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Hi all,

I have Crohn's Disease (diagnosed in 94) and currently although in remission (for the first time really) I am currently having a TON of emotional problems.  I feel like I am more sick now than I have ever been before because it seems so impossible to fix things.  My GI mentioned in passing once (and then never elaborated on the topic or even finish her thought) that long term high dose steroid use can cause psychological problems that last.  Does anyone else have this experience?   I feel like having this disease for a almost 20 years alone could cause some issues but I am just not sure and I am tired of the cycling between feeling normal and then relapsing into this despair.  

 Reply posted for artlady13.

Hi I have UC and have been on steroids for well over a year now continually. Im on 10 mg of prednisone and two weeks ago was on Medrol packs twice consecutively. That made me a emotional wreck I hated it. It's helped the inflammation and settled down the ulcers but made me a wreck. I'm lucky that my work place has known me forever for I was quite the  b---h during the time of taking the Medrol packs. 
I will refuse Medrol packs in the future. 
My other Drs have told me of the long term effects of continual use and I too will be looking for different options once this flare up is in control. I'm sick of the roller coaster emotions with the steroids not to mention the 20 plus or minus pounds I gain on them. How many of you out there have two or three different size wardrobes like I do? This is getting expensive. I think my doctor will be getting my next clothing bill!

 Reply posted for tholzknecht.

i'm nancy, single mom, out of work with 5 herniated discs; also have anxiety; my scopes r the 20th but i feel i already know what i have, either crohns, colitis or god forbid cancer; can't eat/drink, worst nausea of my life, stomach pains/cramps severe, diarreha and the bathroom struggle that we all know too well; your story touched me and i am raising a son solo and have been for 14 yrs. and am still at the point mentally that i think i won't make it thru this; would love to chat and show support for each other; my email is nbeagle@twcny.rr.com; just know u r not the only single mom out there with these diseases.

 Reply posted for Nalini.

I feel the same way sometimes. It's like some things are worse than dying, like living with this pain and embarrassment every single second of every single day. Sometimes i get so frustrated. I miss my life. I miss hanging out with friends, going on trips, working, shopping, working out..everything my body won't let me do anymore. I feel trapped in my own body. I get so restless but too much motion puts me in excruciating pain. And everyone else can't seem to grasp what I go through on a daily basis. It's not just the pain, but the constant search for bathrooms. I can't go anywhere that doesn't have immediate access to one, which eliminates alot of places...outdoor festivals, fairs, downtown areas, long drives, the beach, the mountains, parks, and so on and so on... it's soooo frustrating!

 Reply posted for artlady13.

Hey it's not just you I have developed a fear of doctors over the years I have had crohns for over twenty years as well been on 80mg a day for years at a time two resections and am scarred all of a sudden. I need to go to the doctors but am afraid. 

 Reply posted for Nalini.

Reading your story, as well as the others posted, is heart-breaking.  This is mostly because I have been through it all as well.  The steroids are just a band-aid, in my opinion.  They hide the inflammation for a awhile, but all of the symptoms usually return when off the steroids.  They also usually cause horrible emotional anxiety, depression, and sleeplessness.  This is more common in women.  I have sworn off steroids for ten years and for a time I have been better with the biological medicines.  Unfortunately, I was hospitalized last month with an intestinal blockage.  Most of my colon was removed in 2003, so my health hangs in the balance. 

I hope that most of you who read this will persevere in getting Social Security Disability.  I had a paralegal helping me and she only got paid if I won my case.  Her payment was a small percentage of the disability payback I received when I won.  I was turned down at least once, as everyone is.  But if you research SSDI you may find that since George Bush's administration made it easier for those suffering with IBD to get disability.  Actually, it was his mother, who has another son with an ileostomy or colostomy bag. 

As for my recent hospitalization, I have been scared that I will not live much longer due to the complications I faced.  I am only 41, a single mom, two boys ages nine and six.  I know for certain that my anxiety and fear would not be as great if I didn't have children.  It is the uncertainty of their future without their mother that I am so afraid of.  Their father is not stable and they can only visit him with my supervision.  Therefore, I searched through some of the message boards to try to get some understanding, to not feel so alone, and to try to decrease some of my fear.  I don't know any of you that have posted, but I understand you.  God bless.

 Reply posted for vonachens.

hi, Iwas diagnosed in 09 an was better for a while it wasn't until summer of 2010 that i started to virgously flare and since than its been a living *** . I had to stop work and school. i am still fighting for government help which is still pending. the worst is what i feared so much. I am not responding to any medications other than steroids which i have been on since 2009. my only option now is surgery. my colon has become so diseased and my stays in hospital are constant. I cannot eat anything yet I blow up with the steroids . I cannot leave the home cause of the pain, light headedness and dizziness feel like i am having  a nervous break down. I feel like my life is over as if I am just the walking dead. I know there is life after surgery its just the quality of it that i am afraid of. they say surgery will make you better yet it holds so many complications specially for women. i don't want to live and be miserable. i use to be such a happy and goofy person. my sense of humor is barely there . i am always crying and edgy because of the steroids. i have tried herbal , home remedies  and all doctor medications and have failed all. i still don't want this surgery , but then again who really wants it its out of necessity . i am afraid my boyfriend will leave me .  i will never marry and have children. i know they are worst surgeries and worst diseases but i can't help the way i feel. i feel like i'm slowly dying...anyone who can relate . i would greatly appreciate shout out on your thoughts...it helps to know others are there.

 Reply posted for vonachens.

I agree about the holistic stuff, and the dietary stuff, and all the other things that are bound to cure me if I just have the courage to try them.  I am tired of people telling me that stuff, too, as I have tried everything and all that crud just doesn't work.  At least not for me.  But the pred. itsn't the answer either for me because I'd truly rather be sick to my stomach than be this emotionally unwell.  I am riddled with anxiety, nervous about life in general and now I am even leaving my house less and less.  I, too, am faced with having to leave my job because my symptoms of both Crohn's and depression/anxiety are out of control.  I know that I am not but I feel so alone.  I feel like I have no way to even really express myself.  I actually went to see a therapist but I can't explain anything right and it is just stressing me out more I think.  I feel like no one can help me and I am just getting swept up into this darkness completely out of control.  I feel like I need a vacation from myself.  

 Reply posted for artlady13.

I am surprised when I hear the emotional distress that is involved with this disease. The Doctor's and people who write about Crohn's make it sound like it is so easy to handle and stress plays no roll in making things worse. Of course I disagree with the Doctor's and have had stress related problems for years. 
Your comment about steroids hit home with me I am fighting Primary Sclerosing Cholangitis and I take steroids to control this and I hate them. I know they effect you mentally. I get so down and have little family support in fact my family makes things worse. Like having Crohn's and the symptoms, like I can control that. I have heard about long term problems when taking steroids. I hope things will get better but I have no reason to be positive. Still working but miserable most days. Have crazy people tell me about this holistic stuff. Drink a cup of tea and you will be cured. Wish people could experience the misery of this disease.

 Reply posted for artlady13.

Hi there!
  I, like you, have had Crohn's disease since the early 90's and am currently in a relapse that may have resulted in the spread of my disease into my colon.  I am emotionally spent.  I didn't realize that about the steroids.  It makes sense.  I guess I am just replying because I am suffering too and you need to know you're not alone.  I am having to file for financial support after getting on my own feet for once in my life, this is also devastating seeing my daughter will be getting married this October and I may soon be out of a job.  I try not to let this disease define who I am but it is hard to manage when you can't even take care of yourself and depend on others.