Where can I get help?

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New Member

Date Joined Feb 2008
Total Posts : 2
   Posted 2/14/2008 1:58 AM (GMT -7)   
I'm a 40 y'o mother of three, I'm also a nurse, I worked in labor and delivery, and nursery. I also covered med-surg and ICU.  I loved the work, caring for patients and patient education, (a big part of sending home new parents). In 2000 I was diagnosed with Crohn's Disease, but treatment for the pain and other symptoms was a long and unsucessful journey. I was put on medications that are the standard treatment for CD.. As most people with health issues I sought help from my doctor, who then send me to a GI, where I was given more medications. Progesterone was a medication that I  was given both in the hospital and after I was discharged. I was on medications for diarrhea, nausea, and the pain. I had a strong reaction to the steroids, but it didn't change any of the symptoms.  Both my husband and children agreed that I should never take steroids again. I took many different medication, and I took them as directed, with no change in symptoms.. I continued to work as well as I could, dealing with the symptoms and pain, it became harder as the illness progressed. I spent alot of time in the bathroom, and hiding my pain from family, friends and co-workers. Even though I work in the health care field, it is still hard to have conversations about bathroom habits,( of course that is the main problem with Crohn's Disease). .  I now had more medical bill and prescriptions to pay for, and continued to have pain, nausea, vomiting and diarrhea. This has gone on for more than eight years now, and the things I have been through are just unbelievable in this country at this time. Because of the poor health care I recieved when I had health insurance and worked in the health field, I am now without my family, home, job and health care. I am having a very difficult time getting health care now that I now longer have a job or insurance. I  now have to be on public health care, what I can get. I was in the hospital for a prolonged time in late 2006, with abdominal pain.  While a patient I became infected with MRSA, ( the same infection in the news because of the increase in cases in our area). The only way I could have become infected was through cross contamination, from hospital staff. I was given treatment for the infection and discharged home without a diagnosis for the abdominal pain. I followed up with a hospital clinic, there the doctor there ordered more tests and medications, which I took,(again with little change in symptoms and strong side effects). I had a really bad doctors visit, and lets say I will NEVER GO BACK. So I decided to change clinics, I made an appointment and when I saw the new doctor he told me that he wouldn't be able to see me as a patient. I have been admited to the same hospital again, and the treatment hadn't improved, I was so scared to be there again as a patient, but I need medical care. Now I have to go and have a test at the same hospital and I don't want to take a chance on another infection, so I wanted to get information about infection control policies and procedures. To see if changes had been made, to prevent others from being infected.  I have found this to be harder than I ever imagined. I was told by the Infection Control nurse at the hospital,  "I can't release that information to you". I also tryed to reach the Patient Relations personal and was unable to reach anyone. I have found that being the patient is much harder than being the nurse. Who is watching out for the rights of the patients?

Forum Moderator

Date Joined Nov 2003
Total Posts : 7119
   Posted 2/14/2008 10:24 PM (GMT -7)   

Welcome to Healing Well! I am so sorry that you have had such a tumultuous eight years. As a nurse [RN? LPN? CNA?] I am sure you have heard of JCAHO. Is the hospital that will be caring for you JCAHO accredited? If so, those standards are the minimum that should be followed in terms of infection control. If you look around at the following site, hopefully you can access the info for which you are looking.


Also, many, unfortunately not all, hospitals have a patient advocacy department. You might want to find out if there is one in the hospital you will be going to and seek them out. Explain your concerns. Then when you are admitted, put your training to use. Be vigilant about speaking up when you have concerns about possible breaches in protocol.

I wish I had the perfect answer to your question about who is looking out for patients. Unfortunately, though every place has a "Patient Bill of Rights," not all are as diligent in following them. Get a family member or friend to accopmpany you, to be an extra set of eyes and ears.

Good luck and I hope all goes well during your hospitalization.

Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

Veteran Member

Date Joined Feb 2007
Total Posts : 1010
   Posted 2/15/2008 8:55 AM (GMT -7)   
HI Samlpn:

You must feel as though crohn's is stripping away everything of importance in your life. I'm so sorry that the disease has such a fierce grip on you right now. Is it possible for you to find some small ways in which you can take back some of your power? I mean are there any things you are in control of that you can use to help make things more bearable?

Sometimes, when I'm in crisis I have an awareness that I am, naturally, focussing on all I have lost because of this disease. For me, it has always proved helpful in those moments to spend just a little of my limited energy on the things in my life that I can still control. During one crisis, I was reawakened to my joy in making music. That was in 1993 while recuperating from a six month hospitalization. Fifteen years later, I am still a student of music. I cannot begin to describe the joy and purpose and friendships and satisfaction that have come to me from exercising that little spark. Sometimes I think music was the lifeline that helped me haul myself back to the land of the living during that dark time. It started as a very private therapy. This summer I have agreed to perform, along with several other musicians, for a charity benefit. I am terrified to share my music, but so grateful for all it has given me.

about your experiences with MRSA, since you have had MSRA won't you have to be in isolation if you are admitted to hospital? The hospitals in my region screen for two types of resistant bacteria. On admittance if you have been in another hospital within the last year, you have to be tested. If you test positive, as a carrier then isolation protocols are used.

The best way to reduce the risk of acquiring MSRA is to insist that everyone who has contact with you in the hospital wash their hands in front of you. Explain to every nurse, physician, intern, resident, nutritionist -- everyone who handles you or anything that you touch -- that you have had MSRA and ask them to please wash your hands. Also ensure that your concerns are charted -- so often concerns you bring to your health providers' attentions don't get charted. So don't assume it is charted, insist that it be charted.

Take care of yourself and come here often when you feel you could use some support. And remember this too shall pass.

30+ years living with Crohn's.

New Member

Date Joined Feb 2008
Total Posts : 2
   Posted 2/18/2008 6:32 PM (GMT -7)   
I have contacted many other people regarding the MRSA, and I'm still unable to find who is recording and reporting the stats in my area. I even contacted my local state rep. The office of the state rep has been the most friendly and helpful so far. Because of the holiday I expect to hear from them tomarrow. Thanks for all of the incouraging words and helpful information.

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