Jazz guitarist singing 'de bluez, Chron's flare plus depression, seeks support
I have been suffering from severe flare-ups requiring hospital admissions, am on Prednisone and am now experiencing horrible depression, weeping uncontrollably, self-blame, guilt, isolation from family and friends, etc. I'm out of the hospital but my paid caregiver is afraid to leave me alone because of the severity of the depression, not to mention the physical symptoms of the flares. Should I go back to the hospital (VA) and seek readmission? How do I find local support services? Please help me to "help myself"; I feel so isolated and disconnected it is certainly exacerbating the physical pain and other symptoms and I cannot rely on my family at this time, nor am I able to work. A support group would be a great help in getting me through this crisis. I do understand that part of the emotional aspects may be a side effect of the steroids but there are situational factors at play as well. Contact with fellow Chron's sufferers, or a chronic pain support group in my area is what I am looking for and I would appreciate any suggestions or guidance you can provide. Thank you so much for reading this far!
Hi Jazz,
I'm so sorry you're having such a rough time with this flare. But reaching out is just what you need right now. Living with IBD sucks! And all of us who have it know that and can commisserate with you. Family and friends are great and they try, but truly, if you don't have Crohn's or Colitis you just can't get it. It's not their fault, but they can't. And, IBD IS NOT YOUR FAULT.
You're right that the steroids are most likely wreaking havoc with your mental state. I cannot take them because of the mental side effects. You really may need to talk to your doctor and discuss these severe side effects and see what other Rx options he/she can give you.
Also, go to www.ccfa.org - this is the Crohns and Colitis foundation web site and there you will be able to find a list of support groups in your area and a larger chat room for IBDers.
You also might want to read my book, Living with IBD& IBS. I have Colitis, not Crohn's, but also went through a very low period. You can look at some of it on my web site - www.ibdandibs.com.
I think reaching out to other IBDers will help you now and into the long-term, BUT I really think you have to look at your depression as a serious side effect of the Prednisone and talk to your doctor or his/her nurse today. There are plenty other Rx options for you to take, you shouldn't have to live with these serious side effects.
Write back any time. I'm here.
Elizabeth
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jazz guitarist
Wednesday, October 21, 2009 at 11:30 PM
Elizabeth Roberts
Thursday, October 22, 2009 at 04:12 PM
Hi Alison & Chelsea,
Thanks for letting me know Jazz's status. I was so hoping he wouldn't end up back in the hospital. But, do hope he is really getting the treatment that he needs to get this flare under control. You are wonderful friends, and at times like this that is what he needs the most. You can't fix things for him, but just knowing that he is cared for and life is moving forward is very important for him and his recovery.
Please send him my best and know that any of you may write me if and when needed.
Hugs,
Elizabeth
So sorry to hear this. I have been fighting Crohns for 30 + yrs and have been there and done that but not in a really long time. First of all, you dont mention if you smoke cigarettes, but if you do, you MUST quit. I can tell you from experience that smoking only exacerbates Crohns. When I smoked, I was constantly in and out of the hospital and had 3 small bowel resections. I am now 11 yrs smoke-free and seldom have a flare. Secondly, last year I discovered quite by accident that eating yogurt and a banana really eased my symptoms. Being lactose intolerant, and not a fan of yogurt, I have recently switched to acidophilus (the good bacteria that the gut needs)in capsule form but the banana has to be included to feed the live acidophilus cultures. Lastly, I really hate that prednisone. Years ago, while taking it, I experienced a steriod psychosis. It was horrible. I finally opted for surgery so that I could get off the steroid. You gotta do what ya gotta do to take care of this stupid disease but please look at alternatives to that medication. Right now I am medication free and I feel pretty good and I wish the same for you. You are not alone. Too many of us have been or are where you are! I wish you a strong comeback
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Dear Elizabeth,
I am a friend of Jazz's and wanted to thank you for your response. Unfortunately, he has (again!) been readmitted to the VA hospital; this time, they have placed him in the GI section so, hopefully, he will be getting more specialized care and not the revolving door treatment he's received thus far. I know he would want me to thank you for your kind words. My daughter has been helping him with his business affairs and other stuff - she's much more computer literate than her mom (or the patient!) is, so i'm going to direct her to the site and she can then relay the info to him you so kindly provided. We're hoping that he will become active in some of the forums once he has recovered sufficiently and his sx are under better control (to say the least). Thanks for your caring concern and invaluable advice; it is greatly appreciated. Alison (Chelsea's mom)