In the hospital

I am in a room with 6 beds..the 3 beds opposite contain two terminaly ill women that are completely out of it and have their diapers changed constantly.its very clean and totally unlike the er experiencee.
I am upset though and feeling paranoid. They didnt give me my 60g iv steroid last night and so you can imahine how that feels. I am told I will get it at 5 am..so that better happen.
They dont want to give me a biologic which I knew would be a problem. Its money
Not sure whats going to happen here..my poop looks like carrot soup and I still have constant pain.
No one speaks english and so it makes everything harder.
I do pay a substantial amount every month into their health system. For the first time I have someone with uc to talk to...her health is poor and she has been waiting nearly a year for a biologic..and shes a local tica and so it doesnt look good for me.
Manana I hope to speak with my gi
Ignore typos ta

Poopie what area are you located in, is it costa rica? I noticed the term "tica" you used. My wife is a Tica also, she was born in Alajuela.

Last nt cyclosprine was mentioned. An evil drug but it might pull me out of this situation. It is not something I could take longterm..but I am at a loss as to what I could pair it with for maintenance. Azathioprine didnt work for me but I had heard that 6mp is a cleaner version. Any thoughts...I am thinking I need to try to buy some time and go back to england for treatment and help.

Oh no Poppie, so sorry to hear this. My thoughts will be with you, and I am wishing all the best for you. If you are well enough to travel, then that might be a good idea.

I am so sorry you are going thru this.

My thoughts and prayers are with you.

IMO-NCOT talks about her care in England and it sounds like she gets the care she needs. I think I would go to the place that had better Healthcare and where I had a support system.

Good luck. Please let us know how it goes.

Clo

You could ask for IV-based Cyclosporine as a rescue med (it's a good alternative to IV steroids for non-responders of steroids) and transition to oral-methotrexate for a trip back to England. Methotrexate is faster-acting than 6MP/Imuran, but in the same class of meds.

Costa Rica might be pretty and fun to visit, but sure sounds pretty-sub-par in healthcare arena. And it does sound like you need top-notch healthcare to beat this. No idea if there are any residency-length requirements of UK's health system, just a consideration to make sure...

Whether it's biologics or surgery, I do think you need a solution. You've just been struggling and suffering too darn long with this awful flare, and not responding to anything. You are waay overdue for a long remission, or to be-uc-free as a j-poucher.

Oh no! I hope the cyclosporine works and you can travel elsewhere for treatment. What a shame that you can't get good care in COsta Rica, it is such a lovely place. Hugs to you!

I tried methotrexate but never cyclosporine - my GI said I could go to the hopital and give it a shot, but I wanted surgery instead. I didn't want anymore bandaids. I used 6mp with OK results for a period of time, but I am not sure what the chances are of success with it if you didn't respond to Aza. Maybe a good question for the doctors. I personally don't think MTX is a great choice for maintenance. While it sounds plausible, probably only for the reason that it hasn't been tried, but in reality there is really no evidence of it inducing remission for people with UC. Often people use it in conjunction with biologics (that was my situation), but it didn't help with anything for me. I was on it when I ended up hospitalized with septic shock too, so I will always have that in my mind in relation to MTX. Nothing is worth going through that again, not a colon, not remission. Good luck with the cyclosporine! It does seem like you need to travel to get the proper care.

I'm sorry Samantha that you are going thru this I hope you can find a bit of relief before heading home because I know it's torture to try to get there with nothing to aid you. Please keep us informed okay?

Cyclosporine requires weekly blood work and probably daily blood work while in the hospital.

Hi its tricky and slow on mobile but wanted to share that the docs have changed their minds!! I am to have adalimumab but I cant have it now...I must wait...probably max 2 months..hopefully less as everything has to go through red tape here. Short term tonight they give me cyclosporine through iv and because of my allergies they want to monitor me. I feel so gratefull to them for coming thru for me..I think when they saw the state of my colon it changed their minds..this is first time I really understood how sick I had become and I am going to try to relax in the hospital and not moan..thanks for listening.

Im still in the hospital and im not feeling relaxed!
Last friday I was told to expect cyclosporine..then someone came and told me they were giving me tacrolimus instead! I fumbled around on my slow mobile to find Info on it..I only had about an hour and you cant just trust everyone here.
I fell asleep and woke up to the treatment being administered...but it wasnt either of the two. It was remicade. I was shocked but obviously happy. It was clear that both my docs were surprised.
Today I found out that the panel are upset and I got it by mistake. Some one messed up. Tommorow they meet to discuss..im supposed to have second infusion date set tommorowm.
I cant think that they will now go back on the process that has been inadvertently set?

... as long as they keep going with it.