Meeting the surgeon - Questions to ask??

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mom2panda
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Date Joined Oct 2009
Total Posts : 713
   Posted 8/17/2011 5:55 AM (GMT -6)   
Hi everyone,

This is my first post on this forum. Usually, you will find me over on the UC forum.

I am meeting a surgeon in a couple of weeks to discuss my surgical options. I am out of medical options for my UC as none of the meds work effectively. I am hoping to be able to have the jpouch surgery.

What questions should I ask about? What did you wish you had known or asked at your first consultation?
F/42 • Ontario • UC Dx Sep/09- 50cm (far as flex would go).
- Pred dependent (on pred for 14 months leading up to Remi)
- Remicade Jan 24/11 - up'd to 10mg/kg Apr 14-July 22 - Failed
- May/11 - back on pred
- Aug/11 -Trying antibiotic therapy
- Tried: SCD, VSL, other diets, budesonide enemas, cortifoam • Fecal Transplant
- Can't take 5-ASA/Imuran
- Calcium, Synthroid, Pantaloc, Iron Infusions

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/17/2011 8:34 AM (GMT -6)   
Mom2Panda, welcome. That's a big step.

I see you're on pred, so you'll want to ask about that -- how much will you need to taper to have the surgery. I was on 40 mg going into my consultation, and I needed to get down to 20 mg in two weeks for the surgery -- that was rough, but it worked. Actually, the surgeon would have been OK with me being on more, but since I'd been on it for so long, my gi doc said I had to go down. If you're on pred it will slow the healing and make it more serious if you get an abscess etc.

You'll want to ask about laparoscopic vs open incision. Not all surgeons do the laproscopic, and not everyone is a candidate. The lapro takes longer, but the healing is much easier.

Going for a j pouch, you'll want to know about two surgeries vs three. Will they make the pouch on the first surgery, or just take out your colon?

You'll also want to ask about the prep for the surgery (mine was two enemas the night before and only clear fluids for two days before, but others do it differently).

You'll also want to meet with a stoma nurse to mark a site for the stoma and to learn about that phase of the surgery.

That's what i can think of for now, others can add....

Good luck!
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Scrap Girl
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Date Joined Jan 2007
Total Posts : 653
   Posted 8/17/2011 8:44 AM (GMT -6)   
I would want to know how many of the surgeries he/she had done. Good luck.

suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 8/17/2011 8:58 AM (GMT -6)   
I'm with Scrapgirl on this and I would also ask to speak with several of his surgical patients so you can get a sense of how they are post surgery.

I cannot stress enough that for jpouch surgery you need to consult with a very experienced surgeon. Having this surgery in your home town, through Medicare, or the VA aren't the best options. In most states, you can find a highly qualified surgeon in a metropolitan area. I traveled 2 hours by car to have my surgery and because my surgeon was the best, I have never had to see him again for problems. If you need a recommendation for a good surgeon in your state, go to www.j-pouch.org and post a question in the General Discussion thread. This is a complex surgery and needs an experienced hand.

Sue

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 8/17/2011 8:59 AM (GMT -6)   
I brought a list of questions but never even asked half of them. The most important for me was lapro vs open and how experienced my surgeon was at making j pouches.
Some people have preps, some don't
Some get NG tubes, some have them removed before they wake up
Some get an epidural, some a pain pump (I needed both...)
I guess what I'm saying is a lot depends on the individual so it's hard to be prepared for everything that may come up.
I think you should like your surgeon since you are beginning a long term relationship with them.
Because I hate shots, I was pretty ticked off no one told me that I was going to get anti blood clot shots in my stomach three times a day (after my stomach was already beat up from surgery) but some may not get them at all?!
I don't understand that because I laid around for a year with UC but laying around in a hospital for 6 days (I was walking) and they worry about blood clots? WTH? :) I hate shots....
I thought I'd have to do these breathing exercises but they never made me...
I was pretty worried about the catheter A) causing me urinary problems and B) being painful but it only stung a little when they pulled it out and I didn't have any problems using the bathroom.
Good luck!
DX 2/10 UP. DX 07/10 UC. Pancolitis. tried: Canasa, Asacol, Bentyl, Imodium, Imuran, Prednisone, Flagyl, Cipro, Remicade, Codeine, Tramadol, Xanax, Morphine, Vicodin, Prozac, ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 8/17/2011 9:07 AM (GMT -6)   
trying to keep my head up, I think they give the blood thinning shots to everyone who has surgery. All my roommates were getting them too, no matter what they had. Mine were in the arm, though..... I think once a day, now I can't remember, could have been twice.

Blood clots are a big risk from surgery..... I got one and had to give myself the shots at home, until I got up to a level where I could switch to pills. Not something you want to mess around with. I don't think the risk is mostly from laying around..... I never had the shots when i was in the hospital w/out surgery..... the risk is from the surgery itself.

I did do the breathing exercises, good to do -- I was under 10 hours w/a lapro, and the anesthesia did affect my lungs for a few days.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4549
   Posted 8/17/2011 9:21 AM (GMT -6)   
If you go forward with J pouch surgery you need to have a very skilled surgeon that has doen many, many j pouch surgeries. Make sure you ask him/her how many they have performed and how their patient satisfaction has been. Also how many steps they will do it in and what your average expected recovery time will be. Another important thing to ask is if they will do it laparoscopically or open. I had mine done laparoscopically and it cut down on my recovery time quite a bit. Of course ask what the possible complications could be but don't let that scare you too much! If I dwelled on the what ifs I would probably have chickened out. I am so happy with my surgery results...I have my life back!! Best wishes!
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-Tried diets-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC!!! Very happy with my results of this surgery!

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 8/17/2011 12:57 PM (GMT -6)   
Thanks for all of your responses! There are some great question in here.

I live in the largest city in Canada, and the surgeon is one who has worked under one of the pioneers of J-Pouch surgery for a long time, and the hospital is known for this type of surgery. I don't know how many she has done, but I expect it is a lot. I will ask her though. I also checked her out at rateMDs and she has a GREAT rating. I think she does it laproscopically, but I am not sure. I honestly don't care that much, I just want a good surgery with hopefully no complications. Shorter recovery time would be great, but I could care less about the scarring.

The shots and the breathing exercises sound a bit scary. Blech on the NG tube too.

Just curious about the pain level (I plan to ask this question too), I am a bit of a wimp with pain, and wondering how it compares to a c-section? Any women out there have both?
F/42 • Ontario • UC Dx Sep/09- 50cm (far as flex would go).
- Pred dependent (on pred for 14 months leading up to Remi)
- Remicade Jan 24/11 - up'd to 10mg/kg Apr 14-July 22 - Failed
- May/11 - back on pred
- Aug/11 -Trying antibiotic therapy
- Tried: SCD, VSL, other diets, budesonide enemas, cortifoam • Fecal Transplant
- Can't take 5-ASA/Imuran
- Calcium, Synthroid, Pantaloc, Iron Infusions

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4549
   Posted 8/17/2011 1:08 PM (GMT -6)   
The hospital I was in did an awsome job keeping me comfortable...pain wise. I honestly don't remember the first 3 days after surgery b/c of being on the pain meds. And what I do remember the pain wasn't all that bad. Now that being said, I have a high pain tolerance. Even though mine was done laparscopically I still had a c-section style incision right at my bikini line. Most of the pain that I had was internal.

I did have one complication: I developed a large abcess in my pelvic area and I had to have a drain tube in for 6 weeks. That was not fun but it did get resolved without any further issues. I never had to have the NG tube...thank God!

Sounds like you are in great hands with that surgeon.
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-Tried diets-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC!!! Very happy with my results of this surgery!

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 8/17/2011 1:44 PM (GMT -6)   
most of my pain was from using my stomach muscles, so not constant pain. Pain meds controlled my pain so well I almost felt normal. You may have shoulder pain right after surgery if you get lapro so ask for meds for that if you do! I think my shoulder pain hurt worse than my surgery lol!
thanks for the explaination, blueglass, on the blood clots! I asked for a shot I can get in my arm and they didn't have one???!! I thought it was from laying around, not surgery because they always want to put those things on my legs "to avoid blood clots from laying around" I got the leg things even when I didn't have surgery.
I rip the leg things off... I think I'm a pain in the butt patient! They keep me awake because they squeeze me like once a minute.
My oxygen kept going below 90 too and I couldn't stand having that oxygen tube in my nose so I kept taking it off then the monitor would beep hehehe. I just don't like hospitals. My last stay was a bit fuzzy but my husband was sure to tell me I was a pain in the butt... he said I wouldn't eat the food because I said it was nasty and they wanted me to eat right away so my bowels didn't fall asleep. I don't remember refusing food or the conversation at all. OH! Then they wanted me to take potassium and I couldn't swallow the horse pill so I asked to have them cut it in half. The nurse said they couldn't cut them because they were extended release. I laughed at her and said ER pills would just end up in my bag anyway. She then wanted me to drink liquid potassium NASTY! I ended up dumping it cuz I couldn't drink it. Sigh. I'm still glad all my issues were minor compared to some! The only other thing I had happen was my bikini line incision opened up to a 2 X 2 X 2 inch hole that I had to pack with gauze for two months. Gross but I dealt with it.
DX 2/10 UP. DX 07/10 UC. Pancolitis. tried: Canasa, Asacol, Bentyl, Imodium, Imuran, Prednisone, Flagyl, Cipro, Remicade, Codeine, Tramadol, Xanax, Morphine, Vicodin, Prozac, ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 8/17/2011 1:59 PM (GMT -6)   
Dear Mom2panda,

it sounds like your are with the right surgeon. The current medical attitude toward pain management is that no one s allowed to experience pain. I had my collectomy in April, and they inserted an epidurnal before the operation, I woke up in no pain, I never had pain, I had the epidurmal in my back and the option of a pump if I experienced any pain at all - but I did not. They were reducing the dose daily, which I didn't even know. It is morphine, actually, which I also didn't know, so I was not only not having any pain at all, but also not able to have a negative thought at all. They taper it until you don't need any pain support.
Write down the questions in one place as they occur to you. The doctors won't have time to provide all the information you need, even when they mean very well. I asked what I would see after the operation when I look down at my body. What I saw was much less dramatic than what they told me. I had laproscopy, and the main incision was only 6 centimeters, just above my public hair. I showed it to close friends, because it amazed me.
Now I'm trying to remember what they didn't tell just because surgeons and their assistant surgeons don't have hours for each patient. After surgery, and after they remove the pain-pack from your back, I felt rectal pressure, like I had to go t the bathroom. I thought it was crazy and impossible. But they do leave a littlepart of the rectum, which continues to produce mucuous, and so you may, or probabyl will, have to sit on the toilet and release mucous from your rectum. I couldn't do this until about 11 days after the surgery, There was also bits of old stool. The mucous continues up until the jpouch is connected.
Also, the stoma will start shrinking about week 4, and that's why everyone has bag leakage problems. Leaks cause major stress for everyone but it's a normal phase.
That's prettty much all. Oh right - the shots against the blood clots. I got them in the thight. Just make sure you tell the nurse to do them very carefully, or you could end up with a leg full of black and blue marks.
I'v been completely absorbd by my job since June 1st, so that the only time I have to reflect on what my body has to say is when I write to someone here.
Please feel free to ask any other questions.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/17/2011 2:33 PM (GMT -6)   
One thing to watch out w/the pain meds is when you switch from IV to oral. The oral ones are very hard on some of us. I spent the night after I got home from the hospital up all night throwing up -- it was awful, probably the worst part of the entire surgery experience. I stopped taking narcotics then altogether, and I was fine on just tylenol. It hurt a lot less than I expected (but mine was lapro).

If you do have it lapro, you get these pains in your shoulders afterwards ... they fill you w/gas to do the surgery and then it migrates there. Not awful for me, but really weird.

Trying to keep my head up, I hear you on so many things there..... they should have been able to give you the shots in your thighs if you didn't want them in your belly, although they did just put them in my arm at the hospital (at home, I had to do belly, and I was so skinny then).

The potassium pills are horrible and the drink is too! I've had to have two IV's at the same time in the hospital, because they can't put the IV pred and the IV potassium in the same IV or it will make crystals. My potassium was low a lot....

And the boots.....and the socks... they are so weird. I only had them after surgery, though, but then again, I was pretty mobile on my other hospitalizations. That is one thing to know, mom2panda, the first night it can be really hard to move. I had an epidural that was misplaced a little, and I had to call the nurse for help rolling over.... it was hard to take. The good thing is that my memory of it is pretty fuzzy now.

You really don't want a blood clot in your leg though.... it can move up to your lungs and kill you.... but on second thought, you are right that some of the blood clot issue is from lying around, it's not all from surgery (I thought of the boots as being from lying around, as they stopped making me wear them when I started walking again, but the shots were for the surgery itself)..... not positive now that that's right.

Mom2panda, as soon as you can walk, you'll want to do it as much as possible. It really helps.

I didn't have an oxygen tube after surgery, but I had to blow into this thing to make a ping pong ball go up .... was supposed to do it ten times an hour, I think.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/17/2011 8:14 PM (GMT -6)   
When you go for your stoma marking be sure you wear your normal,everyday clothes. Make sure you stand and sit andlay down. Ask for a bag to wear around. Even if you are going for a jpouch you will still have the bag for a while and placement is very important!
The one thing I really wish I had known, at first your output will be this unnatural shade of green and smell so bad you will want to die:-) plus you will have on a clear bag and have to watch it..but that won't last! Once you start eating it will change.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

WonderTurd
Regular Member


Date Joined May 2011
Total Posts : 129
   Posted 8/17/2011 8:23 PM (GMT -6)   
I just had my permanent ileo done in July and I was up and walking the same day I had the surgery, not far mind you but the next day I was speed racer Stacey around the halls in the wing I was in lol.
One of the things I wanted to knotw was how my absorbtion would be affected by the ileo. I decided not to have the pouch but if I did I would want to know if it still worked pretty much the same as a healthy person's digestive system. Also ask the stoma nurse lots of questions, my ET is great! I asked her all about the sounds, the way it looks, tips on how to make changing your appliance easier. They're a great source of information and they find out all sorts of non conventional things that other patients have tried.
Stacey
Ulcerative Colitis since 2002
Interstitial Cystitis since 2010
Asthma since 2011
July 12 2011 - Proctocolectomy with end Ileo (UC FREE!!!)

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 8/18/2011 3:21 PM (GMT -6)   
Thanks again everyone! So much info here!

Bluegrass - boots & socks?

I was told the same thing about walking after my 2 c-sections, and 2 endometriosis surgeries. My last c-section was a much easier recovery because I got up and walked (not gingerly) as soon as the cathedar came out. My plan is to do the same if/when I have this surgery.

If I go lapro, I guess I just add a 3rd scar to above my pubic bone - no biggie! Too bad they couldn't do a tummy tuck while they are there! :)

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/18/2011 4:03 PM (GMT -6)   
They have you wear these tight high socks and then there are these boot things that inflate, first one leg then the other. It's to keep the blood moving in your legs and prevent clots. The boots feel really weird at first, but I got used to them.... the socks are a bit uncomfortable, but not a big deal relatively speaking.

I really couldn't walk the first day....

Another thing is the JP which is a plastic thing to collect drainage. I think it looks like a hand grenade or one of those bottles of lemon juice that's shaped like a lemon. It's clear, flexible plastic, and for me, the drainage the first few days was red like Hawaiian punch.... it got more pinkish after a few days (pink grapefruit juice color). The nurse had to empty it many times a day. When they took it out, I was surprised at how long the tube inside me was... one thing I wished I'd asked for at first was that they put tegaderm over the gauze after they took out the tube.... I soaked through two johnnies before someone did that.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 8/19/2011 2:52 PM (GMT -6)   
What about exercise? I had to stop about 6 mos ago because my fatigue was overwhelming, and exercise knocked me out for 2 days.

How soon can I go back? What about abdominal exercises? Does the temp stoma cause a problem? What about once you have the pouch?

I used to play soccer 2x a week, and go to Kickboxing. Will I be able to eventually return to these things?
F/42 • Ontario • UC Dx Sep/09- 50cm (far as flex would go).
- Pred dependent (on pred for 14 months leading up to Remi)
- Remicade Jan 24/11 - up'd to 10mg/kg Apr 14-July 22 - Failed
- May/11 - back on pred
- Aug/11 -Trying antibiotic therapy
- Tried: SCD, VSL, other diets, budesonide enemas, cortifoam • Fecal Transplant
- Can't take 5-ASA/Imuran
- Calcium, Synthroid, Pantaloc, Iron Infusions

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 8/19/2011 3:38 PM (GMT -6)   
No abdominal excercise while you have a stoma, becaus you're very vulnerable to a hernia at this time. You can do walking and running, Soccer - sure, but after you've got your energy back, wait a few weeks after the surgery, like 4 weeks at least. I am not sure about kick boxing because I think it involves abdominal mucles.
I was told excercise only when it doesn't involve the abs (that means no bicycle) until at least 6 weeks after the final operation.

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 8/19/2011 4:41 PM (GMT -6)   
Oh, that's disappointing. So, that is the same whether it is permanent or temporary? How does one keep the muscles strong?

No biking either? You wouldn't think that would involve abs so much. I am thinking no to soccer either because of the lateral, and quick changing movements - balance = abs. Never mind taking a ball in the stomach - that require strong abs too.

Ugh...that makes me really sad. I have a hard time staying disciplined with exercise and only do because it is things I love. Sigh. Another reason to HATE this disease.

Hoping for a miracle....

Thanks.
F/42 • Ontario • UC Dx Sep/09- 50cm (far as flex would go).
- Pred dependent (on pred for 14 months leading up to Remi)
- Remicade Jan 24/11 - up'd to 10mg/kg Apr 14-July 22 - Failed
- May/11 - back on pred
- Aug/11 -Trying antibiotic therapy
- Tried: SCD, VSL, other diets, budesonide enemas, cortifoam • Fecal Transplant
- Can't take 5-ASA/Imuran
- Calcium, Synthroid, Pantaloc, Iron Infusions

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/19/2011 6:48 PM (GMT -6)   
You can do things that involve abs after you are fully healed, probably 3 months. I do the insanity cardio abs. situps aren't the best idea but you can still do them. Lots of people bike, and do all kinds of things. if you want to kickbox just pad your stomach and tell the people to not kick right there.
There is nothing you can't do!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 8/20/2011 9:49 AM (GMT -6)   
Thanks, summerstorm. I was really worried about that. Good to know.

I've also read about these "armor" devices that are hard cased to help protect the bag. Would be a good choice for soccer.
F/42 • Ontario • UC Dx Sep/09- 50cm (far as flex would go).
- Pred dependent (on pred for 14 months leading up to Remi)
- Remicade Jan 24/11 - up'd to 10mg/kg Apr 14-July 22 - Failed
- May/11 - back on pred
- Aug/11 -Trying antibiotic therapy
- Tried: SCD, VSL, other diets, budesonide enemas, cortifoam • Fecal Transplant
- Can't take 5-ASA/Imuran
- Calcium, Synthroid, Pantaloc, Iron Infusions

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 8/20/2011 12:15 PM (GMT -6)   
I forgot to give the positive side of things:
What helps keep me fit and energetic is the treadmill and the cross trainer. I'm not sure if treadmill is the right word in English - you are walking, walking fast or running on a conveyer belt. Also the elypsis. When I was in rehab, I got a program from the phsical therapist of isometrics and other exercises that I can do at home (uh, I'm not so disciplined here), but when I do do them they are for toning legs, hips, bottom. (Arms are tricky because of abs.) So you can work out every else but the abs.
Sorry, there is really nothing you can do to keep them fit until after all surgery is over and everything is completely healed and the doctors says ok now you can ride your bicycle and do crunches.
Basically, I feel much better as long as I can keep my sense of strength, endurance and energy.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/20/2011 1:45 PM (GMT -6)   
If you are really that worried about pulling muscles but want to keep your abs toned, just suck in your breath, hold it, then let it out. Someone on here got some really great results doing that.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!
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