I read pancrease problems. Is that why you can't keep anything down?

Hey seriously Dej..Marinol WILL calm your tummy, take pain away and increase appetite. Its only thc. Its the only pain med that makes your stomach want to be filled which is the TOTAL opposite of opiates.

I have tried marinol spray and I tried the smoke kind.

I have gastritis brought on by my pancrease. My guts are over reacting,and should have calmed down by now. If I am not able to stay hydrated at home, they will put meback in the hospital.

I just had to try it.

Not trying to add to it... but have they thought about using the pic line to put some saline in to keep you hydrated?

Hope you are feeling better. I cannot imagine going through all of that on top of the every day stresses. I am glad to hear you are at home. Hospitals seem to make the stress level increase. :hug:

((((:hug:Dej))))

Prayers for you to be able to stay at home...

All prayers with you our tiny Lady yet our Big Fighter! We all want you home where you belong. :hug::hug:

Anyone heard from Dej? Is she feeling any better?

I was home from the hospital for about 48 hours, when I became violently ill. My potassium level was 2.3 and my blood sugar was 54. I was shaking like a wet kitten, and kept passing out everytime I tried to stand up. The hubby called the MD who made me a direct admit to the ICU. I got out of the ICU this morning.

They are speaking about Porphyria as a diagnosis for me. Its a rare strange thing to have, and there is a blood/urine test to prove/disprove it.

I am on TPN or total parenteral nutrition thru my central line, and I am getting tons of good help and attention from an amazing staff of nurses, mds, and so on. I couldnt have wished for a better team to be behind me.

I do not have any release date, as I am constantly blowing out my blood work. I can quickly drop my K, my sugar level or my red blood cells along with my billiruben go crazy. I have been very ill, and had a few days that I wondered if I was even going to wake up if I closed my eyes. I am not eating any food yet, as water is a returned item.

Thank you for all the lovely letters, PMs, IMs, and emails. you guys rock. Its always nice to know you are loved. I wont be writing much as it takes too much out of me. I promise to catch up when I get home someday.

I will be keeping you in my thoughts and daily prayers, Dear Dej. I am so sorry for your illness.

I hope to hear better news from you soon..:hug::hug::hug:

I have also been thinking a lot about you. I am so sorry that you are so sick.:hug::hug::hug:

Makes my little issues pale into insignificance.

Get well soon missy. :hug:

Dej,
Sending good thoughts of wellness, and plenty of prayers to you everyday. Take care and come back strong and healthy. :grouphug:

Oh dear Dej. I understand all those words and all the implications so I have some understanding of just how sick you are and have been.

I haven't seen Porphyria in a good long while but considering your recent biochemistry, I daresay this is quite possible.

Please get well soon. We miss you here. :hug:

Dear, dear Dej,
Love and hugs as well as prayers for you, our dear sweet one...know that we are praying for you...and we love ya!!:grouphug:

Dej, praying for you! :hug::hug::hug:

Poor Dej. I hope you are feeling better soon. I am glad to hear you have good doctors and nurses. Now me and SalPal and AMN don't have to drive up there and kick a doctor for ya.

Still in the hospital. :(

I am getting great care, and the nurses are excellent. I am anxious to get home, but I would also like to go home and be able to stay, and not boomerang back in here.

I have several specialists coming today to rule out/in porphyrias. I will reappear when I can. I hate them playing with my central line. I know they need to, but EEEEK! It wont be long now, and I will be headed home. Keep your fingers crossed. ;)

Fingers crossed, knees bent

Feel better soon, Dej. You know we're all praying for you and thinking of you. :smileypray:

I hope you are home very soon. YOu have had a rough time. I am
keeping you in my prayers.:hug::hug:

Hang in there! Also keeping you in my prayers.:hug:

oh great big BIG HUGSSSSSSSSSSSSSSSSSSSS hoping for a home bound trip for you soon dear, sarah

Crossing fingers and toes, along with my prayers..:hug:

My prayers are for you Dej...:hug:

Update

I am STILL at the silly hospital! I am doing a bit better, but still unable to eat, or keep down regular foods. I am on hyper al or parenteral nutrition. My tummy has just gone on strike and refuses to work. Some MDs are telling me that this may indeed be some sort of an MS thing, and that the damage to my tummy maybe some sort of nueropathy. other MDs are saying this is a Porphyria thing (blood/urine still pending for positive dx) and other still are just guessing. I think they simply have no idea and when that happens, they are quick to lay the blame on MS. One MD actually said "we have no idea, and are starting guess." I was impressed.

There are also too many cooks in the kitchen. There are too many people wanting a peice of me. I did all the gastric empty tests, and it been determined that its taking about 30 hours for foods to move past my tummy (including water) so my tummy is absolutely in a paralyzed state. once in the small bowel, it does slow, but moves along.

I am frustrated, and tired of this. I have asked them to stop all the silly test, and guesses, and simply allow me the time and the energy to heal. It seems I would get a day of bowel rest, and then...someone else would want me to swallow barrium, or radioactive eggs, or a scope, and it set me back to the state of unhappy tummy.

One nurse actually said "wouldnt it be good news to have Porphyria and not MS?!" I said HEY! at the end of the day, someone is going to walk thru that door and tell me that I have an INcurable disease! an auto immune disorder that will stay with me, and create damage for the rest of my life! how is that good news? She blushed and left the room. Sheesh! I also get alot of "but you look so good from most of the nursing staff! what a bad thing to say to someone who is so ill.

Thank you for all the well wishes, and hugs. You guys rock. I will update as I can. I really dont feel well, and dont feel like staying plugged into the computer. will let you know when I can.

This sounds perfectly reasonable to me--allowing you time and energy to heal. I hope you can manage to persuade them that you might just know a thing or two about what is best for you.

Words fail me here.:eek:

Hang in there--better days are ahead, let's hope. I agree that it's good they admit they're guessing. Know-it-all medical professionals would worry me far more than ones who honestly say they don't know.

OH Dejibo--I haven't been on NT much lately but stopped in to see how things are going and was so sad to hear of your troubles. You are so strong for hanging in there! The PIC line is a godsend--I had one for a month once. Anyhow I'm thinking of you and hope you heal quickly and completely. You are so courageous!! :hug::hug::hug::hug:

Wow Dej. I don't even know what to say, but i promise it won't be "you look so good"! I don't blame you for asking for a break to recoup. Your stomach is probably protesting the constant poking and prodding. I really hope they figure out what it is soon and get you feeling better. We miss you around here.

Gosh, Dej...wish I could come and hug you in person...know that you are high on our list of prayers...and I truly hope and pray they let you heal...:hug::hug:

Deb -- :hug::hug::hug: Keeping you in my prayers.

Dej: just returned this tuesday from a weeks trip.

so sorry to still hear that you are not doing well.

you are in my prayers :hug:


Jappy :hug:

more HUGSSSSSSSSSSS hoping the tummy settles soon... sorry about the lame nurse comment!! geezzzzzz

hang in there Dej.........we are praying for you!!!:hug:

Just saw on FB that Dej is out of the hospital. Welcome home!:hug::yahoo:

I made it home this afternoon. They are still playing guessing games about what really went wrong. the GI folks say its MS. The MS folks say its GI. The medical folks say they are staying out of the fight. It was a loooong month of back and forth.

The test for porphria is negative, so its MS. Can MS cause a tummy to simply stop? depends on whom you ask. I was told that diabetic patients can have this type of neuropathy happen, so...why not MS?

I am keeping down simple easy foods, and while still quite cautious about what I put in there, they deemed it to be enough to survive on. Everyone passing the buck to the next guy now.

My old cat is so happy to have me home. She went blind while I was in the hospital,and has stressed over not having me here. I really felt so horrible to leave her. At 23 she is quite fragile.

Anyway, thanks for the well wishes, and the prayers. I am home. Lets see if I can stay here. :cool:

Welcome home, Dej! :hug:

Dej, I am so glad you are home. Welcome back. I'm glad your old Putty Tat is happy with your return too.

When I had my Colonoscopy, the GI doc said that I don't have Motility in my intestines. Food stays with me longer than normal people. He said it was the MS. He told me this when I woke up after the test.

Also I have Esophagus spasms (oh the fun, not). I was dx'd long ago in the hospital, with a drink I had to swallow slowly while viewed on a stand-up fluoroscope. I had so much pain in the middle of my chest when I ate, or the throat would not let food or liquid go down. I had to spit it out or choke.

So yes, IMO, MS can cause problems from your jaw (TN) to your toes (curl) and anywhere in between. this is just my thoughts I this since you sort of asked .

BTW, I have to eat small amounts of food, no spice, 5 to 6 times a day rather than 3 bigger meals. I have to cut the pieces small, so not to get pain or choke.

I take a Klonopin before meals to relax the spasms. In the hospital I was given Phenobarbital and Belladonna. I don't need them now that I know the problem is MS and not gastritis, GERD, Gallbladder, or indigestion. Just MS spasms at times, and the lack of bowel Motility most of the time.

Food takes forever to move along to the end outlet. The resulting slowness causes painful gas pockets too, because the gas gets trapped.

Be well my dear and come back strong and healthy..:hug:

yes lets keep you home, stay on those liquids and softer choices for foods maybe, and snuggle the cat... and hoping your stuff does not act up more again... since they do not know what the heck it is... hugssss,sarah

I just hate that when they dont know, they dont say "i dont really know" they just say "its an MS thing." so quick to blame MS for all that ails me that they cant prove. makes me angry.

I am eating soft, small meals. My kitty is thrilled to have me home. I was so worried about her.

Thanks for all the good loving. :cool:

Welcome home :hug:

I glad you are a bit better and home at last.:hug:

Bless your sweet little kitty cat. he must be stressed too.

Take care what you eat for awhile....I guess MS can do strange things, when your whole body depends on your nervous system, so much.