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I am new to this site, I really just need to vent and could use support from people who understand what I am going through.  I have had some symptoms for years, in the last two years, they have gotten progressivly worse.  I saw a new GI about 1 1/2 yrs ago and he diagnosed acute/chronic ileitis with suspected Crohn's.  I have been on many differerent meds.  I have had isssues at work, many quick exits from meetings, mysteriously having to leave in the middle of the day because I had an accident.  My peronal life has also suffered, I have some family members that just don't understand. 

I was on Pentasa and had just started Imuran last November and started having pins and needles feelings all over my body.  I ended up having to call 911 from my car one day because the pins and needles turned into me not being able to move my hands, arms and legs.  It turned out that my potassium and magnesium were critically low, stayed 4 days while they replenished me.  They started me on 40 mg of prednisone to control the diarrhea and pain.I have not been able to get down past 20 mg of prednisone without having severe diarrhea, I am back up to 40 mg.  I had gone back to work after my hospitalization, only to get a cold and ended up with a severe infection and a white blood count of 20.7, almost landed me in the hosp again.  I have been working from home since. 

Next is Humira, after a month of getting approvalss I was finally supposed to start this week, then I got another cold and my white count is sky high again so I have to wait.  I know there are risks but I am anxious to get started and see if it will help.  The prednisone is killing me with hot flashes, moodiness, hunger, and weight gain. I am incredibly frustrated. Every new med, I seem to get better for a week or 2 and then right back to the same symptoms.  I rarely leave the house these days, I am either having diarrhea or I am just too fatigued to do anything.  It is getting depressing. I appreciate any advise or support!

 Reply posted for smwebb.

glad you're venting.  it's important to do that once in awhile.  i've had 20+ years of crohn's. during that time, i've had a permanent colostomy - damned crohn's destroyed my rectum, and other surgeries.  current meds: imuran, humira, entocort.  two recent hospital visits (my spa days :) for partial small bowel blockages.  been on all the other meds in the past.  i remember having a blockage while i was at work (several times).  i'm on the floor in the fetal position just trying to breathe.  employees walk by my desk not sure what to do/say.  boss called 911 everytime.  even after those events, coworkers still didn't get my illness. 

currently i'm a stay-at-home mom with 2 kids.  i've learned to be honest with coworkers, friend, even students (i used to teach and currently sub) when i need to sit down or leave the room, or go home.  i try to be delicate, but i let them know i have crohn's and am in pain that tylenol won't help!  i even tell them it's a chronic inflammatory bowel disease.  get over being embarrassed.  life is too short.

learn all the *** jokes.  look for the positives of the disease.  be thankful you still have your ass and it works somewhat :)  i must admit i do tend to be quite crass when discussing crohn's because it has been evil in my life.  here are some of my positives:  i don't worry about being sodomized.  i'll never have *** stains in my underwear.  my surgeries give me an excuse not to have flat abs.   i'll never be overweight.  i'm a cheap date since i can't eat much solid food.  my husband made me realize i am "super hot" sexy despite the bag and scars.  mental attitude beats physical appearance.

best of luck - ginn

 Reply posted for PyroZack.

Pryo - Sorry I went to reply and hit report abuseby accidnet.  i had a colectomy for  my UC back in 1997.  Now on Friday I get results and opinion that will porbalby lead to a Crohn's disease.  It is so hard to find anyone who understands. I have been on disability for a long time then went back to work after I thought I was okay. 

to the original write I can only say be sure to wear dark underpants and dark pants.  That sounds so stupid but it does help tohide soem accidents for a short while.  Also at work try to find someone you really trust to tell them wha tis going on. It may not help and even hurt but you haqve to tell.  Otherwise they think even worse things.  I had a job that everyone thought I was an alcoholic. 

 Reply posted for smwebb.

Ugh...Im so sorry.  Ive had it for nine years now and I know what you meant.  During the start of it and when they kept running new meds in to me, I would get better for a couple weeks and just get slammed again.  I got it when I was fifteen (twenty four now) so Ive not had to be in the work environment and experienced leaving meetings, but for the short time I was still in school, I had to randomly run out.  Its kept me from being able to actually have a job and not be on disability and from going to college.

But life doesnt end here ^_^ I can only say that because I went through many dark years of isolation.  Family and friends dont understand the struggle unless theyve either gone through it personally or seen someone directly connected to them go through it.  I know that doesnt make the isolation easier, but...if nothing else, it helped me understand where they were coming from.

If you ever want to rant, you can text or call me at any time: 405-740-4630.  I actually have another friend who Ive gone back and forth with sometimes.  Thankfully shes gone in to remission.

Between having godly friends and a gospel community, video games, and time with God, Ive been blessed here lately and can tell you this isnt the end.  It sucks and I will not downplay that.  But it isnt the end.  :)