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Thanks !
Connie B / Irving TX 
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Yes, he said he may have to "rebuild" everything and even take out part of my intestines to do it. Time will tell. Since the food was just going into my intestines, parts of them are stretched because they were holding undigested food. Considering I was a "vegan" for years and ate mainly raw....that means a lot of raw veggies have been stretching out my intestines. Fortunately they are all FIBER so they pass through. Now when he redoes everything I can't be Raw vegan or even vegan anymore. He said I have to eat what he says to eat if I want success and I'm willing to do it. I can't take the "moral" high ground here. LOL I can figure out other ways to save animals. I need my "health" above all. He's been retraining my digestive tract the past month with special diets and including LOTS of protein. I've had to slowly reintroduce meat, which would make me gain weight but he isn't allowing me hardly any carbs or fat. He's had me on a diet of 70+ grams of protein, 30 grams or less carbs and 10 grams or less fat. (daily) It figures out to about 600 calories a day, but I've been doing it. I'm down almost 10 pounds just from the diet change and to me that is amazing because I have been on WW (weigh****chers) for years and unable to lose. But I was happy with maintaining, because I was NOT going back up...no way no how. It's just going to be nice now to "eat and get full" because I haven't felt that in about 10 -12 years.
Wow I missed that about your stoma being actually gone but it makes absolute sense given what you're dealing with. Will he attempt to make some type of new one when he's in there taking care of everything else?
and FWIW, I believe you. That you didn't push any food boundaries or cause your own issues. It's really great that you didn't put all of the weight back on and I bet you'll have an easier time and lose more weight than much of the revision patients we see here.
The majority of the time we see enlarged/stretched stomas in here it's due to operator error. Pushing the limits of the rules, or flat out ignoring the instructions for pouch care, etc. You happen to be the exception it sounds like, but that may be why some of the posters brought up examples of stoma stretching behaviors.
Good luck for a successful surgery.
He's basically said I don't even have a stoma anymore. He said it's very common for the stoma to stretch but mine is gone. It's all just one long tube. It was not from my poor choices though. I have always adhered to the "rules" which is why after 19 years I have not gained all the weight back. He said I am the "exception" not the rule. He's very impressed at how I have kept the weight off and my determination. That is why he's willing to do this surgery on me. He said that someone who had just "eaten" because they could would have gained the weight then some. I've stayed on a diet, exercised and remained healthy. No I didn't stay down to the lowest, but I didn't get back up over 300 or anywhere near it.
He changed my surgery date from the 6th to the 5th. I'm getting super excited. I can't wait to be out of "this" pain. I know I have a long recovery ahead, as he said it will probably have to be done "open" but I'm ready. I'm not going to waste this gift.
He's going to fix several issues. 1. My first surgeon left a piece of intestine in there just flopping around. It's called a "candy cane". It gets food, water, etc FIRST. When I swallow, things tend to go in there then it gets inflamed and causes me pain. I drink a lot of water, so I do keep it flushed out for the most part, but when it gets inflamed...WATCH OUT it hurts. So he's going to remove it. 2. My "pouch" has elongated, and joined my intestines. So when I eat, NOTHING stays in there and it goes directly into my intestines. He's going to reconstruct my pouch, and make my stoma smaller. 3. Because food has been going directly into my intestines, parts of them are "stretched". He's going to check and see if they will be able to repair themselves over time or if he needs to remove sections and then connect them back together. That is to be determined at the time of surgery.
Thanks for this detailed answer. It helps us to see exactly what's going on.
It sounds like he's basically going to tidy up in there (get rid of your candy cane), improve your pouch and take care of your stretched stoma. That's a lot of work!
Hopefully it will take care of your current issues. I just want to caution that stomas stretch in large part due to non-optimum choices we make. And that if your pouch has actually joined your intestines - which sounds like complete misery to me - you've got two very important areas to keep an eye on once your surgeons has made the necessary corrections.
It might not hurt to be almost anal about sticking to your docs post op diet progression. You'll want to give yourself every chance to lose the gain, and your priority has got to be that post op food plan until you are given the all clear for regular foods.
I sure hope all of this work ends up being super-beneficial to you. Weight loss after revisions seems to go slower and top out at smaller amounts lost. Honestly though I think many times it depends on the patient and their determination or lack thereof. I'm betting you will do great. =)
Please keep us posted if you're up to it. Take care of yourself.
Thank you, will check it out.I have about 80 pounds to lose.Though struggling with reflux and ulcers.
I think it depends on how much you have to lose but generally the weight loss with revisions isn't that spectacular and it comes off much slower. I had a revision due to reflux and not for weight loss and only lost 5 lbs but I was 10 lbs from goal weight. Therefore I didn't expect to lose much. There's a video on YouTube by Matthew Weiner where he talks about revisions, you should check it out.
Hi AnimalLover:
All my surgeon said about it was the original surgeon "left this behind". His words "He left this behind, it's called a candy cane." Mine is about 6 inches long. I don't know if that could "develop" or not. I haven't heard of a "candy cane" until the day he told me I had one. I don't know if that helped or not. Hope it did.
I don't know what to tell you about what you can expect in terms of weight loss but I wanted to tell you i had surgery almost 3 months ago to correct candy cane syndrome. I was in pain virtually all the time. I do have a question for you. Did your surgeon tell you the reason you have candy cane is DEFINITELY due to a mistake your original surgeon made? If the surgeon makes the afferent limb to long at the orginal surgery, I know you can develop candy cane syndrome. The afferent limb should be made to be about 1-2 inches. From my research, one can still end up with it, even if the surgeon makes the afferent limb the correct size at the original surgery. Mine was found only 2 months after surgery. It is a VERY rare complication with one only having a 0.4 -1% chance of developing this condition. I'm anxious to hear what your surgeon told you about it. Thanks.
I would contact Dr Ara Keshishian, he is top 3 revision surgeons in the world.
If you have a specific question for me, PM me or I will not see it, as I don't check responses on the forums and don't have anything forwarded to my email.
