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monkey_99
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/31/2009 12:32 AM (GMT -6)   
 Hello Everyone,

I had a few questions I would like to ask but first a little about me.

I'm 28 and have been diagnosed with UC for going on 4 years now. I have been on a few different drugs but am currently on Pred (40mg) and Asacol(x12) a day and I get remicade infusions(600 ml) every 6 weeks. I have been doing this for the last year and I felt better for the most part but after the holiday season I got really  bad really fast. I'm back to bleeding and just not feeling to great overall.

Ok... on to the questions.....

I talked to my doc and he fears that I am becoming reliant on pred and says that I may be able to switch to humira injections but he can't say for sure that it will work any better. So I guess my first question is.. has anyone switched from remicade to humira? and how did that work for you?

The other option I got was to get the j-pouch surgery and I'm just not too sure about that. He says that you still have frequent stools (he says 5-6 a day) but that they are not at urgent and you never have bleeding again. Has anyone here had that surgery? and what are the pros and cons of it?

To be honest the surgery freaks me out a bit but I'm getting a little desperate. My wife and I are going to have our first child soon and I'm just scared that if I can't find a reliable form of treatment that I will miss out on so much in the baby's life.

Thanks in advance for any help and sorry if anything that I'm posting has been discussed before.


gurgling tummy
Regular Member


Date Joined Aug 2006
Total Posts : 166
   Posted 3/31/2009 2:03 AM (GMT -6)   
Monkey,
First and foremost, welcome to the forum. I am sorry that you are suffering so much. As for the medicine I can't really help too much luckily for right now my UC is mostly controlable but I did want to let you know that you might want to check in on the Ostomies room with everyone that had the surgery and you could get most of your answers there. But you, of course are always welcome here, there are a bunch of people here that know all about Remi, pred and humera that will give you great advice. Congratulations on being a dad to be!! I hope that we can help you get some answers so you can be a healty part of her life.
Em
*~~*Emily*~~*
Diag. Aug 06 (Proctosigmoiditis), finally diagnosed with Fibromyalgia 12 August 08, Paxil (1 a day) for Depression, anxiety
Gabapentin (still working up to mx dose), Ambien (1 50mg a night), Venlafaxine (2 a day), cyclobenzaprine (1 10mg tab a night), Tramadol (3 50mg tabs every 4 hours), Indomethacin (1 50mg cap every 3 hours), Tylenol Extra strength (2 500mg tabs every 4 hours).
Getting ready to start Azathioprine, we'll see how that goes.


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 3/31/2009 7:52 AM (GMT -6)   
I did switch from Remicade to Humira. I'm allergic to Remicade, so... my doctor switched me to Humira. That has put me into remission. Been in remission since 2007. Humira is a good option to to towards. http://www.humira.com/ This site is a good site to look on. The only con about this medicine to me, is that it brings your immune system down. Congratulations on the baby! Hope this was some help for you.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


monkey_99
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/31/2009 10:47 AM (GMT -6)   

Thank you for the response. I will check out the Ostomies room as well as here.

 

I had one other question.

 

I am always told by my GI doc that I really don't have to restrict my diet at all and I have always questioned that.

Is anyone able to point me to a list of foods that may be good for me as well as a list of foods that could trigger a reaction?

 

I'm really just trying to get to feel as best I can before the little one arrives. If I need to change what I eat... then so be it.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/31/2009 11:04 AM (GMT -6)   
What foods to avoid is really something you'll have to figure out for yourself. Some of the most common culprits, though, tend to be dairy and grains.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/31/2009 11:40 AM (GMT -6)   
Hi and welcome. Sorry you are having to deal with UC (especially with your new baby on the way, but that will probably make you feel better just in itself, let's hope). I have had colitis for 40 years, just in the last 2 weeks I have had to up my medicine to include 6MP, unfortunately that immunosuppresent doesn't give results if it is working or not for 3-6 months. Just finsishing up a round of prednisone, don't see it doing much now that I am on 10 mg. I haven't seen bleeding though in months which is great, because I have always had bleeding over this entire time of having colitis. I haven't tried the other meds you are talking about, I do know about them though. I am also trying to figure out diet. I used to stay away from milk products and too much fruit and veggies (still do) I feel though because I have so many problems lately with the UC that I need to restrict my diet more, probably more bland with meat, chicken rice, potatoes...we'll see if this works. Hope you get the answers you are looking for. I do know people who have had the J pouch surgery and they have been very pleased with the results...Molly

monkey_99
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/31/2009 12:22 PM (GMT -6)   
Thanks again for all the info. Everyone here seems great and has been very helpful.

One last question. (Yes, I have asked my doc these but I don't care for his answers)
Can stress play any part in the flares of symptoms? I always get a little stressed out before I leave the house to go anywhere (long trips are the worst) and once I get a little worked up my symptoms get bad. Is this normal and if so... other than just not getting worked up... what can should I do about it?

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/31/2009 12:49 PM (GMT -6)   
General life stress actually causes me to get better. But some are sent right into flares. Another individual thing.

But Anxiety, that is special! Often causes my gut to react, just like you describe. It is normal, I guess. If I can't avoid a roadtrip or I have to fly, I make many preemptive bathroom visits, try to keep the car cool and quiet, and tell myself, "you are really empty, don't worry, you just went, you'll be OK..." Being the driver helps for some reason, a control thing I guess, my hubby knows to give up the keys. Immodium, underwear liners can help ease the anxiety. Others use xanax, but I didn't notice it doing anything for me. My doc totally appreciates that this is what her patients experience, was willing to prescribe the xanax, but there is only so much that she can do to help.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, tried to taper but now back up to 20-30 after several really bad days. Waiting for insurance decison on Humira...soon... 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/31/2009 4:24 PM (GMT -6)   
      By all means stress does contribute to flares.  When my daughter was going through a divorce I suffered one of my worse flares ever.  A good diet to follow is a low residue diet while flaring...low fiber.  Instead of milk, I drink Silk.  When not flaring I can eat mostly anything and drink milk.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 3/31/2009 7:26 PM (GMT -6)   
I think if I were in your shoes I would give Humira a try. You have given remicade a year to work and you're still using pred to maintain. You're also not feeling great. I understand what you mean about not being able to participate in your childs life and I think you should explore other options so you will be able to be there. I would definitely be open to surgery if I got to the point where meds weren't helping me to be free of symptoms. It's a difficult surgery and a long recovery. It's usually done in two steps and even after the second surgery you require a lot of time to heal and get used to your new system. From what I have heard it is well worth it. Must be nice to be free of pills. I hope you can get your situation under control without surgery but if you do end up with a jpouch, it will probably end up changing your life for the better. Most people who have the surgery disappear from the board because they consider themselves healthy. Some still visit and give support.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


monkey_99
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 3/31/2009 10:05 PM (GMT -6)   
Sorry I have more questions. (i have been on the net all day)

Anyone know about stem cells being used to treat IBD (Crohn's\ulcerative colitis)?
I was looking around on the net and I see a few sites that talk about it but I have no idea if it is a viable treatment.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 4/1/2009 6:35 AM (GMT -6)   

I have not heard of that but it is interesting.

There is another drug that is worth looking into, LDN. A few people here are using it to treat their IBD. Look for glamourgirl, she may be able to offer some advice if you're interested in learning about LDN.


Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 4/1/2009 10:20 AM (GMT -6)   
Welcome to the forum monkey!
Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: Mesalamine rectal meds, 2 Lialda a day, doc let me off Azathioprine
 
 
 
 

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