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LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/7/2009 3:21 PM (GMT -7)   
I just spent the day at the hospital after going into the ER for what I thought might be an obstruction. That CT scans showed a large build up of fluid, but on the bright side, little inflammation!!

I've generally stayed home sans pain pills and let these things pass regardless of how painful it is, but today was seriously unbearable. They gave me morphine and fluids...am still feeling bloated, and my stomach is making fussing noises at me...but other than that I am okay. The next few days are going to be liquid diet and my prednisone is upped to 40 mg again...kind of sad, but it's better than feeling like today.

Just wondering what others' experiences with this have been? I wasn't even sure if I should take a pain pill this morning (tried and it did NOTHING).
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/7/2009 3:26 PM (GMT -7)   
(((LMills)))

What did they mean, a large build-up of fluid? Where is the fluid?

Ivy.
Co-Moderator Crohn's Forum.

New meds thread


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 6/7/2009 3:31 PM (GMT -7)   
Hi sorry your having a rough time at the mo hope you soon feel much better sending good vibes your way Bev x

Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma
 No maintance drugs as such on B12 shots,iron syrup,loperimide, 20mg EScitalopram 4 anxiety.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/7/2009 5:31 PM (GMT -7)   
Apparently it is stuck around the ileum..I have most of my problems there anyway. Am feeling so much better right now, but I'm also a little funny from the morphine! Just bloated, but I think that will pass soon. No pun intended.

It took me forever to write that haha...thank you guys by the way. Your kind words and good vibes are definitely working!
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 6/7/2009 6:53 PM (GMT -7)   
(((LMills)))) hope the pred does the trick for you.
Do you have a followup with your GI to discuss the fluid build up - seems strange when you have no imflammation.
Jo

lenagirl
Regular Member


Date Joined Aug 2007
Total Posts : 44
   Posted 6/7/2009 7:06 PM (GMT -7)   
I'm sorry you were having such a bad day. Having to go back up on Pred can be super disappointing (after all the time it takes to taper down), but with any luck it'll have you feeling better in no time, so it will definitely be worth it. At least the CT didn't show a lot of inflammation, so hopefully things will stabilize quickly.
The only time I've been to the ER for my Crohn's was this fall when I had C. diff in the middle of a bad flare, was in unbelievable pain, having trouble keeping down anything (including the antibiotics for the c. diff), and just getting worse. In the ER they put me on morphine and IV flagyl. They admitted me basically right away, though, gave me a CT (lots of inflammation), and wouldn't let me leave until the c. diff was gone. The worst part was having to wait for like 2 hours in the ER waiting room while having the worst pain of my life. Of course I waited until I felt like I was dying to go in (which also meant it was the middle of the night). I almost kissed the ER nurse when he finally gave me some morphine.
21 years old, diagnosed with CD at age 18,
First major flare since diagnosis started in Nov. 08. Still recovering and mostly stable, but having trouble tapering Pred.

Current Meds:
Prednisone 12.5 mg, Azathioprine 75 mg (just started 5/03, but think it may be starting to kick in), Asacol, and Rowasa
Plus Vancomycin and Florastor for a recurring case of c diff.


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 6/7/2009 7:41 PM (GMT -7)   
LMills, wow lots of struggles. Hope things get better quickly for you.

I enjoyed reading your blog today. You write beautifully!! It is hard for me to explain my feelings and frustrations around this illness. I hope people read it so they can understand how it is to have crohn's.

I still wish I didn't have it and haven't got to the "growing from the experience" stage. I have some kind of remission going and on no meds, but now face rectum cancer surgery this year. Might as well have wasted away when I was really sick with a flare.

FLARE JUST GOES AWAY ALL ON IT'S OWN!! How does that work?? Wish the caner cells would do the same. Keep writing and when you figure it all out I will look forward to reading all about it.

Hey that's some great boyfriend and support you have. God bless.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/7/2009 7:42 PM (GMT -7)   
about the inflammation, I was thinking the same thing. Apparently the build up may be an indicator of inflammation building up soon if I'm not careful though. Possibly?..makes sense that way in my head anyway.

lena-I agree about the morphine. I wanted that so badly. I can live without pain killers, but today was definitely the exception.
And the waiting in the ER...before I ever went I just assumed you were always rushed right in, but last year definitely told otherwise. Thank god for good medical staff once you get in though!

I'm wondering where this puts me in the likelihood of having to get surgery though?..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/7/2009 8:31 PM (GMT -7)   
Er, and also, the doctor said something about the intestines moving things through, I can only assume he meant peristalsis, was not working correctly. Has anyone had experience with this?

Sorry i forget things..I am in a daze right now.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 6/7/2009 9:51 PM (GMT -7)   
One time I had what I thought was a blockage (felt like one), but the ER said something along the lines that my iluem had shut down. Is that close to what they said you had?

Lena, I know what you mean! After the many long and painful ER waits, I too wanted to kiss the nurse that finally gave me morphine!
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/8/2009 7:42 AM (GMT -7)   
Spooky-that is similar to what they said, but also said it was possible I have both. I called my doctor's office this morning and he should be getting back soon so...I guess we'll see. I have an appointment tomorrow morning.

What did they do to reverse that situation by the way??
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/8/2009 2:36 PM (GMT -7)   
Ah, okay, the nurse called today and ordered an ultrasound to be done tomorrow morning to rule out ovarian cysts, but at this point they don't know what it is.
There is just fluid build up, and it feels like there is just something inside of me. Like if someone just put any object in the abdomen and there was that uncomfortable feeling when you move around.

I won't know for sure obviously, but does anyone have any experience with anything like this?

I am having BM's so it's not that peristalsis completely failed (if that is even a possible) or that it is a complete obstruction. I just feel full but not in the way that you have just eaten...

Speaking of which, am on a liquid diet again hah! It seems harder to find something to eat than before. i don't know why. If anyone has any ideas I would be really grateful. Right now I am drinking kefir and soymilk. That is about it..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 6/9/2009 11:28 AM (GMT -7)   
Lmills, I have done ER several times the last few years. The pain, the confusion, having to make decisions, and having to drink the barium contrast while throwing up like a mad dog is probably one of the worst experiences. It is terrible, terrible and I hate the ER, hate missing work, and hate having to explain to my boss and hate having to put my family through it every time. Well, on good days like today (so far) I am happy to be alive and functioning on other days my thoughts are very dark.

I can't help much with diet, because I don't really regulate my diet (I generally stick to a low-sodium, low-oil/fat, vegetarian diet--I have been on this for a while, but sometimes I overindulge because when I flare I cannot eat or drink anything.). The nature of my CD is such that it does not respond to anything but steroids. You have probably heard of SCD by now...that is something to look at.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/9/2009 1:12 PM (GMT -7)   
Yes, I am using the SCD as a basic guideline but am unable to follow it strictly due to insufficient time, funds, and energy...someday when things get a little better (do they?..).

They said either it is either/and because of a forming obstruction or ruptured ovarian cyst. The latter because of the amount of free floating fluid the CT scan showed in my abdomen.

In other news, they wanted to confirm this with an ultrasound so I went in and found out my insurance had reached the end of its term. It would have been nice to know this before I went in. Or you know, so I could have refilled my omeprazole as soon as possible.

The only who knew when this could happen was (surprise!!!) my dad. He knew I was in the ER too, but did not call. Yes, he is back in the states. No, things are not any different. Except that we communicate even less and he seems to care even less.

Should I be taken aback? I am a little, but I wonder too if I should have seen it coming. Is it so much to expect a 'hey how are you doing?' phone call?..

Yes, I know I am whining a lot, but even if he didn't call to ask how I was doing it would have been nice to know I didn't have insurance..

Wish me luck in everything else I suppose. I don't know what this next couple months will be like, but I am going to be optimistic.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 6/9/2009 2:58 PM (GMT -7)   
I really believe the worst thing about Crohn's isnt the pain, diahrrea, the nausea or the many other symptoms but the sadness, anxiety, and hopelessness that creeps in when you don't know what's next. That's the way it is for me.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade, B-12 injections and iron. Feeling much better!
God Bless. Tony


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/9/2009 3:19 PM (GMT -7)   
I totally agree..it's hard not being able to have a definite plan.

And I think in the back of our minds, as much as we try to be positive, there is always that voice pleading 'please, don't ever let me be that way again.'
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."

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