I have very little dietary advice, but you might want to recheck the lactose content of hard cheeses like cheddar. It’s probably much lower than you’d expect.

Aw thanks so much Scott, I wish I love cheddar! I really can't tolerate any cheese except maybe a sprinkling of parmesan on my pasta (which I can't eat!!! Grrrr!)

@BNellNY posted:

Aw thanks so much Scott, I wish I love cheddar! I really can't tolerate any cheese except maybe a sprinkling of parmesan on my pasta (which I can't eat!!! Grrrr!)

Have you tried vegan cheese?

I didn't think of that. Oh darn, I just checked a few types and it's more carbs than protein. : (  But thanks so much.

@BNellNY posted:

I didn't think of that. Oh darn, I just checked a few types and it's more carbs than protein. : (  But thanks so much.

Your welcome! I like Daiya the best, they have: vegan cheesecake and vegan pizza!!! YUMM! LOL

Okay, I’m not beaten (yet)! Have you tried these: https://www.lactaid.com/produc...aid-fast-act-caplets

Hi BNel, I drink Premier Proteins 2 x a day...30g of Pr.  Keeps me strong  and energized and I feel full.  I also eat Fit n Light Greek yogurt for breakfast. Great variety of flavors !  Women need 50-70g /day. I add my vanilla Pr to coffee and sip on all day. I can't eat beef or chicken  or lettuce or any raw veggies.  I end up in ER! I can eat shrimp and pasta in small amounts . I eat hard boiled eggs frequently  as a snack. Does any of this sound good to you? Whole new way of eating!☺

Avocado in french toast( without the milk)chicken and avocado with salt sandwiches.bananas,pumpkin soup with wholemeal toast.pork sausages in wholemeal bread or bun.chicken breast sliced in pieces and then coated in breadcrumbs and egg twice and lemon while cooking.

BNellNY, you can surely try such a high protein diet, but why does your GI think it will improve your frequent blockages?

I read your post 4 years ago (Medication for Crohn's...), so the problem persists for more than 5 years now. Did your GI do scans to identify the location where those blockages happen? Live scans when you had such a blockage or an MRT?

Or does he think the pouch itself is the reason (floppy & prolapsed)?

Have you optained a second opinion about blockages / diet?

My GI  didn't recommend for blockage but for healthiness, keep muscle mass, strength, fullness and not tolerating beef and chicken. My blockage was from lettuce, raw carrots , scar tissue and at the collar connection . Someone said they were losing weight and needed some options.

This system is really annoying. I got a bunch of feedback, thank you ALL, but there's only this one place to reply!! Grrrr.

Lauren Of Emerald City, thanks again for the suggestion, but as I wrote, the vegan cheese has as much carbs as protein so that is not a good solution. The  ratio of protein to cheese/carbs should be 80:20. Same with protein to fruits/veggies.

Scott F! I love that you aren't giving up! Back in the day, before I  had my colectomy and discovered I was lactose intolerant, those pills worked fine. But post-colectomy they didn't  work. But it's been a while, maybe I should revisit them???

And thank you Drbev603! that's the kind of thing I'm looking for "safe" protein shakes since I can't have my Orgain any more. I just hope that it's a protein  powder that the nutritionist will approve! I found another one, so maybe if I switch off? Afraid I can't do the Greek Yogurt, no dairy... Wow! Your diet is so different from mine, what the heck can you eat?

Dear Chook2, supposedly I'm only allowed cooked veggies, but will ask the nutritionist about avocados. BUT I can't have sandwiches, as mentioned I have to limit my carbs, so maybe I could have 1/2 a piece of toast, but no more. And only a very little amount of breadcrumbs...

Hey SteveG, frankly I have NO idea why the GI thinks this will improve my blockages. I haven't spoken to him about the diet only his minions. I have several misgivings about it myself.But then again, I've been eating mostly the same things for years (had colectomy in 2007) and the situation only got worse.

Yes, I was in th ER early July, and they did scans, and then an MRI, I have several problems, the floppy pouch, kinks, and the prolapsing. NOt sure I understood yourM  question: "does he think the pouch itself is the reason (floppy & prolapsed)?" Actually, the GI who's prescribing this diet IS  my second opinion, my regular GI was stymied, while I think he knew what the problem was, he's more about giving meds (I'm on Remicade) so he thought I needed to see someone who could actually fix me surgically (for the time being anyway.)


***IS THERE A WAY TO ANSWER EACH OF YOU INDIVIDUALLY??? BECAUSE IF THERE IS IT AIN'T WORKING FOR ME !

Yes, Drbev603, that's would I would like something a little healthier than eating just protein.  I look forward to speaking to a nutritionist because the nurse I spoke to said that protein powders weren't advisable for the long term (although I've been having the Orgain protein shake for years, and I doubt that's causing the problems with my pouch.) But, as mentioned, maybe if I rotate different protein powders that might help... Thanks again for your input!

So what I learned from my short episode of low carb diet is, that you should increase your fat intake also. That gives you energy, though it is harder to gain for your body than from carbs.

Have you been looking for vegetarian high protein stuff on corresponding websites? I tried pumpkin fries as replacement for french fries - quite tasty.

For breakfast, there is also yoghurt from soy or coconut where you can add chia seeds, nuts, ground linseed, low carb (cooked) apples... depends on what you like and what you tolerate without blockages.

Thanks again SteveG, yes, I'm definitely not concerned about lean cuts of meat!

As for vegetarian options, I think I mentioned I can only have very small portions of veggies, never even heard of pumpkin fries! Couldn't the seeds be a problem?

And a lot of non dairy yogurts often have sugar, the thick coconut yogurts just don't sit well with me (been there, done that) and I can't have chia seeds or nuts. I'm going to ask about cooked apples. I make my own applesauce and it's very nice. I can't have a lot since I have to limit fruits and veggies as well.

BNellNY, I'm sorry, your options for solid food seem to be very limited.

Have you been thinking about a (temporary) stoma? Would that bypass the problematic part of the bowel (you mentioned kinks)? I imagine it to be very hard having a mainly fluid or mushy diet on the long term.

Hey Steve, no, I haven't been thinking about a stoma temporary or otherwise. But I'm not on a liquid or mushy diet, I can eat meat, fish, eggs, just have to chew very mindfully. The problem for me is the small percentage of carbs, veggies and fruit. I LOVE my carbs; noodles, dumplings, bread, potatoes, worst of all sugar! And what's scary is now that they're off limits (to some extent) I see there are carbs in EVERYTHING even soups, which I also love, and having a soup with just meat and little or no carbs is just plain boring. My diet has been reduced and reduced over the years, and this is the worst (although I know of a woman who can ONLY have meat not even fruits or veggies.) Thanks again.

Most of the treatments for prolapsed Pouches do not focus so much on diet as they do on muscular therapy. The various types of prolapsed pouches and the treatments for them are discussed in this article. Protein diets is not one of the treatments I read about here and I am curious as to what the theory behind it is. I would read this, a co-author of which is the legendary Bo Shen:

https://academic.oup.com/gastr...icle/6/4/246/5048415

If you are near New York City, I would suggest seeing Shen and getting a second opinion, because you are suffering through a diet that does not appear to be on the radar of Shen approved treatments.

I agree to CTBarrister. You should see a pouch specialist.

Staying on an extreme diet that you do not like is a burden on top of your other problems. I completely understand your longing for carbs. Has the change in diet been any good for you so far?

Well, to be honest, I only discovered I'd have to be on this diet last week. It literally took me all week to get in touch with the nurse who initially explained it to me. She felt she was unqualified to answer my  all questions, so now I have to speak to a nutritionist, the one I know can't see me till November, and I can't wait that long, so hopefully the hospital I'm going to can get me to see another one sooner...

Which is a very longwinded  way of saying I have't started the strictest version of the diet yet, i.e., I'm cheating (not to mention right before I found out about the diet I bout a bunch of things I can't have) so while I AM trying to incorporate the diet, I do have things I need to finish, and things I need to  get clarified...  So, I'm slightly better, but that's because I had a slighty different pouchoscopy two weeks ago, and I had some not so nice reactions after that.... So hard to tell. (Sorry for the saga Steve!)

To CTBarrister, It is Bo Shen who has put me on this diet.

OK- I don't think you mentioned Dr. Shen previously. However, he doesn't mention protein diets in that article with his name attached to it on various types of prolapsed pouches. He and his coauthors discuss the treatments for the various types of prolapse issues and I am not seeing "protein diet" listed among the suggested treatments. Did he give you his thinking on it? And is the protein diet actually treating the blockages or the floppy pouch syndrome? I am a little confused.

@Chook2 posted:

Avocado in french toast( without the milk)chicken and avocado with salt sandwiches.bananas,pumpkin soup with wholemeal toast.pork sausages in wholemeal bread or bun.chicken breast sliced in pieces and then coated in breadcrumbs and egg twice and lemon while cooking.

I don't eat eggs anymore and it's a huge difference.I think anything that sticks to the pan is out.

Have you tried soft tofu?  Soft is lower in carbs than firm tofu. You can use tofu in smoothies, or scramble it like eggs (firm might work better in this case). Can you eat beans or lentils cooked until soft and turned into a hearty soup?

Thanks, yes, a couple of people suggested tofu but I didn't try it yet. Definitely cannot do beans or lentils. Funnily enough I had to have an emergency surgery and looks like the problem had nothing to do with diet so I can get off it. Yay!

@CTBarrister posted:

OK- I don't think you mentioned Dr. Shen previously. However, he doesn't mention protein diets in that article with his name attached to it on various types of prolapsed pouches. He and his coauthors discuss the treatments for the various types of prolapse issues and I am not seeing "protein diet" listed among the suggested treatments. Did he give you his thinking on it? And is the protein diet actually treating the blockages or the floppy pouch syndrome? I am a little confused.

Hi, I don't think I got notified you sent the above, I'm very  confused about replies here! I ended up in the ER and the problem does not appear diet related. Dr. Shen knew I was going to the ER (he told me to go) but that was the last I  heard of him (maybe he thought I was going to his hospital which isn't my hospital?) Anyway, sorry for the late response, I had already started having issues so may not have been attending (emails) and as mentioned, on this site it's not obvious how to reply...

@BNellNY posted:

Well, to be honest, I only discovered I'd have to be on this diet last week. It literally took me all week to get in touch with the nurse who initially explained it to me. She felt she was unqualified to answer my  all questions, so now I have to speak to a nutritionist, the one I know can't see me till November, and I can't wait that long, so hopefully the hospital I'm going to can get me to see another one sooner...

Which is a very longwinded  way of saying I have't started the strictest version of the diet yet, i.e., I'm cheating (not to mention right before I found out about the diet I bout a bunch of things I can't have) so while I AM trying to incorporate the diet, I do have things I need to finish, and things I need to  get clarified...  So, I'm slightly better, but that's because I had a slighty different pouchoscopy two weeks ago, and I had some not so nice reactions after that.... So hard to tell. (Sorry for the saga Steve!)

Hi BNellNY,

Im very interested in hearing how things go for you as I’m in a similar situation. Just established with Shen and travelled down to NYP for sinusotomy and floppy pouch complex. He banded my pouch to treat the FPC. Did you have this done? If so, how may times?  I had a nightmare of a time at NYP when I had to return to the ED the night after my procedure with pain and vomiting. I won’t even get into what a terrible experience it was.

Like CT above, I’ve never heard of this strict protein/fat only diet and don’t understand how it works mechanistically for FPC. Honestly it makes me nervous he suggested it to you. If I’m told I need to eat only protein and fat the rest of my life I’ll go back to the bag in a heartbeat. That doesn’t sound like a sustainable diet, not to mention the cardiovascular implications.

I found the same as you that Shen seems great but his support staff including NPs/PAs can’t answer any questions. I’m not super happy with with the experience.

Please keep us posted. I hope you find some relief!

Hi,

First, yes, I did have the banding twice, the first time was in the fall of 2020. Dr. Shen said I would need it again in a year.But I started experiencing pain and blockage issues again by summer. I finally contacted Dr. Shen, and was able to speak to a doctor who works for him who was very helpful and explained that sometimes you need banding sooner, like after 6 months...

I had never heard of the protein diet either, and frankly I was having a VERY difficult time with it (as mentioned above) I love my carbs and I was losing weight and just disgusted with the diet. In reference to his staff, I hear you, it can be very difficult to get answers from them. Other than the nice doctor I spoke to, Dr. Kapten. Sadly I have the same problem with my "main" GI who is at Weill Cornell, I think it's the nature of the beast. BUT, if you read on you'll see I had surgery, and that surgeon and her nurse have been very responsive. On of her bosses did my colectomy back in 2007....

Now, I'm not sure I mentioned this, but first, in early July (this was prior to the second banding which wasn't till Sept. 2021) I was having an unpleasant pain, and felt nausea, and was probably partially blocked. I called my GI at Weill Cornell and he said he didn't know what the matter was and that I ought to go the the ER, as it happened, by the time I went my problem had almost resolved. A CAT scan showed nothing. But I was stuck there for a few days so they could monitor my diet, and see how I tolerated food.

Fast forward, about two weeks after starting abysmal protein diet I started having pains similar to previous ER visit. (And this was POST second banding!) I contacted Dr. Shen this time and he too said I should go to the ER. It was a Saturday and I decided to wait till Sun. went on Sun. at noon, later that day I finally had a CAT scan, and lo and behold, they discovered an obstruction and I had to have surgery. I had a lovely surgeon at Weill Cornell, she said that I had a "string" (adhesion) in my intestines (NOT my pouch!!)  which was removed. After the surgery I asked if it was diet related and she said no. So I took myself off the protein diet (not that it mattered in the hospital.)  I also asked  why the adhesion hadn't been seen in previous scans and the surgeon said because it moves... In other words that might  have been at the root of my problems for a while?  But that has yet to be determined, I'll probably need more tests. In any event, I am OFF the diet!

Hope this was helpful...

BNellNY,

Yes, very helpful. Thanks for sharing. Can I ask did you ever have good pouch function (eg early after takedown)? Did you have near immediate relief with banding? Finally, what were/are your symptoms of FPC and what is your stool consistency like? I need to keep mine watery to empty.

Thank you for entertaining all my questions! I haven’t found anyone else with experience with FPC and banding.

Glad it was helpful. Oh gosh, good pouch function early after takedown? You mean after the colectomy? That's a while ago, all I do remember is I had VERY frequent (loose) BMs from the get go. And that lasted a while. Then for several years I had much more normal output, in terms of frequency (stool itself continued  loose.)  I did have some relief after the initial banding, but as I wrote, I'm afraid it didn't last very long. The reason my GI at Weill Cornell sent me to Dr. Shen was because I was having too many incidents of blockage. I suspect you're talking about the floppy pouch when you wrote FPC? I don't remember that term being used. MY stool is, and has always been very loose. Please don't hesitate to ask any other questions,  if I didn't address everything....