Be Careful when being treated at Hospital Emergency Rooms!!!!!

[Lilly]

I have not been on the site for almost 2 weeks now. I will tell you why. Because I have been in the hospital. I take strong pain meds for my sinuses, since they are no longer there and take special care of them, and glass tubes in the corners of my eyes, etc. Causes extreme pain in my face. Sounds weird, even Doctors don't understand until they see my facial X-rays. The BAD thing about these meds are CONSTIPATION!! I have been fighting it for years. Well it finally happened.....I got impacted. about a foot up from my colon/anus. They took xrays, and saw exactly where it was, so 2 girls, technitions I suppose, put me in a room and mixed up some liquid, and did the enema. Well IMMEDIATELY I had to GO!!!! They told me to hold it a little longer, then let the fluid out. Then I ran to the bathroom and I was fixed!!! I thanked them and got dressed. Then I had to go again! Yay! getting it all out!!!!! I went back to where my Mom was waiting, and the ER DR said my Potassium was too high for them to send me home, Probably caused from the laxatives, and enemas I had tried at home before coming to ER. So they were going to keep me overnite. Then I had to "GO" again. So I ran to the bathroom, and something did not feel right. I felt back there And I thought my colon had prolapsed, and was falling out of me! Plus, a bunch of BLOOD wan in the toilet!!! I was terrified! I ran and told Mom, she got the RN. As I was waiting for a room, I had to "go" 2 more times, I was was still expelling from my impaction, but there was still a lot of blood, and my colon was now contracting like a muscle spasm in my rectum. It was more pain that I had in childbirth! Wnen they got IV's going and helped my pain a little, I went to a room. Ct scan showed EXACTLY where impaction was. Then I had a colonscopy 3rd day in hosp. It showed that my colon had been burned and looked black and gray, and had an open ulcer, and the sides of the colon were thickened. But It was only like that from where the enema was, above that was fine! The Hospital Dr that did my colonscopy was MAD!!! He wanted to know what they used in the enema. Not sure what all was in it, but they used Peroxide. He said that they NEVER should have used that on me! He actually came to my room and told me he honestly felt the problem occurred when they did the enema. But they did not know I had Wegeners. Well, Me and Mom nearly fell out of our chair/bed.....I ALWAYS bring a copy of my wegeners information, with a backgrouned of the dz. and a copy of all of my surgeries, etc... Things like this have happened before, where Drs, or Nurses that have not heard of the dz just kindof ignore it for some reason! Peroxide should NEVER be used as an enema when you have Vasculitis disease!!!! So I was in the hospital for six days, writhing in pain, since my long term use of pain meds make me kindof immune to the regular doses of pain meds given to a person my size. The doctor that did my colonscopy said he had to give me enough pain meds to put me out for the procedure, that would normally put 2 people out. I have been staying with my parents since I left the hospital on April 19. My spasms have stopped pretty much, just feels like menstrual pain. No more bleeding. Im gonna try to go back to work tomorrow. Things seem to be healing, and no fever. So God is good! I really wanted to share this, because people do not understand Wegeners, and how sensitive we are to some things. If the hospital staff had taken a closer look at my admission papers, and my disease, they would have chosen a different way to treat my impaction! My hospital stay was a nightmare. It was the most humilitating,(I had to wear an adult diaper the whole time!) painful, fearful (I was scared I would lose part of my colon). It took 5 doctors of different specialties to diagnose what had happened to my colon. They had never seen something like this before! So I say all this to tell ALL MY WEGGIE FRIENDS...... BEWARE of people who do not know your disease! Explain it is a VASCULAR DZ and NEVER EVER let them use peroxide in an enema!!!!!! I hope I helped at least ONE person form the nightmare I went through. Love and happiness to all!!

[Alysia]

oh. no. poor Lilly :hug1:
what a nightmare :crying: :w00t:
thanks for sharing the info and for warning us. we need to always ask if any treatment is allowed to weggies.
thanks God you overcame this. you are a strong lady, no doubt :hug2:
about handling constipation: there are things that you can eat which can help you with it: tomatos, olive oil, dried plums, oats. you should also drink a lot of water.
I have a joke about constipation, but I will write it only if you will allow me to.... I don't feel yet that it is time for jokes....

[Jaypfei]

Oh my gosh Lily

I'm so sorry that with everything you've been through, you had to once again deal with people that take an oath to do no harm, yet do. I hope you are feeling better and have a fast recovery. Thank you for giving us a heads up on Peroxide enemas.

[annekat]

Oh, Lilly, I'm sorry you had to go through this awful experience! I don't they should charge you or your insurance for the extra days as a result of their screw up. But I don't suppose that is how it works. Anyway, I'm sorry for your pain and suffering after all you have already been through, and thanks for the heads up on this!

[jvilner]

Wow Lilly sorry you went thru this. It's awful! I also suffer from constipation and had similar situation. I take miralax to keep things under control but did find myself impacted after a wks illness and not being able to take miralax. Was in er and drank something awful. After what I call the most horrible experience of my life (up all night running to bathroom) and a days rest I was back to normal. Thanks for the info cause this can rwly happen.

Does anyone know anything else we can't tak?. I know ibuprofen is no good.

[mishb]

Oh my goodness Lilly, you poor thing. :crying:

I'm glad everything is settling down now and that you even feel like you can go back to work :thumbsup:

Thankyou for the heads up on peroxide........I have never heard of that. I wonder what other joys there are that we just don't know about.

[windchime]

Wow Lilly sorry you had to go through this nightmare. :w00t: I'm glad you were able to make a full recovery, but what a horrible experience. :crying: Hugs to you and hopefully stay out of ER's. :hug2:

[Debbie C]

Lily,I feel so bad for you and all you have been thru with this nasty disease. I'm glad I read this because I am feeling the same way I thought about going to the er to get a scan to see if there is a blockage. I know before they gave me this thing they call a soap sud enama,I don't know what is in it but it cleans you out in a hurry. That must have been so scary for you, you should sue them for neglagence !!! So glad you are better now:hug1:

[godgirl]

Lily, that's HORRIBLE!

One piece of advice for you - if you are billed for a portion of this hospital stay, get in contact with the patient advocate at the hospital. I completely agree with Anne. This should not be billed to your insurance, and at the very least, you should not be responsible for any patient portion. The hospital should have a patient advocate to help you with this. There should have been an incident report filed as well.
(can you tell I work in medical billing? :) )

[Debbie C]

Alysia, I think it would be alright to tell the joke... we all need a laugh.:biggrin1:

[Alysia]

Wow Lilly sorry you went thru this. It's awful! I also suffer from constipation and had similar situation. I take miralax to keep things under control but did find myself impacted after a wks illness and not being able to take miralax. Was in er and drank something awful. After what I call the most horrible experience of my life (up all night running to bathroom) and a days rest I was back to normal. Thanks for the info cause this can rwly happen.

Does anyone know anything else we can't tak?. I know ibuprofen is no good.

I have the opposite problem, of diarhea, because of my colon involvment, so I can tell you to eat all the things that I am not allowed to: fresh veggies and fruits with the peeling, foods with fibers.
do some sport and drink a lot. eat only small amounts.

[Alysia]

Alysia, I think it would be alright to tell the joke... we all need a laugh.:biggrin1:

ok, then, the Joke, not very funny, and a bit gross....
Before I tell it, I know that the smart software of Andrew will change the word **** to **** you see, it just did it, so I will write it sh-it. (sorry, I warned you it is a gross joke)
here it comes:
A chief had constipation. He sent his men to the doc to bring him med. They came to the doc and told him: "big chief, no sh-it".
The doc gave them the med, they went back to the chief, and he took it.
Nothing was out.
A week later, the chief sent his men again to the doc. They told the doc: "big chief, no sh-it".
The doc gave them the med. They were back to the chief, he took it.
Still, nothing was out.
So a week later they went again to the doc, and again: "big chief, no sh-it". Again they got the med. Again the chief took it.
A week after, the chief's men came to the doc. The poor doc was helpless. He didn't know what else he can do for them…. The look on their faces was ominous…
But then they said: "Big sh-it, no chief"…..

[Lilly]

Thank you Alysia, but the battle is not over yet. I was hoping to go back to wk today, but waiting for Dr to call back, as I have upper abd bloating. My sister that I work part/time with, is very worried about this. I have never ever had any internal involvement from wegeners. Just sinus, throat, lungs. So this enema was a big scare for me, because it caused damage to Internal part of me, and I want it to heal. Now I am having some bloating in my upper belly, My sis noticed last nite when she visited me. I had noticed it too. But I kindof ignored it thinking it was just gas. But my tummy hurt to the touch too. (I am keeping a diary of meds taken, bowel movements, what I eat, etc.) I eat very well, only fresh fruits, veggies, cereals, raisins, salads, olive oil dressings, dates, NOTHING like greasy fast food. I drink water like crazy, always have! So another reason I KNOW this prob was caused by enema in ER. Feel free to joke about anything! Even issues I am going through! I LOVE jokes and do not take offense to anything! I am the type to always laugh at myself!! Laughing is the best medicine! I am concerned this internal colon problem will not heal, or cause other problems internally......Praying a lot, and I am going online to see what I can find about what concerns are there for internal organ problems or intestinal problems Wegerners could cause, just so I am aware. Thank you for your concern. I don't want ANYONE to go through what I went through! Ill tell you something funny that I was laughing at while I was in so much pain I was gripping onto the sides of the bed........My WONDERFUL MOTHER was there 24-7! And I had just gone to the bathroom and it was bloody and caused severe cramping, I was in so much pain I could only lay on the bed and cry. My Mother Had an Adult Diaper (yes, that's all I could wear, Im telling you, it was humiliating!) ready for me, so I got on the bed, on the diaper, and mom was putting it on me, and I was thrashing around in pain, crying, etc. And she got it on, covered me up, and I just started laughing and crying at the same time. Mom looked confused.....I said..I just realized that you just put a diaper on your 48 year old daughter, while I was crying.....Just like you did when I was a newborn! I was crying and laughing so hard. I never in a million years would think that would happen! Mom got a little tickled too. She cant stand to see me in pain, but It was really ironic! She said, I thought you would be doing that to me in my later years! No me to you!!!! We had a good laugh. My mom is ALWAYS there! My Daddy tries, but cant stand to see me in pain. But he is who I stayed with when I left the hosp. He took me to dr. appts. (Mom was on a scheduled trip to Maryland to visit her mother, who is 91, and doing great!) That's all for now, waiting for dr to call back about upper abd bloating. Going back to work later today if he doesn't want to see me. Love all of yall! and I wanna hear that joke Alysia! :-)

[annekat]

Lilly, there has been mention on here of letting the hospitals at least "sniff" the possibility of a lawsuit in order for you to get some restitution or consideration for the damage that was done. Maybe you are following Cindy's current thread, too. I'd hate to see them get away with this. Sure, docs are human and make mistakes, but they need to admit it and the hospital should take responsibility.

What a wonderful mother you have, and your dad sounds like a sweetheart, too.

[debhaz22]

Lilly,
I am SO sorry you had to go thru that terrible experience!!! Thank you for sharing your story, I for one, was totally unaware of the Vasculitis-Peroxide Danger!
Feel better.
Hugs
Deb H.

[debhaz22]

Ibuprofen is also a NO with WG??? I was not told about this.
Anything else??
Thanks

[annekat]

Ibuprofen is also a NO with WG??? I was not told about this.
Anything else??
Thanks I have used IB and the other NSAIDS occasionally with WG and nothing happened. But I think it is wise to follow the guidelines given by experts and pharmacists and NOT make a habit of it. I suspect that some of these warnings could be exaggerated, but better to be safe than sorry. I will definitely heed the one about peroxide!

[jvilner]

What I was told exactly is ibuprofen is not good on our livers because if all the meds we take. (They don't mix well-too hard on the body). It's just another burden for the liver. It's also hard in the stomach.

[Alysia]

wow Lilly, what a story. your diaper situation makes me cry. I am glad you and your mom could have also laugh about it. what an amzing mom you have. and I admire your endurance. you are amzing as well.
my Joke is one post above your last post here in this thread.
maybe you should try probiotics ? and I think that oats also help for recovery. maybe also camomile tea.
please update us how are you. hugs and prayers.... :hug1:

[Alysia]

What I was told exactly is ibuprofen is not good on our livers because if all the meds we take. (They don't mix well-too hard on the body). It's just another burden for the liver. It's also hard in the stomach.

Hi Joyce, thanks for that important issue.
btw, the docs in Israel are very ignorant and I am sorry to say that some are also too greedy, 2 gastro docs suggested to me to do colonscopy with preparation, that now I see from Lilly's post, that is forbidden and dangerous for weggies. I am glad that I refused to. I even asked one arogant doc if she really can asure me that it will not make me any damage, and she said yes. of course, no harm for her - she get lots of money if she is doing this procedure - but that ignorant doc, didn't even know what WG is, so how can she say that it is safe ??? :angry: I told her so and I was never back to her.
we need to be careful with some docs....

[annekat]

I am supposed to be due for a colonoscopy. Of course, I put it off. I didn't think about whether it might be bad for Weggies or not. If it is, that gives me an excuse not to get one! I am interested in any other thoughts on the subject. I think when I got my first colonoscopy 5 years ago, I was a Weggie but didn't know it.

[Alysia]

it depends on the kind of preparation, Anne. you need to see what are the demands and make sure it is without peroxide or other stuff that can cause damage.

[annekat]

it depends on the kind of preparation, Anne. you need to see what are the demands and make sure it is without peroxide or other stuff that can cause damage. Thanks, Alysia. I wondered about that. I remember the yucky preparation but don't know if it had peroxide in it. I didn't get the impression it did, but also didn't know enough to wonder, so I could be wrong. Will have to do some research on the subject and definitely ask them at the gastroenterologists if I ever get around to making an appointment!

[Lilly]

Ive been using Mirilax since I left the hospital, and it has worked to me, along with drinking lots of water, and an apple a day, and lots of fiber. I have an appointment with my "new" gastro Dr today who did my colonscopy. Hope all is going well! Ill let yall know. :-) Thanks for all your kind works and letting me be honest without feeling weird about it! We do have some gross things we go through, but we are strong! Love all yall!

[debhaz22]

Hi Lilly,
What was the edema in your upper abdomen?
I'm glad "things" are "working" again ;)
Deb H.

[drz]

Thanks, Alysia. I wondered about that. I remember the yucky preparation but don't know if it had peroxide in it. I didn't get the impression it did, but also didn't know enough to wonder, so I could be wrong. Will have to do some research on the subject and definitely ask them at the gastroenterologists if I ever get around to making an appointment!

How can this procedure be done safely for us Weggies? What do we need to avoid? I was thinking of having another done this year???

[Lilly]

Debra, funny you should mention sueing them for negligence! I figured I would wait until I get a hospital bill, THEN I will give it back to them. I am not going to pay for a hospital stay that was because of something THEY did. Never know what will happen from there! :-)

[Lilly]

Hi Deb H. Im not sure I understand your question.....(sometimes Im a little slow!LOL) Are you asking if the enema was in my upper abd too? If so, it wasn't. But I am having some bloating in my upper abdomen. Probably just from eating so much fiber! My impaction was just about 12 inches up from my colon (exit area) So it was very low. Nothing but just LOTS of stuff ready to get out in my upper area! :-) Let me know your question if I didn't answer it. Thanks for your thoughts! Luv U~

[debhaz22]

Hi Lilly,
I was referring to this from yesterday:

."as I have upper abd bloating. My sister that I work part/time with, is very worried about this. I have never ever had any internal involvement from wegeners. Just sinus, throat, lungs. So this enema was a big scare for me, because it caused damage to Internal part of me, and I want it to heal. Now I am having some bloating in my upper belly, My sis noticed last nite when she visited me. I had noticed it too. But I kindof ignored it thinking it was just gas. But my tummy hurt to the touch too." ..

Just checking that that has resolved itself, gotta keep check on you :)
Hugs,
Deb H.

[Lilly]

I think it is safe if they KNOW you have a VASCULAR Dz. and use the right things to clean you out, like stuff u drink. And I had my Dr that did my Colonscopy talk to my Wegeners Dr. and let him know what they were doing, so if there was anything the gastro Dr needed to know, My Wegeners Dr could tell him. I wish you luck!

[Lilly]

Oh, I gotcha now. Yes, im going to the gastro Dr for my Post Hosp follow up, and I am going to ask him about that! Ill let you know.....thanks so much, I love all my Weggie friends! Yall are the BEST!!!!! Getting ready for work. Then Dr. Talk to yall tonite, and I need to catch up on newbies, and others, and how everyone is doing......Im behind!

[Alysia]

love u2 Lilly :wub: thanks for all the info and for the good spirit. good luck with your doc !

[lag713]

Your story has it all - it was funny (poop is funny), scary (colon coming out was terrifying), educational (say no to peroxide!!), and heart-warming (your moment with your mom over diapers was so incredibly sweet).

Thank you for sharing an embarrassing story. It is something that we are all better off knowing. I hope those docs learned a lesson (they definitely will if there is litigation) and will treat others a little better from now on.

I hope you're back to your usual self in no time! Take care and keep on keeping on!

[Wegetarian]

Does anyone know anything else we can't tak?. I know ibuprofen is no good.


What I was told exactly is ibuprofen is not good on our livers because if all the meds we take. (They don't mix well-too hard on the body). It's just another burden for the liver. It's also hard in the stomach.

Haven't heard that we couldn't take ibuprofen... When I left the hospital they gave me prescriptions for 100 pills of ibuprofen and 100 of paracetamol. I have believed ibuprofen is bad for your stomach, while paracetamol is bad for your liver. Luckily I don't need almost any painkillers, but when I do I take the ibuprofen or sometimes another med with codein.

Real sorry about your experience. Sounds awful. I was at a colonoscopy without painkillers (I didn't know it huts, and came there by car so couldn't take their painkillers). After 30min the doctor said they really need the painkillers for me, but luckily the managed to jam the thingy far enough... If I go again I'll ask for some zombie drugs.

[acker]

Wow !! that's BAD, you should have not ever gone through that,:w00t: I know they do get things wrong, I broke 2 ribs after a motorcycle accident and my GP gave me Ibuprofen, so I told my consultant, he rang my GP and said "are you trying to kill my patient, DO NOT give him anything without asking me first"

So glad you're ok now :biggrin1: Acker

[Dirty Don]

I think the word everyone is leaving out is: moderation. Yes, Nsaids aren't good for us, but in moderation and at the correct times, they do what they're supposed to do without damage. IF my liver numbers weren't good at all, of course I'd be more cautious, but there are times when Ib or any other pain killer does work and is needed. I wouldn't take propofol either on a regular basis, but it did it's job despite any dangers that were lurking because of it. Caution is not exclusion, it is moderation of inclusion/exclusion.

[Lilly]

Hi to All my Awsome Friends...... Ive been reading a Lot about the Ibuprofen question for us Weggies. What I have learned from my doctors, is that he did not want me taking it because it is very hard on your liver. They can do liver blood tests, which tells if your liver is ok. But from what the Drs tell me, the liver does not really show problems until its too late, so they try to do a balancing act if it HAS to be given. But if its been a long time being used, they try to swith to something else. When I was using Loritab for pain, it has ibuprofen in it, so I asked him if I could just take the Loritab without the ibuprofen.....and he told me that the ibuprofen and the loritab work togather , and one without the other is not going to do the job. So that's what Ive heard.
I have been doing good recuperating from my Colon/Enema 6 day hospital stay.....I still have not received a bill. If I do not get one in the next week, I believe I may go to the hospital and make sure the are not billing my insurance company. I will probably call my Ins company first and see if they are getting billed. Does anyone know who I should talk to about this situation at the hospital? Should I talk to a Lawyer first, (not hire one, just get a free consultation, they will do that hoping you will hire them) .... I kind of feel like I should do this.
I am thinking about having another colonoscopy, but have the colon dr talk to an anisthiologist re: another Medication to put me "out" while he does it. I think that they just used what they usually use, and I need something a little stronger, a different Medication. I want to know if and how it is healing. I had a "movement" that was not as soft as it should be, and there was pain in an area that concerned me. I need to stay on top of things! Ahhhhhh,,,,,,,Always Doctors, Doctors, Doctors, Procedure after Procedure!!!!!!! But Gotta keep on keepin on! We have to take care of ourselves! The Doctors cant help us If we don't let them know whats going on! :-) Ill Talk to yall soon~~~ Stay Strong Everyone !!!!!! Thank you ALL for being there for me....Much love to all!

[drz]

Do they have a patient advocate or PR person that apologizes and tries to help fix things when they screw up? I had several contacts with this person at my local hospital when i started my pentamadine treatments here. She usually gave me a free meal and apology and assurances she would try get the problems fixed. It eventually lead to a discussion with the CEO who did fix the problems.

[acker]

Hi to All my Awsome Friends...... Ive been reading a Lot about the Ibuprofen question for us Weggies. What I have learned from my doctors, is that he did not want me taking it because it is very hard on your liver. They can do liver blood tests, which tells if your liver is ok. But from what the Drs tell me, the liver does not really show problems until its too late, so they try to do a balancing act if it HAS to be given. But if its been a long time being used, they try to swith to something else. When I was using Loritab for pain, it has ibuprofen in it, so I asked him if I could just take the Loritab without the ibuprofen.....and he told me that the ibuprofen and the loritab work togather , and one without the other is not going to do the job. So that's what Ive heard.
I have been doing good recuperating from my Colon/Enema 6 day hospital stay.....I still have not received a bill. If I do not get one in the next week, I believe I may go to the hospital and make sure the are not billing my insurance company. I will probably call my Ins company first and see if they are getting billed. Does anyone know who I should talk to about this situation at the hospital? Should I talk to a Lawyer first, (not hire one, just get a free consultation, they will do that hoping you will hire them) .... I kind of feel like I should do this.
I am thinking about having another colonoscopy, but have the colon dr talk to an anisthiologist re: another Medication to put me "out" while he does it. I think that they just used what they usually use, and I need something a little stronger, a different Medication. I want to know if and how it is healing. I had a "movement" that was not as soft as it should be, and there was pain in an area that concerned me. I need to stay on top of things! Ahhhhhh,,,,,,,Always Doctors, Doctors, Doctors, Procedure after Procedure!!!!!!! But Gotta keep on keepin on! We have to take care of ourselves! The Doctors cant help us If we don't let them know whats going on! :-) Ill Talk to yall soon~~~ Stay Strong Everyone !!!!!! Thank you ALL for being there for me....Much love to all!

Hi Lilly, a bit more info about Ibuprofen, the reason my consultant gave my GP a telling off, was that when I was in hospital my kidneys went down to 8% of their working range, so I had to be very carefull with all the other drugs I was taking. Acker