is there anyone out there?

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Regular Member

Date Joined Aug 2008
Total Posts : 33
   Posted 8/25/2008 1:48 PM (GMT -7)   
I am 44. Have had crohns since I was 6. It was misdiagnosed for the first five years and they didn't discover it was crohns until my intestines exploded at age 11.
I have had 37 operations since that first one and am down to having barely enough gut left to live unassisted...I have a living will that states that that isn't an option I chose to take.
it's back...since mid june. I am sooo freaking tired of it...just want it to leave me the hell alone...why doesn't it just go away? I have lost so much of my life because of this darned disease...
I am tired of being brave, tough, and all the other worthless terms used to keep me going...I'm none of those, I just want it to go away!!!!
my fiance left me last january cause she had "to think of my future"...I have had to quit jobs, avoid gatherings (why does every type of party involve food?), and am currently trying to graduate college but it's hard when you have surgery every darn year!!!
I don't know...I just know I am so very very tired of fighting this.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 8/25/2008 1:57 PM (GMT -7)   
I feel you, although my Crohns is no where as bad as yours. But all the little side effects of the drugs, disease etc can really wear a person down. I have had this stinkin disease for 33 years myself.

You have come to a great place to vent. We all understand what you are living with. Please don't feel bad about venting we are here for you. You will find alot of kind and supportive folks here.

Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Regular Member

Date Joined Aug 2008
Total Posts : 33
   Posted 8/25/2008 2:04 PM (GMT -7)   
it's hard for me to talk about it...I was raised not to bother others with my problems.
that time my insides exploded, my parents left me in the hospital for three months...only returned when it was time for me to go home. I've always pretty much done it alone, cause anytime I have tried to count on someone, they leave cause they can't handle it.
it's worse depending on someone and having them leave than doing it alone.

Forum Moderator

Date Joined Nov 2003
Total Posts : 7122
   Posted 8/25/2008 2:13 PM (GMT -7)   
Welcome to Healing Well! I'm glad you decided to post. We have a member that has a very short gut like you. I think you might find some commonalities with him. You can read Randynogut's story here: Click on the section "My Story" on the left of the page on the linked site.

Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 8/25/2008 5:40 PM (GMT -7)   
Hi Glad you joined us and your right about depending on yourself it seems sometimes we are alone in our personal world and it does take some to keep going. What kind of meds are you taking and was wandering if any are helping you now? At least here you have others to talk to and not be alone. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Regular Member

Date Joined Mar 2006
Total Posts : 195
   Posted 8/25/2008 8:38 PM (GMT -7)   
You've come to the right place. We can all empathize with your feelings here. Feel free to vent all you want. Sometimes it actually helps.

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 8/25/2008 9:24 PM (GMT -7)   
Venting is so important and you've been through so much. This group is wonderful and I hope you find some peace and comfort here!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl

New Member

Date Joined Aug 2008
Total Posts : 8
   Posted 8/26/2008 1:07 AM (GMT -7)   

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 8/26/2008 1:31 AM (GMT -7)   
Hi guy, and welcome to the site. We dont have all the answers here but we have a lot of caring people that do know what life is like with crohns. Stay a while and talks with us.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Regular Member

Date Joined Aug 2008
Total Posts : 320
   Posted 8/26/2008 10:08 AM (GMT -7)   
Mostof us ahve lost gut. Not to your extreme though. You have a right to be frustrated. Just stick around and let us help you keep going.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
When I am weak, then am I strong

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 8/26/2008 10:21 AM (GMT -7)   
I don't have Crohn's nearly as bad as you, infact mine is extremly mild, but I can relate to how your feeling. The meds alone stink and make us feel crapy, let alone this disease. I'm 36 and have been dealing with it 8 years now. I have only had two bad flares, one I have been dealing with since end of April now. But I have had problems in between where I had to go on meds and it just stinks.
I wish I had an answer for you. I too wish it would go away and never return!! :-(
I am sorry to hear your finance left you. That is too bad. You will find the right person out there for you. Don't let it get to you. I'm on my second marriage. My first husband was an idiot and basically when I got sick, he didn't want to "deal with me anymore" as he put it. Well ya know what, I didn't want to be with him either. If he couldn't be there for me and love me for who I am, then forget him. Second husband is so loving and understanding and always there for me when I am sick.
He will take me to my appointments, pick up my meds, etc...
So you will find the right one!!

Hang in there!
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 10mg this week
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin twice a day
No Surgeries

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 8/26/2008 10:35 AM (GMT -7)   
Oh my goodness, what a sad life you have led....Parents that left you so on and so on. BUT I promise if you come here we will
not desert you. We may not always be able to take your pain and problems away, but we will listen. I think I can honestly say
we are all good at that'
Here you're amongst friends...Please keep posting.....Together we'll ride the storm.

I wish you nothing but good luck from now on....Keep your chin up!!!

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 8/26/2008 10:54 AM (GMT -7)   
I really don't even know just exactly what to say..please vent as much as you need to. It's a simple fact that it is not healthy to keep things like that inside, and it sounds like you really need to get that out. I'm so sorry for what you've been through. It's really wonderful that you're still fighting though and you should know that everyone here is right behind you all the way. I know that it's difficult, but I've definitely learned so far that we just have to keep pushing ourselves no matter how terrible it gets..I'm sure you'll find the right person and I know you can finish college :) Just hang in there!!
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 8/26/2008 2:06 PM (GMT -7)   
Hi Just wandering how things are going today. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Veteran Member

Date Joined Jan 2003
Total Posts : 6131
   Posted 8/26/2008 8:18 PM (GMT -7)   
hey pleasenomore. welcome .. to qoute an old president.. "i feel your pain" . be not in the pool of misery but the pond of contentment. i know corny, but good. when you say living without assistance , what do ya mean exactly? medical ? personal? both? i do it . it aint that bad. better than the alternative. keep on truckin'!

Regular Member

Date Joined Feb 2005
Total Posts : 455
   Posted 8/27/2008 11:26 AM (GMT -7)   
I know how u feel..i was trained as well to find a fix no matter what you have to do while not asking for nothing from no one. I've also went through the divorce thing because of the disease...i think god gave us this all for a reason, you just have to figure out why.
SCD since 01, remission since 01, occasional Arby's breaks :)

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