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Help me, scared, can't think straight

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Ulcerative Colitis
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Posted 10/12/2014 10:37 AM (GMT 0)
Just got out of 8 day hospital stay. Was admitted Friday after being taken to ER for dehydration and anemia following 8 week flare.

Immediately put on high-dose oral steroids and fluids. Gained 20 lbs Fri-Mon. More like 30, now.,

Diagnosed CDiff on second day. Put on vanco and Flagyl.

Had FMT through endoscope on Wed and also a flex sig.

CDiff cleared within two days.

Had Remicade infusion also on Wed evening. Unsure of what is supposed to be happening after Remicade.

Currently home on prednisone 40 and Lasix for the bloat as well as potassium and morphine.

I know it is only the first day home, but I am miserable.

Can't sleep, can't eat, expelling black grainy material from bowels.

Cannot even bend my legs they're so bloated.

Worried about work (am primary breadwinner) as well as Hawaiian vacation on Nov 8 and work conference immediately following.

What are my chances of getting through this? I am feeling hopeless. Almost wish I has just croaked.
Posted 10/12/2014 11:39 AM (GMT 0)
This disease definitely sucks. At one point or another we have all been in your shoes. The best advice I can give you is that it is always darker before the sun comes up. I never had to battle with both UC and C-Diff though so I can't possibly imagine. Sometimes I think the antibiotic treatments for C-Diff, even though they usually eventually work for C-Diff, can make our UC worse so I think you have to make your UC worse just to get rid of the C-Diff, after which you then have to work on UC all over again, hoping that that doesn't cause your C-Diff to return. I try my best to keep C-Diff at bay by limiting my exposure to antacid type meds and by taking mega dose probiotics.
Posted 10/12/2014 12:21 PM (GMT 0)
so sorry you're having a rough go geeker cry

me personally myself have never been in your shoes - ever - not even close - never been hospitalized, never been on high dose steroids and iv antibiotics, never had c-diff, never been on remi or anything resembling it -

so i can't even begin to know how you are feeling -

wish i had something helpful to offer - i'm just glad this forum is here for you -

hang in there -

Post Edited (soystud) : 10/12/2014 7:46:35 AM (GMT-6)

Posted 10/12/2014 1:39 PM (GMT 0)
Yeah...
My whole life had to be rescheduled.

I made reservations to go to Yellowstone next year.
Hopefully it will work out better than this year.

Sorry...
Posted 10/12/2014 2:14 PM (GMT 0)
Hang in there geeker. I had similar scenario in the winter with pancreatitis/c-diff/flare and similar treatment. Went home miserable like you with tree trunk legs and every poop felt like giving birth to an angry fire blob and I thought I was dying a slow death. I lost the water weight in a couple of days and it took about 1-2 weeks for me not to fear going to the bathroom and then I slowly got better. You're recovery needs a tincture of time. That's one of the many negatives to uc. Treatment does not give us immediate results.
Posted 10/12/2014 6:37 PM (GMT 0)
Wow, sorry to hear you have been through so much and so many drugs at once. There's a great chance you could be feeling really well very soon after having the c diff cleared by FMT. Pred and morphine will make most of us feel like complete wrecks. As others say, hang in there, you are out of hospital so physically getting better, just need some time for your mind to catch up.
Posted 10/12/2014 6:57 PM (GMT 0)
You poor thing! Can you try not to think about work, it will only stress you out more, and try to focus on getting better a day at a time. You will get better, but only over a period of time, so try not to worry too much, be kind to yourself, and ride it out. In the meantime I hope you have got people around you to help, and support you.
Posted 10/12/2014 8:17 PM (GMT 0)
It will get better. Hang in there. One day, whether you need surgery or a new med it will get better. Stay strong. Have a good support system. (Whether it be family, a CCFA group, or online.)
Posted 10/12/2014 8:39 PM (GMT 0)
I think most of us with moderate/severe UC have had this same scenario. Very sorry. I've been hospitalized too many times to count. You're not alone.

The weight gain is solely the prednisone water weight. It should come off now that you're home. Most of it anyway. I had the same thing happen.

Was that your first Remicade infusion? Hopefully between the steroids you had in the hospital and the Remicade you'll start to feel better. Fingers crossed for you especially with that vacation coming up.

Hope you feel better soon.
Posted 10/12/2014 8:52 PM (GMT 0)
I'm so sorry geeker, but think about people who sometimes have such horrible accidents and somehow manage to get over everything and get back to normal life. UC is constant ups and downs so i'm sure that step by step you'll start recovering strength and soon you'll say "Aloha" to us all here :)
Posted 10/12/2014 10:21 PM (GMT 0)
Geeker I'm so sorry you're going through all this! Eight days in the hospital?? It must be wonderful to get out. The best part is fresh air. Clean, doesn't smell like disinfectant or other people fresh air!

I really don't like that bloated feeling from edema. After being sedentary with fluids constantly running I remember my ankles disappearing, feet looking like potatoes and my toes like grapes. Even walking a little the tops of my feet and fluid that gathered in my back would jiggle! Ewww! The Lasix will help, but in the meantime try moving or walking as much as you can.

Stay strong geeker. Focus on getting better and your awesome Hawaii vacation!!
Posted 10/12/2014 11:46 PM (GMT 0)
Thanks for the words of encouragement. Am able to get practically no sleep. I'm supposed to get a priority appointment with GI tomorrow, and husband will have to drive me.

Speaking of the husband...I told him today that I want no life-support measures...just-in-case it gets to that. I'd rather go out sooner than take all of our money with me to the grave in hospital bills.
Posted 10/12/2014 11:47 PM (GMT 0)
Oh, and yes, that was my first Remicade infusion, same day as my FMT.
Posted 10/13/2014 12:21 AM (GMT 0)
I see in your signature you have severe pancolitis. Have you considered surgery or gone for a surgical consult? I had severe pancolitis as well and in the end, surgery was the only answer (and only option left for me). It's been a God send....definately a blessing in disguise. I was 41 when I had my surgeries. Sometimes it's good just to be prepared if the time comes and have all the info and knowledge you need. Making rushed decisions while be hospitalized is never good.
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