Still in the hospital...

Oh my gosh! Words fail me. This must just be the absolute pits! I hope you have some good frinds and family popping in for some Christmas cheer. When I was still working in the hospital still it was always such a bummer for patients stuck there. We'd try to be all festive and all, but it sucks, any whaich way you slice it. Not so bad for us nurses, because we would get to go home at the end of our shifts.

This new fluid collection thing puts a new wrinkle on everything too. Hpoefully, it is nothing. Sometimes post op fevers are just red herrings, but they have to follow up and make sure nothing is going sideways.

So, I can empathize with you. Fingers crossed for you that the aspiration of the pocket goes well. At least it will break up the monotony!

Merry Christmas,

Jan

were with you tonight. not physically but in heart soul and spirit. this will make your recovery at home seem like a piece of cake or pizza. your choice...

I had all the same complications as you - ileus/blockage, 24 hours of vomiting, NG tube, fever, WBC count of 36, fluid buildup. Also had a dramatic potassium deficiency necessitating the imbibing of liquid potassium. The only difference is I had them after step 1 of 2. But, I got through it and you will too. I think I read that you are 32 years old so about the same age as me when I had surgery. You're young and strong and your body will get through it.

@Jan - Yeah, it sucks to be here for the holidays, but I'd just rather think of it as another day and then celebrate when I get home. My parents have been here the whole time keeping me company; I have Christmas decorations and lights on my bedside table, and all the nurses are wearing Santa hats and reindeer horns, but it's hard to get in the holiday spirit when you're in the hospital and not feeling well. But I plan to definitely live it up and open presents and have a belated Christmas with them once I'm home.

I think the fever was just a reaction to the traumatic removal of the NG tube, but who knows. And with the WBC, they of course have to follow up.

@CTB - Yeah, I had the potassium deficiency already... had to have the "acid drip" - that potassium burns the veins when it goes in! Funny how I'm having all the exact same complications as you. I know I'll get through it all; I'm just getting impatient while I'm still here. Two weeks is a long time... though I know soon enough it will all be in the rearview.

quote:

Yeah, I had the potassium deficiency already... had to have the "acid drip" - that potassium burns the veins when it goes in!

I can understand why they would have to give you the potassium by IV given your current situation, but let me tell you that the alternative and preferred method of administration, by mouth, is worse. It is quite possibly the most vile tasting thing I ever drank. The liquid version is deep red, like blood, and has a disgusting taste. It's really revolting and I was not going to even swig it but they made me do it.

It seems like you have covered each one of my complications if you also hit the potassium deficiency. You're my "complication twin" if there is such a thing, but there is a yin and a yang at work here, because I got the business on step 1 and you got it on step 2. My step 2 was a breeze, although I had a couple of blockages after being discharged from the hospital. But no blockages at all since 1992.

I just farted!

That is all.

Bootstrap,

I am sorry about your complications and at this time of year no less. I vividly remember that first 10 days post op and how tough it was as I too had vomiting, a failed nose tube try and a bad ileus that had me in a fetal position for almost three days. I had the 'try food' routine followed by NPO more than once during those ten days.

Keep walking as much as possible and hopefully the drain will help you. Good luck and I am sending you a Merry Christmas wish (for when you get home to celebrate). Your last post had me laughing.

Merry Christmas Bootstrap,
Congratulations on the...Santa brings the strangest gifts...not what we want but always what we need...How are you feeling today? How are the guts doing??? The potassium is definitely the devil incarnate going through those poor little viens but it is better than not getting it...I am thinking of you and sending Christmas Hugs...(spent my 18th Christmas in ICU having pouch surgery 2...And the doctors and nurses were Fabulous!)...so be patient, take good care of yourself and train for the Olympic hospital corridor lap limpping competition...you will win the Gold!
Hugs
Sharon

Merry Christmas, Bootstrap! Sorry that you are spending this one in the hospital. But, you will be able to make up for it next year when you are happy and healthy and UC free!!!

Merry Christmas!!!! My thoughts and prayers are with you today.

Karen

Merry Christmas, sorry you are still in the hospital. I had a collection of fluid in my abdomen also, they ended up putting in two drains to get the fluid out and actually sent me home with them. One came out about a week after I went home and the next about 2 weeks later, but they did their job. Wonder if that is an option. I was pretty sick until the fluids came out. They put them in during a ct scan. Just a thought.

I'm so sorry to hear about all that you're going through. My husband had IV potassium last time we were in the hospital, and it was horrible to watch him go through the "acid drip." Hang in there.

sorry that you're still stuck in the hospital i remember missing easter with my kids one year--it stinks, i know. hoping you'll be out soon and on a smoother road to recovery.

where are you boot? hope youre ok...

Yes, I'm still in the hospital, but hopefully for not much longer. Here's my update for the last few days:

I had a drain put in on each side to get rid of the fluid build-up, which was another traumatic experience. Normally they sedate you so you're pretty out of it when it happens and are feeling no pain, but because they were understaffed on Xmas eve (had to bring in an on-call team) and there was no one to watch me in recovery afterward before wheeling me back to my room, no sedation. So, very painful; I felt all of it. They took out 100 mL of fluid from my right and 200 mL on my left and left the drains in. The drain on my right is standard yellowish-clear, but the stuff coming out of the drain in my left is stinky, milky, puss-looking stuff obviously coming from the source of some infection... so it's good they're getting it out. They also started me on antibiotics that day.

Since then I have been getting steadily better, and the last two days I have felt pretty great aside from some soreness around the drain sites. Yesterday I was on clear fluids, and I digested and absorbed those just fine (urine output skyrockets when I get to the clear fluids), and today I've been on full liquids and have felt even better. This evening was the first time ever I started passing BM's that look more like a BM (refried beans) than like something an alien would spit out (neon green-black fluid). So things are finally progressing well, and it looks like we're headed out of the woods.

Dr. Varma wants to do another CT scan where they actually pump a little contrast fluid back in through the drain tube to see where it goes. Either it could lead somewhere showing where the infection/fluid build-up was coming from (recent stoma reconnect location or unhealed j-pouch?)... OR it could show that the abscess area where the fluid was collecting is shrinking/contracting on its own and taking care of itself. Both would be useful bits of information, but of course we'd be hoping for the latter so I can get out of here sooner!

Hopefully if it's all clearing up on its own, I'll be out of here this weekend. I can't wait to get home where all I have to worry about is when and how I poop. ;-)

Bootstrap...so good to hear that things are finally looking up. You have been through a really tough couple of weeks. I really hope that better days are ahead and that the recovery from here onwards is a breeze!
Good luck!!

I had posted the other day about having to have two drains also. I am glad you got them and they are doing their job. I went home with the two, got one out about a week later then the other stayed in about one more week after that. Your recovery sounds exactly like mine. Except I got out two weeks after takedown. You aren't too far behind that. I hope things only get better for you! Take care.

I'm keeping my fingers crossed you can go home this weekend and have no further complications.

Good luck!

Just read all your posts. So sorry...how are you doing? Are you home?
Alison

Yes, still in the hospital. I'm comfortable and feeling good, eating and digesting solid food just fine, walking tons of laps. Right now they're just waiting for the infected abscess in my side to be totally cleared up before they send me home. So, we're waiting for my white blood count to get back down to normal and stable (it's been decreasing) and for the drain in my side to start running clear instead of milky puss. Who knows how long that will take. The doctor made it sound like I'm not going home any time soon. They said maybe they'd take the drain on my other side (the one not producing anything) out maybe Wednesday when the IR people get back from the holiday.

On another note - just starting to experience some of the butt burn, or maybe it's a hemmie? I'm using the ointment they provided, and my outside skin is fine, but I feel an intense burning right inside my anal canal when I have a bowel movement - it's become quite painful - so not quite sure what to do about that. Anyone have any input/advice?

I think I'm bearing down more than I probably should to get things out, but I feel it there, and I have to go, and the only way to get it to come out is to push...

Glad to hear you are doing better and are comfortable. Hope the infection gets cleared up soon and you are able to go home.

As far as the butt burn goes, I found the only thing that helped is calmoseptine...not sure which butt cream they gave you. Please know that things do improve once your skin gets used to being in contact with small intestine digestive juices that it was naturally never supposed to see. I had my takedown several years ago, and I very rarely need to use the calmoseptine.
Please keep us posted on your progress.
Alison

hi bootstrap, just reading thru this... sounds like we had a very similar experience. in a few months you will look back on this with a bit of "fog"... for life will be better and you will feel much more comfortable inside anal burn was off and on for me for about 4-5 months, but only bad in months 1-3. I am heading into month 7 now. what helped was just making things more comfortable...baths, sitz baths, spraying water hose or bidet, using calmoseptine/ilex, eating bland for a while, taking bowel slowers to reduce frequency, keeping myself distracted as much as possible so time didn't seem to drag... it does get better. you seem to be progressing well, since you are able to walk a lot and keep down solids.

sending positive vibes your way

Hi Bootstrap,
I'm sorry ur still in hospital, but it sounds like your getting better. I know how you feel, I had an ileus after takedown and was in hospital for 10 days with ng tube and a rectal catheter. It wasn't fun, but it will get better. This website helped me so much. It helps to know, you are not the only one going through this. As for butt burn, I had bought calmoseptine with me to the hospital because most of the users on this site recommend it. You can ask the nurse to order it for u. It really is the best stuff! you can also order through your local pharmacy. I hope you will be home soon.

The cream they gave me is actually working just fine for the typical butt burn... the skin around my anus is a-okay. The burning I was describing is actually inside my anal canal where the cream doesn't reach. I thought maybe it was a hemmie or something starting to form, so I decided to stop pushing as much as I could. I know I've heard on here I'm not really supposed to be pushing much anyway. It's difficult to resist, but it seems to be helping... No more intense burning sensation inside when I go. I just seem to go a little more frequently maybe and in smaller amounts since without the pushing I don't get quite as much out when I do go... half the time I sit down on the toilet though it's to pee, not poop (the IV fluids plus full diet is making me pee up a storm - hoping to get off the IV today), and I just figure I might as well empty whatever's in the pouch while I'm at it, which is usually not much. It's a learning curve - new equipment doesn't feel or work the same, so figuring it out. I'll get the hang of it soon enough.

Happy to report though, that now that I have started eating and it's actual stool coming out (instead of nasty digestive fluids), I have no leaks whatsoever and am still able to fart no problem without any worries of leaks. (Of course I got pretty skilled at that "game" with my 17 years of ulcerative colitis.)

Right now just waiting until the holiday is over so the IR team can take out these drains in my sides. (Or the left one may just need to be repositioned again - won't know until they get in there with the X-ray.) Kind of at a stand-still for a few days, but at least I'm doing better and eating a full diet just fine.

Glad to hear you're on the mend. Don't know what to say about the burning, other than to have your dr diagnose the problem before you leave the hospital. As for the straining, I find sitting with my knees raised on my toes (I hope that makes sense) helps me empty my pouch.

UPDATE:

I finally got detached from the IV cart this morning. Woo-hoo! They stopped the antibiotics and want to make sure my white blood count stays stable for 24-hours before they send me off, so I might be going home tomorrow! (No promises.) I just hope they are able/willing to take the drain out of my side before they discharge me - really don't want to go home with it in.

Other than that, I am doing great. I have been eating full meals of solid food and digesting everything well. After a couple of days of adjustment, the j-pouch is functioning perfectly: no leaking, no urgency, no pain, total control, and able to pass gas whenever I please. Just can't wait to get home and sleep in my own bed!

Good news!! I ended going home with two drains, but will keep fingers crossed yours comes out before you leave! Thanks for the update!!

Wonderful news. I give you sooooooo much credit being in the hospital as long as you've been. I was climbing the walls after 8 days begging them to let me go home! You are a trooper and you certainly deserve a well behaved j pouch after all this. Hope you get sprung tommorow!

That's great news bootstrap!

I had to go home from my first surgery with an internal drain. I signed up for
the home care nursing service and when the time came to have it removed, my home
care nurse was able to do it for me at home without having to make the trip up
to SF.

Something to consider if they release you and you've still got it.

Yay! That's great news. Here's hoping you get to go home tomorrow.

Great News! I hope you finally go home.

Bootstrap

Hope you've finally made it home.

Even though you're not 100 % it sure is a lot easier to recover at home.

Lew

After twenty-four days in the hospital, I will finally be going home tomorrow morning!! WOO-HOO! I can't wait.

That's really nice, Bootstrap! Very happy for you and I wish it's a quick recovery from here on. Keep us updated about your progress. How is the pouch behaving? How many times are you having to go to the bathroom?

24 days-Wow! I am glad to hear you are finally going home. Good luck and hope your progress continues.

That is such great news bootstrap!!!

24 days in the hospital is such a long time.

I hope it all goes great from here on out.

Well yippee damn yippee!! It's about time. Hopefully you can start gymnastics and skydiving!

kathy

Finally!!!!
I second the YIppi! Yahoo! Goodie! Goodie!
Now be a good girl and take it easy....(and give it a week or 2 before the skydiving!)
Sharon

Yay!