Crohns and Colitis Exchange

I just typed a post and the internet up here sucks so I lost it.

I'm back in the hospital. I got sent to the local ER Sunday night from a doctor in our clinic because my white blood cell count was 55,000. They sent me to the ER to start fluids and give me pain medicine because I was literally about to die from the pain. Then they shipped me by ambulance up to St. Louis (where I had the surgery) and the ER held me until they found a bed to admit me.

We're not sure where the infection and pain is from exactly. I have a severe UTI from them improperly doing the catheter after my surgery and my incision is grossly infected (they had to rip it open and it's currently stuffed with gauze to try to get it out), but neither of those should be causing the pain I'm feeling.

I got clear liquids back this afternoon... I had been NPO. They're pumping me full of fluids to keep my blood pressure up enough to give me pain medication and pumping me full of antibiotics to try to lower my white count but it's still dangerously high. Not sure what's going on but I'll try to keep you guys updated.

Sweetie, I'm sorry that you are in so much pain! Just one complication after another. What a nightmare!

I know how bad it sucks to be back in the hospital so soon, but I am glad that you are there where they can keep a close eye on you! Sounds like everything is out of whack!

Please keep us updated! Praying for you and thinking of you!
Take care-Big hugs
Mindy

Oh dear! I hope you are back on the mend soon. Keep us updated.

Hannah,
we are all here for you and worry about you. But like Mindy said at least you are in the hospital where they can watch everything. You'll be back on your feet in no time! You are a tough cookie!!

Hannah,
Oh honey..
Hugs., Hugs, hugs, hugs and more hugs.
I wish I could do something for you. You must be feeling so overwhelmed at this point and just done with this whole thing. I wish I could wave my magic wand and make you all better and put your intestines back and make you crohns free. But darn it, last I knew it the stupid wand was under my bed. ..

I know I am just being silly here.. But I do not know what to do or say. I feel so helpless... please keep us updated. You know you have our love, prayers and our hugs.

Let everyone pamper you and take care sweetie. Nothing else matters right now besides you recovering... Rest and recover sweetheart...
Hugs,
Gin

So a little bit of an update. I'm doing better. My white blood cell count was finally down to about 20,000 this morning, which is much better than the 55,000 I was admitted with but still a little ways off. I lost another IV today so I asked about a PICC line and they approved it, but then my surgeon came in and screwed it up... So they used the PICC equipment to find a vein they could give me an IV in that might still work because my veins are just.... Gone. But anyway. Hopefully this is the last IV. They found some antibiotics that should kill my infection orally so I shouldn't have to receive anything but steroids and pain medication through the IV unless I need more fluid. And judging from the swelling in my legs, I'll never need it again.

There is talk I may get to come home Saturday should the oral antibiotics continue to lower my white blood cell count. I'm still in a lot of pain, but hopefully it just continues to get better as time goes on. The surgeon also said that my drain should definitely be out before I go home this time, and I think that's where a lot of my pain at home was coming from. The tube is too big and my abdomen, once the swelling goes down, is too little so it literally scrapes against my organs.

But anyway. I'm fixing to try to get some sleep because I've been awake since about 8 this morning with no naps and only a few hours of sleep last night. There is definitely no rest in the hospital...

Oh, I had a horror story about my stoma too. Remind me to tell you guys later if you want to know. It was.... awful. Hope everybody's day was better than mine. Thinking of you guys bunches.

Hannah,
I would like to know about your stoma.. Feel free to post the information here or email me. I am glad to hear your wbc is down, but I am still concerned. My whole family is sending you good thoughts and prayers.

Honey, I know the horrors of blowing IV's one after another. I swear when I admitted for my resection I blew at least 15 IV's and the doc still refused a picc line as he planning to discharge me in less than 24 hrs. It was horrible, the nurses were getting mad at me for blowing the IV's, like I was doing it purposely. It got to the point where I was in tears and afraid to tell anyone when the IV was burning and swelling. My Dad finally had to step and talk to the nurses.. I mean yell at them! I am glad you have a picc line.

Hugs honey.. so many.. We are here for you. Let us know what you need.
Gin

I guess I got my wording silly again. I didn't actually get the PICC, the nurses just couldn't find a vein that would work so they had to use the ultrasound machine to find an actual vein that might work for an IV and have the PICC team put it in. So far, it's working okay. But they switched me to oral meds last night and my white blood cell count is climbing again, so now I don't know if they'll take me back to IV antibiotics for a couple of days and try again or if they're just going to wait on the oral ones and see if they work.

Hi honey! Glad that you may get to come home this weekend! That is definitely a step in the right direction!

I would love to hear your stoma story, as I have several of my own! Please feel free to vent and get it out of you! I'm getting all freaked out about going out to dinner tomorrow with the girls that I used to work with because of this silly thing. I just never know what adventure I am going to be in for. God, I hope it behaves!

Please try to get some rest....and tell your mom to do the same. I'll bet she hasn't slept a wink since this started! I'm praying for your entire family! I'm just so sorry that you have had such a horrible experience on top of such a horrible experience! Double whammy....and you just don't deserve that!

I'm glad that you were able to post and keep us up to date on how you are doing. I've been thinking of you all week long!
Hang in there, darlin'!

Try to get as much rest as you can and let us know how you are doing when you can! We are all pulling for you!

Hugs and kisses!
Mindy

Basically the stoma story is just a nightmare that happened because nobody can get me any damn supplies that fit, lol.

It started because I was finally going to get to take a shower. I was filthy. My fever had been crazy for hours and I was sweating all over myself, I was bloody from IVs, the nurse who emptied my ostomy at one point got stuff on my pants, I had strange drainage from all kinds of places because my abdomen was literally packed with infection. Anyway, you get the point. Finally getting a much needed shower. And the shower goes fine. But when I get out of the shower, they had given me the wrong kind of backing for my ostomy. They gave me a concave one, and I didn't know, so once I finally got it on there, I was bleeding because it was pulling the stitches around my stoma. Then I spent about the next hour trying to get a bag to fit on it because they kept bringing me the wrong sizes. So I ended up with poop all over one of my few pair of clean panties... As you know, those are quite a commodity in a hospital.

And one of the techs just stands there and looks at me for like fifteen minutes while I'm sitting on the toilet in my underwear crying because my stoma is bleeding and burning and I'm getting poop all over myself. She kept saying "Well if you'd do this, it would stop doing this." And I kept saying "No it won't because it doesn't fit." Until I finally just yelled at her and told her to leave. It was awful...

I took another shower today and it went much better. My stoma is still bleeding and it burns when I first put the backing on though. So I'm curious what that's about. I also changed my incision dressing by myself today. And my drain got pulled yesterday. It's looking like I should be released in the morning as long as my white count hasn't risen since last night.

I've decided that I look like I'm about 90 when I'm naked, lol. I have so many bruises and I'm lumpy and swollen in strange places from all of the extra fluid build up. I'm sure things will line out soon, but it's so gross right now. Anyway, I'm gunna lay down for a bit because sitting up for extended periods still hurts.

How's everybody else?

I'm not coming home today. My white cell count jumped from 14,000 to 22,000 yesterday so the oral antibiotics aren't working well. They're going to put me back on IV fluids and keep trying the pills for now, but we'll see.

Oh Hannah, Im so sorry you are havingsuch a hard time lately. I have no words ofwisdom but really just wanted to send you some hugs and support.. Hope the infection goes away and you get to go home.
jodi

Oh no.

Oh, Hannah! When will it end for you, darlin'? I am sorry that you are having such a hard time finding the right "fit" with you equipment! I'm absolutely amazed that you are already changing your site on your own! That is fabulous! I had to have 2 home health visits before I felt comfortable doing it on my own! It really does get easier....I promise. I have learned to put plastic bags down around me when I am changing everything, because you just never know when that sucker is gonna spew! It can be quite frustrating, to say the least!
I hope you get to come home soon! Hang in there, girlie! We are all thinking of you!

Hugs-Mindy