New Guy, my story

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NucFuel
New Member


Date Joined Apr 2006
Total Posts : 3
   Posted 4/21/2006 5:20 PM (GMT -6)   
Thank you all for sharing your experiences and helping each other through difficult circumstances.

I had signs of IBS/Ulcerative Colitis in the mid 80's (I was in my early 20's) which coincided with extreme anxiety, panic attacks and a variety of ill defined mental disturbances. I had no health insurance which meant that I had only sporatic medical care, just enough to try the latest treatments. I tried Sulfa drugs, Cortisone enemas, Prednisone, and several others that I can't recall. I also tried Hypnotherapy, acupunture, acupressure, chinese herbs, talk therapy, massage, excersize, meditation, and plenty of tears. All to no avail, the disease was relentless and nothing seemed to halt its progression.

By 1992 I was taking nearly 100mg. Prednisone, I had lost almost 40 pounds, I was in unremitting pain, I was vomiting and unable to eat or drink. I finally called a relative who took me to the ER of a local hospital in Portland. When the ER staff gave me a huge dose of IV-Narcotics I thought I had died and gone to heaven, the pain relief was so dramatic and wonderful. I was certain that I would be given a new medication and sent home, however I was instead put on TPN for 2 weeks and scheduled for total Colectomy. I was very fortunate to be a good candidate for ileoanal anastomosis (J-pouch reconstruction) which I opted for. I endured several months with a temporary ileostomy and proceeded to recover from the 2nd "take down" operation...that was 1992. Even though my recovery was relatively trouble free (slight pouchitis, flagyl), my entire being was changed forever. My personality was damaged. My confidence and self esteem has been severely shaken ever since then, and I don't trust my body which has betrayed me many times in embarrassing ways.

I still to this day feel as if I have a constant low-grade inflammation. I'm always bloated and crampy and my remaining small bowel has a mind of its own, always active, squirming, noisy, and in distress.

To others, I initially appear quite normal, good looking, sharp and witty. Perhaps much like many of you, I don't wear a sign that alerts others to my issues but the issues are there and they soon come to light as I attempt to protect myself and manage my stress. Women that I have had in my life have all been wonderful but as I begin to date again after a recent break-up I'm a complete basketcase. I know that women want men who are strong, men who overcome difficulties, and they don't want men with career problems and physical defects.

Are there any others out there who are still having problems even after a so-called curative surgery? I would sure appreciate any thoughts you may have, and thank you all for listening.

~~~~o

Post Edited (NucFuel) : 4/21/2006 7:38:48 PM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 4/21/2006 7:15 PM (GMT -6)   

I am sorry that even after sugery you are still suffereing.  For me I found surgery to be a cure, it's been five years since and I couldn't be in better physical and emotional health.  Based on your symptoms I wonder if you could either be suffering from irritable pouch syndrome or chronic cuffitis?  I would suggest you visit www.j-pouch.org and share your story.  If you have cuffitis, it is treatable.  The Cleveland Clinic has been researching irritable pouch syndrome and have some new therapies to offer for relief.  

Sue 


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


Meilandra
Regular Member


Date Joined Feb 2004
Total Posts : 30
   Posted 5/17/2006 7:48 AM (GMT -6)   
As a former medical social worker, I definitely recommend you do as much as you can about handling the physical issues: keep researching and asking for information and help until you either find someone who can fix whatever is physically bothering you, or until you are completely convinced there is nothing anyone can do - and then keep looking anyway, because medical knowledge and technology do change!

The other, the self-esteem stuff, can definitely be dealt with through good counseling. And we all deserve a happy life with love in it. yeah

Good luck :-)

buggnyou69
New Member


Date Joined Jun 2006
Total Posts : 9
   Posted 6/14/2006 6:49 PM (GMT -6)   
Hey Nuc,
I am a single young and attractive so I have been told. I know what you are going through. Although our physical selves will eventually heal it is a hard task to deal with other peoples hang ups. Really that is the issue here. none of us are perfect some of us just have different imperfections. Your special someone is out there waiting for you...scars ,bag ,pouch or whatever.....I saw a show on the tube the other night about this woman with no arms....engaged to a fine looking handsome man. He cant hold her hand so he holds her foot. it boosted my spirits to see that there are people who are "blinded by love" SO have no fear!!! I have a scar that makes my front look like my backside lol!!! I have been rejected for how my body looks. Yes it was hard for me to deal with at first but the way I see it , it is just a preference and I try not to take it personally and keep on looking for that "blind" love.
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