It's Okay to Say No

[@Jbomasterbond]

Hi Laura, great video. I do the whole good patient thing too. I'm quadriplegic as well having a urostomy & colostomy. Knowing your body & about your disease, being your own advocate, & driving your healthcare is essential. Continue to be your own champion!

[@Debbiesdilemmas]

I can't believe how much you remind me of when I was young and was going through my surgeries. You have the same great outlook that I had and the same openness to discuss. It is so great for your emotional healing. Never would I have thought that I would have done so well. On the date of this video I celebrated 28 years of having an ileostomy. I was 22 at the time of my first surgery and never realized it would be permanent. They tried to do the pouch surgery twice but both times I had leakages. My final surgery was to make my ileostomy permanent. I have had a very full life with my ostomy and it has not changed my quality of life except for the fact I don't suffer with the Crohn's disease symptoms like I had before. I'm very glad you have realized to be your own advocate. I too tried to be the best most cooperative patient that I could be. There came a time when I had to learn to speak up for myself and say no when I disagreed with treatment. Just like you I said no to a gastric tube that in the end happened to be a full bag that I was not aware of due to being highly medicated. I just today saw your videos for the first time as I did not realize there were videos out there like yours. They didn't have KZbin in the 80s...lol! I have never been shy to speak of my ostomy or disease and have found it very therapeutic to do so. It is amazing how many people can be educated and are happy to learn what we have been through. You are an amazing young woman and I hope the very best for you in your life. Keep strong and continue to inform the world. Sorry for the long comment!!!❤️

[@lin1038]

Totally agree with you on the 'good patient' theory...as I've practiced it too....glad you stuck to your gut feelings....we know our bodies the best...thanks for sharing your story and for speaking for others who feel the same way...Linda

[@Naturalbrownkandy]

Was looking for some natural hair styles and came across your videos. I just want to say that you are a strong woman and selfless for sharing your story. I'm sure you're helping many. Keep your head up!!

[@klnkat3043]

By the way, I actually ask for an NG tube when I go to the ER. I wait till I'm sure it's not just a temporary blockage. I don't have an ostomy , just massive adhesions and constrictions. When the nausea isn't relieved with all my tricks and I think I can't live another second with this agony (12 hours of backing up usually) I finally go and beg for one. It is all that will relieve that nausea. Zofran and Phenergan have no effect anymore. When I had my first full obstruction (overnight after my partial hysterectomy I formed a very rare "classic filmy adhesion) I couldn't vomit. I spit up bile when it got about 3 inches below my tonsils. They thought it was a reaction to the anesthesia and didn't believe me how awful it was. Finally, the charge nurse came in and saw me banging my head on the floor to try and pass out before I exploded. The pressure was unbelievable. They did the NG tube and instantly got out 1 1/2 gallons before they could even attach to suction (not counting what went on the floor when they changed to the second container). Yeah, my stomach nearly literally exploded! So for me NG tubes are a blessing. However, I told them how much it hurt where it bent in my throat, worse than strep throat, could they please move it or use the other nostril? Oh, no that can't happen. It won't kink. 3 weeks later, it was.

[@BsTheLadynred]

This is so true for anyone who have medical issues. I'm 100% behind you on this.

[@DarkWaterfall]

I think there are many people out there that don't realize that they can say no to treatments. I'm glad you were able to voice your concerns and wishes and that they listened to you!

[@cazach0122]

I'm a new nurse and these videos are incredibly helpful! I emailed your channel link to my school so that they can show your videos in class (the ones we had to watch were outdated and terribly scripted). This is a wonderful thing you are doing and I have SO much respect for you. Keep up the great work! You're beautiful!

[@elpasitotuntun]

Yeah of course it's okay to say no, I'm currently in nursing school and as nurses, we have to advocate the patient's right, so if you say no, then that's definitely okay, we are not going to treat you if you decide not to. It's just against the code of ethics to try to force someone into receiving something that they do not wish. Excellent video Laura.

[@UCandPSC]

Hey Laura! Great video! I am a Physical Therapist in a hospital as well as having been a patient 3x over the past year for removal of my colon to Jpouch activation. I COMPLETELY agree w/ you! YOU know your body, so unless it it a MEDICAL emergency, don't necessarily agree to everything little thing that is suggested/recommended. I think part of the issue is d/t people being so litigious in our society that medical facilities want to cover their bases/behinds.

[@bradbrannon8250]

I watch a few of your videos and I'm glad to see that you are taking it in stride. Wish I could. Anyway I saw the video of you changing you bag system and you mentioned have had a few leaks and irritation and I wanted to tell you that if you use compound tincture of benzoin it will help with both of those, especially the leaking. Also if you use a really wide ace bandage and wrap you abdomen it give a really good secure feeling and muffles noise. Good luck to you

[@01jamcon]

I think in this situation you were wholly correct and entitled to say no to an NG tube, and you're right to bring this up as a topic for other people to consider in their own lives. Although I must say that having watched a few of your videos (which are really inspiring for a medical student btw), you are one of the most educated expert patients about your own condition that I've seen. And though you were correct in this case, maybe other people might not be as aware of the full picture as you

[@jbolinski551]

That flagyl is horrible stuff! I am going to take Erin's advice and make sure it is put in my history. Can't even keep water down while on that stuff! When I first got my ileostomy 11 months ago, your video about changing the wafer was extremely helpful to me.

[@klnkat3043]

Wow, that is so true! Been there, done that. We have to basically grovel and placate to get proper medical attention these days. If we're kind they will be too, right? Wrong. Yes, basically they give up a lot to become a doctor and when they can't fix us immediately, they feel disappointed or even disgusted. Some of them then assume that we are obstructing our recovery when we assert ourselves. But we know EXACTLY how x, y, z feels to us. We have experienced it so many times we'd have to be an idiot not to differentiate those feelings that though similar are quite distinct. They seem to be listening, but they are listening thru a filter of assumption. That it's just withdrawal, not pain, that you can't really have had a 10 pain, etc. Basically that their experience in treating patients trumps your experience with your own body and how that's played out in so many hospitilizations and tough recovery situations. Night nurses and weekend on-call doctors are the worse, right?

[@Picturerazzi]

I always insist during flares that I do not get one of the automatic blood pressure cuffs but a manual one. I've had scars from the auto ones & it causes SO much pain. Some nurses get annoyed but I don't care. I also won't let new Dr'a discount what my longtime Dr's know and treat... I've said no to an "in office" thyroid biopsy without ultrasound or advance warning and the Dr. literally cornered me. So I started yelling for help. I respect health care professionals who respect me.

[@lorddracul8019]

You can prevent blockages, as I said on my previous post, by taking it easy on the veggies, fruits and nuts. I've had a bag for 21 years so I don't remember how a blockage or constipation feels when you go normally through the bottom. All I remember is that it hurt a lot constipated or not. If you have an ostomy, you will have really hard output or no output at all. You might get cramps and if they are really bad ones, you might feel pain even in your lower back...

[@chezzy62]

Assertiveness is an amazing skill...I've had to do this many times...it's very frustrating when you have to disagree with everyone, but we know what's best for our body, more than the medical textbooks. Rock on, and I hope you feel much better soon.

[@alexnorton]

You're not alone about hating the naso-gastric tube. I've been through nearly every procedure that Crohn's disease comes with, and NG is much worse than everything else. Worse than the pain, worse than the discomfort, worse than the surgeries... It is just so invasive and so terrifying... Words can't describe it, and doctors can't understand. Good on you for sticking to your rights!

[@Firemedic361]

Awesome advice, always know what a doctor is doing to you and why they are doing it!

[@fairyclarey11]

I've just been diagnosed. Please can you give me advise on what a blockage feels like and what you should do about it to avoid needing surgery or anything drastic? Can you treat it yourself before it gets worse etc? Do you have a vid on this, or could you do one? Ps. You are inspiring to someone who is new to this scary world of crohns! :)

[@CoolAsDryIce2]

Flagyl made me throw up too! 6MP too...doc wanted me to take MORE of 6MP when I was getting worse but I said no and got better within 12 hours.

[@Marshein1]

I cannot say enough about how great this is, that you are doing this! I have a question: Do you get dehydrated? My grandson (13) has an ostomy now and has a lot of trouble with dehydration.

[@HamHamT]

thank you for sharing this video with us

[@WillGodwin]

Been there done that. I have Crohns. When I still had my full colon, less than a year after I was diagnosed, I went to the hospital once a month for a week for 4 months straight with blockages. The last time they told me we are going to use a g tube I said, "oh no your not, just keep giving me that pain/steroid medicine intravenously, the little moist swabs for my mouth and the TV remote. I got this." Even after my only surgery SO FAR my crohns flares 1-3 times a month or more. Just switched to Tysabri, let's hope that I don't get JCV which causes a brain disease called progressive multifocal leukoencephalopathy. Anyway, go you. We have to be in perfect sync with our bodies to battle these illnesses which means that we have to speak up when we, the patient, doesn't agree with our treatment plan. No one will make my quality of life any where close to what the disease does..... I won't let them :-) ...

[@lorddracul8019]

If you notice you start having problems, my suggestion would be -by my experience- to drink a lot of water. Warm it up a little. Do some walking, get moving. Doesn't have to be very rigorous movement. Massage your abdomen if it's not too painful. If none of that works, next thing would be irrigation, but that's something you do if you know what you're doing. I was taught by a nurse how to do it myself, but hey if I can avoid getting that bad to need the irrigation, I'm a happy. Hope this helps.

[@lorddracul8019]

Agree with you, we as patients have the responsibility of knowing our body and educate ourselves about our conditions. Doctors might know what they are doing, but they are human and make mistakes too. Some as big league assholes, but not all. I've had to say no several times too. Not being a jerk, but saying no and telling them why I disagree with them. Many times the doctor and I end up working it out in an effective way. If the doctor gets too asshole about it, I'd say it's time for a new doc.

[@JDvorak2009]

Laura's a rock star!

[@bradbrannon8250]

I'm a dialysis patient aswell as an ostomy patient. When they took out part of my colon and put the bag on me, I woke up with an ng tube and a catheter. The doctor unnecessarily put a catheter in me and I don't make urine. So be a part of you health care and educate yourself because doctors are human and they do make mistakes

[@michaelramos3616]

Thanks again!

[@happycherries31]

SO true!

[@lorddracul8019]

Ouch, Crohn's sucks! I've had it since age 7 and I'm 34 now. My suggestion is take it easy on the fiber. Some raw veggies will make you constipated, veggie and fruit skins are a pain too. If I eat veggies, I eat them cooked soft; not necessarily mushy or pureed, but soft. Avoid skins as much as you can, in my experience even some apple skin can get me 3 days not pooping and that hurts like hell. Nuts are another culprit, don't over do them.

[@lorddracul8019]

Being a 'good patient' doesn't mean you agree blindly with everything the doctor says. It's being cooperative, educating yourself about your condition, making informed decisions, etc. Sometimes you gotta say 'no' because doctors may have a lot of knowledge on the condition and medicine, but you have the best knowledge of your own body. So, it should be like 2 experts working together instead of one expert calling all the shots.

[@fairyclarey11]

Oh sorry, is it UC you have not crohns? Althought I think blockages relate to both and probably feel the same?

[@lorddracul8019]

NG tubes are so goddamn nasty!!! One of the grossest things I've ever experienced in my life. And quite annoying too.

[@crazycatlady2162]

What's an NG tube?

[@geeg7202]

Nope in the hospital got an advocate for yourself so much

[@lorddracul8019]

Raw vegetables are not good for patients with Crohn's disease and Colitis, it makes us constipated and it can cause blockages so bad that may require surgery. Small amounts of cooked soft veggies is fine, but no raw vegetables and specially no tough skins. The reason is that our intestines are not able to digest them properly. In patients with ileostomies, raw veggies can come out totally undigested no matter how good the person chewed them and that can cause a nasty blockage.

[@lorddracul8019]

Oh heck yeah Flagyl SUCKS!!!! That stuff really messes my stomach up so bad, last time I was on it, seriously, I lost quite a few pounds between barely eating because I was too nauseous and the few times I puked my guts out.

[@nazra7]

I had never had pain with my ulcerative colitis before even though I had massive amounts of blood in my stool, until I started taking prednisone, cortisone, and salumedrol. Those steroids gave me the worst abdominal pain I've ever had in my life and the dumb doctors didn't believe me. Some tried to blackmail me into taking it, others would yell at me if I said no, but some would listen. And ever since January of 2013 when I first started taking prednisone, I've been on massive amounts of pain killers and terrible pain has rendered me completely disabled and bed ridden. I've literally been laying in bed for 3 damn years! And I'm only 27 years old. All because of the steroids and the doctors who wouldn't listen. Maybe I'd still have my colon, and maybe I'd be finished with college now had I never taken any steroids. I need to sue them.

[@nazra7]

Sometimes the doctors can be real jerks. Especially when they try to tell you your pain is solely due to withdrawal from pain medicine when that obviously isn't true. Then, not only are they not treating you properly, now they're trying to tell you that you're a drug abuser... Ugh... I've had some really good doctors during this whole experience, then I've had some really bad ones too.

[@AgentOffice]

You're strong

[@Debbiesdilemmas]

BTW Smokey's the name of my cat...lol!

[@2013Queen]

You can still put out stool and have a blockage

[@servantsofthemessiah720]

Its not okay to say no to the Holy God of Heaven. You are pretty charming im glad your okay .HOW ARE YOU DOING SPIRITUALLY?

[@fairyclarey11]

Oh sorry, is it UC you have not crohns? Althought I think blockages relate to both and probably feel the same?