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Crohn's Disease Forum » Diet, Fitness, and Supplements » What to eat with proctitis, fissures, and fistulas


04-17-2012, 08:17 AM   #1
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What to eat with proctitis, fissures, and fistulas

Okay, so along with Crohn's, I have a fissure, severe proctitis, and setons, plural.
I want to eat, but I even have trouble absorbing rice; it does something weird, and I end up with acne and swelling, so ... yes, I can eat rice, but no, I do not want to. In fact, I can't seem to do most breads or grains. I can't drink Ensure because it causes a lot of pain, and most anything else for the same reasons. The only things I seem to be able to eat are my soy protein shake (no vitamins in it except electrolytes, calcium, & iron; I take multi-vitamins for that), peanut-butter, and vegetable oils. I've recently experimented with oatmeal, steamed, blended, & buttered cauliflower (mm, the perfect vegan gravy/white sauce), and various peanut butter recipes (all from Mikeyarmo's awesome recipe posts), but I don't yet know how much that's going to hurt. Today, I'm attempting applesauce, and then various types of steamed squash & carrots tonight, but I was wondering if anyone else with severe fissures, proctitis, and setons had any more complete solutions and/or suggestions?

(Oh, but I have recently discovered the joys of Maltitol syrup and Xylitol sugar! Yum! I don't even know if they cause pain yet, but it's nice to have something that doesn't promote tooth decay!)

Basically, anyone with fissures, proctitis, and/or setons, your experience would be greatly-appreciated here!
Thanks!
04-18-2012, 10:10 AM   #2
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Hmm. Well, I figured this would be a "campaign" question and would take a while. I might as well post my own findings, then. Here's a rushed report of my current experiments, including what I can/can't eat. Currently, I'm in a very beneficial situation right now, since I seem to be in remission, and I can instantly tell when something bothers me as it temporarily causes massive inflammation, and then after I go back to what works, the inflammation disappears a day or so later. I suppose that means the Cimzia is working ... ?
Bear with me!

0.) Simple sweetener-free protein powder shake mix and cheapo multi-vitamin tablets. I make sure to get the tablets with vitamin K, Calcium, Iron, and B-complex at the very least, but ones that have all of these usually contain everything. I usually buy D3 tablets separately because I want to get the vegan variety pulled from bacteria & yeast rather than animals. (D2 is dangerous when consumed at the levels required to match D3, so I usually ignore it, since most multi-vitamin tablets that contain D2 don't have enough) I go for these rather than the expensive stuff or the overly-sweetened Boost/Ensures (But you have to find the versions with good amino acid profiles, especially ones with Glutamine, which is important for tissue repair) Right now I'm just doing the soy protein shakes from Whole Foods, but I'm still looking for a good cheap replacement with glutamine. As soon as I switched over to this rather than the expensive stuff, I noticed a huge difference in the reduction of inflammation and pain, so I know my body was responding to something in those expensive powders that isn't in the simple basic protein mix or the multi-vitamin tablets for that matter. The other issue about these is that if you get the right combination of protein powder and multi-vitamins, you'll end up saving money over the expensive stuff. I just find that the expensive stuff and the Boost/Ensures are just SO INSANELY PAINFUL when coming out.

1.) Vegetable Oils: (Updated 4/23/12)
Olive, Canola, Coconut, Walnut, Peanut, etc.
Increasing my intake of these with most of the foods I eat has helped immensely with the pain. I have no idea what it's doing to my cholesterol at the moment, but I plan on buying one of those cholesterol measurement devices at my local pharmacy pretty soon.


2.) Breads. I haven't been able to tolerate anything. It's all painful & inflammatory. I've tried Ezekiel, I've tried gluten-free, wheat-free, and soy-based, and making my own. So far, no good, although my next step is to repeat these experiments with Miralax.

3.) Creamy natural peanut butter. It's a miracle food for me. I have no idea about the impact it makes on my gut, because I hear peanuts technically aren't allowed in the SCD plan, but it works for me. While the final outcome usually messes with the setons, it's not painful. (Depending on how creamy it is. The creamier the better. Not all peanut butters are created equal.)
(Update, 4/23/2012, Can only eat this in moderation. If too much, it's still bad.)


4.) Oatmeal - The jury's still out on this one. It may have to do with how much water I use. I am currently awaiting the pain test.

5.) Steamed, blended cauliflower - Delicious with vegetable butter & salt. I added steamed carrots and steamed squash to the mix, along with some spices, and lots of vegan butter, and had a delicious cream of squash/cauliflower soup. I added the leftover pieces of squash and carrots into it, but it didn't taste nearly as good as when blended with the spices and butter. As posted above, I still don't know what this will do to me yet, but I will post info on whether there's inflammation and pain.

6.) Plantains - I stay away from these. I tried using them in place of eggs for various items. I haven't tried them steamed, yet, but every implementation I've attempted has ended in tears. Bananas appear to be more hit-and-miss, if kept in moderation. Either way, there's still inflammation. (Update, 4/23/2012: I just stay the heck away from bananas altogether, now.)

7.) Maltitol and xylitol - I still don't know what effect these will have on my guts, unfortunately, but I will soon. I do know that maltitol has laxative properties when consumed in sufficiently large amounts. These two sugar alcohols don't promote tooth decay, and while the former isn't digested by most bacteria, the latter actively starves off bacteria and yeast by blocking their food entry ports when trying to eat it.

8.) Garlic, Yellow Onion, Red Onion -
I found all three of these to be painful, (although I seemed able to tolerate red onions and a tiny, tiny amount of garlic in a tofu/egg scramble, but that was still with a lot of inflammation due to the Ensures I was drinking at the time. I must rerun this test to see whether or not there's any inflammation) but at the same time very important:
a.) Garlic is the number one generic anti-cancer vegetable. The only vegetables that come close to garlic in anti-cancer properties are its cousins in the leek family, (and of course, many of the vegetables in the cruciferous family) including b.) the yellow onion.
c.)Likewise, vegetables that are high in phytonutrients are also important, because those we can't get anywhere else, and are usually broken down quickly once the vegetable is in a mashed/digestible form. Red onions are amazingly high in phytonutrients, but then so are a lot of fruits. It's something to keep in mind.

9.) Turmeric - I add this spice to darn near everything I eat nowadays, due to its anti-inflammatory properties. I have unfortunately not noticed ANY difference whether I use it or not, but an ounce of prevention, as they say...

10.) Other recipes.
Early on, I experimented with tofu, bananas, soy & coconut flours, coconut ice cream, diabetic foods (to keep my sugar intake down), almond butters (almond-anything seemed to hurt a lot for some reason!), coconut fat, soaked nuts, and various juices. I almost have enough material to make my own cookbook, although I haven't fully stabilized most of these recipes. A lot of them might work for other Crohnies, although many haven't really done much for me. I guess I'll start posting them as soon as I can pin down the proper ingredient amounts that work best. The main problems have been with keeping consistent results across different sweeteners, oils, alt milks, eggs vs egg-replacements, and flours. Especially maltitol, which darn it, won't caramelize!

Last edited by SciFiGuy; 04-23-2012 at 04:22 PM.
04-18-2012, 11:06 AM   #3
CLynn
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You are providing a great wealth of info here, Sci!
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04-21-2012, 04:08 AM   #4
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Thanks, CLynn!

Update on what to eat/not to eat with severe proctitis, fissure, and fistulas w/setons:

3.) Addendum: Baked and fried peanut butter are both out. I tried making various forms of peanut-butter cookies and peanut-butter faux caramels, and came up with some tasty treats that really hurt when passing the setons. It also can't be good that even regular creamy peanut butter messes with the setons, in spite of the lack of pain; it may have to go back on the no-go list, anyway, just to be safe. :-(

4.) I have to redo the oatmeal test.

5.)Blended, steamed cauliflower appears to have been tolerated okay, (may have to redo blended, steamed cauliflower+blended, steamed squash), but blended, steamed cauliflower with chopped, steamed squash is also a no-go.

6.) Bananas are definitely a no-go.

7.) I also have to redo the maltitol & xylitol tests :-/, although I'm not really looking forward to any of the retests, now. I will probably use chamomile tea for these.

11.) Carbonated anything hurts the gut in general. Doesn't seem to matter what it is, but I'm not interested in finding out the specifics, for obvious reasons. :-)

My freezer is getting filled with treats I can't eat yet!
04-21-2012, 08:51 AM   #5
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This is great information, thank you. Do you mind if I change the thread title so it's a little more descriptive and easily searched for? That way others might find and join in over time.
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04-21-2012, 01:40 PM   #6
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By all means, please do! Thank you!
04-21-2012, 05:49 PM   #7
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Thanks! Please PM me if you're not happy with the new title.
04-22-2012, 10:09 PM   #8
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I have a fissure, hemroids and now an abcsess or fistula (not sure yet), and all this info on tolerating peanuts but not penut butter makes sence. I read that natural peanuts, no salt no additives, are really great for bowels. Also on all the oils, I agree with the coconut (though hate it but want to incorporate it once I start scd), but sunflower oil is supposed to be great, instead of vegetable/canola. So I use sunflower. I'm still mainly on low residue, though with 6mp my bowels have been a lot better, just bloating and cramping at times, but the fissure and fistula don't sting so much. I don't know about when I start the scd diet though. :/
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04-23-2012, 02:21 AM   #9
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Thanks for posting, and I'm happy that you seem to be doing better!
I'm surprised you can handle peanuts! I'm afraid to attempt them. I know I can't handle walnuts or especially almonds (almond-anything, almond milk, almond butter, almond ice cream) for some reason. I should clarify that I can handle peanut butter (barely, just barely...)(Update, 4/23/2012, only in moderation. If I eat too much, it's still painful), but not when I attempt to bake it or simmer/fry it. In fact, I went out and bought some extra peanut oil today to add to the peanut butter to see if the added oil helps :-).

Thanks for the sunflower oil info. I will look that up! As far as I understand it, the increased intake of oil should be fine so long as whatever oil you use has a lot of monounsaturated or polyunsaturated fats, and little-or-no saturated fat unless it's a medium-chain fat, like coconut oil, which, if the science journals are correct, is safely picked up directly by the liver.

It's the mono & polyunsaturated fats that increases the HDL "healthy cholesterol", (From what I've read, the polyunsaturated fats do more of the heavy lifting, but they both still do the job) which in turn decreases the LDL "unhealthy cholesterol", and the saturated fats that increase the LDL, iirc.

I've also tried coconut ice cream, (and unfortunately only looked at the fiber content after I had eaten the whole pint) which turned out to be a painful mistake. It's great if you need to increase your fiber @ 10g per serving, though.

Last edited by SciFiGuy; 04-23-2012 at 04:20 PM.
04-23-2012, 05:49 AM   #10
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My brother Jim had a liking for peanut butter fudge, and he said it helped his digestion. This is a candy recipe I have been tinkering with here and there. No idea if it is ok for you though. But since you were discussing sugar free and peanut butter it seemed like it might fit.

This is still an experimental recipe, I don't have the exact measurements figured out.

Peanut butter squares

Melt 1/4 cup of pure beeswax in a pan, use low heat!
Add 1 1/2 cups of organic sugar free peanut butter I use soy free peanut butter.
Add 1 tablespoon stevia or other sweetner of choice.
Add pinch of salt.
Add cinnamon or ginger or both.
Stir until mixed well
Spread on a sheet of wax paper.
Put in refrig to cool for 30 minutes to an hour.
Optional: Cut in squares and eat only one each day, chase with a shot of
pure lemon juice. Ok don't do this just a joke!

Variations:

Add coconut shreds, chopped dried fruit, other add-ins.

Another nice thing to do is mix up some carob powder with cinnamon and spread it on the wax paper first. Then spread the mixture on that. You can also sprinkle the top of it with same or with coconut shreds.

You can make a chocolate peanut butter version also by melting chocolate baking squares in the pan. You might not need as much wax for the chocolate version.
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04-23-2012, 04:18 PM   #11
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Thanks, GFinDC - I may try that ... without the variations, salt, or lemon juice of course. I'm not trying to commit suicide, here ;-D

Basically, the task is trying to figure out which foods cause the least amount of irritation on severe wounds, and plan meals around them.
04-23-2012, 06:58 PM   #12
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Thanks, GFinDC - I may try that ... without the variations, salt, or lemon juice of course. I'm not trying to commit suicide, here ;-D

Basically, the task is trying to figure out which foods cause the least amount of irritation on severe wounds, and plan meals around them.
You are welcome SciFi. My brother who had Crohn's always liked peanut butter fudge. He used to make it all the time, said it didn't bother his digestion. I did a painting of him a few years ago called Jim-Joe's peanut butter fudge. He sure liked it a lot!
10-24-2012, 10:27 AM   #13
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I am. 40 year old female who has suffered with proctitis since I was 20. I have started taking one Evening Primrose oil pill a day and it has almost completely taken away all my symptoms.
11-07-2012, 05:41 PM   #14
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Based on your advice, I started taking Evening Primrose Oil, but then decided to look it up to see if there were any active ingredients in the oil specificially, and found it to contain a precursor to Omega-3's. I'm not entirely certain about the specifics behind use of Omega-3's or if it even has anything to do with what assisted your situation, but I've decided to also start supplementing with Omega-3's. I have noticed something, but I don't yet know what to attribute it to, and won't for a few more weeks, but it's brought a lot of hope! Thank you so much for the information!
11-07-2012, 06:02 PM   #15
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Hi scifiguy,me too I suffer from proctitis and have seton for my fistula and always in tears when I have BM it's horrible and very painful and have been looking for remedies but couldn't found any apart from hot water bottle that calms it down little bit. Keep us updated on how it goes and take care. Simo
11-07-2012, 10:39 PM   #16
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Hi, Destiny. I'm so sorry you have to deal with that, too. This is a brain-dump of my current situation, with everything that's worked for me so far. Sorry for the wall of text (it appears to be my specialty).

If anything else tickles your memories or helps you later on, please share as well.



The very best piece of advice I've received so far was from other members on this forum: use MiraLax powder (Propylene Glycol) or whatever cheapo knock-off brand of it is available at your favorite store/warehouse to soften the BMs. (Additionally if your movements are too soft, taking Prevacid, Prilosec, Zantac, or a knockoff of one of those daily will help after a few days). Also, unless you're using MiraLax, initially make sure you avoid foods that are hard or allow water to be absorbed from it too easily(and thus become hard, like too much bread in one sitting, or beans - the only way I can eat beans anymore (including garbanzo) is when I blend them and dump a small bit of the mixture into a soup for flavoring), and avoid too much food that would hurt if placed on a normal wound, like super-salty foods or highly-acidic food ... or, sadly, nut butters (but I still cheat with regards to that, so there's a little bit of leeway with everything you eat, and how much).

It took two surgeries before the surgeon was able to clear the fistulas properly (the first time, there was still a flap where bile collected), but once everything was under control and the hardening and swelling had lessened just a little bit, the pain was so much easier to deal with than before (still bad, but not stop-everything-and-cry-for-hours bad). So if it's still so bad that you get muscle spasms or pain for a period of time after BM, you should probably ask your surgeon to check for pockets in the area the seton was placed.


Slightly less on-topic, but super-helpful:

I started a regimen of waiting until I was sure I had the last BM of each day, then going home to wipe-down, wash-off, soak in hot water for 15 minutes, wipe-down again, then place an ice-pack on the seton area for 15-20 minutes.

Notes:
#1 The ice pack was the most important part of this. Sometimes if I'm feeling pretty good & clean (which nowadays is more often than not, thankfully), I just place the ice pack on immediately.

#2: Before placing the ice pack, you always want to make sure you don't feel or expect another BM coming, otherwise you'll be more likely to tear something. It's happened to me a few times, but the benefits outweigh the risks.

#3: If I'm feeling particularly awful in the day, I take three 500mg Acetamiophen (Tylenol or knockoff), once in the morning, (and if it's really bad at night, once again at night). But I don't do that too often (and when I do, I alternate days when I take the Acetaminophen), because it's really, really bad for your liver even at 1000mg doses, and here I'm taking 1.5g and weighing 130lb (59kg). At my worst I was 100lb (45kg) - that was in January-March!

#4: Try not to go over 15 minutes in soaking too often - when I started out, I was in pain 24-7, and the only relief I had was when I was soaking in hot, hot water, literally most of the night and/or day but that caused the activity in the fistulas to worsen considerably before they matured and forced me to have them removed.

#5: Using an ice pack in any area for a long period of time is dangerous, so I was told to follow these rules:
Never have the pack on for more than 15-20min at a time, but you can re-apply once every few hours (same thing with hot water soaking). Always have a paper towel wrapped around the ice pack. If you don't follow these rules, you run the possibility of frostbite in that very important area.

Personally, I've often accidentally left an ice pack on all night, and even neglected to wrap the ice pack in a paper towel every now and then, but was fine. Of course, I'm now much more strict about that. The rule of thumb (such a weird phrase, isn't it?) is that everyone has a different threshold, so follow the rules if you want to be safe; no need to risk loss of important body functions! It may not kill you to leave it on for 30 minutes, but just be safe.

#6: I found that crushed ice is better, if you can get it that way from your fridge, but if not, don't worry about it and just use the cubes. I dumped it into a zip-lock baggie, wrapped it with a paper towel, and placed it on the seton, laying on it for 15-20 minutes once or twice a day.

#7. When applying the ice pack, it's a good idea to place a towel underneath in case it leaks. I'm not proud of this, but I find using adult undergarments works far better than gauze or towels at catching everything (a Depends worn backwards but not inside-out works best for me), and you can put the ice pack in there quite easily. (Not to mention you can buy them in bulk at your local warehouse store - otherwise they're a bit expensive in the long haul.)

#8: Try not to use other pain medications besides acetaminophen (primary ingredient of Tylenol and knockoffs), as the other over-the-counter medications can thin the blood, and the really good, powerful, knockout painkillers can slow down your digestion for several days. But if the pain haunts you for a period afterwards, and you really need it gone for a period of time, then naproxen sodium (primary ingredient of Alieve and knockoffs) helps, but if it's really bad, I never hesitated for the prescription strength stuff, but I've not used or needed it in the past 6 months.

Right now I'm experimenting with how often I can juice fruits and veggies before it becomes an issue. Previously, I couldn't juice before, because it hurt too much going down and out, but for whatever reason, I can, now, especially when I eat a little bit of soft bread or other soft solid food beforehand. I think the Azathioprine helped with that the most.
01-06-2013, 07:34 AM   #17
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Thank you so much for your help and sorry for the late reply
04-13-2013, 04:34 AM   #18
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UPDATE: So, it's been roughly a year. In that year, I was able to increase my food intake into the realm of normalcy.

So ... what helped? The biggest help via ingestion has been the Miralax and drinking enough water throughout the day, the biggest help towards stopping the spasms have been surgery & daily ice packs, while Remicade + Azathioprine did the rest by reducing the swelling.

My current regimen:
Breakfast:
B-complex vitamins, amino acids shake powder (mine's Nutrasumma Pea Protein) + vitamin shake powder in blender with soy milk or rice milk, water, & a tablespoon of sunflower seed butter for the natural source of Vitamin E, although the sunflower seed butter sometimes gives stomach aches. I also take 2-3 500mg pills of L-Tyrosine, even though there's already some in the amino acids shake, and 200mg-400mg CoQ10; those two together do a good job of removing/masking my fatigue: the L-Tyrosine handles the mental aspect, and the CoQ10 manages the physical - if I drink a single small cup of coffee afterwards(yes, coffee is bad, I know, I know), I'm the energizer bunny throughout the entire day.

Lunch & Dinner: varies - most often I get a 16-oz freshly-made veggie juice (usually apple+parsley+celery+cucumber), but hey, I CAN EAT SALADS & GRAINS AGAIN! So I sometimes get a salad or a sandwich. I've been experimenting with beans a lot lately - if I take Miralax just before, and drink a lot of water for the next day or so, beans are NOT a problem! (If I don't, they'll still tear up my insides severely, though!) So I can at least eat veggie burritos again!
04-13-2013, 11:52 PM   #19
kel
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Did you ever try any muscle relaxants for your spasms? I was diagnosed with levator spasms about a month ago and the skelaxin I was prescribed has helped tremendously with the pain. I have a seton in and have had 3 different fistulectomy in the past few years - and this is the first time I have been relatively pain free in years.
04-25-2013, 01:50 AM   #20
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We're going to find out tomorrow what the doc thinks of Skelaxin. :-)
04-25-2013, 09:49 AM   #21
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I was going to suggest you try Juicing veggies,but I notice from your post that you are now including it in your diet.I always use carrots as a base and beets are particularly high in nutrients.Too much green juice gives me cramps,but I do try to make the effort.
You are really an inspiration,thank you.
04-25-2013, 11:27 AM   #22
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We're going to find out tomorrow what the doc thinks of Skelaxin. :-)
Good luck! I take 800 mg tabs 3 times a day. I noticed a difference after the second pill on the first day.
04-26-2013, 12:54 AM   #23
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Man, I would love to try the carrots & beets, but I get a nasty stomach ache every time I do. I used to add lime to the celery-parsley-cucumber mix, but that did the same thing.

Right now, I'm playing with awesome crockpot recipies; dump in some water, some veggies, broth, some extras like a bit of salsa, a few spices (and if you're really careful, some beans) on low for 8-10 hours, and you've got a cheap (<$15 total) meal that gives lunch & dinner for an entire week! That's roughly $1.07 per serving! So far, I've not really deviated, other than the fact that I'm playing with fire by adding beans to the mix - however the MiraLax and the 96oz of water in the crockpot stew seem to be doing the job of keeping the beans from tearing the insides apart.

Thanks for the Skelaxin recommendation; the doctor told me about it, and while unfamiliar with its use in this setting, he saw the possible benefit & possible issues and prescribed it for me to try it. I'm very happy he was flexible enough to take this route. We'll find out how it does tonight!
04-26-2013, 03:24 AM   #24
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Also, literally seconds after I take my first dose of Skelaxin, I find out it may not be safe for people with anemia... gah.
04-26-2013, 05:49 PM   #25
kel
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I've been anemic off and on the entire time I've been taking it. What specifically is your concern? And how anemic are you, what's your hemoglobin at?
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