Rough times
 

I'm in the hospital as I write and have been for days. Things had gotten very bad for me. I had both endoscopy and colonoscopy at the same time under general anesthesia today. I had a gastric emptying study yesterday. I definitely have gastroparesis so my stomach is not emptying as I suspected. It’s from the POTS or the CRPS. Probably pretty far along apparently.

They didn’t find colitis or obstruction in the endoscopy or colonoscopy when I was finally ok enough to get there (it was an eventful day before and morning in a really bad way primarily because of the Addison's and partially the POTS, plus my CRPS was flaring). They cut out some polyps in my colon which are usually nothing. But the main thing was to take a lot of biopsies so they could see the muscle/nerve problems in my stomach and bowel that move the food along and digest it. There was still decomposing food left in there from three weeks ago when I last ate solid food. I actually feel better without all those toxins in my system but still very weak. I've had uncontrollable diarrhea for weeks and the prep sure didn't help. There is no possible way I could have done this outpatient with the prep at home. I have had a colonoscopy outpatient with prep at home in 2008 but this was a different story. I was in better health at the time although I've had relapsing and remitting POTS since 2007 and only got the CRPS three years ago.

We won’t know the results of those biopsies for several days but the doctor came in today afterward and asked me if I wanted to go to a nursing home. I said no I wanted to stay home with my dogs so he set me up for home health care nursing to come evaluate me for their service or hospice. They will come within 48 hours of my discharge. They wanted to come as soon as I got home but I said no. So it sounds like this is pretty bad for me right now. The doctor acted like they may not discharge me tomorrow as planned because I’m not in good enough shape. My electrolytes are messed up for one thing and they need to get that straightened out. it’s just not something you can be very far off on and live. So we’ll see how well I am tomorrow but I’m going to push to go home. I’m only on IVs still…no liquids or anything else. Not even water. Most of my meds IV or injection because i'm not absorbing oral meds. And I take a lot of meds. I’ll stay that way for now to let things settle down if they will.

I don't want to scare people. I do have a lot of other problems besides the CRPS like POTS, Addison's, thyroiditis, and other autoimmune and rheumatological diseases. Most of you don't have all this. I'm just relaying my experience today. I just hope it's not as grave as they made it sound today. I need to process this all and decide what to do after we get the finals results. I just felt like writing something to some group that might understand. I'm a little shocked. I feel like my whole nervous system and vascular system is broke beyond help at this point.

Hugs to you...I am so sorry to hear what you have gone through and are going through. You are in my thoughts and prayers. I hope you are able to go home tomorrow like you want but the most important thing is that you be well enough to go home first. Please keep us updated on how you are doing.

:hug:

Get well soon, and please let us know how you are doing when you can. I will hold you in my thoughts in the next couple of days.

Thank you for sharing! Get well soon!

#1OnPrayerList

Wow I cannot imagine what you are feeling right now. I'm happy they gave you another option than going to a nursing home. I know you said you don't want home health to come the first day you are home but it may make it easier on you. They can make sure everything you need is ready and make sure you are comfortable.

I will keep you in my thoughts and prayers

CD,

I am so sorry you are going through this. I hope by some miracle you are soon spared and hopefully the results you get will not be as shocking as you think.

Right after I had my first CRPS symptoms I started having dysphasia attacks which resulted in vomiting. I don't think it is coincidental. I never had stomach or bowel issues until CRPS.

I am recuperating at home after brain surgery and am having a rough time due to a difficult intubation. Severe stomach burning, reflux, vomiting. I can't eat. Chocking so hard I wet myself. This is close to how I was after the colonoscopy and endoscopy I had last fall, but at least I have been spared the miserable hip pain this time, because my CRPS limb as coddled. It took me months of eating just mashed potatoes to recover. (Multiple people said this was the only diet that helped)

Right now I can only drink warm ginger ale. Water tastes disgusting. I craved chocolate ice cream, ate it and hurled. So I am going back on to my mashed red potato diet, with DG licorice, aloe Vera juice, honey water, yogurt and Chia seed gel. I do not want to be on PPIs for the rest of my life.

My electrolytes are messed up, too. I think this is another symptom of CRPS. If you can't get water into your cells how can you heal? In the hospital I was given two IV drips and for the first time in over a year my hands were plumped up, no finger and palm wrinkles. My face changed enough for the nurse to remark about it.

The reason I was given the IVs is because I tried to sit up in a chair and eat some Cheerios. Lol, my head fell into the bowl.

I am not trying to hijack your thread, by making this about me, it is simply that your post resonated.

Thank you all. They came in already and said no way was I getting out of the hospital right now :( I just want to go home and let what happens happen.

CDwall,

I am so sorry for what you're going through. We are going to have to keep a better eye on you because you are clearly having way too much fun. ;)

I know you are more than ready to go home. No one likes being in the hospital and it is never the easiest place to get rest. I do think it's good they are keeping you for right now. Going home without knowing if you can handle anything at all in your stomach may set you up for more trouble and another admission. It's best to get that settled first.

Is there any kind of rehab they can look at instead of a nursing home? If you go home do you have support in place to help with things you need? Home health nursing makes a pretty brief visit. If they can order an aide it will be short term. I just want to be sure you are safe....

Know that we are all sending healing love and thoughts of comfort. I hope that you recover soon and are able to get back to your babies.

I will light a candle for you today. Many, many soft hugs...:hug::hug::hug:

Thanks all. Doc just came in. I'm continuing to go downhill. Potassium still dropping fast despite every effort. And other problems. Feeding tubes and TPN discussed but they still won't know until biopsies come back if I'm my gut is absorbing at all. It doesn't look like it. Also I'm immunosuppressed from autoimmune rheumatological drugs so infection is a real concern for feeding tubes, etc. They won't even discuss discharge date now. Really bummed. Thanks for your thoughts.

Thank you for the update. I am so sorry to hear all of this. Get some rest when you can.

Prayers and hugs:smileypray::hug: