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PrednisoneJunkie
Regular Member


Date Joined May 2009
Total Posts : 33
   Posted 5/29/2009 11:35 PM (GMT -6)   
I am in the first week of my tenth flare and just discovered this forum. I have always felt very lonely and desperate with this disease, as if no one around me really understands what I'm going through. The agony, the depression, those close-calls with death...

My first flare put me in the hospital. I was in college at the time. I was 2 weeks in, 20 lbs lighter, and severely dehydrated when I finally got referred to a proper Gastroenterologist and diagnosed. The routine treatment since then has been Prednisone for flares and Asacol for maintenance. Luckily I am not allergic to the 5ASAs, but I am skeptical as to how well they really work. When I'm on Asacol, I tend to get a flare once or twice a year, and twice I've tried going off it, and both times was fine for 6 months.

The typical routine when I get a flare is to call up the nurse and order a course of Pred. He starts me out on 60mg and tapers down for 6 weeks. That usually knocks it out within a day or two. Pred is wild and wacky stuff. Most times it acts on me like speed--I wrote my entire dissertation on a single course of the stuff. I often go on a cleaning spree. Sometimes it makes me psychotic and paranoid. I have learned to be careful to keep my mouth shut when I'm so medicated. As fun as this can be, I know it's supposed to be bad for me long-term (deteriorates bones and joints?), so I have been looking for alternatives.

I am not ready to try immuno-suppressants (they're worse, right?). My last flare (Nov-Dec 08) was not a bad one, and almost by accident I discovered that probiotics seemed to lessen the severity of my symptoms. Instead of starting the Pred course, I started taking 6 times the amount of probiotic recommended on the bottle, and within a couple of weeks, I was back in remission. Maybe it was just a fluke; I don't know. I'm currently having another flare, about a week in, taking the priobiotics and it's not getting worse, but it's not getting better either. I'm about to give in and call the doc.

There appear to be some great ideas on here I haven't tried, diet-wise. I'm really excited to have a new place I can come. Please drop me a reply and say hi. Is my treatment typical? Am I a typical case? Is it normal to have suicidal thoughts?
27 / Male
UC Diagnosis May 2003
Survived 9 flares
Used prednisone, asacol
Alternatives: have successfully tamed 1 flare and counting without prednisone with massive doses of probiotic (along with asacol)
Diet: paleolithic (but I often cheat), non-smoker, non-drinker
Other problems: Childhood asthma


mumbles
Regular Member


Date Joined Dec 2008
Total Posts : 199
   Posted 5/30/2009 2:19 AM (GMT -6)   
Hey, welcome to the forums. Supposedly the GI doc says am I prednisone dependent, but I am trying alternative treatments and they seem to really be helping. Ask anything you like, I am sure that someone on here is feeling the same way you are.
Asacol-12 a day
1 Culturelle
1 Canasa
5g Fish oil supplements
1 Vitamin
1 Haldi Drink
Gluten-free and lactose-free diet


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 5/30/2009 6:48 AM (GMT -6)   
Hi and welcome. No, pred should not cause suicide thoughts <-are these thoughts while on Pred?. In fact, that is a side effect that they warn you about and you NEED to mention this to your GI. There are a few individuals that can have manic episodes while being on Pred and that is not normal. Please let your doctors know about this.
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PrednisoneJunkie
Regular Member


Date Joined May 2009
Total Posts : 33
   Posted 5/30/2009 8:56 AM (GMT -6)   
My doctor is really hard to talk to. Whenever I try to tell her things or ask her questions she doesn't really have any meaningful response. If I ask too many questions, she gets annoyed and makes me leave her office, like I'm wasting her time. I know I should probably find a new doctor, I just haven't found an opportune time yet. When I'm not sick I don't think about it, and when I am I can't afford to wait.

The mania I know is a result of the pred, but not the suicidal thoughts. I'm so ashamed of them that I almost lied and said they were so I'd have an excuse. I haven't told anyone IRL. The truth is I'm just a big ninny and very sensitive to pain, and when I'm losing blood and in a lot of pain they just pop into my head. I don't have kids and my wife can support herself--no-one really depends on me--so suicide is actually an option. But when I'm in remission, which is most of the time, I'm really glad I didn't go through with it.

Thanks for the help. I actually have some fish oil in the cabinet, I'm going to start taking it.
27 / Male
UC Diagnosis May 2003
Survived 9 flares
Used prednisone, asacol 6/day
Alternatives: have successfully tamed 1 flare and counting without prednisone with massive doses of probiotic (along with asacol)
Diet: paleolithic (but I often cheat), non-smoker, non-drinker
Other problems: Childhood asthma


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 5/30/2009 10:18 AM (GMT -6)   
Welcome to the forum
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/30/2009 10:22 AM (GMT -6)   
Predinsonejunkie; welcome to the forum. If your doc is hard to talk to then you need to find another doc. This is a must as you need some help. I can assure you that suicide is not a good option; there are better meds out there to help you through this flare. If you really feel suicidal, I'm listing some places for you to call and talk. This isn't any easy disease by any means. Take care and thinking about you.

National Suicide Hotline
1-800-SUICIDE (1-800-784-2433)
This is a combined network of the Amerian Association of Suicidology, the National Hopeline Network, CONTACT USA, and many other organizations. Call are automatically routed to the nearest crisis center to the phone from which the call for help is placed.

Helpful Web Sites:
Suicide Hotlines (listed by state)
Suicidal.com (includes Suicide Crisis Center and Depression and Suicide)
SuicidalTeens.com
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


houseguest
New Member


Date Joined May 2009
Total Posts : 16
   Posted 5/30/2009 11:18 AM (GMT -6)   
Hi, my docs sounds at least "or less ' felpful than yours. And there still unable to find out what and why I having trouble all over. It realy, realy sucks when they wont even properly answer a question. Mine are cold arogant, and too busey. My GI is swamped. I have yet to start trying steroids. I was offered a little methetrextate, for my multiple unkown immuno problems. Mainly the Iritis, immune eye attacks. Brutaly painfull, but as my probs have showed up. Id rather deal any of it than the IBS/ UC type thing going on.
 
I chickened out because of fear about liver damage, cancer and so on. I wasnt offered steroids I thing because I was complaning.  After two bad wweks, I think I may change my mind. And especialy after seeing the word surgery quite a few times around here. Though Im no where near as in the bad shape some of these people are, yet. Its bad enough to scare me, and I dont do that easily.

Post Edited (houseguest) : 5/30/2009 10:27:55 AM (GMT-6)


houseguest
New Member


Date Joined May 2009
Total Posts : 16
   Posted 5/30/2009 11:39 AM (GMT -6)   
In those recent two week of cramping and sickness. Fealing like a may die, like I have cancer or something. I wnet at first form being scared to death, for me and my young kids. To thinking the end may not be soe bad. Dont be ashamed. Healthy rich people kill themselves for nothing.

People with GI problems should, be allowed to stress and freak out. But try to hold it together, and be calm. try to reduce and cope with your stress after you let a little out.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/30/2009 11:47 AM (GMT -6)   
Hi and welcome! As others have said, it's NOT normal to have suidical thoughts when you're on pred and I'd definitely take the time now to find a new doc since you're in remission. The two best things I like about my doc are that he spends a LOT of time with me at each appointment, answering the questions my DH and I have and that he's great about returning phone calls.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa every other night, Culturelle probiotic, and Zoloft (25 mg).


PrednisoneJunkie
Regular Member


Date Joined May 2009
Total Posts : 33
   Posted 5/30/2009 11:53 AM (GMT -6)   
Thanks everyone for the concern, although I wasn't trying to make a 'cry for help'; I just wanted to know I'm not the only one with these feelings. houseguest, as hard a time as you're having, you have to cut your doctors a little slack. They are limited as to what they can do for you until you've had a colonoscopy, which you haven't had yet if I understand correctly from your other posts. i know it's hard but just try to drink lots of juice and stay hydrated until then.
27 / Male
UC Diagnosis May 2003
Survived 9 flares
Used prednisone, asacol 6/day
Alternatives: have successfully tamed 1 flare and counting without prednisone with massive doses of probiotic (along with asacol)
Diet: paleolithic (but I often cheat), non-smoker, non-drinker
Other problems: Childhood asthma


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 5/30/2009 3:36 PM (GMT -6)   
A quick google search shows that prednisone-induced suicidal ideation seems to be common, so I don't think you're alone in that. It also definitely causes depression, the development of which can and does include suicidal thoughts.

Good luck riding it out, and definitely seek help if you need it.

AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 5/30/2009 3:45 PM (GMT -6)   
I became depressed during my last round of pred. in March. Thankfully, I'm seeing the light at the end of the tunnel. I put off taking any anti-depressants but I've been on Effexor for over 2 weeks and have been feeling much better about life. You should look into getting on some meds.
32 yr old female
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon?


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 5/30/2009 4:36 PM (GMT -6)   
I completely understand, don’t worry your not alone, ive never been on pred for UC (nock on wood) and still feel like life is really not wroth going through. I feel like that tonight, but we have to battle through these feelings and keep up our sprits.

Ive been trying all sorts of diet things since my first really bad flare 3 months ago. I think that the only real thing that can heal you is a raw food diet. I ve only heard of one success story so far and it is by Paul Nison, you can watch him on you tube.

Im not completely raw now because my weight on the diet was going below 100lb. Im 5 foot 1 but its still to low.

Any bad feelings just post them. It helps to get rid of them
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 5/30/2009 4:48 PM (GMT -6)   
Yeah, I think that feeling may be a little more common than alot of people thing. The stuff is bad for your emotional well-being.

Hydrocortisone enemas are steroids you stick up the rear. So instead of taking pred and having it affect your whole system you get right to the target area. Far fewer side effects. You could try this route and decrease the pred easier.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/30/2009 6:17 PM (GMT -6)   

My gastro doc told me to use the hydrocortisone enemas while tapering and it would help with the UC and the tapering withdrawal symptoms.  However, I still can't administer the enemas - only maybe 1/3 will stay in and because of my obesity I can't reach good enough to do better.  Also, so much gas - hard to keep in.  I may try again as I do believe it would help me a lot.  I just hate them - they also cause me soreness and swelling where I don't want or need it.  My NP recommended a cream called Calmoseptine (sp?) which I got today - maybe that will the outside side effects.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 5/30/2009 8:27 PM (GMT -6)   
kops2da, I never use a whole one. Most of the time I only use a 1/3 too. Makes them last a little longer, you can usually hold it in easier and it does the job since you end up retaining it. Lots of A&D ointment too helps get it lubed, lol. Warm it up a bit too.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/30/2009 8:34 PM (GMT -6)   

Thanks Dr A-

I have never warmed it but it is not cold.  I may just try again - I use another water soluable ointment - AYR - about same thing as A & D.  Never seemed to have a problem with getting it in if I could only REACH that area with arthritis pain, etc.  Another reason to lose weight!!  Do you think that if I tried it again it would get better - feel better - after several.  I have always had more symptoms the more I use - any kind of rectal meds as in more pain, more cramping, more blood and more mucous. (and that gets better when I stop the enemas, suppositories, foam, etc.)  The longest I have tried was 10 days one time and the last few were horrible.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 5/30/2009 8:39 PM (GMT -6)   
I really don't know. Rowasa did that to me and still does sometimes. The cortisone enemas just always make me feel immediately better.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/30/2009 8:43 PM (GMT -6)   
Thanks! I never thought about saving any - I throw it down the drain. My medications cost me nothing. Anyway, I NEVER felt immediately better from any and I can't use mesalamines of any kind. I, however, have retained the protofoam overnight many times after considerable pain and cramping for about an hour - lots of effort. AND in the mornign I feel worse and have more problems. I just know that rectal meds is what would get me to remission. Oh well, seeing that specialist in a couple weeks and that question is high on my list - rectal meds.
ElaineNY
 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


PrednisoneJunkie
Regular Member


Date Joined May 2009
Total Posts : 33
   Posted 5/30/2009 9:08 PM (GMT -6)   
Hellokitty,

I watched the Paul Nison thing. If this is the only success story you've heard, beware. This guy has all the hallmarks of a scam artist. I bet he's lying about having IBD. :(

I'm not saying raw foods aren't good, just that Paul Nison gives me the creeps. I juiced up a monster batch of carrot and celery juice today and it was great. That and some pear juice from the store and I'm feeling pretty nourished for the day.

Thanks to Dr-A and Elaine for the advice--I'll ask my doctor to let me try a hydrocortisone enema on Monday.

Cheers,
27 / Male
UC Diagnosis May 2003
Survived 9 flares
Used prednisone, asacol 6/day
Alternatives: have successfully tamed 1 flare and counting without prednisone with massive doses of probiotic (along with asacol)
Diet: paleolithic (but I often cheat), non-smoker, non-drinker
Other problems: Childhood asthma

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