Humira or surgery for UC

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xcwilzx
New Member


Date Joined Jul 2009
Total Posts : 15
   Posted 7/21/2009 2:13 PM (GMT -6)   
Hi, I am 21 years old and have had UC for almost 6 years now. These past 6 years have been incredibly rough for me due to flare ups. I was on Remicade treatments for awhile, and at first seemed to do nothing at all. However, I continued to receive them and unfortunately I missed an appointment one day and never returned. After that I was fine for a good 7-8 months straight (making me think maybe the remicade put my colitis into remission). However, since May I have been going downhill and my Dr. is concerned about placing me back on remicade because the possibility of a bad reaction is great due to the fact that I was on remicade at one time and stopped it. I was in the hospital for 3 days and was given steroids through the I.V. and that seemed to work well, but then a few weeks later I was back to the flare ups. None of my medications work other than prednisone. The past couple weeks I have been taking 20mg's of prednisone and it seems to do the trick, but as you all know the side effects of prednisone are terrible. Anyways, my point of this blog is to see if anyone has taken Humira for UC? I start the police academy september 23rd, and am hoping that Humira might help me live a normal life with out having to take prednisone and have the side effects? I have also been considering surgery, has anyone had that done? What were the results? Thanks for your time!
 
-Chris

xcwilzx
New Member


Date Joined Jul 2009
Total Posts : 15
   Posted 7/21/2009 2:25 PM (GMT -6)   
How long ago did you start taking humira and how long did it take to see results? The police academy is really demanding its from 9am-4pm mon-fri so if I can't get this under control soon I'm nervous I won't be able to make it. My G.I. specialist made an appointment for me with a UC specialist but it's not until september 8th but its to talk to him about Humira or other options. Also I have never heard about people taking celebrex for UC, maybe I'll talk to my doctor about it. As for asacol I have been on it since I was diagnosed and I don't believe that it actually works for me and immodium will work sometimes, and sometimes it does nothing! Thanks for your reply to my blog and I hope to hear back soon

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/21/2009 2:44 PM (GMT -6)   
i tried remi and it failed me. I was on steriods and they werent even keeping me in very good condition.
i dont know how long the humira takes to work, i decided on surgery so that i wouldnt have to deal with any more meds.
You may want to talk to a surgeon and get some more info and also start the humira. i know that if you had surgery today you probably wouldnt be ready for the police academy this year but i know you would be in great shape for it next time!
Hope something works for you!

xcwilzx
New Member


Date Joined Jul 2009
Total Posts : 15
   Posted 7/21/2009 2:53 PM (GMT -6)   
Thanks for the reply! how long did it take for you to heal from the surgery? I've read about 3 months. After dealing with this for 6 years, I believe it probably is time for surgery. The only thing holding me back is I have read that if the "J pouch" fails and causes me other problems, I was be stuck with having the bag outside of my stomach for the rest of my life.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/21/2009 2:59 PM (GMT -6)   
The chances for a successful jpouch are far greater than for failure. To help increase your odds find the most experienced CR surgeon in your closest metropolitan city. For references go to www. j-pouch.org

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


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/21/2009 3:57 PM (GMT -6)   
I could not get insurance to cover Humira, did you check that yet?

You have been struggling for a long time already. I wish I had considered surgery when I was young, and avoided all these years of struggle. Now it would be difficult, because of my career.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 7/21/2009 4:38 PM (GMT -6)   
You've got youth working for you for a speedy recovery! Check out http://www.jpouch.net/about-jpouch-dot-net/ for first person experiences (with photos!) of people's j-pouch surgeries.

I have been on Remicade for two years and while it has helped a great deal it isn't getting me all the way and I am meeting with a surgeon in a few weeks. From everything I have been reading and hearing, the main regret most people seem to have is not having done it sooner. I am looking forward to getting this diseased colon OUT and finally feeling WELL again instead of just varying degrees of "not as awful."

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Achieved almost-remission mid October 2008 (rectum still inflamed)

16 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 6/06/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/21/2009 8:04 PM (GMT -6)   
it took me about 6 weeks to get where i felt what i thought was good (the way i felt when i had UC on a good day!) and then about 3 months to get where i actually always felt good! Does that make sense?
It just takes a while to get your energy back. I took pain pills for about a week after i came home from the hosptial, then i only took them a few times after that.

I didnt have the j-pouch, i have a perm ileo (the bag) i chose that route because even though jpouches do have a very small failure rate, i just didnt want to take the chance, i didnt want two surgeries, and honestly, i never ever wantd to use the bathroom the regular way again!

Anyway, having a bag is easy, noone knows (i promise!) it doesnt keep me from doing anything or eating anything or going anywhere.

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 7/21/2009 8:07 PM (GMT -6)   
You have a good possibility to get the humira into your system and get it working before you start the Police Academy. Humira does wonders. You may need some extra medicine to help it get you into remission, but if you start it ASAP you may have a good chance to get yourself into Remission before you start your training.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira since of May 2007 (Currently in remission since May 2007)
Put on Imuran from May 2007 to Jan, 15 2009
Put on Canasa June 25, 2009, off Canasa on June 30th 2009.
*Can't take Asacol, Allergic to Remicade, odd reactions to Canasa went backwards a bit.
*Started minor flare in mid June 2009 but VERY minor. :(


xcwilzx
New Member


Date Joined Jul 2009
Total Posts : 15
   Posted 7/21/2009 8:29 PM (GMT -6)   
thanks for the reply summerstorm! how large is the bag? I've heard it is very small, but I'm worried it would hold me back from being able to run, do sit ups and push ups. For the academy I have to be able to do a certain amount of push ups/sit ups and run a mile and a half in a 11:58. I run daily and everything, but that's because I'm taking prednisone and it stops the bleeding. When I have bloody stools it starts draining me physically and mentally, so I'm worried that the stress of the academy will make me flare up really bad. I see a specialist Sept 8th so I'm going to see what he thinks, my G.I. doctor wants to try to do humira but wants the other specialists approval first. As for sweetie, do you think immuran is a good medicine? I have read about it a lot on here. Seems that a lot of people have taken it. I have taken- Flagelle, Purinethol, Prednisone and Asacol. Only medicine that seems to work is prednisone.

BenY
Regular Member


Date Joined Aug 2007
Total Posts : 60
   Posted 7/21/2009 11:00 PM (GMT -6)   
You are short on time before that academy! A J-pouch or bag seems pretty tough in police academy (and as a police officer for that matter). An alternative would be this medicine plan.

Try to get on Humira immediately if you can and try it for six weeks and see how far down you can bring the pred. At the same time, take the 6MP test so you are ready to start taking that if either the Humira is only partially working, or doesn't work at all. 6MP is underrated, and is a no-brainer IMO to lower one's prednisone dose. The 6MP will take maybe three months to fully kick in! Take it at night to prevent nausea. Assuming you might be on at least some does of pred for a while, get a bone scan in the next month to get a baseline (or to check for bone loss already). If the Humira doesn't get you off pred right away, you may have to take some pred protection meds like mine below.

Unless you get lucky with Humira (or get a surgery tomorrow) sounds like you will be on a pretty high dose of pred when academy starts. 20mg is definitely moon-face dose. It will help if you don't know anyone there - the worst is seeing people you haven't seen for a few months and there like "what happened to you?"
Ben, 40


Symptoms diagnosed 4/07.

Currently taking daily 7.5mg Prednisone, 100mg 6MP, calcium w/Vit D, 1/2 Prilosec (protects stomach from prednisone), fosamax (trying to build bones back up from prednisone effects), Retin-A (helps with back acne from prednisone use), probiotic (20 billion), multivitamin.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/21/2009 11:26 PM (GMT -6)   
there are dif sizes of bags, i wear the larger and it comes down a little onto my thigh, i turn it up so that it stays in my underwear. It wont be in your way, i just did some situps a little while ago, i cant do a push up, i never could, but i cant see how it would get in the way. I keep up with a 4 year old boy all day, and if you dont know thats ALOT of running, lol. But seriously, i was going and walking/runnign on the treadmill or at the park about 3 miles a day, and it didnt cause a problem at all.
You probaby have misconceptions about it, i sure did! i thought it was gonna be like a hot water bag (the kind they show on little house on teh prarie!) hanging off me. Its not, there are dif kinds, mine is cloth covered and beige. I go swimming, i went to the waterpark, i go to the regular park, i went hiking, i even did some pudding wrestling with it!!! The only thing i changed was putting things in my left pocket instead of my right. And thats just a personal thing. It wouldnt really matter, but after i stuck a pair of earrings in my pocket i realized that was a bad idea, lol.
some of my closest friends who had spent the night at my house, seen me change clothes (people should knock, lol) gone swimming with me, you name it we did it, had NO idea until i told them, and you know what? One of them was actualy jealous!!!

I dont know much about the jpouch but Suebear has one and she is like superwoman! she hikes like across countries and stuff and has no problems.
It would just be the recovery time that would cause you a short term problem.
But really its sooo worth it!

BenY
Regular Member


Date Joined Aug 2007
Total Posts : 60
   Posted 7/24/2009 9:51 PM (GMT -6)   
Summerstorm
Hmm, well maybe its not so bad as I thought. How often do you have a empty it, and can you do it in a bathroom stall without having access to a sink? Is no noises or smell with wearing it? My problem with a j-pouch is having to go to the bathroom so many times a day. My other concern with either operation in general is that they are not reversable - just in case they come out with a cure for this next year. Unlikely I know. Then again, surgery would mean no more drugs, probably a longer life span, and being able to get reasonably priced life insurance. In fact, I might need it one of the operations anyway if they find a sign of colon cancer, but I don't know the odds of that (even though it is supposedly higher).
Ben, 40


Symptoms diagnosed 4/07.

Currently taking daily 7.5mg Prednisone, 100mg 6MP, calcium w/Vit D, 1/2 Prilosec (protects stomach from prednisone), fosamax (trying to build bones back up from prednisone effects), Retin-A (helps with back acne from prednisone use), probiotic (20 billion), multivitamin.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/25/2009 12:56 AM (GMT -6)   
how often do i empty? that depends on what i eat, but usualy just 4 or 5 times a day, i can go 3 or 4 hours without emptying at least. If i need to go longer, like if i am going on a car trip or something, ijust take some immodium and i can go 6 hours or so. Certain foods make you have to empty more, and of course if you eat a huge meal then you might have to empty more often. It only takes about 2 minutes to empty.

Do you have to have a sink? No, there is no need for a sink. All i do is unroll it, empty it, clean it out with some toilet paper, roll it back up and get up. I of course need a sink to wash my hands though, lol.

Are there noises or smells? The first few weeks you will have alot of gas, and there will be some noise, but that doesnt last. And i rarely have any noise now. If i let myself get hungry before i eat i will sometimes have some gas and noise. After the first few weeks there isnt much gas at all. You can take some gas-x if you happen to get gas, or you can take a few gas-x as a preventive measure against gas. I like to do that sometimes. Also, if you are going somewhere and are concerened about noise, take a small piece of cloth, fold it twice and put it over the bag between the bag and your underwear!
Although, in 2 years, only once has anyone heard it! And i just told her it wasnt what she thought it was and she said oh are you hungry or something?
There are no smells when you are wearing it. Obviously it smells when you empty it, its poop after all, you can put mouthwash or deodorizer in there to make it not smell. the only time you will have a smell is if you should have a leak. Which is very rare! You may have a few leaks the first few weeks, its a learning process after all.

i know this is awful of me, but when my friends are in the bathroom for like forever using the bathroom i think, boy im so glad i dont have to sit on the toilet liek that anymore!!!

I had this fear that i was gonna wake up from surgery to see Brian Williams on tv (i think he's cute, thats why it was him) saying a cure had been found from UC and it was as simple as one pill!
But i knew realisticly that that was not gonna happen! And i knew i could wait my entire life for a cure that may not come and waste time and take all these drugs doing god knows to me, or i could get the surgery get that awful thing out and go on with my life! And thats what i did!

If you have any other questions please ask. It was so helpful to me to have people answer me quesitons and to hear people who had sucess.

LuckyLindy
Regular Member


Date Joined Feb 2009
Total Posts : 226
   Posted 7/25/2009 1:16 AM (GMT -6)   
Pudding wrestling???
33 year old male
diagnosed severe pancolitis in 2004, unresponsive to all drugs
turned down recommendation to have j-pouch surgery
have been mostly symptom free since 2004 via diet modification (removed all carbs)


Shaz032
Veteran Member


Date Joined Feb 2003
Total Posts : 1251
   Posted 7/25/2009 2:06 AM (GMT -6)   
I've had my ileostomy due to UC for 33 years now since I was 10 years old. It was the best decision my parents ever made for me. No one, except my close friends at school knew I had it (and only a couple of the teachers). I would empty in the school loos at morning recess, lunch time and afternoon recess (the same as when others went to the loo) and I'd be fine the rest of the time.

I've held full time jobs since leaving school, travelled to the USA, UK, Singapore, Hong Kong, Thailand and most of Australia (I'm an Aussie) without a problem.

When I started my current job, I was looking at my ostomy website one lunchtime and the girl who was training me looked over my shoulder and said 'THAT'S where I know you from!'. She had an ileostomy too and had been on my website several times looking for info. If not for the fact she saw me looking at my website, neither of us would have known the other had an ileostomy! So, even ostomates can't tell lol
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/25/2009 9:49 AM (GMT -6)   
yep pudding wrestling, lol.
We got a pool, filled it full of pudding and splashed around and carried on in it!!! It wasnt like what you would see on tv, like super hot girls in tiny biknis. But it was fun and very slippery! Lots of brusies the next day, lol.

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 7/25/2009 6:48 PM (GMT -6)   
xcwilzx:

Imuran is a good drug, does cause lymphoma but there is a small chance for it though. Ask your doctor about it, it helped get me into remission and helped keep me there. I've been off that drug since January.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira since of May 2007 (Currently in remission since May 2007)
Put on Imuran from May 2007 to Jan, 15 2009
Put on Canasa June 25, 2009, off Canasa on June 30th 2009.
*Can't take Asacol, Allergic to Remicade, odd reactions to Canasa went backwards a bit.
*Started minor flare in mid June 2009 but VERY minor. :(

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