In Johns Hopkins Hosp-long but pls read

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Jusdebbie
Regular Member


Date Joined Jul 2007
Total Posts : 70
   Posted 1/9/2008 4:02 AM (GMT -7)   
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

mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 1/9/2008 6:53 AM (GMT -7)   
Debbie,
I am so sorry, it sounds like things have been so terrible for you and now you're sitting in the hospital-confused, frustrated and depressed.
My thoughts on your situation...first and foremost I'm concerned about your emotional state of mind, I can empathize because I live with CD every day and I understand how it throws your quality of life in the crapper (sorry for the pun). People who do not know the pain and frustration we live with every minute of every day just can't understand what we're going thru...they can try but they don't know. Especially the docs who treat us...I wish, wish, wish I could find a GI to treat me who has IBD so he/she could genuinely empathize and fight for us, sharing what we live with every day. But please keep in mind that it will get better...I promise it will. It may seem hopeless now but whatever treatment plan you and your doc decide on may very well be the treatment that works for you this time. I know sometimes it seems hopeless, I've been there. But finally I am on a treatment plan that makes me feel semi-human again and it's wonderful. Even if, worst case scenario, you have to have surgery and an ostomy, life does go on. I have read many amazing stories on this forum from people who live with ostomy bags and how it has positively changed their lives. So know that even if that happens you must continue to live and try to get as much enjoyment out of your life as you can...grab it where you can find it.
I think that you will feel better when you have some control over your treatment plan, the worst part is the unknown about the future living with IBD. Once you take control of your disease and treatment plan that really puts your mind at ease, for me anyway. I have decided that I am going to control my CD, not let it control me. That's my 2008 resolution and I'm going to make it happen.
Please take care and keep your chin up...take control and know that you will find a treatment plan that works and life will get better. You are in my thoughts and prayers.
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/9/2008 10:39 AM (GMT -7)   

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 confused

 

Keep us posted


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 1/9/2008 10:57 AM (GMT -7)   

Hi Debbie,

I'm so sorry you are going through such a tough time. If you are worried about meds, please let your doctor know...s/he might have an answer that can set your mind at ease, or an answer that will let you know you are right to suspect the mirilax might not be right for you. Either way, at least you will know.

I don't know what typical timing is on 'roids. In my daughter's case, a single IV round of 60 mg solumedrol snapped her right out of a flare. After two more rounds, she was put on oral pred, 40 mg for a week and then tapering down by about 5 mg weekly.

IV pred is powerful...I'm hoping it will do the trick for you and give you badly needed rest and a chance to catch up on nutrition, a life, etc.

btw, Prednisone can cause constipation, but as you taper down pred, this side effect should lessen.   


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/9/2008 12:20 PM (GMT -7)   
At 5'4" and 99 lbs my doctor started talking TPN for weight gain. At 90 lbs she got really pushy about it and I agreed at that point. It rests the gut. It doesn't have to do hardly any digestion at all. Virtually none. Beats a liquid diet for resting the gut. Maybe ask your Hopkins docs about TPN both whilst you are still in the hospital AND in-home TPN after discharge. In my case, I only had to be on TPN 14 hours a day, most of those hours I was sleeping. I was giving a "backpack" and a battery pump so I could actually go out and about w/the TPN if it was necessary but I'd start the TPN early in the evening so that I was done fairly early in the morning and didn't need to be on it when I went to too many places. They formulated my "recipe" for the TPN via a blood draw every week to try to maintain a 1-2 lb gain a week.
 
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.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 1/10/2008 1:17:02 PM (GMT-7)


Driver37
Regular Member


Date Joined Jun 2007
Total Posts : 93
   Posted 1/9/2008 8:59 PM (GMT -7)   
Sorry to hear of your situation but you can be thankful you're able to get treated at such a premiere place like Johns Hopkins. I know that may be no consolation at this point, but maybe one upside.

I'm not familiar with a lot of the meds you mention and haven't had any constipation problems. But I have had the problem of being on steroids and being hungry all the time but not being able to eat because that meant going to the bathroom and I wouldn't have been able to work. So I experienced a lot of the binge episodes that you described.

I'm sure you know that surgery should be the last option. But if comes down to that, I'm sure that there are many here who can testify that having a bag is definitely not the end of the world. Many have found great relief and gotten their lives back with a stoma. Of course, there are the inconveniences but many are able to carry-on just as normally as they would have otherwise. And they are actually able to enjoy eating again. So don't give up hope whichever course you take.

LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/10/2008 6:35 AM (GMT -7)   
How are you?? I sure hope your'e feeling better :-)

Jusdebbie
Regular Member


Date Joined Jul 2007
Total Posts : 70
   Posted 1/11/2008 5:01 AM (GMT -7)   
I do think its getting better in general.  The trips to the batroom are way less.  However, for some reason i have no appetite and i am barely eating.  I am on a thicker concentration of iv apparently (but not tpn) so maybe thats why.  They are slso givng me 2 ativan every 6hrs to help with the "pred monster"!  Im doing cortifoam agan and they hae mentioned a metrondizol (sp) cream but i have yet to see that.  Today they started me on rifaximin too.  Oh and they gave me cirpo last night so add that to the list!  I think i should get off the measly 6mp that im down to 50 mg since it never helped even when i was at 125 mg of it.  I did remicade here and plan to continue with it in 2 and 6 weeks.  My old doc did it to me in week 1 and again in week 9 so it dd noting and possibly built up antibodies.  I have a new problem tho.  Although prior to coming here my bowel urges was so urgent that often a few times a day a little muscous and wet bm leaked out in route to the bathroom 4 feet away.  Now i am experiencig that with urine.  It comes on so suddenly and even with being so close to the toilet a lot more begins to come ot before i make it there.  This is very scary.  In fact i have spent alot of time crying here at the hospital having my own pity party.  All the "what ifs" ya know?  My quality of life has to improve and the doc said the bag is an option down the road.  Im on my 6th day of a pred iv called methoprenisolone 40mg which is apparantly stonger than 40mg in a pill form.  Anyone know that translation?  Also what would my taper be, he mentioned fast cuz he knows how opposed to pred i am. Thank god i havent beefed up yet cuz thats my biggest fear.  Is that delayed sometimes?  And when you finally get off all pred does the fatness go right wawy?  As for the blaadder thing, i have asked them many times to look into that while i am here.  I have loads of bladder and vaginal pressure.  See, prior to coming here when i was in the bathroom with rectal dry heaves, i fely alot of mingling btween my rectum, pelvis area, and fagina.  CT scan here shows no fistula and felx sig showed severe inflimation to 15cm just up to the base of the next area of which i forgot the name.  They also put me on dicyclomine 2 pills 4 times a day which i guess is an antispasmatic.  But i have a comcern here.  I have a very slow transit system and was told by other docs this could slow it down even more.  Also, i am a constipated person that til i got here relied on 1.5 caps of mirilax but they took me off it.  That used to give me some good solid relieving BM in the morning.  So now all i go is pepples, blood and mucous.  That cant be good for me but he must have his reasons.  Also, the doc mentione a low lever of elevil (way lower than whats used to treat depression) claiming that some studies show that hels.  Ever here of that? Oh also I was put on on cyproflaxasin which just started yest too.  In the mean time, i just cant eat.  I dont know why.  Originally i thought it was mental because being off the mrilax i thought anyting i ate now would stay in me (and it kind of is) but seems again my doc has reasons for me being off it.  I think it might be that he thought it could ave been contributing to my urges.  Oh, my stool sample for lactoferin(sp) was positive.  Red blood is at 34 feritin 46.  So an you tell me your toughts?  Explain what some of these dugs are trying to do, if there are too may in the mix, Anything else i should ask the doctors?  Oh does the iv steroid puff u up less than the pill form.  By the way seems my disease is mostly rectum, and therefor causes such urgent falls sensations.  I ogotta get my life back
 
Thanks for listening.  Im just so lost and sad and know you guys have great suggestions, experience, strength, and just an overall way of helping sickies like me get thru this nightmare.  XXOO

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/11/2008 9:17 AM (GMT -7)   
Evidently there is some basis for the suggestion that low dose Elavil does have some pain relieving properties as it is often scripted to patients encountering a painful bout of shingles and even for post-herpatic-neuralgia. It didn't do diddley-squat for me when I had that extremely painful bout of shingles even when they tried upping the dose.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1205
   Posted 1/11/2008 1:00 PM (GMT -7)   
When was your last scope to rule our colon cancer?
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


Jusdebbie
Regular Member


Date Joined Jul 2007
Total Posts : 70
   Posted 1/12/2008 4:10 AM (GMT -7)   
Sugar,
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.

Jusdebbie
Regular Member


Date Joined Jul 2007
Total Posts : 70
   Posted 1/12/2008 4:18 AM (GMT -7)   
Oh one last question...Is there ANY trick to tapering off pred faster and easier?  There is no way ill make it the way the doc suggested.  PLEASE tell me there is. 

Jusdebbie
Regular Member


Date Joined Jul 2007
Total Posts : 70
   Posted 1/12/2008 6:53 PM (GMT -7)   
Well doc this morn says he will do another flex syg Wed or Thurs so guess what that means?  Im here til then!  In the meantime i am not able to eat much still and im not sure why.  I have no appetitie which is new for me as of coming here Sunday.  Dont know if it mental, fear of puffing out on pred or what,  But boy am i thirsty.  I am drinking over 3 liters of water a day and my output is good too.  I was on a drip at 125ccs til this morn when they cut it down to 20 just so the iv steroid was going in with something still.    Heres what im taking... remicade (last Tuesday), 50 mg 6mp, cipro 500 2xday, multivitamin, probiotic, bentyl 20 mg 4x/day 30 mins before "meals", 2mg ativan every 6 hrs, restoril 15mg to sleep, lisinopril 10 mg, cortifoam, metronitazol cream.  Ahhhhhhhh thats alot!  My main question is should i add the elevil to the mix?  They suggest it.  If you havent figured me out yet, i am a super challanging case here.  The doctor told me this morning that i have to stick this out because my other option is a permanent bag.  He says this has been brewing for years but just came to a head in the last few years and even moreso since July.  THANK YOU
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