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In the hospital

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Ulcerative Colitis
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Poppie
Veteran Member
Joined : Feb 2014
Posts : 2161
Posted 6/18/2017 5:27 PM (GMT -8)
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
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17869
Posted 6/18/2017 5:29 PM (GMT -8)
Oh no. I am so sorry to see this! You poor thing. I don't know what to say. I hope you're feeling better quickly & that you can get something to help get you off those steroids soon.
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Electricianw/UC
Regular Member
Joined : Dec 2013
Posts : 161
Posted 6/19/2017 2:43 AM (GMT -8)
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.
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Michelejc
Forum Moderator
Joined : Jan 2011
Posts : 2836
Posted 6/19/2017 3:05 AM (GMT -8)
I'm sorry. I hope you feel better soon.
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Poppie
Veteran Member
Joined : Feb 2014
Posts : 2161
Posted 6/19/2017 4:32 AM (GMT -8)
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.
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6329
Posted 6/19/2017 4:56 AM (GMT -8)
Cyclosporine is the most effective UC medication available. So if you don't have a bacteria infection like c.diff then it should pull you out of it.

You could try 6-mp or methotrexate.

There are generic biologicals in the pipelines. There was one approved recently for Remicade.
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2561
Posted 6/19/2017 6:51 AM (GMT -8)
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.
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Poppie
Veteran Member
Joined : Feb 2014
Posts : 2161
Posted 6/19/2017 7:40 AM (GMT -8)
Keith I have told them I want to go ahead with the treatment it might work and buy me some time before possibly going back to uk.
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1771
Posted 6/19/2017 8:08 AM (GMT -8)
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
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6329
Posted 6/19/2017 9:00 AM (GMT -8)
I've been on Cyclosporine twice, I liked it and it worked within 4 days and had me in remission in 2-3 weeks.

Good luck. I'd ask to start tapering Prednisone within a few days of starting Cyclosporine.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16404
Posted 6/19/2017 9:03 AM (GMT -8)
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.
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6329
Posted 6/19/2017 10:47 AM (GMT -8)
I've always dreamed of retiring to Costa Rica's coast but my health has always concerned me in a less developed country.

I hope they find a cure before I'm ready to retire or move, maybe the new biosimilars will level the playing field in terms of costs.

--Keith
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2578
Posted 6/19/2017 2:27 PM (GMT -8)
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!
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ewafromwarsaw
Veteran Member
Joined : Jun 2013
Posts : 1423
Posted 6/20/2017 2:50 PM (GMT -8)
i wish you a quick recovery followed by a life long remission smile
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17869
Posted 6/20/2017 6:53 PM (GMT -8)
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.
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Poppie
Veteran Member
Joined : Feb 2014
Posts : 2161
Posted 6/21/2017 5:16 PM (GMT -8)
I had a short version of a colonoscopy today..my colon looked shocking. I want to start this cyclospfine..is the dosage weight based. Getting the correct dosage is crucial for me because if I go too high my body will reject it. Im hoping to go home at the weekend..I cant bear this.
Thanks everyone
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Red_34
Elite Member
Joined : Apr 2004
Posts : 23581
Posted 6/21/2017 7:29 PM (GMT -8)
I'm sorry Samantha that you are going thru this sad 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?
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quincy
Elite Member
Joined : May 2003
Posts : 33478
Posted 6/21/2017 8:05 PM (GMT -8)
Sad to hear about the c-scope results, Sam.
I hope the cyclosporin is able to have you feeling better.

Hugs,
q
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6329
Posted 6/21/2017 11:21 PM (GMT -8)
Cyclosporine requires weekly blood work and probably daily blood work while in the hospital.
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Tblock1985
Regular Member
Joined : Jun 2017
Posts : 171
Posted 6/21/2017 11:29 PM (GMT -8)
On a different note Costa Rica is a stunning country by the way smile just recently come back. We're you on holiday? Just feel so bad for you if you got extremely ill whilst on holiday. I would say go for the cyclosporine. Yes it's a very strong drug but it got me out of a horrendous flare when I was diagnosed and in hospital myself 7 years ago. It was injected through IV and I felt horrible when I was on it but it got rid of my disease and I was flare Free for 6 years.
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Poppie
Veteran Member
Joined : Feb 2014
Posts : 2161
Posted 6/22/2017 1:14 PM (GMT -8)
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.
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ambling
Veteran Member
Joined : Feb 2011
Posts : 1075
Posted 6/22/2017 4:48 PM (GMT -8)
Well done. Good plan, the relaxing part too. Not easy in hospital but helpful.
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Poppie
Veteran Member
Joined : Feb 2014
Posts : 2161
Posted 6/27/2017 12:39 PM (GMT -8)
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?
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Hugo18
Regular Member
Joined : Mar 2017
Posts : 264
Posted 6/27/2017 1:21 PM (GMT -8)
That sounds like an excellent mistake to have happen to you!!
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2561
Posted 6/27/2017 3:25 PM (GMT -8)
... as long as they keep going with it.
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