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In hospital, heading towards first surgery?

Hello all,

So I've been in the hospital since Thursday because everything kind of fell apart. The stomach, fistulas, ahttp://www.crohnsforum.com/newthread.php?do=newthread&f=2nd skin infection problems all came to a head at once and when I went to my doctor Thursday I think I felt the worst that I've ever felt. The pain was so bad that once they got me into the hospital and set up with an IV, the morphine didn't even really do it. They now have me on the "next step up" pain killer (which does do it :ybatty: ).

So tomorrow we're having a serious conversation about doing a surgery called a diverting ileostomy (or however that is spelled). That's where they temporarily divert my bowels into an ostomy bag for a few weeks (at least until after my next Tysabri infusion) to give everything a rest and let the medicine work unimpeded. I'm torn. On the one hand, I'm nervous about any surgery. On the other hand, this has been a year and a half long odyssey of trial and failure to find a new medicine and I really want this Tysabri to WORK, and if this surgery could help...then maybe its worth it. I mean, I trust the surgeon, she's really good. Its also laproscopic so the recovery won't be so bad...

Anyway...I mostly am just posting this to get some cyber-hugs. It HAS NOT been a good week.



ele mental leprechaun
Awww Erin so unfair honey. Lots of hugs and get well thoughts heading your way. You know out of sight isnt out of mind so remember you are in our thoughts whilst you are on the mend.



Ugg I really hope this will be the answer in helping you to heal a little bit.

best wishes Erin!

and dont worry about the surgery, its a breeze;) you'll do great! and hopefully it gives you all the relief you are after.

Good luck Erin.
I'm in the same boat as you, I'm going into hospital next Thursday, and it sounds like the same operation.

get well soon


Good luck Erin:) I feel soooo sorry for you, what you are going through sounds awful but I really hope it works out for you.

Caz x
Hey all,

So, its the day after my diverting ileostomy. It seems to have gone all right, they say I'm recovering faster then most people (I can already eat solid food and everything). But it is definitely gross and I'm feeling the kind of, grossed out about my body feeling that I knew was going to come...I just really wish I was normal, you know.

I'm sure I'll get used to it, but as of right now its a little hard to cope with...

best wishes Erin.

glad to hear your healing well though, thats a great start for you!



ele mental leprechaun
Hey Erin,

Very glad you came through the surgery so well. Can understand the feelings you must be going through with the ileostomy - do you have a stoma nurse you can pick the brains of yet?

Am sure Sharon (merrywidow) will be able to go through some aspects with you also...

Keep us posted on how you are doing honey. Just take it one day at a time and if needs be one hour at a time. We are all here for you.

Thinking of you lots and sending leprechaun hugs your way (((hugs)))
Hello all,

Sorry for the quite belated update...though once you read I'm sure you'll understand why. After my surgery everything seemed to be going great. I was tolerating solid foods and able to move around, so they released me that Friday (the 31st). By 2:00 AM on the 1st, I was having bloating, nauseaus, pain with vomiting so my boyfriend brought me back to the ER (bright side, you don't have to wait long when you're there as a post-surgical patient). They did some tests and determined I had what was called an illeus, which is sort of like a paralysis of the intestines that stops it from being able to process stuff through. So they had to put a GN tube down my throat to suck up all the stomach bile that was making me sick.

That tube stayed in for two days until the removed it, but the problem was the same so I had to get it replaced and keep it for another 4 days! I swear the tube caused as much pain as any other problem did!

Now the upshot is that I've been in the hospital for two and a half weeks straight (with one twelve hour break). They're not sure if the major problems were caused merely by the illeus or if it was worsened by a kink in the illeostomy caused by swelling (which seems to have gone down). But they've determined to send me home tomorrow on TPN (IV nutrition) through a central line for a couple of weeks so that I can reintroduce oral nutrition very slowly. I've lost 15 pounds just while in the hospital (and another 10 before I was admitted) so its urgent that I regain some wait! But at least I get to go home.

Anyway, thought you'd all enjoy my disastrous update.


As a post-script to my update, I know alot of times on this website there are complaints about doctors and nurses and care...I have to say, I feel like throughout this process I have gotten world-class care from everyone I saw, my GI doctor, my colo-rectal surgeon, and all the nurses who have been taking care of me on the floor. If any of you live in the Boston, MA area and want recommendation for doctors/hospital, please message me, I would strongly recommend these doctors. :) Even the ER wasn't so bad!
Hello Erin,

I'm so sorry this happened and you ended up back in the hospital.

I'm glad you have great care and they will monitor you to see all goes well.

Sending you healing hugs~Nancy
Hey Erin,

Sounds like you've had a really really tough time. I'm in hospital too, and probably starting TPN (see my other thread). I hope it works for you and you feel better soon. Sounds really scary but I am slowly getting used to the idea and know I need to put on weight to feel better.

I really hope things start to smooth out for you soon. Thinking of you.

Your fellow 'cyber' hospital roomie,
Cookie xxx