Tony, where r u from?  I think Some place in Europe?   What kind of ostomy?? Hope your doing O.K. 

Hey John, where is your picture??????????  

Felicity, Coloring books? Planning on staying a while? I just want to curl up in many blankets and TRY to get some sleep.. At least 15 minutes at a time anyway..  I always ask for a private room because of my "Nellie" They always want to measure the output- and it makes my room mate sick.. And they never come to check it when I say "I DID IT" But, most hospitals are turning into private rooms for privacy RE: your information of medical etc. But in the E.R. I do ask for a private one and the Dr. understands.. And everyone is happy!!! 

I expect a lot of boredom. I don't tend to sleep much in the hospital. I am used to buzzing around like a mad woman at work. Lots of different things to do with folks. Lots of stimulation, interaction. Hospitals are boring as hell.

Yep. Private is nice. Last stay when I was blocked I managed my bags output and marked the amount down after making it clear I knew how to. The resection 18 years ago I shared a room. First roomie who fell victim of my retching and gagging was a pregnant woman. She bitched so much I got moved. I loved roomie #2, she was my mom's age. She had had a proctocolectomy for UC, understood the hell of messed up guts. I'd gag and she would ask if I were alright. Called the nurse a few times when I was unable. We played along with TV game shows. I felt sorry for the pregnant gal but had not way to control my gagging. I'd gag, she'd gag. I'd gag some more and she'd throw up... Poor thing, even when she was nasty with me I was sorry for her.

Hi , I remember one of my first stays with crohns being so sick like you and it only seemed to start at night. the other patients where very good and helped me out. I used to spend breakfast going round saying sorry to folk. but Felicity you have those great Fish Flops to look forward too! Now you can,t say they are boring!

Felicity, I know how to do it-- measuring and all-they just didn't believe me that it was so much-but when they took over it was and even more at times.  Hate to burst my luck here, but thinks are looking better-just hope that I can limit the infusions of fluids 3x a week.  I want to go play!! But I do still get weak at times.. Do you?  Been 3 yrs. for me. Anyone-??

When r u going for your surgery and why this time Felicity? 

Ya, I looked up those fish flops-- Seriously?? Well, at least no one will steal them..  Hope u have tiny feet!!! 

Bango, I had a blockage well, 2 of them- the second one I just brought a pillow in my bathroom and screamed into it..  Took much time, but I walked, did simple excersises , hot bath, and drank grape fruit juice.. Played with my Nellie..  That was the worst one ever!!  Sure wasn't going into that hospital again--Done with being their mascot!! It was a long night..  Tom acted like he was going to be a father again.. And I felt like it at time also.. 

I feel for you. 

The hospital system is not corrupt. It is stuck in #^&%#$. My personal opinion is that we have to take more than a small interest in our own health care. Doctors hate that, BUTt it is our butT on the line. 

When I was in ICU,  some intern was going to give me mismatched blood. Due to my obnoxious persistence, I actually caught it before they hooked it up. Said intern argued with me, saying that I could have it.  It was okay. 

I sent for the doctor on call. 

I think the intern was sent back to school. 

Can't be "NICE " with my life. 

Zuitusk, You saved your own life!!! Very smart!! Like I said u have to be your own Dr. to go to a Dr. GET TO KNOW YOUR OWN BODY!! One time I was in the E.R. and this woman wanted to go to the bathroom-then after an hour she was in the yelling mode-all this time nurses were just standing by her door. So, then I felt so sorry for this woman- I took my I.V. bag off the pole, put it mu mouth and went over and asked if she could be moved? they said yes. and I gave her the bed pan!!! Left it on the floor beside her bed ( I used gloves of course) She was so thank full!!! Then I came out and said "was that so hard?? "  Nurses just standing there doing nothing, rolling their eyes, not even on computer- just flirting with the staff.  I reported this also.   Told them some day that there mom would be left like that some day with these attitudes of theirs. (as this woman was older)  I am a caring person, been in medical training and did things in nursing homes that pre-nurses with 2 years of schooling do now when I was the age of 13. One time the nurses wanted me to wrap a dead mans body in plastic for the furnual home. I called my mom at home (nurse) and she came in so fast and did write ups. That was back in the early 60's.  I settled into dental..   Loved it!!!  

I'm proud that 3 members of my family are emergency room nurses. Hopefully, they won't become calloused to human pain.
on the other hand, my wife once dealt a wakeup call to a nurse. She went to visit her mother . Mom was stuck in the hospital for cancer. She was crying. My wife asked"why". "I've been ringing the nurse to empty the bedpan for the last 2 hours. They're ignoring me and the commode stinks."
So my dear sweetie went to the desk and observed that the nurse on duty was reading the Sunday paper. She interrupted her and asked her to attend to her mother.
The nurse responded that she will get to it soon.
My darling returned to the room and pick up the smelly commode bowl, walked back to the desk AND DUMPED IT ON THE NURSE.
Needless to say,the quality of my mother in law's care improved along with everyone's spirits.

The moral of the story is...
don't take sh*t from anyone, pour it on.

Good for HER!!  She is a sweetie in my book for sure!! When I was in CCU and ICE for many months- I always had a private nurse-she was playing cards on her computer--I wanted to talk a bit-like am I O.K>? will I die again? nothing-  I tried to hold a conversation-thinking that the Doctors/nurses would be interested in my communication skills after being in a comma for 2 months etc.. Some of them just moved their chair and computer further away and talked on their cell. This was my first connection to humans that I had.. I was scared, and confused, and WANTED OUT.. I tried my best to prove my point of progress. I gave up and felt lonely and very scared... That no one would help me if I needed them if I stopped breathing again. Whish I had your sweetie to kick ass for me.. It is people like her to make a point!! And boy did she ever!!  You go girl!! Now u know that u will be taken care of as she now knows the routine.. 

My hospital of choice is Holy Family Hospital.  It is part of the Providence group in Spokane, WA. Small enough to be very caring but large enough to handle most of the big stuff. The food is done differently than anywhere I gave seen. They give you a menu when you check in, with lots of choices. You call food services at your convenience, not theirs, and order what you want. The person taking the order is a dietician and they will work with your diet restrictions. The food is pretty good and served hot when you want it.  Pretty novel I think.  The downside that is becoming more common is that you see "hospitalist" doctors not your own.  They tend to only look at exactly what you were admitted for and don't take into consideration your past history.  For me this has resulted in one doctor draining a non existent cyst (It was a rheumatoid bump). She nicked a nerve and pretty much immobilized my right pinky finger. Another sent me home with active C-Diff which is horrid and contagious .. They quarantine you with it. And the most recent was done by one who took me off all my rheumatoid arthritis meds including taking me off prednisone cold turkey (even my dentist said he knew better).  I ended up in adrenal failure which nearly killed me and a huge flare of RA that is still not under control. The nurses were FANTISTIC and took wonderful care of me.  The Bad Doctor stuff i attribute to the Fed. GOV'T and the suits that run medicare.  So far I have had no blockages or other problams, but the past few days the severe pain after eating has returned. Back on Zofran and Bactrim. Hope it works!!

Don't know how I posted my last blurb twice... sorry. But I am now going to create a hospital bag. Hadn't really considered it before.  Thanks for all the great ideas.

That's O.K. to repeat.. I call it my senior moment... Yes, a hospital bag is so important!!  You know what YOU need and want..  No one knows where you put your special stuff and the pouching systems that you use and what you use for itchings etc.  Just grab it and go!!   I have mine by my bedroom door.. I have it in a beigh color, so my merry men don't to stupid walking in or out of hospital..  with a fixer type thing-and it doesn't block out my decorating..

I and some of us had put in writing many good ideas earlier on this blob-make your own home away from home bag... I just about packed the kitchen sink--then re-did it.. got carried away.. Like I am going on a long trip to an island...... Get real Marcie!!! have fun!!! 

For those that had to go home with an OPEN wound... to heal for months on end, I just feel so sorry you all!!  Bad enough that you have a problem for this type of surgery, but this type of healing?  Just holds you down for so long---It must have made everything else worse for you.

But you all  did it, and lived the worst beginning of a healing I ever heard of.. God Bless you and hope you all realize the strength that you really DO have to succeed forward.. IF u can do that you can do anything!! And some of you with the repeats of surgerys?  What a downer too!!  Even tho I have been through much, I didn't have that to deal with that (YET ANYWAY) And I am not looking for the other shoe to drop either like I had been doing up to 7 months ago..  I think that most of us do look for those shoes.. So, you all that have healed-Go for it and ENJOY life.. Enough is enough!! 

I went home (and then to rehab) on a wound vac. Caused healing from the outside in resulting in revision surgery. Aaarrrrgggghh&huh!  I now have a great deep pit where my little navel used to be.  If you yell down it, it echoes.

Where is your picture Msbjlee??  How long did it take to heal? Is this a different kind of healing besides all my staples--OH!  I had 6 thick meat clips on each side of my tummy (on top of my staples) to keep my mussels in tact..  It looked like a gitar (sp) string but thicker..And I had to learn how to walk with all this.. Very  hard, but I did it!! You must be one of many that have to past and seal to get that waffer on huh?  Lots of work..? I have my navel, but a bit side ways.. The scar lower than it cant see but the  scar above? YUP, and it still hurts when I stretch-kinda tight..  Been 3 yrs. How r u doing now?  

Working on a photo. Need to shrink the size of one so it will load. It took me about 4 months to heal, but that is from both surgeries.  I had no external staples or stitches, everything was inside with a small opening that drained the stuff into the wound Vac.  4 months on the vac that seemed to loose suction every 30 seconds and sound a really annoying alarm nearly drove me mental...hey wait a sec, maybe I am mental!  The scar as I said before is a deep pit where my navel was (he left a piece of my navel about 1/16th inch long.  Why? No idea, a souvenir perhaps?) the skin is very hard and feels like plastic.  The doc placed my stoma directly in the center of my waist line and close enough to the scar that I have to use a flexible wafer that extends into the pit.  So you are absolutely right I use a seal ring AND paste. I still have some horrid blowouts and they are always where the wafer touches the scar.  Is very frustrating.  As for how I am doing.  Some days I'm ok, but just ok.  I have really started grieving this loss, i sometimes feel like i have been violated and with the help of prednisone for severe rheumatoid arthritis I am having some awful mood swings that make PMS a walk in the park.  Roid-rage is alive and well! Ahhh prednisone the drug you love to hate!  I am still in a lot of pain and take dilaudid for it.  I keep telling myself that things will improve but I often wonder. So i try to keep on trucking along.

Posted by: msbjlee

 4 months on the vac that seemed to loose suction every 30 seconds and sound a really annoying alarm nearly drove me mental...hey wait a sec, maybe I am mental!  

I had a similar experience with my VAC losing suction and causing bad wound healing (that alarm was really annoying!). It took the manufacturer a month to figure out the unit was defective, but I had been taken off shortly after finding out so it didn't improve anything after that.