In the hospital

Hey! thanks amigos, I'm home! wearing a Depends... but I'm home at least.

I had to discharge myself from the hospital, (although they wanted me to stay), but I was losing too much weight cos I couldnt eat their food and the nutritionist was horrid..the food was full of salicylates, (remember I became salicylate intolerant after taking Pentasa for two years) anyway, I was bleeding all the time even after taking the medicine and now I am eating better and feeling a bit better, and the bleeding has subsided and I have hardly any pain. At the hospital they gave me Tramadsol for pain and it had the reverse effect!. I am terrified that I cant seem to take any pain medication at all, i literally curled up into a ball in my bed and could hardly move..even to Poop!!!

Tommorow I find out if they have given me the go ahead for the second infusion of Remicade..I cant allow myself to think that they wont do that but one never knows.

I keep thinking about my time in the hospital and I think I have a bit of PTSD from it..I had a horrible nutritionist that didnt appear to understand what salicyates actually are and I felt like she hated me for it and gave me awful bad food..on top of that she looked exactly like that horrible nurse (Nurse Ratched)in the cult move One Flew Over the Cuckoos Nest..Also i didnt like the women in the bed next to me, she blathered perfume on herself, despite my telling her i had a serious Chemical allergy to these toxins and she wore red lipstik morning and night, and I wouldnt mind but she only had one front tooth!!!..ha ha ha Fortunately the girl on my left was lovely and saved my sanity..

Sounds like a hellish experience, i can picture red lipstick smiling a around a singular tooth. I would have lost it with the fragrance...ugh! But its good you had one sweet roommate...

Good you're home now.....Pumpkin will love you up 😄

q

Oh oh.....i need clarification now. Brain fart.
q

Oh goodness. That sounds crazy! How were you even supposed to relax so you can heal in that environment?! I will never complain about my little hospital again. I'm glad you're home....sometimes it seems easier to get back to healing once you are home and in control of your environment.

amandleigh26 said...
Oh goodness. That sounds crazy! How were you even supposed to relax so you can heal in that environment?! I will never complain about my little hospital again. I'm glad you're home....sometimes it seems easier to get back to healing once you are home and in control of your environment.

I know right! On the day before I left I was woken at 6am by a nurse stinking of perfume. I almost gagged...she was there to take my blood pressure!! Lol!!! Then the women next to me started slapping on her smellies too, and finally, a nurse came in wearing so much aftershave that my chest tightened up and I felt like I was having trouble breathing. I had to leave the ward and go and sit outside in the corridor..I was actually scared as that had never happened to me before...what a set of idiots!!! I am still upset about it.

Anyway I am home but worried as I am supposed to recieve my second infusion of Remicade this Friday..my daughter rang up today to confirm and it's not looking good, it might not happen, it might be Monday, although I will know more tomorrow. Perhaps iPoop can confirm that if that happens it will not negate the first infusion..will the second infusion still work if I have it on Monday? I feel like I'm running on half a tank, I've had the first infusion and my body is waiting for the second.

Oh! that's a relief because I was a bit worried.

I'm sure I will get it...thanks

The other thing I am concerned about is that I read on here that Remicade can cause mouth ulcers.

I have a rare condition (of course I do!!) called Oral Lichen Planus. It is a chronic inflammatory condition. After my first infusion, it flared up quite badly. This is the first time this has happened in years, and it can be very serious and so it terrifies me to think that it might become a problem for me. Oral Lichen Planus at its worse is off the scale and it presents itself with multiple mouth ulcers usually under and alongside the side of the tongue, and always with white lacy patches of skin everywhere in the mouth, and with swollen gums/tissue. In some cases, it can become hard to eat. I will just have to pray that this does not happen, but it's a concern.

I recieved approval today for the medicine but they have decided to switch me to humira now..strange...I hope that
Is going to be okay bearing im mind I have had one dose of remicde.

nssc..Yes I feel fortunate and lucky, I'm due to get it next Thursday now. I am pretty sure the Remicade triggered the Oral lichen planus, and now, of course, I won't be continuing with it so maybe that's a good thing..I don't fancy a mouth full of ulcers.

Yesterday I narrowly avoided a serious accident that would have made me sick. I almost placed my hand right on top of a Scorpion! Yes, a bleeding scorpion! I had been walking my dogs, I was tired, I bent down to take off my boots, and I put up my right hand to support myself, and in the blink of an eye I saw a black oval shape on the wall and I somehow quickly managed to avoid it. On closer inspection, it was a scorpion curled up, but on the wall of all places...crazy or what!!!

I keep an epi pen handy, but really, that's the last thing I need right now lol!

Since the first Remicade infusion and since I have been at home eating well, things have turned around a lot. I have no pain, no obvious blood, and my poop is starting to form back into a normal shape so it appears just from one treatemtn things are turning around...happy days!

Scorpion! Wow, good thing your reflexes are in good working order....yikes😲

Im not clear on the Remi....are you on it now or something else?
q

This is bizarre: you shouldn't be chopping and changing between biologics. I bet it's a cost issue: Humira is cheaper.

I mean, it should work if Remicade works, but still...

Poppie,

I'd ask about the generic version of Remicade. They came out last year. It might be cheaper than Humira which still has a patent.

Sounds crazy--- team has to get their act together. However glad you are home and hopefully on the way to feeling more normal. Let us know how you do with the Humira.
B