Skip to main content

Was home 1 week with a few better days and a few not so good.
Had a visiting nuse comeing 2 times a week.
She did not feel well at all tuesday afternoon.
Woke me up @ 4am yesterday. Was throwing up bad.
She said she was throwing up feces. I drove her to local hospital
And her cond worsened quick. A catscan there @ 6 am said there was infection in bowel.
Phemnomia in rt lung. And a leak. She was airlifted from local hospital to here around 1 pm.done catscan here and determined that she is perferated?
Cant seem to get much for answers as to where. WHY? She is in icu and much better than yesterday. Still haveing servere stomach spasms. As I was writeing this a person from icu came and told me they were going to put a drain tube in because she was retaining fluid.
But diddnt know or wouldnt say where.
He said the surgical team would talk to me afterwards and tell me then.
Nurse said no surgical team. Radiolgy team
.. and they would talk to me after when . If. They had time. Dr that actually done surgery is gone for 2 weeks. Theres a older fella from Australia laprena? Filling in. Seen him for a minute last evening. Begining to wonder if she made the right choice in getting this done at all? She had tried every type med for the uc. Nothing but very high doses of prenisone helped. And for the last 6months that wasnt controling the flares either.
Sure am tired of seeing her in so much pain. As bad as she was yesterday I was really happy to see her hurting or not when I got to cleveland. I had doubts..
Original Post

Replies sorted oldest to newest

Oh my gosh! I'm so sorry that she's in such a pickle. This is what they call a septic complication, and can be very serious. However, she's in the right place and she should be OK. These things happen sometimes, where a bowel leak happens and there is a big infection inside. But, once the drain is in and the infection is brought out, healing can begin. Often, the perforation seals off by itself, even before they identify the problem. But, once the bowel contents spill into the abdomen, infection ensues. This probably was brewing for a while but took this long to get serious. My leak took a month before I landed back in the hospital with a drain for a presacral abscess.

But, that was 18 years ago and I am OK now, still have my j-pouch, and am doing OK.

You can make yourself crazy second guessing the surgery. You don't know that she wouldn't have perforated without the surgery.

When you speak to the doctors be sure to ask them to explain everything. They can act like they don't have time, but insist. It will help you feel better about what is going on.

Good luck,

Jan Smiler
I'm so sorry!! She's in the best place possible and they will fix her up. I had a similar thing happen after my first step of surgery. I was in severe pain a week after I got home and ran a high fever. Ct scan showed huge abscess in my pelvic area and a leak. A radiology team put a transglutal drain in (other words thru my left butt cheek) and there that drain had to stay for 6 weeks. (I went home with it ... i didnt have to stay in the hosptial for 6 weeks... only about a week) I'm just telling you this because I came out of it totally fine as hard as it was to go through. She will pull out of this but it's going to take an emotional toll. Hang in there .... Be there for her....and take care of yourself as well. Sending healing vibes your way.
Spent 3 day's in icu.
Felt great when they got her to new room..
Changed pain meds and she was really naucious
For the next 2 days. In all the time we were here they had never gave her perkaset.
But as soon as she left icu they did? The mix that worked well before we left last time was norco anf tramadol. Oxys did the same thing to her stomach the first 6 or so days we were here last time. Just wouldnt think it would of been that hard to look and see what worked the best the first visit? Especially with me asking them to every day.took her off the perk at noon yesterday and on norco.. guess what... no more nausea. She ate some supper.
Slept pretty good and feels good today. Kidney functions are off some.. and so is sugar??
Gona have the drain tube for a while.. but if she can hold down solids and get the kidney functions better we can get out of here. I hate this place. Its makeing me sick to even be
here. Wouldnt wish it on my worst enemy. Just want us to have our life back. And get back to work. If I still have a job..thanks for the replies they really did help.
They probably did not think that Norco would be strong enough for her pain. That is the only reason I can think of why they would use it if she had prior tolerance issues. Nausea is a pretty common side effect.

Anyway, I'm glad she's doing better. It is a good thing to hate the hospital. It is noisy, uncomfortable, full of sick people, and a terrible place to try to rest and recuperate. Plus, it is the number one place to pick up a horrible infection! So, everyone should be highly motivated to get out. Granted, some hospitals are nicer to be in than others, but overall not a great experience.

Fingers crossed that she gets discharged soon!

Jan Smiler
All that she has been through can definitely be taxing to the kidneys, but they are remarkably good at recovering, if given the proper treatment. You can get by pretty well with about half a kidney, not that you'd want to!

The blood sugar could be related to steroid use, which really messes up glucose metabolism, or it could just be latent diabetes that was coming sooner or later. Sometimes stress/trauma brings out these things. If she was on TPN, that also can mess things up (including kidneys!).

I agree, you deserve a pint or two or ....

You are a great hubby for being there for her.

Jan Smiler
2 workers. No fmla. Wife is gona run out of paid leave. Hopefully she dont loose her job as well. Shes the insurance carrier. May have to pay it out of pocket if that happens.
Kidney functions are going down about 2 points a day. From 2, 4 to 1.4 today. They keep sayin mabe tomarrow. Shes not takeing it good today. They want one more day of ivs.
Shes waiting on kidney dr right now. And shes in a pissy mood.. she wants to go home........ me too but dont want to have another flight back either. (Hope ins covers that one) nausea has been gone for couple days. Shes eating good. Good as can be expected considering the food isnt real good..she feels pretty good. Misses home and grandkids.and her own bed.
And of corse my cooking.. shes a great cook. But since shes been sick I do a lot of it.im back to the numb state again just dont care. Hopefully this nightmare ends soon. If shed have known this was how it was gona be it would of never happen. Now we got part 2 to think about for months..bet we will plan on more than 7 days next time. Should have someone drop us off. Between the parking grage and eating its crazy.. all the money they make off the stay and charge 10.00 a day for a patient to park? Go figure. And will for sure bring a cooler. Did this time some. Stir frys downstairs ate top notch and affordable. But after 5 or so Im a bit burnt on syir fry.
shoot thru.. you can buy a package of parking coupons somewhere somehow at CC. I think you can get them at any of the parking cashiers. My husband does it when he has to do extended stay when I get locked in the hospital. They are far cheaper than the normal parking. And the coupons don't expire. So if you don't use the whole book you can use them on your next visit.

Also, don't know where you are staying, but most downtown hotels have free shuttles going to CC and also CC has its own free shuttle service which goes to many many hotels.

I do hope you get yourself out for a bite and a beer at a pub every now and then. You need a break. You need good mental health to help your wife keeep fighting through this. Just make sure the nurses have your cell phone number. And also write your cell phone number in huge numbers on the white board in her room.

As for her eating.. you can bring her in some things that are in accord with the diet she is on at the hospital. My hubby does that for me all the time. I can't stand that unhealthy aweful tasting hospital food. See if you can just bring her in a few things she likes as long as its allowed on whatever diet she is on.

And as much as you are worried about work and insurance junk right now... you have to put that lower on your priority list. What good is work and insurance if you both don't have your health. Focus on her. Focus on yourself. Things will work out somehow someway for the other stuff.
prayers for you and your wife.
liz
shoot. just found the CC parking discount info. Here you go.

Self-Park Discount Coupons
If a patient or visitor expects frequent visits to main campus, discount coupons are available.
Five-pack $35
Five-pack (Senior Discount) $30
*Seniors must present Golden Buckeye, AARP, Senior Circle or Healthwise Connection card. Coupons are valid for
use in self-park facilities only (not accepted at valet).
Purchase Self-park Discount Coupons from:
 All valet cashiers and self-park cashiers throughout main campus
 Parking Services Office (open Mon.– Fri., 7 am – 4:30 pm, JJ North Office Basement)
Actually ive spent 20 nights all togather in a recliner in her room.
Best I could find a motel was red roof inn in west lake for 59.00 a night.
Kids and I spent a couple nights there and a couple nights at holiday in in westlake.
This isnt the best area to get a motel in.the hospital motels are outrageous.
But west lake avon area are nice. And 59.00 w 2 double beds isnt bad.
They giveva discount at the holiday in and red roof in for cleveland clinic customers.
For just me to sleep I cant see fighting the traffic and spending another 60.00 a night. I can sleep anywhere. About 2-3 hrs a night is all I get if I aint home anyway.did get her a mashed potato bowl from kfc a couple times.- the corn of corse..and a few bites here and there of ham or bologna sandwich. After the 3rd time they said mabe tomarrow and diddnt.I broke out for a few hrs. Went to red robin. The grocery srore and got some sandwich stuff chips and pop tarts. Next time I will bring a big cooler of stuff from home.guess what they said today???? Mabe tomarrow..
Will get some parking passes. That will save 15.00 per 5 days. Still think itd bs if your admitted.. mabe for visitors.. but not if you have to stay there.
Thanks
Think it was the 8th we left
Was there 9 days..
She is much better. May get the drain tube out tomarrow.
Went for a dye study friday at local hospital. Will know more tomarrow.
Hardly anything draining any more. But still a bit yellowish..
Shes starting to nag a bit last few days.. so she feeling better..lol
Anyone know of a decent stoma belt? She is susposed to gi back to work in a couple weeks.
Was wanting something to conceal the bag a bit..
Thanks for everything. U guys are great...

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×