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New to UC- remicade and steriods not working-HELP!

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Posted 7/19/2013 9:30 PM (GMT 0)
Hello,

I am new to this forum and am hoping it will be a good source of information and support.  My background:

-Symptoms started August 2012.  I pushed off going to the dr until May 2013

-Had sigmoid and diagnosed with UC May 2013.  Started Lialda both oral and rectal form

-That worked for a week or two.  In hospital for 3 days end of May 2013 and put on Prednisone

-Back in the hospital a few days later because I couldn't hold down food so I couldn't take my pills. Was in hospital for almost 3 weeks.  While there they found that my entire colon was effected and my inflammation was more severe than they originally thought. By end of stay, they started Remicade alongside 60 mg of Prednisone. 

-First Remicade treatment done June 18th(on my 30th birthday while in the hospital)

-Second Remicade treatment done July 5 (finally outpatient) and it kicked my butt! I was in bed for 3 days!!And I felt NO different. everyone kept telling me I was getting better compared to the previous month but I felt no different.  I was still bloated, gassy, no change in stool other than going once a day, and no decrease in pain.

-Tapered down to 40 mg of prednisone and this week ended up back in the hospital due to more continued diahrrea.  They were concerned for dehydration.  and Diarrhea started after trying grilled salmon at a resturaunt, but I had also been feeling achy and tired and just not good for 2 days before that

-So its Friday July 19 and I have been in the hospital since Tuesday July 16.  And have since opened a can of worm because the doctors are STUMPED!!

-Colonoscopy done and showed a lot of inflammation and blood throughout the entire colon still AND now they think it may be Crohns disease and not UC.  They also did a barium xray and I don't think that has even given then a definite answer as to which diagnosis it is.

-So I am quickly responding to IV steroids but I am obviously not responding to oral steroids and they decided I did NOT respond to Remicade.

-They have decided to put me on Humira which kind of scares me because of its side effects.  Anywho- so hopefully I will start Humira today.  But the biggest concern is what do we do about the steroid.  I obviously need to be on a steroid but if my body is taking accepting them orally how am I supposed to manage this at home?  so im still in the hospital so that I ca receive IV steroids in the mean time.

So its been a real struggle mentally and physically since June. I have lost over 50 lbs.  I have missed so much work.  Mentally I am worn out and have lost hope in so much.  Friends and family don't quite understand the impact it has really had on my life.  I have gone from being a semi-social food loving person to being stuck indoors resting with no physical strength to do much that can eat anything.

how do you deal with the new life change?  Have you dealt with such a long, severe flare up?  Has Remicade not worked but something else did?  Is it just time to do surgery?  Have you had the wrong diagnosis or confusion with the diagnosis?

Any insight on how to manage my new life would be great.  I look forward to hearing from you and being a part of this new community.

thank you for reading  :)

-Erica

Posted 7/19/2013 10:35 PM (GMT 0)
Yes, I dealt with a long flareup. I hesitate to tell you but I was in a flare for nine months. That's long, but others have dealt with longer.

First of all, regarding the work situation -- you might be eligible for FMLA or short term disability leave. Look into that. You should not be using vacation days for this... this ain't no vacation!

Dealing with the life change is something that you just have to do day to day. I can't tell you to snap your fingers and get used to it. I've been getting used to it for over a year now. I didn't really "accept" what was going on until the end of my flare (ended with surgery, not remission). Life is a journey... you don't need to flip a lightswitch right this minute from "Doesn't have UC, feels great" to "Has UC, feels like crap". Just know that you're in the middle of something really big and difficult. It won't always be this way. It might get worse. It might get better. Take it one day at a time, as the alcoholics say.

I see you're in Oakland -- you need to be treated by a GI who *specializes* in treating UC and Crohn's (also called IBD - Inflammatory Bowel Disease). I know there are amazing surgeons at UCSF but I don't know any specific GIs... hopefully someone more familiar with the area will come along. You need a doctor on your side who knows UC and Crohn's inside and out. Most GIs simply haven't treated enough IBD patients in their careers to be able to competently handle difficult cases. They might get lucky and treat you well, or they might through lack of experience botch the job (this happened to me with my first GI -- obviously I lived to tell the tale, but I suffered more than necessary).

I would start with finding the right GI before you do anything else. You can discuss your treatment options, including surgical options, with him or her. I am always a proponent of getting a surgical consult, even if you don't think you need it yet, because the time when you NEED surgery NOW is not a good time to start shopping for surgeons. If you've already had a consult and found a surgeon you like and trust, in an urgent situation you can get scheduled much faster, and feel safer knowing you'll be in the hands of someone you trust (instead of just whoever is available fastest for a patient they've never met).

On a personal note, I just want you to know that there is hope. I lost 40 lb during my flare. I was out of work for four months, hospitalized, completely incontinent (wore adult diapers 100% of the time), rarely left the house, and had to move out of my apartment and into my parents' house because I couldn't take care of myself. I ate a strict diet of boiled chicken, white rice, toast, and pasta because everything else worsened my pain and symptoms. I had an appointment with my GI every single week. I never slept for more than two hours at a time. Today I'm back at work, living independently, eating as I please, dating a great guy, freed from worrying about finding a bathroom, active, and social.

For me surgery was what I needed to do to get there. For you it might be Humira, or a different drug, or something else entirely. But the point is, there is hope -- you are NOT too far gone to ever get back to a great life. Do I wish I never had UC? Ummm OF COURSE, but am I a stronger person now because of it? Yes, absolutely. Going through what I did opened my eyes and made me more caring and loving to my friends and family, and inspired me to re-evaluate my career and make sure I was spending my life doing what's most important to me. There is a way for good to come out of this, and you will find it.
Posted 7/19/2013 11:29 PM (GMT 0)
I'm sure you've been tested out the wazoo but I'll ask anyway: have you been tested for C. dificile? If not you should be tested for it and any other pathogens. Start getting copies of your medical records, or perhaps you have a family member who can get them to start a file of what you had done when, where etc

I wish you get some improvement and/or someone to talk to for moral support.
Sucks to be your age and so sick.
Posted 7/20/2013 12:04 AM (GMT 0)
Sorry you are dealing with this ... unfortunately, this is an awful disease and nobody has the same course with it. My mom has UC and doesn't even take any meds, has mild flares every 4-5 years. My dad had Crohns and diverticulitis, and had several bowel resections but generally didn't have terrible symptoms. I basically flared for 10 years with no real remission - got some symptom relief from some meds but never felt completely good. Even on Pred, I never it full remission. Surgery was my only option to feel better. Three hospitalizations since June is a lot - but there are many other meds they have not tried for you yet. I encourage you to get a surgical consult, but maybe talk to your GI about other options as well - Lialda or Asacol, 6MP, rectal meds, flatly, Cipro (basically, look at Liz's prior meds list). And if you go the med route, give it time to work - some can take months to start working. But if you go the surgical route, do your research, and be prepared for thevisks, especially if it turns out you have Crohns (you would be unable to have a j pouch and would have a stoma for life). It's a major surgery and you need to be mentally ready for the changes to your life.
Posted 7/20/2013 3:39 AM (GMT 0)
Definitely make sure you're seeing a GI who specializes in UC. Not sure if you are or not, but if you're not, find one.

I'm surprised they're already declaring Remicade to be a failure since you've only had the first two loading doses. I was told by multiple medical professionals (UC specialists AND the nursing staff at my infusion center) that Remicade can take up to 10 weeks to start working. You can also increase the dosage and frequency. Since you're not having any adverse effects from it, I'm not sure why they're giving up so early. Humira sometimes works for people when Remicade doesn't, but they're very similar drugs.
Posted 7/20/2013 12:50 PM (GMT 0)
I was in the hospital in 1986 for 5 weeks when I found out I had UC.I had transfusions & was transferred to Mass General in Boston to have surgery. The GI doctors wanted to try various meds before any surgery. I finally responded and never needed surgery. I was on azulfidine,cimedadine,prednisone,imuran.
I recently have been on asacol for 20 years without a flairup.Then I received a letter from express scripts saying asacol was coming off the market & was being replaced with delzicol.I started delzical @ the beginning of June.At the end of June I starter having all the sighns of a flairup. I am now on prednisone to hopefully reverse it. My GI has me on asacol hd.I am po'd it wasn't recommended.I hope nobody else has a problem like mine.
Thanks David
Posted 7/20/2013 1:34 PM (GMT 0)
RS diet research shows it ferments into SCFA Butyrate. High protein thins the mucous and they proved RS counteracts that healing it, thickening it which is why I can eat junk food.

RS diet is so effective I have navy beans in every meal and eat all kinds of junk between meals. No medications other than prednisone have been effective for me.

- Psyllium seed powder also converts to SCFA and is effective.
- Wheatgrass is effective and was promoted by a woman with UC
- Canned spinach is effective.
- VSL3DS is effective

Last month an Irish team proved Vitamin A controls cytokines turning off inflammatory cytokines and turning on the healing cytokines.

So I constantly make chili which is high in Vitamin A and RS Navy beans.

1 lb grass fed beef
chopped cabbage
chopped spinach
chopped brocolis
cook beef and steam/boil veggies
combine with packet of lowry's chili
Add 1-2 cans of Navy beans

My daughter and I love it and I eat it every day which allows me to eat all kinds of junk food I have not eaten in 10 years. Choco ice cream, cherry coke, donuts its crazy. Prednisone is part of the reason why so as I taper off prednisone all the 'cheat' foods will also be tapered off.

This diet works because there is real research behind it. If diet change did not help you it could be there was no science behind the choices made.

I had trouble tapering on the last flare until RS diet then I tapered 15-20 mg per week very fast.

I am also on 7.5 MG blood thinner and there is no bleeding at all. RS diet is for UC.

Now down to 5mg pred, again no blood since the first week at 70mg. I removed all ice cream as it is just too unhealthy the rest remains the same.
Posted 7/20/2013 1:54 PM (GMT 0)
hey air - welcome - sorry you're here and sorry you're having such a sucky time - it will get better - hang in there -
Posted 7/20/2013 2:57 PM (GMT 0)
Sorry you are struggling. When I was on Remicade I was told it could take up to 5 infusions to work. So I would think they should give you more time on it and see what happens. I'm confused why they would yank you off of it so soon to try Humira.

Unfortunately with UC you have to keep plugging away on what works and what doesn't work. This disease is different for everyone and everyone responds differently to the meds. You need a really, really good GI doc. I went thru a few of them because I had some real duds. For a while they thought I had Crohns too but then finally it was ruled out.

For me I had no choice but to have surgery because I cycled through all the meds and they all failed. I have a j pouch now which has been my life saver.

Good luck to you.
Posted 7/20/2013 5:50 PM (GMT 0)
I noticed this thread and wish to pass along some things I've learned through my experience with UC (had it since around 2006), but I am just so exhausted and dealing with some pain at the moment that I cannot type out what I want to. I will come back to this thread sometime later tonight and share what I can, for what it's worth.
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