Steroid Reaction

[prudence-cat]

:tongue:Hi, I'm new to this forum. I was diagnosed with Crohn's Disease in 1996 after several months of problems. I Lost lots of weight and had lots of pain and constant "runs". They did some surgery to deal with anal fissures etc. and put me on steroid treatment. I had a stressful job and was struggling to care for my eldery mum whilst travelling for work and of course stress doesn't help with Crohns.

I was told I would need to have a large part of my colon removed but that I must have the steroid treatment first to build me up for the surgery. I wasn'[t looking forward to that but did some research and felt that it was a better alternative than what I was putting up with!

Anyway, before that could happen, I suffered terrible side effects from the steroid and was diagnosed with steroid psychosis. Basically, the steroids drove me crazy! It was so severe that I ended up having to be sectioned in a Mental Health hospital and spent 13 months as an in patient. It took some time for the medics to realise that the mental problems stemmed purely from the steroids and I had to have electro-convulsive therapy (16 sessions) and have to take anti-psychotic drugs for the rest of my life because my brain no longer produces a particular chemical.

However, the good news is that the steroids sent me into remission and although I have the odd flare-up (as at present), generally the CD is managed by Mesalazine (Asacol) 600mg daily and Lansoprazole 30 mg daily.

I know what I can eat now and so avoid problems in that way. I can't eat any fruit except bananas and pears because of the acidity, but luckily can eat most vegetables. Five years ago I was also diagnosed with Hiaitus Hernia and acid reflux (this seems common with CD sufferers).

So mostly I keep well provided I avoid stress; however, I get very tired and had to retire on health grounds from my job.

I think steroid psychosis is still relatively rare but would be interested if any one out there has had this experience.

 

[Crohn's 35]

Hi Prudence, welcome to the forum. There are alot of cat's in their name here, alot of cat lovers I suppose lol. I have never heard of steroid psychosis, but I do know we call it PRED brain when we do something stupid. It makes sense though, and really doesn't surprise me. Most people have their Crohns symptoms masked by Pred, but it comes back for most of us, when the taper is down to about 20mg. I too have a Hiatus Hernia, I always blamed it on the pred, I would get severe heartburn so bad it felt like a knife in my chest. I do use Nexium, but I also do an exercise to help aleviate my symptoms , antacid meds can cause calcium loss and so does Pred, so I eat smaller meals and chew. I also take good amounts of Calcium and Vitamin D3... just don't need another problem. I love bananas:banana: and can tolerate them well as well as veggies, steamed, but not raw.

Your stress is hard to keep low because you are looking after your mom and working, looking after yourself is enough work. Glad you found us, welcome aboard!!! Hope to see you join in!

 

[PeninsulaLil]

Welcome Prudence-cat! Yes, I have heard of steroid psychosis and have experienced it myself. This was many years ago and not Crohn's related, but I was put on a daily dose of predisone for over a year. It got so bad that I was barely getting out of bed, couldn't function and having hallucinatory waking and sleeping dreams. I remember my poor boyfriend at the time writing me lists of things I could try to accomplish each day before he went to work and I remember they were literally things like, 'brush my hair'. When I found myself banging my head against the wall, I finally figured out things were serious. I started seeing a psychiatrist and when I stopped the steroids, the world tipped back to normal. It was a horrible time. I know someone else who took steroids for a long period of time and also had a psychotic break. I believe the medical community is much more knowledgeable about this possible side effect from prolonged steroid use and predisone is prescribed more judiciously now.

Lilly

 

[Nancy Lee]

Hello Prudence and welcome to the forum!!

I have to admit I had never heard of steroid psychosis until
you mentioned it. It must have been a horrible experience for you!
I'm glad they realized what it was that was causing the reaction.

I too manage my Crohn's with Asacol 2400mg (3 800mg pills a day)

Stress does play a large part in the progress of the disease
and I think in time we all try to handle it wisely
and eat a nourishing yet someone restricted diet.

Once again welcome,
Healing Hugs~Nancy

 

[Astra]

Hi Prudence
and welcome

Gosh! That's some story! sorry you've had to go through that! I've been on Pred but only for 4 months, my gastro did warn me about the phychosis tho, he said whilst rare, some people have a chemical reaction to it.
hope you remain in remission now for a while, enjoy it, rest as much as you can, crucial for healing, glad you found us, and we'll see you around the forum
lotsa luv
Joan xxx

 

[Dexky]

Prudence I'm glad you posted your story. It's something else to consider should EJ ever need pred again. Hope everything continues to go well for you.

 

[MapleLeafGirl]

I have never experience that - thank God. It sound like you went through a horrible ordeal. I am so glad to hear that things are sounding up for you.

 

[Mountaingem]

Hi Prudence-I'm really sorry you've gone through so much! I have had panic attacks and anxiety disorders caused by prednisone, specifically because it caused a chemical imbalance in the brain. This is the second time in ten years I have had this experience, but I was on pred and MTX for nine months before anything started to happen. I am on medication for that now, but the doc says only for three months until my body goes back to normal. I hope things keep improving for you, both with the Crohn's and the side effects!

 

[Crohn's 35]

Hi Prudence-I'm really sorry you've gone through so much! I have had panic attacks and anxiety disorders caused by prednisone, specifically because it caused a chemical imbalance in the brain. This is the second time in ten years I have had this experience, but I was on pred and MTX for nine months before anything started to happen. I am on medication for that now, but the doc says only for three months until my body goes back to normal. I hope things keep improving for you, both with the Crohn's and the side effects!

MTX takes 9 months, my doc said up to 16 weeks, tomorrow is my 13th shot and if I get sick again for a whole week...foget it , I am stopping, because there is nothing happening. :yfrown:

Sorry to hijack:ybiggrin:

 

[Sapphire]

Me Too!

Hi,

I've been living with Crohn's for about 10 years, and for the past 5 I've been off all my drugs and feeling fine.

However, this year my Crohn's has gone crazy - I was nauseous, couldn't eat and in constant pain. Eventually, I was admitted to hospital and pumped full of intravenous and oral steroids. I had been on Prednisone before when I was first diagnosed and it made me feel WEIRD then, but this latest admission was horrible.

Everything started becoming REALLY symbolic while I was on the 'roids. Every name, every conversation, every look had multiple meanings for me. I was discharged from hospital but ended up back in after a few days because of my steroid psychosis. They were thinking of putting me in the psych ward, but luckily I convinced them not to. I thought I was channeling someone from a foreign country and started getting involuntary motions which I affectionately call my "Stevie Wonder head". At one stage I thought I was going to be the Pope!

This was a REALLY stressful time for me, because nobody could work out what was wrong, even though I kept trying to tell them it was the steroids.

I'm feeling heaps better in my mind now and am still seeing a psychologist once every couple of months. I find that you can get quite depressed with Crohn's especially if you are off work and out of the game for long periods of time. Sometimes I wish that it had an external manifestation so that people could see that I was ill and I didn't have to explain what the disease was all the time.

I'm hoping that my Doctor's will work out what's going on with my disease and to be on the mend soon, and I know they will never try steroids again!!