Nursehill's Story

[nursehill]

Hi. I am new to this forum. Trying to figure it out. I was diagnosed with Crohns in 1983. Have had 15 surgeries, bowel resections, 5 Feet of small intestine removed, ileostomy, blood transfusions, Infed infusions. Many trips to the ER for nausea, vomiting and pain. Get fluids, meds and go back home. I have tried all the meds including most of the biologics. Had terrible reactions and 2 life threatening. It can really be depressing as you all know. I try to not let anyone know that I am sick and hurting. Put on a smile and try to encourage others. My Crohns has been very active the last 3 years. The doctors say they don't know what else to do because I have taken everything available. I am having on average 7to 9 BMs daily and some days as many as 20. Frequent nausea and vomiting. Have lost 18 pounds since June 2. I have never lost that much so quickly. I am a Hospice nurse and have taken a leave and I am having trouble not being able to work. Due to a surgery I had several years ago, I have bowel incontinence and have chronic diarrhea. Although very difficult, I managed a routine so I could work. Now I feel so useless, just taking up space.

 

[ZM1019]

I am so sorry that you've been through this. Hugs to you and welcome.

 

[Trysha]

Hello Nurse,
There are many of us that can resonate with your feelings.
Know that you are not alone and that there are many friendly people on this forum who will be along I am sure to encourage and sympathise with you.
There are also some encouraging clinical trials in place with Qu Biologics of Vancouver BC that is researching treatment using Site Specific Immunotherapy (SSI) an innate immunological approach which is different from the usual antigen-antibody approach.
It is a similar concept to a vaccine and works on the body's immune system.
However it is vastly different from vaccines in that it has the ability to activate the body's innate natural immune response rather than the traditional adaptive immune response(ie antibodies) .
It has distinct advantage in that it works in immunocompromised individuals.
I felt very encouraged by this news, having had some bad reactions to some of the treatments for crohn's and being very wary of the next step, which for me would be Remicade though I have not yet agreed to accept this.I don't think I could face another bad reaction and it takes so long to recover.
The Qu approach might be the better one for me once available.
You already given so much of yourself in your profession and I am sure many have benefitted from you help and compassion.
It is hard to give up working but then we have to do what we must.
Have you tried some mindful meditation---I have found this can help stresssful times, it can be for 5 minutes or as long as you wish.
I also listen to the the healing music of Mozart and other great composers and find it helpful.
Wish I be of more help to you.
Feel better soon
Hugs and best wishes
Trysha

 

[David]

Hi nursehill and welcome!

I'm so sorry to hear of your troubles, that must be so tough. You've been through so much *hugs*

Have you tried the following:

1. Low Dose Naltrexone
2. Total enteral nutrition
3. Medical marijuana
4. And last but not least, stem cell therapy

I assume you've had your ileocecal valve removed which isn't helping with the D. You may want to read this thread to see if the idea of psyllium is worth discussing with your doctor to reduce frequency.

And do you get your vitamin B12, vitamin D, and folate levels tested somewhat regularly?

We're here for you

 

[marjory2020]

Welcome to the forums! I agree with others here that you will be able to find a lot of people who can relate so you've come to the right place. I think the two people above me have covered a lot of options so you can start there! And please, please find someone to talk to. It really can useful when you need to vent and I know that having a good support system has helped me a lot sometimes. I know the feeling of not wanting to be a burden on others, but you don't have to struggle alone.

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear that you are to unwell at the moment and am struggling to find something that will sort things out for you. What sprang to my mind has already been mentioned so I will leave it at 'welcome' and I hope you can find some relief soon :hug:

AB
xx