I'm so scared..... I just got home from the hospital, please help.....

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Veteran Member

Date Joined Oct 2005
Total Posts : 1245
   Posted 4/12/2009 3:51 PM (GMT -6)   
I have been in the hospital the past three days for an upper respiratory infection and Crohn's flare.  It was so challenging being in the hospital for me because my panic attacks are so severe.  It was the longest 3 days of my life.  I am 2 weeks late for my Remicade because of the infection, so I'm flaring horribly.  The gave me MANY bags of IV's with a lot of potassium (it was 2.9)  They gave me IV steroids and increased my oral steroids to 20mg.  They also treated me with Zithromax for the URI.
I cried like a baby the whole time I was there.  The steroids make me crazy, and my Xanax didn't seem to be helping.  I got home yesterday and have been crying ever since.  I have NEVER felt this sick in my entire life.
I am EXTREMELY weak, thirsty, no appetite, shaky, diarrhea (a little better,) and my legs ache SO BAD.  I feel like I am walking on toothpicks.  I can't get the Remicade until the signs of infection are gone.
Also, even though I have no fever, I just SHAKE with the chills. Has anyone ever been this sick?
I have so much more to say, but I can't see through the tears.  I love you all.  I am so scared..... cry
Diagnosed with Crohn's March 2006, Fibromyalgia Nov. 2008, Anxiety Disorder since childhood
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 10 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg three times a day, 1mg at bedtime (for anxiety attacks)

Veteran Member

Date Joined Feb 2003
Total Posts : 1811
   Posted 4/12/2009 4:32 PM (GMT -6)   
Julie - ((((HUGS)))) You are really going through a rough spell. I have been there and it feels HORRIBLE! Do you have anyone who is there to support you? A spouse? A parent? A relative? A friend? I have found that when I am at my very weakest it helps so much to have someone to help me get through it. I know you feel scared, but try to reassure yourself with the things that you know are true. You have doctors who will help you. This flare WILL come to an end, even if you don't know when that is. You ARE strong enough to get through this, even if you don't feel like it right now. Being physically wiped-out takes it's toll on our emotions, which is totally understandable. I find that it helps me to do the things that make me feel better - even if they are just temporary - take a bath, listen to some quiet music, watch a fun movie, whatever. We are here for you. Keep your chin up girlie. And don't be scared - you will get through it. I know you will. HUGS!

Mrs M
New Member

Date Joined Mar 2009
Total Posts : 14
   Posted 4/12/2009 4:35 PM (GMT -6)   


I have just been diagnosed and didn't feel as physically sick as you honey, however emotionally I know how your feeling this is too too much sometimes...love and hugs




Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 4/12/2009 4:36 PM (GMT -6)   
I'm so sorry you're feeling this way Julie.... when I am in a terrible flare I often still tremble with chills even without any sign of fever. For me that's a "normal" bad flare symptom. And I SOOOO understand the emotional distress of being so sick and in the hospital... steroids make me nuts as well, and I just cannot seem to control the tears sometimes.

Hopefully the Zithromax is one of those 5-day packs and you'll kick this respiratory thing and get your Remicade soon! It sounds like you need it badly. I'm glad they pumped you full of fluid in the hospital, too, because when you're as bad off as you sound you can dehydrate so quickly... definitely keep tabs on your hydration and make sure you don't need to go back for more fluid before your Remicade. It's good that you're thirsty though - so keep drinking what you can and know is safe.

I know that you're in a horrible place right now, but you WILL get through this! Us crohnies have some of the worst times, but maybe it makes us all the more greatful for the good times? I don't know. It sounds cheesy, but it's definitely the case for me.

Keep fighting the respiratory infection and push, push, push for them to give you that Remicade as soon as you think you're ready! Don't let them drag this agony out. You'll get there. I'll be sending good thoughts your way in the mean time.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (started 2-12-09)
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Prednisone free, again! WHOOPIE!

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 4/12/2009 5:21 PM (GMT -6)   
Wow Things sound like the lowest of low right now. I hope that the up turn comes soon. I second all the encouraging words that have been shared. See what you can do to take advantage of a bad situation. Mine is Movies. (Too sick to do anything else) so leave me alone and let me be!! Also I have learned to knit since I have to sit around a lot and I have some cute scarves.

I cried tons after my first hospital flair and thought my life was over. unfortunately you keep breathing and life does go on. You have to go with it. If you have faith like I do you know there are things to learn and ways to get stronger.

Get lots of rest because that can help too.

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 4/12/2009 5:27 PM (GMT -6)   
I had a horrable URI that lasted about 3 weeks. Mine was viral so no anibiotics. I did have lots of rx cough stuff. I know I also got really panicky during my last visit to the hospital but it was because I had a bad reaction to the IV compazine. Did you tell them how you were feeling? As soon as I did, I was given enough ativan and benadryl to sedate a cow and went right to sleep. Also, I feel very trapped when I have an IV in. I'm sure you felt the same. Deep breaths. You are out now. It can only get better from here.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

Regular Member

Date Joined Feb 2009
Total Posts : 128
   Posted 4/12/2009 5:29 PM (GMT -6)   
Hey Julie,

I envy that you can still cry. I stopped giving Crohn's any tears when I was fifteen, and sometimes I think that makes me stupid, not tough. I know it can get real low, real bad, and I don't want to throw any advice at you other than saying what ever happens, we love you and support you hear.

Hey look, I'm tearing up now. I guess it's a start.

I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 4/12/2009 6:07 PM (GMT -6)   


I had to stop in here as you said you had posted here about your hospitalization............... I am so sorry you are so sick. You have been hit with a double whammy...  Your URI and Crohn's, so you have every right to feel scared and anxious. 

Many medicines can cause anxiety or make anxiety worse. I am sure you know that Steroids, such as cortisone, dexamethasone, and prednisone are notorious for causing anxiety.

Feeling anxious and restless have been reported as side effects by patients taking Zithromax.

Do discuss your meds with your physician and also see my post to you in A & P.  (((((((HUGS))))))))

Gentle Hugs toyou my friend........and know I am right here for you.



Kitt, Co-Moderator:
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Peace does not dwell in outward things, but within the soul
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Regular Member

Date Joined May 2004
Total Posts : 61
   Posted 4/12/2009 10:24 PM (GMT -6)   
Hi, so very sorry to hear you are doing so poorly. I know so much of how you are feeling is from the flare, but it sounds like the panic has really taken over and needs to be dealt with first before you can even deal with the other problems. I also have severe panic attacks when I am hospitalized, because when I was a little girl I was viciously molested while staying in the hospital overnite by an orderly, and to this day, being in a hospital sets off major panic attacks and I can't stop crying and shaking. Even when I get home, I cry and shake, at least for the first day. You say the xanax isn't helping, it sounds like you need a more permanent anti-anxiety med, an everyday one, I am on Effexor, and it has helped me immensely. Now when I need to go to the hospital, the extra ativan I may need will do the trick, but it wouldn't before. Please try and get help for this.... Good luck, my heart goes out to you, this stress is going to keep you sicker until you can calm down.
Crohn's, Enteropathic Arthritis, Fibromyalgia, Daily Migraine

Humira, Entocort, 6MP, Pentasa, Topamax, Effexor, Ultram,
Sed rate sits in the 70's and can't seem to get it down

Regular Member

Date Joined Mar 2009
Total Posts : 318
   Posted 4/13/2009 10:19 AM (GMT -6)   
turn  Hey Julie sorry to hear your troubles life can seem to be the worst at times like this but remember that liife always goes on you will pick yourself up and dust yourself of and get through this thing one more time you know why cause you can thats why and you will cring gets the hurt out and takes away the sting but never resolves anything except gives us puffy eyes and dehydrates us more trust me i cried buckets but its not worth it dont give your disease the power to bring you down,do anything run around the house naked if that helps do something to make yoursels laugh we all have that ablity we are silly girls and can laugh and smile at the sillest things out there,i know your at the lowest point right now but there is light at the end of the tunnel,try getting ahot bubby bath with some candles and some hard rock to relax and rent a funny movie to get yourself you again i love (Drop Dead Fred) its really old but so funny i watch it every time i am down.I hope you get well soon i just got out of the hospital 5 days ago i hate it to seems like things are never going to get bettter and life is passing you by but push on through those feelings crohns can bring you down stick you in a sad place but dont allow it do this for yourself everytime your feeling down and smile take my energy take my strength take my funny bone its yours till you can smile on your own again.I hope you feel better really soon Julie feel the warmth of the hug i am sending you and throw away the klennex please.Lots of Love Your Way Jenn. yeah
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.

Regular Member

Date Joined Apr 2009
Total Posts : 51
   Posted 4/13/2009 11:18 AM (GMT -6)   
Onthecan has it right! Shortly after being diagnosed I had my first surgery and was not expected to make it. I spent 5 days in intensive care and 21 more days in the hospital. But the happiest day of my life was the day I was able to shuffled (IV pole in each hand and a nurse propping me up) to the door of that room. When I looked out that room and looked down the hall and saw a window at each end I knew I was going to make it. That moment ranks higher than my wedding day or the birth of my boys. I have never told anyone this before (especially my wife or boys). But when you are at your lowest it can mean that the best is to follow. Keep on keeping on and it will get better!
Over 30 years experience! Dx 1976, surgery every seven years, the only effective long term drug has been prednisone.

Regular Member

Date Joined Mar 2009
Total Posts : 318
   Posted 4/13/2009 11:54 AM (GMT -6)   
tongue  Hey fin i think thanks for sharing i had spent alot of time in ICU myself there is always something that keeps us going either a window in your case meaning that is the way out and i made it through the most diffuclt time in my life,us crohns patients are tough you know the stronest around we know deep down we will pull through this thing one more time i have a wonderfull family and a very understanding husband however there is days that he just dont get it when i am to tired to make dinner he knows its near hospital time cause i wont let this disease stop me and when it does and the hospital is near i know when i go in what is going on and how long i am going to worry about this well stress makes this thing rage so rage on i say you wont put me down ever i am strong and i will make it and i always do cause i am one step ahead of that thing called crohns.Your Bowel Buddy Jenn. yeah
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 4/14/2009 7:29 PM (GMT -6)   
Hi Julie I am hoping you are feeling a bit better by now. I have had some rough times too and I made it threw .Hope you can throw a blanket in the dryer and wrap up. I know pred. made me a bit upset too. Hope you have someone to help you ,my legs pained bad on the Remicade so maybe that is what causes it.Got any gatorade to drink? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~

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