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

[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.

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....

[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 ??? I told her so and I was never back to her.
we need to be careful with some docs....