In Johns Hopkins Hosp-long but pls read

I  havent written for a while.  Well i had enough and was admitted to Hopkins via my old doctor here.  In short here is my history.  Diagnosed 20 years ago with colitis.  Took azulfadine here and there and got thru attacks fast.  A few bouts with pred back then but overall minimal disease.  A bit over 2 years ago things started the same way.  Bleeding, d, cramping...Was put on Pentasa.  The attacck never went away.  In Dec 06 my colonoscopy changed me to crohns.  Used all the topical meds sine my disease is 15cm into the rectum.  Nothing got me better.  Went to a new doctor in March 07 and another scope.  Switched me to collozal.  No help...Continued to get worse and started in July 6mp.  Was up to 125 at one point however 6mp never seemed to work.  (Im now down to 50 mg cuz i think its a waste in the  first place. I did remicade in Sept and got maybe 2 somewhat better weeks from it..  The second time, at 9 weeks i got nothing.  My doc didn't do the 0,2,6 week routine to start remiade,  Tried lialda and nothing.  All the while trying topicals all over again.  Did pred at 40 mg for almost a week but couldnt tolerate it plus i saw no improvement.  Things got even worse in july.  Still on 6mp but im miserable.  Bleeding, mucous, cramps, constipation, rectal dry heaves, urgency (like 50times a day of just mucous and blood), gas, leakage (and sometimes more than leakage which is GOD awful for me) , pelvic, urinating, and vaginal issues from inflimation.  I felt like my insides were coming out.  The sensation of the swelling, pulsing, throbbing was all around, front and back.  I could not be on feet long at all.  ...(You get the picture).  I woke up and realized if i dont eat i can minimize my symptoms so i started limiting my intake.  Felt alot better that way but obviously I cant live that way.  Also, i would occas binge (like bad) because i started getting wacky with limiting/controlling my food.  Anyway thru this lost about 15 lbs in 6 weeks.  Im 40 and 5'3" and went from 114-99.  (Gotta admit i like being thinner).  My quality of life became very sad.  I managed to still work out in the morning somehow, just for sanity i guess.  I did nothing the rest of the day.  Couldnt make plans, new years was spent on my toilet with rectal dry heaves, chills, and tears.  So i said i have had enough.  This past Sunday as suggested by my old Hopkins GI  doc i went to the Hopkins ER to be admittied.  I am currently here.  The did a ct scan and ruled out fistula or abscess but showed severe inflimation.  Started iv of which ive been on ever since and iv steroids around the clock.  Had a flx sig which showed active severe disease up to 15cm. (My disease is rectal crohns).  Due to my constipation my old doc had me on mirilax.  That helped me clean out in the morning sine the rest of my urgencies were not productive.  However here at Hopkins, my doc took me off the Mirilax.  Added dyciclomie for spasms.  Also started me on cortifoam which ive done with no luck before.  Im still on the minimal 50mg 6mp, im taking ativan to help counter the steroids, and hes mentioned starting antbiotics.  Oh i left out that months ago i tried flagyl but stopped in 2 days cuz i bloated up something unbearable.  So here i sit (and cry).  Oh i did have remicade here yest and the plan is to start the typical way at week 0,2, 6, and so on.  Unless my last bout made me develop antibodies.  As of going off the mirilax, now i cant go at all.  I do still have urges but they are less and unproductive.  Im not eating really because of that.  But when i do eat the same ole stuff happens minus anything real coming out of me.  I dont know how long ill be on the iv roids.  You guys know whats typical timing?  When doc sends me home he wants me to continue on oral steroids.  That terrifies me.  They will have to keep me on ativan as i am in here.  So few thoughts...What  do you think in general?  Oh doc did have a long talk saying we could try a bunch of antibiotics or methotrexate but not yet i guess.  He also said, as ive known, surgery for me means a bag.  He ended by saying none of this is 100%.  And honestly, im afraid i may never get better.  Im tired of having no life and all the side effects.  I want my old life back.  This consumes my every waking moment.  I was an active, outgoing, social uplifted person.  Now its all gone and i do nothing.  What should i do about the mirilax/constipation problem?  See what gets me is i think docs dont take in the full picture.  I have very slow transit and yet he has me on antispasm meds now and i know that can only slow me down more.  Im so sorry to ramble and complain.  Seems that's all i do here but you guys are always here for me with great thoughts so...im ready to hear anything.  Sad in MD---Debbie

Sending hugs while your'e in the hospital. I sure hope you feel better soon,and get the life back that you once knew.My experience with the steroids (as a nurse and as a patient),once you get out of the hospital,alot of times they put you on a "higher" oral dose, then do a slow taper down,you do not want to wean off of Prednisone fast,well,you may want to,but it's not safe

Do you at least have a view of the harbor while your'e at Hopkins?? Sometimes just looking at the water decreases my stress

Keep us posted

Of course, going w/o true food w/a pred appetite isn't a picnic. Thank goodness I didn't have to deal with THAT! But you do get hungry on TPN and that's frustrating if you can't have anything but liquids by mouth. But sometimes trading pain, nausea, constant diarrhea for hunger is worth it.

I had an endoscopy, colonoscopy, and cam capsule study in June 07.  (However since July i have gotten 100 times worse)  Earlier this week here at Hopkins i had a flex syg and they did biopsies.  I also had a cat scan.  I am coming along here on the iv steroids.  They also have me on cipro, cortifoam, metronidazole gel, bentyl, 50 mg 6mp which i was up to 125 a month ago (that stuff does nothing for me), ativan (to help w/ the steroid monsters), restoril to sleep, and they suggest elevil in a very low dose to help with crohns symptoms.  I have held off taking elevil as i dont like to alter my chemicals that way.  In the past i have found, that for me at least, once i start one drug like that it snowballs to 3 or 4 needed.  My urges are way deminished here but i am also eating very little.  I think im just afraid but mostly terrified of blowing up from the steroids.  Is there a trick to keep that from happening?  I will be going home on oral pred and beginning my taper at about 40mg.  Steroids are my biggest fear with this whole disease.  How shallow is that?!  My flex syg showed severe inflamation up to 15cm to the sigmoid.  How does that sound to you professionals out there?  The doc sat with me a long time yest and really explained the options are limited with me.  If steroids dont fix this, its surgery and surgery for me is a permanent bag because of where my disease is.  I just want to get back to normal.  I want my life back.  My kids want me back.  I hope to be out of the hospital midweek so i can get working on my happy life.  I am an avid worker outer and this lack of exercise is really getting to me.  Please pray for me.