Need someone to talk to like a pen pal Crohns just dealing with reality

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Regular Member

Date Joined Jul 2004
Total Posts : 427
   Posted 7/8/2009 1:56 PM (GMT -7)   
confused  It has been a long time since I have been on the site and alot of things have gone wrong in my life with Crohns chronic pain 3 failed back surgeries last one the surgeon who opens and closes for orthopedic nicked the colon and didn't catch it that was back in 2005 kept telling anyone who would listen to me that something was wrong.  From the medical tech to the nurses to the doctors yet no one heard me.  My temp spiked to 105.8 could find a vein so they ignored the orders for bld cultures they just didn't do them sent home 24 hrs later I don't remember anything for 3 days I was re admitted and a bowel resection was done in the mean time I had MRSA STAF TOXIC SHOCK and other things I can't even spell.  Since the surgery and them overdoseing me with antibotics for the MRSA my liver enzymes went wacky.....Since then I have been transfused with blood iron sick constantly and the back surgery caused nerve damage to the point where I am on MS long acting 2 x a day and MSIR instant release when needed for break thru pain i see a pain management my sister stopped talking to me because she said I didn't need the MS I just wanted it so I am a drug addict and she dosen't deal with them I did have a problem when one of the doctors there she is not there anymore gave me a new med called OPANA it is a synthtic MS I have bad reaction to synthtic drugs and I started to have black outs......they put me back on the regular MS and things were fine until november of 08 I had my very first grand mal seizure now I have been diagnosis with complexicity seizures which means I go into a trance like stage where I stare but don't see and don't know what is happening around me I could wander off or this is the best just start disrobing they say it is most times mistaken as drug or substance abuse disorderly conduct mental problems I am depressed and have alot of anxiety worse thing for these seizures is stress and anxiety I would just like someone to talk to I use to talk to my one sister the one I looked up to she was the greatest now I am her little sister that is a drug addict and is not a part of her family she actually comes into my house to pick my mom up and won't talk to me when she was called about my seizure in November she told my daugher she was on her way to her shore house and couldn't talk and Never even called to see how I was by the way she never went to her shore house she was home the whole time I was hospitalized.......Oh by the way I have my 85 yr old mother who lives with us my family I promised my father before he died I would take care of her and never put her in a home.....she is in good health and has a better memory then me but my seizure and the high temp from 2005 has caused me to have short term memory loss I repeat myself alot so if any of this make sense I just Need a Friend to talk to who knows what it is like to have crohns and trying to live with it when you have so many other problems my email address is with my information but in case .... Have a happy dayand I hope every one that remembers me forgives me for not being on for so long but I had to relearn how to get on the computer.
Angelheart0528  AKA Desiree

* I have removed your email address to protect you from spammers*  If people would like to contact you that can get your email thru your profile*

Post Edited By Moderator (Nanners) : 7/9/2009 8:08:22 AM (GMT-6)

Regular Member

Date Joined Oct 2008
Total Posts : 114
   Posted 7/8/2009 2:12 PM (GMT -7)   
I am so sorry to hear that you have had such a difficult time in the past couple of years. I am fortunate with this DD and do not have a lot of outside complications or associated disorders starting (yet), but I would be more than happy to "listen" and give you an ear that has some dealings with this disease.  

*I have removed your personal info from your post to protect you from spammers* Please put your email in your profile, so other members can get your email addy there*

Post Edited By Moderator (Nanners) : 7/9/2009 8:09:39 AM (GMT-6)

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 7/8/2009 3:45 PM (GMT -7)   
Just wanted to say sorry that your suffering and that everything works out for you. :-)
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Protonix,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 7/9/2009 7:11 AM (GMT -7)   
I too am sorry to hear you are suffering. Healingwell is a peer support forum where we give and receive advice. Please post here any problems you are dealing with and I am sure are supportive members will give you the support you are seeking.

Gail *Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Jun 2009
Total Posts : 202
   Posted 7/9/2009 9:15 AM (GMT -7)   
Nanners is correct!  We are ALL here to listen, support and help with advice when possible.  I'm sorry you've been through such a hard time.  See if you can find a local Crohns support group.  That's been a big help for me.  :)
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.  Currently have C-Diff.
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Levsin, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort

Regular Member

Date Joined Jul 2009
Total Posts : 24
   Posted 7/9/2009 10:04 AM (GMT -7)   
I can say that i DO have multiple issues too... I have a very rare heart condition, one that makes me faint too ... I also have back problems and nerve damage from a back surgery. I have nerve pain in my left leg and pelvis, and foot drop that makes it difficult to walk sometimes. I find doctors are often pain med pushers, but I managed not to take pain meds often or long term. I got really lucky and got an excellent neurologist who put me on an anti-seizure medication for nerve pain called Topamax... not a pain med or narc, no bad side effects, and it took the nerve pain almost completely away.
I went through some pretty bad downs while I was being diagnosed with the heart conditon and now Crohn's... and I have a lot of people judging me for taking Percocets for the pain (took them briefly before my last spine reconstruction in 2006 too). Overall though, I think it really helps to talk it out... to have sites like this and to go to support groups and local counsellors. Does your local hospital have an outreach program or support group? you should look into that.
I feel your pain, I know how hard it can be, especially when you always feel like something is going wrong... keep your chin up! :) I hope things look up soon...
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