BLOG.THESPHINCTEROFODDI.COM: Recent Comments

Comment on SOD Symptoms

LOUIS — Mon, 06 Feb 2012 15:15:36 GMT

DEAR MELLISA,YOU ARE IN OUR HEARTS THOUGTS AND MINDS AND WE WISH YOU AND YOUR FAMILY ALL OF THE BEST. THANK YOU FOR THIS INFORMATION. THIS IS WHAT WE HAVE ALL BEEN WONDERING ABOUT,THE STUDY,AND ANY MEDICATIONS THAT WE CAN TRY AND IN GENERAL "HOPE". BUT WE NEED MORE THAN HOPE WE NEED RESULTS. I HAVE BEEN SICK WITH SPHINCTER OF ODDI DYSFUNCTION FOR TWENTY YEARS AND I DON'T THINK I CAN TAKE THE TOLL OF ANOTHER TWENTY YEARS.I BELIEVE IF WE ALL STICK TOGETHER AND KEEP BLOGGING, ASKING QUESTIONS,WRITING LETTERS, AND GETTING INVOLVED AS YOU ARE DOING MELLISA, AND KEEP DEMANDING HELP. AND KEEP ASKING THAT QUESTION, IS THERE ANYBODY OUT THERE? WE NEED THOSE NEW STUDIES, PROCEDURES AND NEW MEDICATIONS.I AM GOING TO START WRITING LETTERS TO~~(THE HONORABLE)MARGARET HAMBURG,M.D. COMMISSIONER FDA 10903 NEW HAMPSHIRE AVE SIVER SPRINGS, MD 20993~0002~~~ AND TELL HER ABOUT OUR DISEASE AND OUR HEALTH CONCERNS. SHE SEEMS LIKE A REALLY NICE LADY. I THINK SHE CAN HELP. MELLISA PLEASE KEEP US INFORMED ABOUT ANYTHING YOU CAN FIND OUT AND YOUR PROGRESS. YOU ARE A RAY OF LIGHT FOR US WHO SUFFER FROM THIS TERRIBLE DISEASE SPHINCTER OF ODDI DYSFUNCTION. "THANK YOU"

Comment on SOD Symptoms

Melissa — Mon, 06 Feb 2012 09:24:13 GMT

I completely understand when you say it is hard on the entire family. I am so thankful that I have a great husband that is by my side through all of this. He gets really frustrated and sad too. It breaks his heart to watch me suffer every day. It is really affecting my daughters too, a couple of months ago my 4 year old daughter looked at me with tears in her eyes and said “I don’t want you to go to heaven like grandma Dorothy”, I have spent nearly 80 days in the hospital since July 2011. I feel terrible that my family has to go through this. I am in the SOD study at the University of Minnesota. They are conducting this study to try and figure out what are the causes and what ways are best to treat it. The worst part is the study doesn’t end for 3 years. Once it is over they will compile all their findings. I say prayers for all of you. Finding this support group really helps me. It helps knowing that we are not alone. This disease is like a nightmare that never ends. You are afraid to go anywhere or even eat food most days. If any of you need anything let me know I am always available. I have SOD and my pancreatic ducts are hardening and bile is backing into my liver, I also have brittle diabetes and I get pancreatitis all the time. They think that it is turning to chronic pancreatitis. I will find out on wed since I just had a bunch of testing all this week. I try and stay positive and set goals for myself. It helps me stay sane and have a good outlook or this will tear you apart.

Comment on SOD Symptoms

MelissaI — Mon, 06 Feb 2012 08:11:37 GMT

I see my top notch specialist on Wed. I will ask him if there is anyone out there. He has prefected the treatments for this disease. I will also look and see what I can find you. I am nausea all the time now but in the beginning I wasnt that much. All my doctors believe that *Dilaudid* is the best pain medication for SOD, it is one of the few that dont make it spasm more.That is what they give me in the hospital but I know there is pill form. Morphine makes me hurt worse. I also use deep breathing which helps. You can always call me at 612.272.3489 or email me at melmarsh007@gmail.com!

Melissa

Comment on SOD Doctors and Hospitals

Melissa — Mon, 06 Feb 2012 08:05:35 GMT

My husband was so upset that he wrote a wonderful letter to Dr. Freeman, talking about the horrible care that I receive when I go to the hospital. Freeman is great but if other doctor dont know how to treat it they treat me like crap. I am so blessed to have my husbsnf for support. This blog really is helping me! I dont feel so alone in this nightmare. I really appreaciate all of you sharing with me. It is good that we have each other!

Comment on SOD Doctors and Hospitals

LOUIS — Sun, 05 Feb 2012 23:02:30 GMT

SORRY MY EMAIL WAS RETURNED FROM DR. FREEMAN FOR SOME REASON THE EMAIL WON'T GO THROUGH.

Comment on SOD Doctors and Hospitals

LOUIS — Sun, 05 Feb 2012 01:19:22 GMT

I JUST SENT A LENGTH LEE EMAIL TO DOCTOR FREEMANS CONTACT IMFORMATION.I TALKED ABOUT OUR SPHINCTER OF ODDI DYSFUNTION CONCERNS AND OUR ON GOING ILLNESS. I HOPE HE GETS BACK TO ME TO LET ME KNOW OF ANY NEW PROCEDURES OR MEDICATION. ITS SEVEN PM AND MY SPHINCTER MUSCLE IS SO TIGHT IT FEES LIKE IT'S GOING TO BURST. I HAVE BEEN WAITIN TWENTY YEARS NOW FOR HELP I DON'T KNOW IF I CAN TAKE THIS PAIN ANOTHER TWENTY YEARS. HERE IS DR. FREEMANS CONTACT INFORMATION.~~~~FREEM020@UMN.EDU~~~~EMAIL HIS OFFICE POUR YOUR HEART OUT AND LET HIM KNOW WHAT WE ARE GOING THROUGH WE DESERVE ANSWERES AND IF HE CAN HELP US HE WILL.

Comment on SOD Symptoms

Carol — Sat, 04 Feb 2012 22:57:26 GMT

I am praying for all of you. I know this is a horrible disease. My daughter is dealing with it daily as we wait for her to have surgery--again. She is only 19 and I do not want her to have to live like this the rest of her life. All our lives have been affected by this. Don't give up. I know the pain gets to you at times. I have been depressed just dealing with my daughter. At times I can't stand it so I know it is hard for you that have this. We are all in this together. Any information I find out, I will list here. Please do the same. There is a little bit of research going on dealing with SODs. One person put something about enzymes or hormones being the key to this. We will keep trying to figure this out. Take care everyone.

Comment on SOD Symptoms

Carol — Sat, 04 Feb 2012 22:38:31 GMT

My daughter has SOD and not the nausea (Maybe a little sometimes) nor the vomiting. She has finally found a doctor in Nashville, TN. Dr. Pruitt.

Comment on SOD Symptoms

DebbieG — Sat, 04 Feb 2012 18:14:40 GMT

I too have this pain and have been to 9 different specialists and am no closer to finding the source of this pain. Has anyone experienced this pain but without the nausea part? Everything written abour SOD matches what I'm feeling with exception to nausea/vomiting. I'm so desperate to find pain relief beyond percocets. I'm in Utah and could use a strong referral to a specialist out here who understands SOD does anyone have any names they could pass my way? My email address is Giambrone@q.com Thank you so much for any insight and your stories, I know I'm not alone!!!

Comment on SOD Doctors and Hospitals

Melissa — Fri, 03 Feb 2012 23:26:17 GMT

I couldnt agree with you more! This site has really helped me feel like I am not alone in this nightmare. I was in the ER last night and the doctors didnt do anything for me. I was vomitting blood, the ER doctor acted like it was no big deal. I am going to go nuts. They act like it is ok to feel like this all the time. I am starting to feel helpless. My husband was so pissed about what happened to me he actually wrote a letter to the doctors today. It not only affects us but our families as well. If you ever want to talk any of you call me, my number is 612.272.3489, I feel that talking to people that are going through this too really helps! I am always here to listen and give some advice!