In the hospital

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Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1997
   Posted 6/18/2017 6:27 PM (GMT -7)   
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
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking 5mg pred daily and smoking 3 ciggies a day. Will start LDN soon.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15424
   Posted 6/18/2017 6:29 PM (GMT -7)   
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.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Electricianw/UC
Regular Member


Date Joined Dec 2013
Total Posts : 161
   Posted 6/19/2017 3:43 AM (GMT -7)   
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.
25 Male Dx'd UC in Dec 2013
Current Meds/Supplements: 60mg prednisone (flare atm) 4 Lialda 1.2g, tumeric/curcummin, digestive enzymes, renew life probiotics 50 bil, metamuscil, L glutamine 5g.. Modified SCD diet to include white rice.
God is good, all the time, and all the time, God is good!

Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 1970
   Posted 6/19/2017 4:05 AM (GMT -7)   
I'm sorry. I hope you feel better soon.
MODERATOR-UC FORUM
58, female - diagnosed with moderately severe proctitis/mild diverticulosis
Lialda - one a day
6mp - 50 miligrams
VSL#3 DS - 1 pack a day or as needed
Zocor - 40 mg
Calcium with Vitamin D
Glucosamine
Magnesium
B-Complex

"Fly under the radar" - Dad -

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1997
   Posted 6/19/2017 5:32 AM (GMT -7)   
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.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking 5mg pred daily and smoking 3 ciggies a day. Will start LDN soon.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4812
   Posted 6/19/2017 5:56 AM (GMT -7)   
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.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Serenity Now
Veteran Member


Date Joined Jan 2009
Total Posts : 2045
   Posted 6/19/2017 7:51 AM (GMT -7)   
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.
Female, 50, Vancouver BC
Pancolitis: Currently in remission

Jan-Mar2009: Asacol HD. Resulted in severe joint pain and no discernible benefit.
May26-Sep4/2016: Mezavant 4800 mg
Sep5/2016 - : Mezavant 2400 mg

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1997
   Posted 6/19/2017 8:40 AM (GMT -7)   
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.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking 5mg pred daily and smoking 3 ciggies a day. Will start LDN soon.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 721
   Posted 6/19/2017 9:08 AM (GMT -7)   
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
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4812
   Posted 6/19/2017 10:00 AM (GMT -7)   
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.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11035
   Posted 6/19/2017 10:03 AM (GMT -7)   
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.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 75mgs 6MP, 4.8g Lialda, and rowasa

I swore to myself that once i was off of prednisone that I'd burn both the pills and bottle with great hedonistic enjoyment: booze, food, and dance. And if I ever need a colectomy... ;-)

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4812
   Posted 6/19/2017 11:47 AM (GMT -7)   
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
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1866
   Posted 6/19/2017 3:27 PM (GMT -7)   
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!
41 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 2 Lialda + sfRowasa nightly - supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 2 TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

ewafromwarsaw
Veteran Member


Date Joined Jun 2013
Total Posts : 1219
   Posted 6/20/2017 3:50 PM (GMT -7)   
i wish you a quick recovery followed by a life long remission smile
Ewa, 24 yrs old from Warsaw
Left-sided colitis, diagnosed in September 2012
Current meds: 2x2 Asamax (500 mg) and Salofalk enemas (twice a week)
Mutaflor or VSL#3

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15424
   Posted 6/20/2017 7:53 PM (GMT -7)   
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.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1997
   Posted 6/21/2017 6:16 PM (GMT -7)   
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
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking 5mg pred daily and smoking 3 ciggies a day. Will start LDN soon.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 6/21/2017 8:29 PM (GMT -7)   
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?
SHERRY
Moderator-Allergies/Asthma, Alzheimer's, IBS, Co-moderator-UC
Diagnosed Left sided UC '92 - meds: Apriso, Remicade) Unable to tolerate MOST mesalamines* Currently in Remission, IBS, Diverticuliar Disease, Fibro, Sacroiilitis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry eye syndrome (which caused a blockage -had the DCR surgery 2015 success!), allergies-Zyrtec

quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 6/21/2017 9:05 PM (GMT -7)   
Sad to hear about the c-scope results, Sam.
I hope the cyclosporin is able to have you feeling better.

Hugs,
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4812
   Posted 6/22/2017 12:21 AM (GMT -7)   
Cyclosporine requires weekly blood work and probably daily blood work while in the hospital.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Tblock1985
New Member


Date Joined Jun 2017
Total Posts : 14
   Posted 6/22/2017 12:29 AM (GMT -7)   
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.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1997
   Posted 6/22/2017 2:14 PM (GMT -7)   
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.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking 5mg pred daily and smoking 3 ciggies a day. Will start LDN soon.

ambling
Veteran Member


Date Joined Feb 2011
Total Posts : 632
   Posted 6/22/2017 5:48 PM (GMT -7)   
Well done. Good plan, the relaxing part too. Not easy in hospital but helpful.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1997
   Posted 6/27/2017 1:39 PM (GMT -7)   
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?
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking 5mg pred daily and smoking 3 ciggies a day. Will start LDN soon.

Hugo18
Regular Member


Date Joined Mar 2017
Total Posts : 56
   Posted 6/27/2017 2:21 PM (GMT -7)   
That sounds like an excellent mistake to have happen to you!!
2017- January-diagnosed distal colitis
2017-March hospitalized for pan colitis
Currently on remicade

Serenity Now
Veteran Member


Date Joined Jan 2009
Total Posts : 2045
   Posted 6/27/2017 4:25 PM (GMT -7)   
... as long as they keep going with it.
Female, 50, Vancouver BC
Pancolitis: Currently in remission

Jan-Mar2009: Asacol HD. Resulted in severe joint pain and no discernible benefit.
May26-Sep4/2016: Mezavant 4800 mg
Sep5/2016 - : Mezavant 2400 mg
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