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teacupsunderfire
Regular Member


Date Joined Jul 2008
Total Posts : 46
   Posted 7/30/2008 7:50 AM (GMT -7)   
Almost 8 months ago I was told I have Moderate to severe UC, I was put on 6 Asacol Daily along with 40mg of Preidonse. I did that for 4 Months and slowly tarpered off onto 10mg daily and then after 5th month it was just the 6 Asacol Daily. I was great for 5 weeks, Nothing I had a stomach of steel and could eat anything. Then Last month I again got a flare up, This one has been the worest yet. I have been on 40MG of the steroid for 3 weeks now. Not responding so yesterday they did another Colonoscopy. It took the Dr. 25 minutes and he came out when I woke up and said its now severe and he wants to start me on Remicade This week. He said he would like me to go to the ER and Get IV steriods Bowel rest and start the remicade therapy by friday.

I am 22 Years old, Male From NJ. I have been Battleing this all my life, my first time I was 5 when I had an Upper GI with a lower bowl follow through. They told me I had IBS. Little did I know it was this most likely the whole time. I am sore and tired, My energy is really low, I am having to use the bathroom Very early mornings like 2am and then again at 7am plus several times daily. I am scared to start the remicade therapy and I am looking for any advice to anyone who has been on this type of treatment.

Thank you all so much for your support and stories. You are truly keeping me alive.

Steve

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/30/2008 8:31 AM (GMT -7)   
Hi Steve,

Hang in there you can do it! You have been through so much already since you were 5, that is amazing! Every day is a new day and you can make it better than the day before. I was scared of remicade too, but heck, I think I got kidney disease from sulfasalazine which is a class B drug.......but my liver is doing fine on azathioprine which is a class D drug......you just don't know.

Try to look at this as a new possible begining, Remicade could be the right drug for you. Many ppl here do very well on it. Also, in the meantime I would try to find a Humira study you could get on just in case. That is why I am going for a 2nd at MGH Chron's and Colitis, I know they had a study there and I want that as an option for me.

Please keep us posted! Try to hope for the best (I know it is hard!).
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 25mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


teacupsunderfire
Regular Member


Date Joined Jul 2008
Total Posts : 46
   Posted 7/30/2008 8:53 AM (GMT -7)   
Thank You beth, I am mostly scared because Remicade seems to be my last option before the surgery, However I have only tried two Meds. I love my GI guy But I fear he is getting paid better if we go the remicade route.

PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/30/2008 8:58 AM (GMT -7)   
I'm learning the hard way that if you aren't comfortable with your GI then get another opinion. They shouldn't make you feel like you are stuck with them and stuck with anything they tell you. If you are nervous about the Remicade then talk to them, if they aren't willing to talk, start looking around for a new GI, maybe your primary can suggest others.

That being said I've seen MANY storeis of success with Remicade, I'm not one of them so I can't offer any input other than to say, hang in there you are amazing to have been dealing with this as long as you have already and at such a young age.
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle Align 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV monthly
- Allergies - Zyrtec 10mg 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 7/30/2008 9:02 AM (GMT -7)   
I understand your frustration. I had my first bowel series at 7 and wasn't dx'd til i was 18. I remeber spending birthdays in grade school in hospitals having tests done.

Remicade is scary but it has worked without side effects for me so far. Other drugs that are usually tried (imuran, 6mp, aza) take months to take effect if they ever do (i had no ease in symptoms after 9 months on.) My GI wanted remicade before that becuase can take effect so much quicker but insurance wouldn't let us.

If you are unsure get a second opinion.

Good luck!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


teacupsunderfire
Regular Member


Date Joined Jul 2008
Total Posts : 46
   Posted 7/30/2008 9:34 AM (GMT -7)   
Allow me to add to my sad story for a minute here. First thank you all for replying to me. I love my GI and they are very open and talk with me through every issue. To add to the stress I am single father of a little girl named hannah, Her mother and I split in high school, she took off and I have been trying to take care of her myself ever since. I know a ton of you here have done Remicade & are having great success however my worst fear is the surgery I will do anything to not have it done and I feel like this is my last option. I am bleeding heavy & it scares me, My fear is what would i do if I had to do the surgery and I didn't make it or something you know.

More on Remicade: I was approved and just need to setup a date for the first infusion. I am really worried about it though. I hate needles and I hate tests & Dr; would anyone like to tell me how long they have been on it?

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 7/30/2008 9:46 AM (GMT -7)   
I have been on remicade since march. I too HATE needles. I tend to pass out. I have horrible veins. The last time I was knocked out for a procedure it took 2 phlebotomists and an anistesiologist to get the iv started. 11 pokes in all. That said I have never had a problem with remicade needles. they are very tiny. I've never even been poked twice for remicade. After the needle the rest of the remicade process is actually relaxing. My first infusion i sat next to a woman who had been on remicade for 10 yrs and was doing great.

Surgery is scary especially as you are a lone caregiver. I would suggest getting as much info as possible now so if the time comes you need to make that decision you are ready and have a plan. j-pouch.org is a great resource as well as the ostomy forum here. I hope you are one of the 80% who never need surgery but it is good to have all the info.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 7/30/2008 9:46 AM (GMT -7)   
Hi Teacupsunderfire, and welcome to HealingWell. When I started Remi, it wasn't even approved by the FDA for UC; only for Crohns and Arthritis. The day I was to start my first treatment, I can remember sitting on the toilet with my head in my hands hoping and praying that the Remi would work for me. I was so sick, had no energy. The next day (and this doesn't usually happen with most) but I could really feel the difference and since that day I haven't looked back. It's been 3 1/2 years now since I've been on the infusions, but I feel great and live well.
Carol

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


teacupsunderfire
Regular Member


Date Joined Jul 2008
Total Posts : 46
   Posted 7/30/2008 10:57 AM (GMT -7)   
Quick question before i head out to the hospital. What if you have to go while getting the infusion Is it something you can you know walk to the bathroom with?

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 7/30/2008 10:59 AM (GMT -7)   
Yes you can! I wondered the very same thing, but all they do is unplug the IV from the wall and you can walk to the bathroom with the IV pole. Very simple! Don't hesitate to ask any questions; you'll do fine and it's a pretty easy procedure.

Carol

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


teacupsunderfire
Regular Member


Date Joined Jul 2008
Total Posts : 46
   Posted 7/30/2008 11:02 AM (GMT -7)   
Wow, thanks I was worried about that one... Cause i don't know if I have the 30 seconds to wait sometimes, Do you think I should pack some clothes They said I will be there for a few days. I will bring my macbook to keep you updated.

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 7/30/2008 11:06 AM (GMT -7)   
Pack some comfortable clothes, and bring some things to keep you entertained. Definitely bring your Mac to keep us updated! :-) Hey, I know how it is...when you gotta' go, you gotta' go, ha. Take care, and let us know how you are doing.

Carol

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 7/30/2008 11:26 AM (GMT -7)   
Best of luck to you with the Remicade and I hope it works out for you....hopefully it wont be a last resort and hopefully it will work. You will actually get used to the needles....I have been IV'd so many times, its actually fun to watch now.... I had a pick done once but luckily they insert those when you are under....those are huge. I am 34 and have had UC for about 14 years. I would love to take Remicade but cant because of a pituitary tumor I had removed - they say I am not a good candidate for it due to the complications it could cause. That being said - it was basically my last resort before surgery. I have moderate UC in my whole colon....taking 12 asacol, fish oil, and probiotics. Not working well.... However I am mortified about the surgery and will do what it takes to avoid it if possible....some may disagree with my approach but that is how I feel....
33 yr old male. UC for 14 years. 5mg pred (tapering off), 12 pills Asacol per day, Dicyclomine (for cramps), 0.5 - 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!)  "I poop in the woods because I can"


teacupsunderfire
Regular Member


Date Joined Jul 2008
Total Posts : 46
   Posted 7/30/2008 11:30 AM (GMT -7)   
Thanks leaving for the ER in about a half hour. Really you guys are the best.

tardofit
Regular Member


Date Joined Jul 2008
Total Posts : 28
   Posted 7/30/2008 1:25 PM (GMT -7)   
Praying for you now!

22 years old....bummer! I'm 29 and their is always someone out there with it worst.

I can't wait for my Ileostomy surgery. NO MORE MEDS! NO MORE TOILET RIDES! NO MORE HOSPITAL STAYS!
NO MORE PREDNISONE TAPERING FROM 60mg!
29 year old male
 
12th year suffering UC


piper_chris
Regular Member


Date Joined Jun 2008
Total Posts : 73
   Posted 7/30/2008 11:31 PM (GMT -7)   
You mention you will probably get IV steroids in the hospital. This year I was bleeding heavy and 60mg prednisone at home wasn't working. So I was hospitalized and given IV steroids (100 mg solumedrol) which did eventually stop the bleeding. But steroids take a toll on your body, I can understand why doctors want to use 6mp, Imuran, or Remicade to avoid repeating the steroid thing over and over again. I think the steroids or the remicade or the combo will stop your bleeding which will be a big relief. Another smaller relief will be when they give you just a simple fluid IV, I bet you are dehydrated to some extent. A while on the IV perked me up long before my bleeding stopped. I had wild anxiety, tension, moodiness, depression, and kinda crazy thoughts due to the IV steroids and/or sleeping meds (ambien) in the hospital. And I was very wired from the steroids. But then when I got off the IV steroids and sleeping meds and went home I started returning to my own personality. At home even though my steroid dose was still high at first (80 mg prednisone) it wasn't nearly as intense as having it intravenously. I think it was mainly the steroids magnifying the fear and anxiety I already had. I'm not trying to scare you about the mood/anxiety stuff, but to tell you if it happens to you (it may not, everyone reacts differently) that it will subside when you get off the IV steroids and you'll start feeling more of the "normal you" gradually. I wish someone would have told me that anxiety was a possible effect of IV steroids and that it would go away as I'd come down to lower doses. I didn't know it was a possible IV steroid side effect, I was wondering if I was going a bit crazy just from stuff my own head (not realizing how much of it was chemistry). If you get more anxious on the IV steroids, keep breathing, deeply... this too shall pass!
- female 41
- diagnosed ulcerative colitis Feb 2005
- currently 15mg prednisone (tapering down from 80mg), 75 mg 6-MP/mercaptopurine/purinethol, asacol/mesalamine 4800mg (4 pills x 3 times day), 1 Canasa 1000mg nightly
- VSL#3, Benefiber, multivitamin, chewable calcium, fish oil, sometimes iron pills

Post Edited (piper_chris) : 7/31/2008 12:38:19 AM (GMT-6)


teacupsunderfire
Regular Member


Date Joined Jul 2008
Total Posts : 46
   Posted 7/31/2008 12:31 PM (GMT -7)   
So i am in the hospital, I opted to wait before i just jump on remicade, I am going to try 6mp first. Right now I a, on IV drip for fluids and food as I am on full bowl rest. I am really drained, I am also on IV steroid every 8 hours.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/31/2008 12:51 PM (GMT -7)   
I had surgery 7 years ago for UC. I did not want it and was all but kicking and screaming up to the time of my surgery consult. However, in retrospect it's been the best thing to happen to me. I hope that you don't have to make this decision and that Remicade will work for you but if it doesn't, surgery is a viable option. I can hike, backpack, eat what I want, and my life is on MY schedule not my disease's schedule. Since you have been ill for some time it's probably worth doing a bit of research on surgery just-in-case. There are many options and choices and if you get familiar them it might lessen the fear if it gets to that point. Again, I hope you don't have to face but knowledge is power.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 7/31/2008 1:10 PM (GMT -7)   
Steve,

Remicade worked for me when I was going 15-20 times a day; then I managed to control/reduce my symptoms through diet.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/31/2008 1:22 PM (GMT -7)   
teacups, glad you have a plan and are on your way. Piper_chris is right about the steriods, even 60mg had my crying at everything, though I was in the flare from hell, upset about that and my kidney dx, so that did not help @40mg I got much better w/my moods.

take care!
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 20mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


teacupsunderfire
Regular Member


Date Joined Jul 2008
Total Posts : 46
   Posted 8/1/2008 9:13 AM (GMT -7)   
I was updatd to low res diet today and I am just getting ready for the dr to come in.

P-Fit
Regular Member


Date Joined Jun 2008
Total Posts : 419
   Posted 8/1/2008 9:44 AM (GMT -7)   
Welcome to the community Steve. You'll find lots of support and understanding here. I'm sorry you're going through such a hard time. Hang in there.

Dee-38yrs old 
Diagnosed with UC in 2004-PTSD/Panic Disorder/Depression in 2007 & Fibromyalgia 2008
750mg colozal 3 pills 3x a day, .5mg clonazepam, 7.5mg Lexapro
1,000mg canasa suppositories (PM),
 Fioricet-Migraines
Prilosec-Not sure(Heartburn/GERD), Fish Oils
GNC Womens Active Formula Multi-vitamin
Colonoscopies-3 and one on the way 8/12/08


tardofit
Regular Member


Date Joined Jul 2008
Total Posts : 28
   Posted 8/1/2008 12:03 PM (GMT -7)   
I was flaring really bad back in the fall when the dr said I needed some steroid treatments at the hospitol. So I went and bunked up for a week. That's when I got my first bag of remicade,...after what seems like 5gallons of IV steroids. When I took the remicade I was sitting on the potty poo'in, all while the nurse was tending to me. They said I would feel faint and flush when recieving the fluids. Well, I did, and just about past out on the potty.

Remicade is SUPER expensive! One treatment.....$7000 for self paying patiants! $10,000 for insured patients.
I told the dr I didn't want to do remicade after that one. The dr said when taking remicade to control UC or Crones, it must be scheduled and consitant. If just getting it when needed(like two or three times in a year)your body will build anti-bodies to it, making it useless.

Let us know your progress!
29 year old male
 
12th year suffering UC


teacupsunderfire
Regular Member


Date Joined Jul 2008
Total Posts : 46
   Posted 8/1/2008 5:15 PM (GMT -7)   
I just got home, They discharged me, I am on a low res diet for one week, 40MG of Steroid, I am to get a CBC weekly for white blood cell counts, I am now on two Lialda 1.2g Pills twice daily, 6-MP 50MG daily, Rowasa Enema PM, the predisone taper is 40 then 35 then 30 etc for each week.

Anyone have anything like this before? Any Luck? How about these diets of have been reading about Breaking the Vicious Cycle or something like that?

I declined the remicade for now because its my last thing to try before surgery and I responded well to the IV steroids, I am going 4 or 5 times a day but no more blood.

Thanks for the support.

redhah
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 8/1/2008 8:16 PM (GMT -7)   
Hello Steve,
I have been on remicade for 7 years and it has really helped keep things under control. The day after I got my first remicade treatment the bleeding stopped. But I still get constant flare ups and have not been in remission for more than 9 months. I have looked into the surgery option too and it scares me a lot.
22 yr. old female

diagnosed age 15, current meds: 100 mg azathioprine, iron, remicade every 8 weeks
have taken: asacol,colazal, prilosec, prenisone, rowasa + cortisone enemas, flagyl + vancomycin for c-diff
hospitalized three times: 2002 April (2 weeks) 2003 December (1 week) 2006 (1 week), have had pick line
have had 3 colonoscopies, had blood transfusion Feb 2008

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