waste).

May I suggest a few months off of CREON before revision in case your absorption capabilities have similarly increased (watching scale and labs like a hawk during that time)? I think body does change to increase absorption for many (e.g. increased villi length) at or around 18-24 months out, which is why it tends to be the end of the honeymoon period. Certainly CREON could be causing some of the diarrhea as well.
 
Would you be revising with a kissing x? I am not sure what a Kissing x is?

Also, FWIW my experience with CREON (and again, I was using it for different reasons, so YMMV) was that it was incredibly helpful for a long while, but then, the cost (burning, flatulence, loose stools) to reward (vitamin and protein absorption) ratio swayed in the opposite direction. I think this was because (1) my own body compensated to increase its own absorption capability and (b) stopping the CREON allowed for delayed transit time which also aided absorption (as the CREON had itself contributed to malabsorption by increasing looseness and frequency of waste).

May I suggest a few months off of CREON before revision in case your absorption capabilities have similarly increased (watching scale and labs like a hawk during that time)? I think body does change to increase absorption for many (e.g. increased villi length) at or around 18-24 months out, which is why it tends to be the end of the honeymoon period. Certainly CREON could be causing some of the diarrhea as well.
I have found the more CREON I take it can cause solid stools. In fact I have tried to back down a few times and it increased the loose stools.

I won't be making any final decision until I am at 24 months minimum.
 
http://cdn.intechopen.com/pdfs-wm/47344.pdf

There's a pic of a Kissing X revision in there.

image9.jpeg
 
Kissing X is intended as a reversal of the "switch" part of the DS, not so much as a revision for someone who wants to continue to malabsorb just not so much. I think a lengthening of the common channel is the way to go here.
 
Kissing X is intended as a reversal of the "switch" part of the DS, not so much as a revision for someone who wants to continue to malabsorb just not so much. I think a lengthening of the common channel is the way to go here.
Yeah Dr k said it is simple. You simply add 50% of the length of the current channel... So for me it would be 50cm additional.
 
So as soon as I say Cameron is doing fine we end up in the ER last night because he had a seizure yesterday evening that caused him to pass out. Everything was okay and we were referred to a Neurologist for tonic clonic seizures.

This is the first seizure since February when he was pulled off the plane at LAX and spent 4 days in ICU on a vent and feeding tube. He was put on keppra and it is out in a month so before this last seizure we were actually going to see a neurologist about whether he still needed to be on keppra....... So another 6 months with no drivers license and hopefully we find out what the trigger is.
 

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