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TOTAL COLECTOMY PART 27

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Posted 11/4/2009 7:18 PM (GMT 0)
Jen, Lizzie, Shmuel....how are you all? Rosemary
Posted 11/4/2009 8:04 PM (GMT 0)
yes.. I'm wondering how they are all doing as well! Please check in ladies!

QUESTION.. regarding post op. Clothing.. did you find you could wear regular clothes, 2 piece jammies, or did you find loose clothes and gowns the best?
Posted 11/4/2009 8:22 PM (GMT 0)
Hi all.....

Just checking in...I did not want to bother you all with my depression. My flu after 13 days is getting better, much. It has helped. I have run some errands and visited with some friends. The depression is still there big time and anxiety, but i have only been on my meds for a week. I see my new counselor Nov 11 and my surgeon this Friday. I still have the ugly alien hematoma :) I drank the juice with just a tiny bit, tiny bit of MOM and went 6-7 times all liquid. I still have no appetite. I am down to 100 lbs this am. I am just so sick to my stomach everytime I eat and I think it may be from my meds and the depression. Its almost gotten worse since starting them. My MIL who went through some issues yrs back had the same problema and I am on three meds.

I have not been posting as much becuase I feel like I am just making thinks worse for all of you. Know I love you all and am praying for all of you!!!!! I wish you all the best in the world and free from all this pain and suffering. I pray everyday. Amey, I am so happy you are poopin without laxatives. Thats what I want.....bad. Jenise....gld you got your date. Hodaya....love you so much and you know this. Right now I am just having a hard time finding the right friends for the right support. No one has gone through anything like me and so no one could possible understand. I try not to dwell on the fear, but its so hard with my history. I love you all know that.....I am ok.

Worried about Jen and Schmuel.....hope we hear something soon,

Love and blessings to you all.

Lizzie

Posted 11/4/2009 8:56 PM (GMT 0)

Janie –

 

If I know I am going to be home most of the day, I will drink prune juice with my lunch.  However, since I never know when the juice is going to ‘kick in’ or how many BMs I am going to have once I start to ‘go’, I will usually drink it in the evening. It’s a bummer that I cannot go to late night movies or go with my hubby to couples game night activities b/c I need to be home at night and I need to be near a toilet.  The juice takes about 2-3 hours to produce a BM and it works great for me.  I normally dilute the juice in water (half water/half juice). I find that it works just as well with less calories and it saves money too.

 

Jenise -

 

I know having a Dec. surgery date is tough, but what a way to start 2010! A new lifestyle and a new year! In the hospital, I always brought 2pc. night wear – shorts and top to sleep in.  After my bag, I was a little distended from the surgery but after the swelling went down, I could wear all of my same clothes. 

 

Tracy –

 

Your bowel habits are concerning. It scares me that you are constipated all week and then clean out on the weekends. That has to be very uncomfortable. Will you do me a favor?  If there is a CVS in your area, will you go into the store and buy their CVS brand $.99 gummy bears?  These bears have a laxative sugar in them that make me ‘go’ even on my most constipated days.  If it were healthy and practical, I would have kept my bag and eaten 2 bags of gummy bears every day.  Will you eat these for me one day and let me know how they work for you?  I know you already know this, but you need to be able to have BMs during the week.  What if you ate some dried apricots or prunes with your lunch? My heart goes out to you.  I hope you find some resolution to your situation.

 

 

Lizzy -

I am glad you were able to get out today and see people.  Do not worry about posting your feelings.  You need to post, you need to vent. That is what this forum is all about.  Believe me, I have been there.  After every surgery, I thought I was going to be cured…laxative free!! But that was not the case.  Every surgery brought more complications and side effects.  It was depressing. I remember going to my husband in tears and asking him if I was cursed….and I was serious. I know God loves but I felt that he had forgotten about me somehow or that I was being punished for not being righteous enough.  Every morning I was afraid to get out of bed or leave my home without prayer b/c I thought God would not help me or love me if I didn’t pray to him constantly.  It took years for me to learn that God was not punishing me. This is just my life.  Some people are born without sight, others with retardation; my trial is that I have paralysis of my gut.  That is just the way life is sometimes. So please don’t feel bad that you have tough days and wanting to share that with us.  We all think about you and care about your feelings.  You are always in my thoughts and hope things get better for you.

 

Posted 11/4/2009 10:16 PM (GMT 0)
Lizzie,

Glad you posted. Did you notice we all missed you? SO the message is post anyway, even if you are down. That's what we're here for. You don't realize it but you sounded a bit better, just the tone of your post. You are pooping and flu is improving. Gotta find the cause of that stomach upset, but could be med related. Glad your appointments are upcoming. Keep going girl. I have a good feeling for you and I am an intuitive type.

Jen, hope you're OK and just resting. Shmuel, post if you can we're concerned. Rosemary
Posted 11/5/2009 12:17 AM (GMT 0)
Amey, are they sugar free gummy bears? I will try them, but, to be honest I can drink a gallon of prune juice and still be constipated. I have tried eating prunes too...NO LUCK! Even medication that has a side effect of diarrhea never works for me...they too make me more constipated. I am just trying to figure out a way to stay off the toilet! What I do now is take 1 dose of miralax daily, then poop maybe a teaspoon of poop daily. Then over the weekend, I take tons of miralax....but this had started to not work as well either...so, I have added senokot. Still can hardly go! But this is not due to hard stool, it just won't come down into the rectum. It is soft stool, but I CAN'T GET IT OUT! I even have issues with the miralax just making watery brown liquid, but I still have tons of poop in the colon. It literally just bypasses the poop. Then, every 2 months or so, I will get real impacted and it takes double time to get the thick nasty dark poop out. My rectum is my main issue. Something is preventing the poop from getting into the rectum. What?????? I wish somebody knEW! My doctor says it is the anismis, but I have never talked to anyone, except Fighter, that has my exact problem and even she only has the outlet problem, not colonic inertia like I do. What do you think? I am getting to my whits end and almost feel like telling the doctor remove the rectum and just hook me up to a bag TODAY! I have been in this bathroom for 1 1/2 hours tonight for a tiny amount of poop. UGH And my stomach is nice and round like a 5 month pregnant woman. I know I did pass the small bowel follow through. It took 1 and 1/2 hours to get to the top of my colon. YAY That is good news. I am sorry to hear about your mom. It really scared me because when I went to the doctor Monday with a bladder infection, she said my urine was so concentrated that the stick could not even tell how concentrated because it was on the last dot of the strip. She said I need to drink water until it is coming out of my ears. I was dehydrated. And I had blood and bacteria in my urine. Plus I am leaking urine again!

Lizzie, please post away. You see my posts are all about pooping and how horrible it is. This is the only place I can be totally honest and feel like others understand. You need support and we are all willing to give it. LOL Keep going out and seeing others. You should start to feel better and better.

Hope everyone else is feeling well. Tracy
Posted 11/5/2009 12:39 AM (GMT 0)
Tracy - yes they are sugar-free bears. For years nothing worked for me except Sorbitol. This is a natural sugar that is non-habit forming. It is not a perscription; however, pharmacies do not carry it. You have to tell them to order it. Soritol is a liquid sugar that pulls water into the intestines. I would drink lots of water with it and it would make me go. It costs about $6 a bottle and I was taking 4-5 TBS a day. I took this sugar for 9 years. This is the first time I am off the stuff. I hope this can help you.
Posted 11/5/2009 12:46 AM (GMT 0)
Hi all,

Sorry I have not posted. I got home from the hospital on Monday. I am extremely weak. I am having great difficulty eating, no appetite, and feel full as soon as I start eating. I am so weak I do not get out of bed for much except to run to bathroon. Which I am doing very very frequently. I am dropping weight bad and look emaciated. If things continue like they are I will weigh 100 pounds by the weekend. I am doing my best to drink gatorade throughout the day and I try to drink at least one ensure. It is hard. I am thinking about calling the surgeon but don't know what he will do. My husband is extremely worried and all my family and friends just keep trying to shove food at me. It's so hard to eat when you feel sick and have no appetite. Hopefully this will all get better soon. I have to realize that I did just have the operation 10 days ago. I will try to check in again sooner. I just have not been on the computer since getting home. I feel so crappy I don't even have the energy to surf the net. Now that is sad!

Sorry to hear that so many of you are having problems also. At least we have a place to talk about it with people who understand.

Jen
Posted 11/5/2009 12:48 AM (GMT 0)
Tracy, I know I've said it before... but in some ways we are the same. my poo is soft.. I just can't get it out! Have you ever had the barium enema? I wonder if it has something to do with the MESH!?? Even going back with my sitz marker test.. I was on MiraLax, concerned that my test results would not be accurate (and maybe they weren't 100%) because I did have a BM 3 days of the 5!! But the report clearly said that my colon had "excessive" stool - all 5 days (and only 3 markers gone). I just wonder if it has anything to do with the mesh.

Lizzie, I agree with Rosemary - with both things.. KEEP POSTING, don't be afraid of making us feel one way or another, we do want to be here for you. I love this whole group - I'd be lost without you! 2nd thing - she is right, your post does sound better - even if your still down. Keep trying to do some fun things, because it may be helping.

We never did hear a word from Shmuel since she was going to the hospital.. would really like to hear from her as well as Jen.

Amey, what a great way to look at it - a new year and a much improved me.. although, I rather be spending my medical bills and surgery time getting a nip and a tuck!! LOL But, hopefully, I'll be better then ever.
Posted 11/5/2009 12:51 AM (GMT 0)
Hi Jen,

Thanks for the update. It's great you are going to the bathroom! but the rest sounds pretty rough. Here's hoping you gain strength and feel better. Best wishes, Rosemary
Posted 11/5/2009 1:00 PM (GMT 0)
Jen, we must have been posting at the same time!! So glad for the update, but sorry your so weak. Keep trying to get the ensure down... and a little food.. along with resting and I think that will help you gain strength.

I'm hoping that I will feel well enough to have Christmas at my family's home. I wasn't thinking about the bathroom issue... I may not be ready 15 days post-op.
Posted 11/5/2009 5:42 PM (GMT 0)
Jen, i'm glad you're home! being weak and having no appetite is absolutely normal at this stage, but soon enough you'll gain your strength and appetite back. i was also extremely weak and had no appetite at that stage post op, but i feel 1000% back to my self and i'm back to my normal weight too, which i thought will never happen. take your time to rest and heal. it was after 6 weeks for me till i felt completely like myself again. don't worry. glad you're going to the b/r.. do you feel you empty enough? is it a lot at one time? anyway, it's a great feeling isn't it? after all that was the whole point of surgery :) take your time and post when you feel you can. Lizzie, don't ever feel like you're bothering us!! you're going through a very rough time right now, and the way you feel is totally understandable! i'm hoping better days are ahead of you soon. and just so you know, you ARE an amazing persom, you know how to be a good friend, how to support when needed and how to help others feel good.. and we all love you for that!
Posted 11/5/2009 6:35 PM (GMT 0)
Thanks everyone for all your support, sometimes this is the only place I feel like I get it in the right way....more understanding and not just "its all in your head". My flu I think is on its way out for sure.....thankd God. I am actually oing to go to a friends wedding reception this Friday (they were married in Vegas earlier this yr). It will be my first real outting. I checking in with my work yesterday and they want me to take my full 12 weeks. Taking care of cancer pt's itis not fair for be to be consumed with my own issues, they need me for my support and right now the stage I am in I am not there yet. So I think this would be the end of December if my surgeon permits so I will find out tomorrow.

I am not sure if I ever told you all I have a rectocele, they said its small and should not cuase any issues, but what I have noticed is I almost have to manually digitally stimulate the area for the poo to come out at times. Is this what a rectolcele is like??? I never thought of it. Also, my anastamosis was dormant for 6 mo while I had my ileo and do you think it could be narrowed???? I go with MOM, but I would rather not take anything and if I eat anything solid I feel sick. I still have no appetite. Its 130 pm and I have not eaten yet. I feel ok on soft foods, but even with those I have to use a tiny bit of MOM. Remember before I was using a whole bottle with no relief. I am ok with this, if this will keep working, but I am afraid that my body will become more dependent on it and not function on its own. I still get urges to go and when I try its like just gas and nothing else.

Jen, So good to hear from you.....you are feeling just as you should where you are but if you can get three cans of ensure down then that would help your strength. You are 5'6 and 100 lbs is getting a little scary for be that your so malnourished. The appetite will come back, but it takes time. when I got so low after mine they were going to put me on at home tpn and lipids and maybe that is something you may need if this continues. Sorry nurse in me talking again.

Hodaya- Thanks for your kind words. I try and be as helpful on here as I can, but lately I feel I am not giving enough support and just neeeding it. Your so sweet and I love you.

Tracy- I am worried about you and still think you cannot wait to have the surgery you need. I know it fits better into your plan, but honey you are getting sicker and sicker just like I was and I was in the worst shape ever for my ileo. I am praying for you.....I hope maybe you will think about moving it up.

Amey- Thanks for moving up my post and for being a constant support. Its so nice to have you back. I cannot believe you ran 3 miles!!! I have no energy at all. I want to get back into it, but I just feel so tired and weak and I am sure that is the depression. You have always been a constant wealth of knowledge and I am so happy things are going the way they are for you.

Jenise and Rosemary- Thank you both too for you constant support. Jenise I know your going through your own issues and for you to make a comment to me means the world. You all are like a family. Rosemary I hope your intuition is correct.....I need that positivity right now. I know it takes time for the new plumbing and your words of encouragement help more than you will ever know. I think you started taking your celexa? How is that going????

Love you all....

Lizzie

Posted 11/5/2009 9:27 PM (GMT 0)
Hi Lizzie, Yeah the Celexa is good. The depression is still there but it's not as bothersome. Sort of puts stuff to the back of your mind. Not a bad way to be. Rosemary Good LUck, glad you're better and getting out some.
Posted 11/6/2009 12:39 AM (GMT 0)
I am feeling a bit stronger today.  I drank two ensure's today and a neighbor brought some great food to the house.  Chicken pie, green beans, corn, slaw, sweet potatoes, and biscuits. Also peanut butter cookies and a chocolate pound cake shocked   So I did my best and ate a little chicken pie, some green beans, and a little slaw.  It tasted good because I actually felt like eating but as soon as it started processing....not so good. It really hurt my insides, and I had a lot of cramping.  I guess this is normal at this stage. 

Hodaya you asked about me going to the bathroom.  Well I go at least 10-12 times a day.  It is not a whole lot when I go but I usually feel emptied out.  I don't feel like I am retaining any.    It is nice to actually be able to go to the bathroom.  When I have finished eating for the day and that food has made its way out I feel good.  Its nice not to feel bloated.  Only issue now is not cramping while eating or cramping within 15 minutes of eating.  Its not cramping like I need to use the bathroom just cramping(pain) cry   

I did try to do a little housekeeping today because it was making me crazy.  Well I swept the kitchen and picked up a little and was exhausted.  I mean totally winded sad    I am not used to this.  It is driving me crazy not to be active at all.  I am also bored to death.

I just need to be patient and take the time to heal :-)   

 

Posted 11/6/2009 1:06 AM (GMT 0)
Jen,

Such good news about successful bowel moves:-) Good for you. The cramping after you eat is leftover ileus triggered by solids (too much). I know this from experience. Just take it slower and chew, chew, chew; less is more at this point. Sort of savor every bite. Relax watch TV, walk a bit about the house. Let other sweep and so on. You are on your way to what sounds like a great result. Give yourself time and space. So glad for you. Rosemary
Posted 11/6/2009 1:27 AM (GMT 0)
Jen - You're awesome! For me, the cramping comes and goes depending on what I eat. I used to have it no matter what I ate but now it only hurts when I eat foods that stimuate my GI system. I am so glad to hear that you are doing so well. Being bored was an issue for me as well. Can you walk? I remember that it took me 45 minutes just to walk 10 blocks at 2 weeks post surgery. It made me feel somewhat normal to be out in the fresh air and not stuck at home watching mindless shows on the TV. Just be very careful..you don't want to do anything that may cause you to stress your gut..no lifting or hard house work. Give yourself permission to heal. As women are very hard on ourselves. We rarely get to be on the receiving end of care...normally, we are the one giving all of the care. Remember, housework will always be there...naps and recovery wont.

Take care.
Amey
Posted 11/6/2009 2:16 AM (GMT 0)
Hey, Im finally starting to feel better. I went back to work today after taking the beginning of the week off. I still sound like crap but if I dont go to work my kids are going to end up for adoption!! LOL. I am not a stay at home mom by any means!

Jen, it sounds like you are doing well. You will get there. Your weight will come up slowly as your appetite gets better. I know what you mean about the housework. Nobody cleans like you do. Even though your husband may try, its just not the same. I just had to block it out and take my pain meds so I would crash all day and not dwell on it.

Amey, everytime I read your posts I feel better. You have a lot of faith. That is really important when you are going through this. I have lost my faith over the years, but am slowly regaining it. And I really appreciate your thoughts.

Lizzie, you really are sounding better!! You are doing great. And like the others said do not feel bad at all for being down. We all get in those slumps and thats why we are all here to pick each other up.

Hope you all are doing great and staying healthy. Appreciate everyones posts! Love you all
Posted 11/6/2009 10:28 AM (GMT 0)
Jen, sounds like bms are o.k and i'm so happy for you!! i'm sorry eating causing you such pain.. when i started eating it took me an hour to finish a very small meal, lol i chewed so much and waited a while till my next bite... boy that was a chore. but then after about 1-2 weeks i started to eat faster, i still try to eat slow and chew my food well enough, but now it doesn't last for an hour lol.. so it's just your system still adjusting and it'll settle soon. just try to eat VERY SLOWLY! and also drink little sips and not big ones. pls don't rush anything and take your time to heal. i know all about the boredom, it was awful for me too!! hang in there just a little longer, just few more weeks till you're healed enough. walking is great, so if you can, try to walk abit everyday. you'll be great, you'll gradually gain your strength and weight back and i hope the cramping gets better soon. we're all here for you! Marisa, glad you feel better and are back to work..... now i'm with the flu... UGH. hope everyone else doing well!
Posted 11/6/2009 1:25 PM (GMT 0)
Jen, thanks for your update! Glad you were a able to get a little food down, I'm sure your stomach is NOt happy with it. Mind you - this happen to me with my surgery 7 months ago - and I didn't have anything done to my bowels! Eating made my stomach mad as heck - and oh.. the sounds it would make!! It took a long while before the cramping and sounds went away, but eventually they did.

Marisa, so glad your feeling better! How is your mom doing? Gosh, it wasn't until I had children that I totally understood WHY my mother sang and was soooo happy the first day back to school!! LOL IPoor mother - she was a stay at home mom with SEVEN (7) kids!! LOL.. no wonder why she loved school!

Amey, can I ask how old you are? You're amazing me with the ability to RUN 3 miles.. when you are just 5-6 weeks post op! I really have been working out 7 days a week for the past few months, and feel I'm pretty fit for 48.. but I can only actually run 1 mile... and the I walk another 1-1.5 miles.

Hodaya, oh no.. you're getting the flu too! Gosh, everyone is sick, hope it turns out to be very mild, and your feeling well soon. I think you are making great progress.. but don't leave us!

Lizzie, it's funny how much we really bond to each other online - total strangers, miles and even countries apart! I can tell you though, you all have been the biggest support to me. NEVER in the years (decades) of pooing troubles could I/would I ever talk to anyone! I had trouble just telling my doctors, yet - here.. I can share and never feel funny. We're here for you.. to vent, cry or whatever - it all falls under the category of "support"! I know you still feel down.. but really, your posts are reflecting that you're moving forward some. Good luck at the doctors today.

Rosemary, regarding the ileus .. do you know what makes you prone to it, and if it had it before - are the chances higher to have it again? After my last surgery - they pushed me out the door before I passed gas and my bowels only made 1 faint sound. I went home on day 5 and ileus came. I never did vomit, but nothing was working.. my mom & sister -in law were/is a nurse for a GI group - and knew I had ileus. I made a call to the oncall doctor - on a weekend night.. he never called back! Anyway - my bowels did happen to wake up that very night.. and I was at least over that hump.

Anyway.. I started to go back and read some old posts from the previous total colectomy parts. So many (most) no longer post here, so I have to think they are doing well. Following some, they report great happiness in the surgery.. and reports on google report a high rate of success. I hope that will be the case with all of us.. and I hope that those of you having issues.. it will be just short term.

I've been busy Christmas shopping! I already have a lot done, and should be finished in no time! I don't think I ever started this early... I'll wrap them up and hide them, and then I won't even have to think or worry about it. I know the biggest thing about having the surgery is not having the house clean the way I like! Isn't that silly.. I shouldn't care, and I'm just going to have to push my concern away. Hubby will have to contend with the terrible mess of putting the Christmas stuff away.. that is a nice bonus for having surgery during the holiday! LOL
Posted 11/6/2009 1:51 PM (GMT 0)
thanks Jenise, i think you're absolutely sweet! i love you guys, we share SO much in comon.. i don't think i can leave this site ever, i'm addicted lol!
Posted 11/6/2009 5:35 PM (GMT 0)
Hi Jenise,

Prior to my small bowel adhesion lysis I had been unable to eat for 7 months because I would have small bowel obstructions from the loops of small bowel that were stuck in 3 inches of cement like adhesions. Sooooo, when the ileostomy doc freed the loops of small intestine, elevated them out of the deep pelvis and made the ileostomy stoma, I was structurally ready to eat, but systemically I had not eaten for so long. The trauma of the surgery and not having eaten for 7 months was an unintentional set up for ileus.

I did start to pass gas and effluent into the bag only 24 hours after my ileostomy surgery. I felt great. They started me on ice chips, then clears. 3rd day I was on stuff like yogurt and puddings and was OK. I assumed I'd the go into scrambled eggs and other gushy foods. BUT all of a sudden on day 4 they put me on chicken, macaronni and cheese, (full house diet.) It was sooooo much fun to eat real food, that I ate with gusto and joy. The 5h day I awoke with no hunger but ate breakfast anyway and was discharged. 6 hours later I was readmitted with severe ileus. I was then in the hospital for 3 weeks taking one step forward and 2 steps back. Had IV's and nothing by mouth. Each time they'd introduce food I'd slide back into ileus. Then I had an NG tube for 5 days. That seemed to cure it. BUt I was very leery of eating. I must have eaten only sherbert for a month after being discharged the second time before I dared get back to real food.

But mine was a ridiculously long time without food before I got this surgery that saved my life. (Because damage was done by another doc, other docs hesitated to get into it. I was going to die if one hadn't.) Most people are not in that situation and are able to eat prior to their surgeries. So my experience is the exception rather than the rule. You should not have the experience I did. Rosemary
Posted 11/6/2009 8:42 PM (GMT 0)
Hi my family....

Just got back form the doctor and he said I need to take it VERY slow with solids that my new plumbing just isnt ready yet and thats why i keep feeling sick. I lost 8 lbs from my last visit to his office, but still ok. I am going to stick to soft, low residue and I have to go back to biofeedback therapy to see what is going on with my anismus if its tightened again or not. "he said you dont want another stoma do you" and of course I said no, so for now its my soft food, MOM, PT, and fleet enemas as needed. He said my Hematoma will go away with time. I brough him a big cake and I made my favorite nurse an embroidered blanket that syas "Every nurse gives you hop, and angel with an stethoscope"....she loved it, but they all said i need meat on my bones, but to take it very slow.

Still feeling down, had a panic attack last night, but feel a bit better after seeing my fav nurse and my fav surgeon. I think it will be good to paint the town tonight and get out and see friends I have not seen in a while. I love you all so much and truly you ar elike family to me, although complete strangers I know more of you than many. I cherish this site and its is what heals me. Pray the laxatives in small doses keep working and for no stoma in the future. It will always be in my head, but for now I am trying to just focus on today.

Love to you all.

Lizzie

Posted 11/6/2009 8:54 PM (GMT 0)
Lizzie,

I've been away for a few days, but just caught up on your posts. I'm glad your appt. went well, and just do whatever it takes to make you feel better! One thing though, have you tried miralax? I've been taking it this week, and (knock on wood) it's been helping me alot, and is much better for me than MOM or prune juice. It NEVER worked before surgery, but so far, it's been working; it took a couple days, but I take it twice a day and it's helped to keep things moving and I haven't had that horrible rectal pressure. Just a thought!

Hope everyone else is doing well....will check in this weekend!
Hugs to everyone, this truly is a wonderful place, isn't it??

Janie
Posted 11/6/2009 11:59 PM (GMT 0)
Lizzie,

Give the Miralax at shot. I found it best taken late at night on an empty stomach then went in the a.m. This is prior to all my disaster surgery, but in my natural state it worked fine WHEN I had to take something, usually I did not. Glad your visit was good. Just go slow on that eating. Have some Boost it's loaded with calories. Rosemary
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