Second Opinion

[maggiesara]

Alright, the time has come to deal with my complications, which are serious, unmanageable, and not going away. Specifically, I have constant diarrhea -- using the bathroom as many as 25 times a day, on occasion (though 12-15 is more common). My anus hurts pretty much all the time, and I have frequent and debilitating bouts of nausea. All of this is exhausting, so my energy levels are in the tank.

I just got the results of my most recent test for C.Diff, and it appears that I have finally gotten rid of that: I tested negative. Which means that the only real explanation is a problem with the malabsorptive component of my DS.

My surgeon, Roslin, is simply not terribly interested. I want to talk to another surgeon, someone who specializes in this surgery, and has dealt with a lot of complicated problems with this surgery. I know NYB is going to recommend Pomp, at Weill Cornell, but I am hesitant about going to him: I had initially consulted him, nine months ago, and he made it clear that he does not do DS anymore. He said that he had seen too many problems with malnutrition, and he also mentioned diarrhea, though he certainly did not suggest that the level I'm dealing with was a potential concern. In any case, I'm really not up for the "I Told You So," and as I said, he made it clear that he is out of the DS game.

As nutty as it sounds, I am thinking seriously about contacting Keshishian, in California. I am in NYC, and I want to travel to SoCal like I want drug-free root canal. But I cannot leave this unresolved, and I have no faith in Roslin to help me resolve it.

I am terrified A) that the only option is to have the malabsorptive component reversed, and B) that I will not only regain all the weight I lost but will start struggling with diabetes again and will spend the rest of my life desperately trying to diet, and failing. I'm in despair.

[michellemj]

What about Inabnet or Herron at Sinai? They are believers in the DS (or used to be). NYB may know better than I.

[Mariposa(Heather)]

It cant hurt to contact Dr. Kesheshian. I am amazed at his accessibility. Twice in the last week I emailed him and the 1st time he called me back within 1 minute and the second time within an hour. I feel like he genuinely cares. For a worrier like me this is priceless.
Good luck!

[goodkel]

Ok, so you've ruled out c-diff. That's excellent.

Allow me to run down a list of possible causes so we can see everything that you have tried in one space:

1. Food/lactose intolerance
Have you tried an elimination diet?

2. Fat intake
Have you reduced/eliminated the amount of fat you are eating?

3. Bacterial imbalance
Have you tried a round of Flagyl?
Are you on a good probiotic?

4. Carbohydrates
Are you avoiding all carbs?

5. Intolerance to an ingredient in your protein supplement/s.
Can you list them here?

Sorry if I am making you repeat yourself. It is just easier to see everything in one place. That way we can be sure that we haven't missed anything.
Don't despair.
I am sure that something can be done besides a full reversal. Hang in there.

[maggiesara]

I have not in fact tried tinkering with my diet, in part because the worst diarrhea I had was when I was in the hospital, and on ice chips only. Also, I keep getting conflicting recommendations: Roslin tells me to eat nothing but turkey breast for a week -- which frankly doesn't strike me as realistic -- and my GI doc, who knows almost nothing about DS, tells me to eat rice and pasta. I suspect that what I need to do is try radically cutting back on the amount of fat, and see what that does. I don't know how to do that without going to carbs.

I started off on Flaygl for the C.Diff, but was taken off and put on Vanco because that was very early days, Roslin -- who prescribed it -- wanted me grinding the pills up in yogurt, and it was so nauseating that I couldn't keep it down. I have not tried Flagyl again. Tell me what it's supposed to do here?

I have not been good about the probiotics, though I have a good and epensive one sitting in my fridge. I guess that probiotics at this stage feel to me like trying to treat gangrene with a bandaid. But I'm willing to try.

I have gone through various levels of carbs. I'm probably at about 50 g a day these days. I could indeed take it down very low -- under 20, certainly, even lower than that for a brief period if necessary -- but I don't know how to do this without upping the fat. I feel whipsawed by the various carbs/fat recommendations -- not from you, Kelly, just in general.

At this point I'm not taking any protein supplements. My labs are good, so far as protein goes, and I'm getting what I need from food.

[brooklyngirl]

Maggie- I think Kelly has some good suggestions, but don't get overwhelmed in thinking you have to do them all at once. Start with one and see what happens, like the probiotic since you already have it. If after a week of that doesn't help, then try the lactose. I can't handle almost any liquid dairy unless it's 2 TBS or less, even cream for some reason. Thank god cheese is fine, but it's easy to switch to lactaid and cut out yogurt for a week. If it's not that, try reducing the fat. I'm sure you don't have to go too low, just do leaner cuts of meat, low fat cheeses/dairy and no cream or bacon for a few days and see if that helps.

I don't pretend to have suffered as badly as you have been, but the damn protein shakes really made me miserable and it only got worse with time. Mild discomfort turned into horrid cramping, awful gas and wayyy too many trips to the bathroom each day, plus having to leave social events in a hurry constantly and drive home in agony. It really did take me an elimination diet of a couple weeks to figure it out. Before that I thought that was how I was going to have to live my life forever.

And, after all that, I don't see how a call to dr K could hurt. If none of those common things provide you with relief he sounds like a great choice. After hearing so many experiences and stories, I'd go to him in a heartbeat.

[newyorkbitch]

Go see Dan Herron at Mt. Sinai. He's really smart, very straightforward, and a terrific person. Generous with his time, and responsive. He's been doing/around the DS for a long time - for at least 14 years.

Flying to Keshishian doesn't make sense to me. You may need ongoing treatment, maybe other physicians involved...you need a local team. Mt. Sinai has that.

I really like Herron's PA too.

[newyorkbitch]

Maggie, it seems to me there are a lot of things you can try (per Kelly's post and your response) on your own.

Flagyl, probiotic, elimination diet, carb reduction, fat reduction, dairy reduction, etc. What was true in the hospital may not be true now.

I'd start with diet - eat only lowfat protein, no dairy at all, and some low fiber cooked vegetables. Like chicken, turkey, fish, and veggies - and that's it. Tons of water. Do that for a week, adding in a probiotic and perhaps some flagyl (for which you will need a prescription). See how that works. If things are better, then you add in one food at a time and see what the culprits are.

Also, you might consider seeing another GI doc - talk to Herron about that.

[kirmy]

Did you get 3 clear C-Diff results? One on its own means nothing. I am terribly sensitive to lactose and wheat/ gluten. This has got progressively worse over time. By turning to an almost exclusive paleo diet I have regained control over my poor digestive tract.

Bacterial overgrowth is likely but then again hitting you with Vanco will be an open invite for c-diff to come a knocking. Get those probiotics down your gob, get a food diary going and get onto Pinterest and download some paleo recipes and start looking after yourself by getting back to basics. Throwing your hands up in the air won't accomplish anything and frankly surgery should be the last option once these others have been tried.

I get that you're at the end of your tether but honey it is up to you to get your ducks in a row. Let's face it we signed up to destroy our bowel villi. We created food intolerances that will exaggerate this process so by going to these sources first you will likely regain control of your issues. Outside of a bacterial cause this is the most likely.

[Deleted]

Are you taking your CALCIUM?? If your taking the Calcium Citrate like your supposed to ( 2 pills 3-4 times daily) that should significantly firm you up. I get really loose if i don't take mine, and will have bathroom days of 10 plus times.. When i take my Calcium, I'm at 3 maybe 4. and sometimes 1!

Take some Tylenol for your anus, The external hemorrhoids are probably very irritated and excessive BM's will make them sore. Also, Take a PPI (nexium, prilosec, Omeprazole, etc) to reduce stomach acid. If you happen to have an ulcer somewhere in your digestive tract, reducing the acid will make it feel better and let it heal faster along with making less acid for your large intestine (colon) to neutralize and extract water from..

[newyorkbitch]

Maggie you may have an anal fissure. Have you seen a colorectal surgeon, to get it checked out?

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[maggiesara]

These are all very interesting and helpful suggestions.

1. I eat largely Paleo (was straight low-carb for many years) most of the time, so I don't think it's dairy or wheat; I just tested negative for celiac. HOWEVER, I am heading to Weill Cornell this week to do some elaborate breathalyzer test for bacterial overgrowth.

2. I could really use some help with the low-fat-protein, low-fiber-veg thing. It's so different from how I've been eating. Sample menus would be hugely helpful, if anyone wouldn't mind. If we're talking low-fiber veg I guess we're talking about increasing the carb levels for the moment. So….sweet potatoes?

3. The calcium point is a really good one. I have NOT been taking it, because what I had were those damn sugar-alcohol-sweetened chewies that made me so wretched for about four days. Somebody tell me quickly, if you would, what brand OF NON-CHEWIES to buy, and how much to take?

4. I don't have any sensation of stomach acid -- no reflux that I'm aware of, etc. I never had a GERD or stomach-acid problem before surgery, and that doesn't feel different. Do I still need to be taking a PPI?

5. NYB, thank so very much for the recommendation to Herron, and what you say makes sense. However, I also really like the idea of trying to treat this with diet and drugs before heading to surgery again, so I'm going to file him away and hold off for the moment.

6. Kirmy, I have heard that C.Diff has a tendency to produce false negatives. In fact, I asked my doc about it this morning, when he called with the results. He said that the specific test he ordered is particularly sensitive. I think for the moment I have to assume that the C.Diff is gone, and look into these other areas. If none of them produce any results, it may make sense for me to insist on a second and even a third test for C.Diff.

[newyorkbitch]

Maggie, just go talk to Herron. You don't have to consider surgery yet. But talking to him would be a good idea. He will probably have a GI doc to recommend, or who knows what else...testing, etc etc. Go talk to him. Plus, you will enjoy him.

[newyorkbitch]

Here's a list of low fiber vegetables....it's interesting to see the differences.

kitchen-parade-veggieventure.blogspot.com/2008/02/high-fiber-low-fiber-vegetables.html


Vegetables with Eight+ Fiber Grams
Avocado, California (1 cup) - 16 (Avocado Recipes)
Tomatoes, Fresh Sun-Dried - 14 (Tomato Recipes)
Avocado, Florida (1 cup) - 13 (Avocado Recipes)



Vegetables with Seven Fiber Grams
Artichoke (1 choke) (Artichoke Recipes)
Lima Beans, Baby (Lima Bean Recipes)




Vegetables with Six Fiber Grams
Edamame (Edamame Recipes)
Jicama (Jicama Recipes)
Lima Beans, Fordhook (Lima Bean Recipes)
Parsnips (Parsnip Recipes)
Peas, Green (Pea Recipes)




Vegetables with Five Fiber Grams
Garbanzo Beans (Garbanzo Bean Recipes)



Vegetables with Four Fiber Grams
Brussels Sprouts (Brussels Sprouts Recipes)
Cabbage, Savoy (Cabbage Recipes)
Edamame (1/2 cup) (Edamame Recipes)
Eggplant (Eggplant Recipes)
Endive (Endive Recipes)
Fennel (Fennel Recipes)
Green Beans (Green Bean Recipes)
Kohlrabi (Kohlrabi Recipes)
Okra (Okra Recipes)




Vegetables with Three Fiber Grams
Beets (Beet Recipes)
Broccoli (Broccoli Recipes)
Broccoli Raab (Rabe) (Broccoli Raab Recipes)
Cabbage, Green (Cabbage Recipes)
Carrots (Carrot Recipes)
Cauliflower (Cauliflower Recipes)
Corn (Corn Recipes)
Hearts of Palm (Hearts of Palm Recipes)
Mushrooms, Enoki & Oyster (Mushroom Recipes)
Peas, Sugar Snap (Pea Recipes)
Peas, Snow Peas (Pea Recipes)
Potatoes, White (Potato Recipes)
Rutabaga (Rutabaga Recipes)
Sweet Potato (Sweet Potato Recipes)




Vegetables with Two Fiber Grams
Arugula (Arugula Recipes)
Asparagus (Asparagus Recipes)
Bell Pepper, Red & Green (Bell Pepper Recipes)
Cabbage, Red (Cabbage Recipes)
Celery (Celery Recipes)
Celeriac (Celeriac Recipes)
Chard (Chard Recipes)
Chayote (Chayote Recipes)
Daikon (Daikon Recipes)
Jerusalem Artichokes (Jerusalem Artichoke Recipes)
Kale (Kale Recipes)
Leeks (Leek Recipes)
Lettuce, Romaine (Lettuce Recipes)
Onion (Onion Recipes)
Potatoes, Red (Potato Recipes)
Pumpkin (1 cup purée) (Pumpkin Recipes)
Radish (Radish Recipes)
Rhubarb (Rhubarb Recipes)
Spinach (Spinach Recipes)
Summer Squash, Yellow (Summer Squash Recipes)
Tomatillo (Tomatillo Recipes)
Turnips (Turnip Recipes)
Winter Squash (Winter Squash Recipes)




Vegetables with One Fiber Gram
Bell Pepper, Yellow (Bell Pepper Recipes)
Bok Choy (Bok Choy Recipes)
Corn, 1 ear (Corn Recipes)
Cucumber (Cucumber Recipes)
Lettuce, Iceberg, Red Leaf, Green Leaf & Butter (Lettuce Recipes)
Mushrooms, Button & Crimini (Mushroom Recipes)
Potatoes, Russet (Potato Recipes)
Pumpkin (Pumpkin Recipes)
Radicchio (Radicchio Recipes)
Tomatoes, Fresh (Tomato Recipes)
Zucchini (Zucchini Recipes)



Vegetables with Zero Fiber Grams
None!

[newyorkbitch]

Oh - re calcium. I just get generic calcium citrate. Citracal is the brand name one.

[maggiesara]

Ok, so we think I should bite the bullet and go up on the carbs some, to accommodate those veggies?

I will take your advice and call Herron; you're right, nothing to lose.

I just ate a packet of whatsit, probiotics, whisked into some cold soup. It wasn't horrible. I'll keep doing this.

I can start the lower-fat/low-fiber-veg thing on….Saturday.

If someone will give me the stats for calcium citrate, I'll start on that pronto.

Many thanks

[Deleted]

I just take Wal-Mart brand Calcium Citrate (600mg) tablets. They are large, but, it will firm you up in a day if you take 2 tablets 3-4 times daily. (1800 to 2400mg daily.. )

$8 for 200 tablets..

Yes, I would take the PPI right now to reduce irritation (down there)... It won't affect absorption, but will reduce your BM's acidity. while your firming up with the calcuim.

[newyorkbitch]

FWIW, calcium doesn't firm me up in any way. And I take a shitload (pun intended) of calcium.

[Deleted]

Well, I think your one of the few that experience that NYB. For most, Calcium helps firm BM's up.. Of course, everything is YMMV.

Just posting what works for me.. Take with salt, a grain, or a shaker full, your choice..

For the record, Too many sugar carbs, and it doesn't help me either... Thats not the norm though.

[newyorkbitch]

Take 2400mg of calcium citrate. That's 2 tabs, 4 x a day.

As for carbs...the carbs in the veggies are fine. It's the wheat/sugar carbs that you should reduce to an absolute minimum...or completely.

Lean protein and low residue veggies. Water. That's it for now and you'll see how it goes after 5 days.

You can get probiotic capsules, you don't have to use powder.

[newyorkbitch]

I'm sure you know this - when you see Herron, bring everything with you - your surgical report, all your testing, blood work...every prescription you got.....everything. Maybe send it all to him ahead of your appointment, to save time. Actually you should write a document of the whole situation - chronology, issues, etc etc and send that too, along with all the rest of the stuff.

[newyorkbitch]

Also Maggie, have you tried taking immodium?

[goodkel]

Roslin tells me to eat nothing but turkey breast for a week -- which frankly doesn't strike me as realistic

Read more: weightlosssurgery.proboards.com/thread/8583/second-opinion?page=1&scrollTo=122206#ixzz2rdAv4ygo


Actually, that is very good advice. Give your digestive tract time to calm down. Low fat, high protein.

I had trouble with poultry. If you find it difficult, too, try steak or fish.

After a week of that, add one new thing at a time.

Don't be thinking of menus and "meals". Right now you need to graze on one thing throughout the day whenever you are hungry.

"Meals" come after you know what is causing your problems.

[brooklyngirl]

Just off the top of my head...
Turkey meatloaf
Chicken meatballs
Grilled cutlets
Grilled/lightly sautéed shrimp
Broiled salmon or tilapia
Tuna or chicken salad with small amount of light mayo or olive oil and vinegar
Filet mignon
Crab legs boiled with old bay
Broiled lobster with Cajun seasoning
Teriyaki flank steak
Turkey burger with low fat cheese

[mistercy]

Great advice from everyone here! I am also going to second what NYB is saying, about Herron, who I am going to have repair my hernias, seeing a colorectal surgeon, and the immodium. I went through similar experiences for the first six weeks after surgery, and it was the combo of meds, probiotics, taking all artificial sweeteners out of my diet, and adding immodium that stopped the runs. The Calcium Citrate is important. I take UpCal, a powdered form, and it goes down well. I'll bring some packs with me next Monday evening! I really hope it all gets better soon, Maggie!

[maggiesara]

Ok, I think I have some marching orders. Lower the fat, be willing to up the carbs (with veggies), try a few days of serious elimination diet, calcium, call Herron's office and get an appointment.

Not Immodium, I don't think, but yeah, Pepto, and some anti-diarrhea OTC thing and Lomatil. Nothing did anything.

Ok, I can do this.

[maggiesara]

HAH! I suddenly realized I know perfectly well what to eat for a low-fat, low-carb, high-protein week: sashimi. Buckets of sashimi. Okie doke, this I can do. You know, it's just that any time anyone says "low-fat" to me, I start having grim, shuddering, resentful thoughts about skinless chicken breast. It's sort of like former soldiers who compulsively duck for cover every time a car backfires. All of us who have been through the Dieting Wars know what I mean.

[indianamom]

Ouch Maggie! I'm sorry for what you are going through! I don't have any useful advice since I'm a newbie. I will follow your thread and hoping you get some much needed relief soon!

[newyorkbitch]

Maggie - when I eat a lot of sashimi, I get the runs. Start with cooked lowfat protein first. If things are better after 5 days, then you can start adding things in one at a time.

Also - I know you know this - but watch the mercury levels in the sashimi...too much isn't good.

I know what you mean about the skinless chicken breast - but just do it for 5 days - anything is better than what you're going through now. Hey - you can go to Esca and have some wonderful cooked fish and vegetables.

Oh by the way - we went to Fish Tag on 79th St. for dinner Friday. Really good fish and seafood.

[maggiesara]

:Poooooh Esca, what a great idea. Want to come with? Wouldn't mind going to Fish Tag either.

And ok, I hear you about the sashimi. Cooked it is.