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

[southernlady]

Scott, I am sorry you dropped again.

I will say this: I know of two people who had their common channels lengthen in the last 6 months. Both are gone. One died in surgery with one of the best vetted surgeons we have on the East Coast. We have no proof but speculation is she wasn't in good shape nutritionally going in. The second one was recent. They suspected she had edema of the intestines and went in to lengthen her common channel. She was 6 weeks out from that when she passed away. Now I have googled edema in the intestines and while I may be wrong (as Dr. Google often is) and it seems to be associated with intestinal disorders such as celiac disease. She MIGHT have had undiagnosed issues that should have precluded her from the DS in the very beginning.

What I am saying is think outside of your DS first. There might be other issues at play. But if you do, make sure you are as healthy as possible.

 

[robs477]

Can you put a link/name of what you got? I'm wondering if this would help me out too, once my fissure Frank gets repaired. I never want to deal with this again. AGONY

Yes, its called: HydraWand-Handheld-Bidet....and is actually only $120 from Amazon and was cheaper than I remembered. I am a design Engineer and I have to say, this thing is really SUPER high quality, cant say enough good stuff about it and here is the link:

http://www.amazon.com/HydraWand-Han...ref=sr_1_2?s=hi&ie=UTF8&qid=1437837805&sr=1-2

 

[robs477]

gotta be honest the bidet concept does not appeal to me at all. I don't want water flying everywhere and frankly toilet paper doesn't bother/irritate me. Maybe because my issues are inside and not protruding?

Hi Scott, maybe my ass is still large enough...Lol, But, when you're sitting on the toilet using this thing, your ass (mine) seals everything and prevents any water leakage, and, the water stream can be as powerful or as weak as you want because of the pressure sensitive trigger.

 

[DSRIGGS]

Scott, I am sorry you dropped again.

I will say this: I know of two people who had their common channels lengthen in the last 6 months. Both are gone. One died in surgery with one of the best vetted surgeons we have on the East Coast. We have no proof but speculation is she wasn't in good shape nutritionally going in. The second one was recent. They suspected she had edema of the intestines and went in to lengthen her common channel. She was 6 weeks out from that when she passed away. Now I have googled edema in the intestines and while I may be wrong (as Dr. Google often is) and it seems to be associated with intestinal disorders such as celiac disease. She MIGHT have had undiagnosed issues that should have precluded her from the DS in the very beginning.

What I am saying is think outside of your DS first. There might be other issues at play. But if you do, make sure you are as healthy as possible.

I had full labs the week before and nothing is abnormal. I see Dr Marshall on Thursday and will discuss other testing but outside of an abdominal CT I am not sure what else we would look at.

 

[southernlady]

I had full labs the week before and nothing is abnormal. I see Dr Marshall on Thursday and will discuss other testing but outside of an abdominal CT I am not sure what else we would look at.

I'm not sure either but I wanted you aware that sometimes thinking outside the box may be needed. Ask Dr. Marshall to do the same.

 

[DSRIGGS]

I'm not sure either but I wanted you aware that sometimes thinking outside the box may be needed. Ask Dr. Marshall to do the same.

I have been around the medical world pretty much full time as a patient or the Father of a patient since 2010 so thanks but I don't take anything any Dr says as gospel.

Btw Dr k and and I have had numerous conversations about possibilities and plan of action so between Dr k and Dr k's shall we will look at all possibilities.

 

[southernlady]

I have been around the medical world pretty much full time as a patient or the Father of a patient since 2010 so thanks but I don't take anything any Dr says as gospel.

Btw Dr k and and I have had numerous conversations about possibilities and plan of action so between Dr k and Dr k's shall we will look at all possibilities.

I understand but I worry.

What would they look at if the DS was not part of the equation?

 

[DSRIGGS]

I understand but I worry.

What would they look at if the DS was not part of the equation?

Thanks Hon for the concern.

Blockage is one concern and I do think I have an umbilical hernia..but don't think that is the issue....

 

[Will2014]

Hi Scott, maybe my ass is still large enough...Lol, But, when you're sitting on the toilet using this thing, your ass (mine) seals everything and prevents any water leakage, and, the water stream can be as powerful or as weak as you want because of the pressure sensitive trigger.

Rob, based on your recommendation, I have purchased the item in question from Amazon. My damn bathrooms are both sooo small that I think it would be a pain to try to permanent install an electric bidet seat. I anxiously await it's arrival! Now, I took the liberty of speaking to Diana regarding this, and she has assured me (grins) that your promotion of this product in this thread constitutes a verbal agreement on your part to fully warranty said item against any and all defects or "unlikeable qualities". Basically, my understanding is that you will need to pay me back for all monetary expenses incurred by me be they real, implied, or delusionally conceived. Furthermore, a standard penalty fee of up to 10x's the purchase price may be indicated for any pain and suffering I may have resulting from said use of this product. Now, while I realize as a layman I may have SLIGHTLY misinterpreted her legal advice, especially since I was all hopped up on cold medicine and porterhouse steaks at the time of our talk, I think it might be best and save time if you would kindly send me a check for $1000.00. I will also accept payment in the form of porterhouse steaks...of course! Thank you for your prompt remittance. - Will

 

[Will2014]

I have been around the medical world pretty much full time as a patient or the Father of a patient since 2010 so thanks but I don't take anything any Dr says as gospel.

Btw Dr k and and I have had numerous conversations about possibilities and plan of action so between Dr k and Dr k's shall we will look at all possibilities.

Scott, just wondering if it's possible that your surgical report is inaccurate regarding the lengths for your CC, and alimentary limb. Can they accurately measure them now...without going in? I'm assuming not, but was wondering if a MRI could see well enough to measure. As for the horrific cases cited by Liz regarding failed attempts to reverse or alter a DS, remember that this sample size is so small as to be statistically meaningless. In other words, while it is shocking to us to have known someone who had a certain outcome, the VAST weight of statistical data suggests DS complete reversals or common channel lengthening are safe and relatively simple surgical procedures. In fact some bariatric surgeons have described them as "easy" , though I recognize that ALL surgeries have innate risks associated with them. You have much to consider my friend, and I will pray for wisdom as you make your determinations. I know you have walked the medical road more than all of us combined between yourself and your son, but one thing bears repeating: Surgeons will ALWAYS want to cut, Alternative medicine guys will always want to do alternative medicine , etc. Be skeptical and remember with whom you are speaking at all times. I did read recently about a surgical approach that increases both the CC and alimentary channel lengths by cutting one spot, but I lost the damn thing now and have no idea where it was. I'll try to find it tonight. Remember, discouragement is NOT allowed! Pulling for you hombre.

 

[DSRIGGS]

Scott, just wondering if it's possible that your surgical report is inaccurate regarding the lengths for your CC, and alimentary limb. Can they accurately measure them now...without going in? I'm assuming not, but was wondering if a MRI could see well enough to measure. As for the horrific cases cited by Liz regarding failed attempts to reverse or alter a DS, remember that this sample size is so small as to be statistically meaningless. In other words, while it is shocking to us to have known someone who had a certain outcome, the VAST weight of statistical data suggests DS complete reversals or common channel lengthening are safe and relatively simple surgical procedures. In fact some bariatric surgeons have described them as "easy" , though I recognize that ALL surgeries have innate risks associated with them. You have much to consider my friend, and I will pray for wisdom as you make your determinations. I know you have walked the medical road more than all of us combined between yourself and your son, but one thing bears repeating: Surgeons will ALWAYS want to cut, Alternative medicine guys will always want to do alternative medicine , etc. Be skeptical and remember with whom you are speaking at all times. I did read recently about a surgical approach that increases both the CC and alimentary channel lengths by cutting one spot, but I lost the damn thing now and have no idea where it was. I'll try to find it tonight. Remember, discouragement is NOT allowed! Pulling for you hombre.

Hello Will -

I have no doubt about the lengths of the CC & AL. Dr Marshall is an excellent cutter and these are simple measurements for him.....and standard lengths that he uses when doing the DS. He does the "cookie cutter/one sized fits all" 100 CC & 150 CM AL.

Regarding measuring the small bowel it is done with MR enterography for Crohn's patients but I already discussed this with Dr K and he said it would not be accurate with our amended guts.

I am consulting with Dr K as well as Dr Marshall and neither of them are quick to cut. I have brought it up. They are searching for other non surgical answers first (and so am I). I brought up surgery so I know the impact to my schedule if we have to go that route so I can effectively plan for work (I am a manager for Caterpillar) but I am hoping to avoid if possible.

Thanks

 

[Will2014]

Hello Will -

I have no doubt about the lengths of the CC & AL. Dr Marshall is an excellent cutter and these are simple measurements for him.....and standard lengths that he uses when doing the DS. He does the "cookie cutter/one sized fits all" 100 CC & 150 CM AL.

Regarding measuring the small bowel it is done with MR enterography for Crohn's patients but I already discussed this with Dr K and he said it would not be accurate with our amended guts.

I am consulting with Dr K as well as Dr Marshall and neither of them are quick to cut. I have brought it up. They are searching for other non surgical answers first (and so am I). I brought up surgery so I know the impact to my schedule if we have to go that route so I can effectively plan for work (I am a manager for Caterpillar) but I am hoping to avoid if possible.

Thanks

I understand...but do think a remeasurement is in order just to confirm what is likely an accurate measurement. Shit happens...and it happens even to the best. My AL is 200 cm's...biggest one I've seen yet. I have no idea what that means...but I can only assume its a good thing. My 110cm CC is slightly larger than most here. Hey-I wanted to ask you how EXACTLY you take your Creon. Do you open the capsules and dump into food? Leave capsules whole? I'm just wondering why they have you on such high doses of it...when the problem seems to be a failure to get the Creon to time correctly with food to result in greater absorption. It just needs to coat the food to begin breaking it down, as you know. That's why some recommend opening the capsules, dumping it onto mashed potatoes or something and eating it down, and then eating normally the rest of your food. To me adding a 2nd, or 3rd capsule makes no sense at all, unless it's taken with a different meal at a different time. I realize one has to be careful not to have loose Creon pellets sitting around in their mouth for long periods...can be irritating. But if you swallow the pellets right down, might be helpful. Our problem is we can't eat fast enough to get the Creon to mix properly with our foods, and our limited potential for absorption in our short common channels. A complicated problem for sure! Oh well...was thinking about you today man. Hope this is a good eating day for you.

 

[DSRIGGS]

I understand...but do think a remeasurement is in order just to confirm what is likely an accurate measurement. Shit happens...and it happens even to the best. My AL is 200 cm's...biggest one I've seen yet. I have no idea what that means...but I can only assume its a good thing. My 110cm CC is slightly larger than most here. Hey-I wanted to ask you how EXACTLY you take your Creon. Do you open the capsules and dump into food? Leave capsules whole? I'm just wondering why they have you on such high doses of it...when the problem seems to be a failure to get the Creon to time correctly with food to result in greater absorption. It just needs to coat the food to begin breaking it down, as you know. That's why some recommend opening the capsules, dumping it onto mashed potatoes or something and eating it down, and then eating normally the rest of your food. To me adding a 2nd, or 3rd capsule makes no sense at all, unless it's taken with a different meal at a different time. I realize one has to be careful not to have loose Creon pellets sitting around in their mouth for long periods...can be irritating. But if you swallow the pellets right down, might be helpful. Our problem is we can't eat fast enough to get the Creon to mix properly with our foods, and our limited potential for absorption in our short common channels. A complicated problem for sure! Oh well...was thinking about you today man. Hope this is a good eating day for you.

No offense Will but i don't think you understand how CREON works. You should never open up a CREON capsule because for one, it isn't intended to be used that way and two it can cause severe irritation to the throat and mouth if they come in contact with the pellets. You simply need to take the CREON when you start your meal... That is how it was designed to be taken.

I take the amount of CREON that I take because I have severe malabsorbtion and require that amount of CREON to get the nutrition that my body needs.

Regardingy AL and CC length they are not in question as I know exactly what the length of each is... What is in question is the total small bowel length and the proprruon of the AL and CC to the total bowel length. Thanks

 

[Will2014]

No offense Will but i don't think you understand how CREON works. You should never open up a CREON capsule because for one, it isn't intended to be used that way and two it can cause severe irritation to the throat and mouth if they come in contact with the pellets. You simply need to take the CREON when you start your meal... That is how it was designed to be taken.

I take the amount of CREON that I take because I have severe malabsorbtion and require that amount of CREON to get the nutrition that my body needs.

Regardingy AL and CC length they are not in question as I know exactly what the length of each is... What is in question is the total small bowel length and the proprruon of the AL and CC to the total bowel length. Thanks

No offense taken Scott. I do actually know exactly what creon is and how it works. The literature provided to me in my prescription mentioned opening the capsules and mixing with food for patients having difficulty swallowing pills, such as small children or the elderly. Yes, the Creon will act upon the soft tissues in the mouth if left there, which is why I advised carefully swallowing each pellet. You have to think carefully about what the medication is and how EXACTLY it works. The Creon is simply digestive enzymes (Lipase, Pancreatase, and Amylase) for breaking down Fats, proteins, and carbs. The instructions you are following are not working, and simply upping the dose has not worked as well. Remember, WE are different than 99% of Creon recipients. Most have pancreatic insufficiency from Pancreatic cancer or other insult to the pancreas., but they have NORMAL absorption otherwise. We have a VERY short amount of time for the pills to dissolve their protective membrane...remember no digestive juices are breaking them down either until they hit the common channel. Then there's the problem with the food not being mixed with the medication. Think of a big bowl of meat you are trying to season. Would adding spice to the top of it properly do the job? Nope. It's all about surface area contact, and it occurs to me that a possible solution is to open the capsules and let them mix with the food in your stomach. They will then be acted upon the whole way down. Remember also that not only does the protective membrane have to be completely dissolved before the medication can start working, and not only does it have to be mixed properly with food, but it also needs TIME to break down the foods so that you can absorb them. Remember, I am not only worried about you here...I'm also worried about me and am sharing ideas which I'm hopeful might benefit us both. I am also on Creon for the exact same reasons you are. I've also been an RN for decades and have a decent pharmacology back ground. Believe me when I say that not only is EVERYTHING I just posted here accurate, but it may well be part of your solution. Here's what I propose you try: Take a mouthful of mashed potatoes, applesauce, whatever. Empty the contents of 1 Creon capsule into it and gobble it straight down-easy peasy. Follow this with a nice juicy steak or whatever protein you're eating. You have several minutes of stomach "churn time" before the pyloric sphincter will open allowing the contents to drop down into your duodenum. It is this time that I am hypothesizing is the critical time for you (me). If you can eat enough during this time, your absorption should rise significantly because all 3 areas I mentioned above will be covered. The food will mix with the Creon instantly (no capsule to dissolve), the Creon will have time to break the food down (remember-the Creon is designed to work on the food from the duodenum on down, which is exactly what pancreatic enzymes do.), and the oh so short time in the common channel for absorption can now be maximized. Run it by your doctors of course, but I think I'm on to something important for you here. Try to be open minded.

 

[Will2014]

Scott have you had a chance yet to read the literature that came with your Creon to confirm that what I told you above is accurate? If opening the capsules and mixing it with food is recommended for babies and the elderly, I'm sure it's perfectly safe for you and I as well. I realize it's ALWAYS tricky business when speaking to someone about a medical problem they are having. People are stressed because of their condition, and aren't very open to feedback about their decision making or receptive to new ideas being offered. I get that. But I really hope I've not offended you....certainly would never be my intention here or anywhere. But this site is devoted to sharing TRUTHS for the benefit of members here and all over. I'm simply trying to think outside the box with you to find a solution to this difficult problem. Wouldn't it be fantastic news if the solution for you was to simply find a more efficient way for the Creon to break down your food for absorption? If you could actually allow you to stop losing and actually start adding a few pounds? I would certainly think so!!