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help me, do i have opp or start taking humira for my crohn's disease

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Crohn's Disease
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Posted 3/1/2011 4:32 AM (GMT 0)
hi can you help me please.

iv just came out of hospital for the second time due to cronic pain. the firsdt time was 5 months ago where i was told i have crohn's, i never had no problems befor so it was a shock. the main problem is pain (sometimes lasting weeks), pain killers dont help, changing diet dont help. in the five months i have tried alot of different drugs, steriods drugs to depress my white blood sells. while in hospital i was on iv steriods, the first trip to hospital they help but the second trip the inflammation got more server.

after staying in hospital for 10 days the doc told me i have a choice of taking humira or having a opp. after seeing the doc a sergion came to see me to warn me off the opp as it could go wrong. the only probblem is i get married in 4 months so if the drug does'nt work it would be to close to my wedding for the opp. the other thing is im pron to ear infections.

what i want is for you to tell me your stories bad or good about humira and about having a opp.

1 final thing, the disease started in my small bowel then it has gone to my large bowel, but it is still in one place together at the joining of each. i dont get bleeding that often, if i do its just spots. i get bunged up not diarrhea, i get alot of lower pain front and back.

please help me

many thanks

 

Post Edited (HURSTY) : 2/28/2011 9:55:47 PM (GMT-7)

Posted 3/1/2011 5:14 AM (GMT 0)
please people need advise by wednesday as have to let my doc know what i have chosen to do
Posted 3/1/2011 6:03 AM (GMT 0)
Hello and Welcome. No one can tell you what you should do, only what we have done or would do in a similar case.

I have had many surgeries in the past and was hoping that I was done for a good long time. I had blockages from adhesions every few months or so that lasted 12 -24 hours. I could handle this at home. But over the last few years it has been happening more often and lasting longer. This most recent one has been the entire month of February. Three weeks ago, I was not even thinking surgery. Now it looks like I will be having surgery on Friday. It sort of has my head spinning.

I know with the surgery, they will examine my digestive track, remove the damaged parts, remove the adhesions, add some sort of mesh product to prevent future adhesions from forming and then its just the recovery. Recovery will be about 4 days of hell, another 10 days of misery and then things will start to get a little better every day. Eventually when I look back over my month I will be able to see that I have made a huge amount of progress and hopefully I won't be in the same pain I am in every day right now.

By doing the operation now, I have the home support I need. I won't have them all her 4 months from now. I coach girls softball, but not for 3-4 months depending on field conditions, The woman I babysit for was laid off, she would still like me to baby sit while she looks, but ultimately she wants me back when she gets the job. So the planets are alligned telling me that this is the time, don't wait.

You need to run your signs and see what they are telling you.
Posted 3/1/2011 8:05 AM (GMT 0)
HURSTY:

Sorry you are in this condition...i'm just visiting over hear from the UC forum and the ostomy forum...

I was diagnosed with "UC" (see, mine is in quotes to) about 15 years ago...too make a long story short, I've tried most of the drugs - none work except prednisone...and, that has started to destroy my body..

I am scheduled for surgery (have colon/rectum removed) on April 4, 2011. The surgery is my decision as I've been told this is "elective.." Though, if everything was laid out on the table, I would not consider it elective.....

Anyway, if you really do have "Crohn's.." I would consider the following:

1) Have you been genetically tested to verify your Dr.'s prognosis? There is a genetic test (or something like that) that was given me and I was told there was an 80% chance I had UC...not 100%, just 80%! HA!

2) If you do have Crohn's, you might consider something even more radical than surgery...a Bone marrow transplant...yeah, I said it...since I'm not a Dr., you can take that advice and do what you will...if you google Crohn's/bone marrow transplant, see what you can find..I only say this because between these two diseases (UC vs. Crohn's), and my constant medical research via the web over the past 10 years, a bone marrow transplant for Crohn's is the only cure for that....UC's "cure" is my surgery (colon removal) and until several months go by, I won't be sure that I have been "cured."

Again, sorry you are in this situation....whatever decision you make, I hope that it works out for the best.
Posted 3/1/2011 12:21 PM (GMT 0)
I would definitely give the drugs a shot before letting them cut me open.
Posted 3/1/2011 1:34 PM (GMT 0)
ENIGMAWRAP and chrisnsteph1022

thanks for the advice, iv had several tests (all the scans, bloods ect). iv tried pred along side with many others and it dont work thats why they want to try humira, but listening to them about what can go wrong while you are on it puts me write off.

i will look into bone marrow transplant. im meating up with my Dr tomorro so im going to ask about a opp and how it will suit my case, saying that iv not ruled out the humira but i was looking for some happy stories of people on it where there isn't many on the web.

thanks again for you time and best of look to you both
Posted 3/1/2011 9:20 PM (GMT 0)
Not to contradict ENIGMAWRAP but I doubt any doctor would consider a bone marrow transplant when you have not tried medications or your disease is sonsidered extemely severe.

Just remember, that any part of you that they cut out cannot be replaced. Also concerning your frequent ear infections - taking Humira might not have any impact on the frequency that you have them.

These are just my personal opinions. And welcome to Healing Well!
Posted 3/1/2011 9:53 PM (GMT 0)
I first tried Imuran and that made me very sick and had a stay in the hospital. Then I tried Remicade for 3 years. That did the trick but than I had a reaction so that medicine was no longer an option. Shortly after that I was put on Humira. This medicine has been working for me. I also find that it helps with my many joint pains. I have been in remission since I began humira. The only thing I can complain about taking this med is that It hurts when I inject the pen and I almost always bruise from it. Good luck with your decision making. It is a difficult decision but you will know the right thing to do.
Posted 3/2/2011 3:06 AM (GMT 0)
I started Humira in October 2010 and to date it has made me well. I am loving it so far and I am not finding it makes me any more prone to infections etc as everyone around me is getting sick with colds flus etc and I am doing pretty well. I have not had a surgery so I can't comment on that, but I know I would prefer to try a med before a surgery. In any case, it is your choice and I absolutely love Humira's results for me so far, althought the regualr needles suck.

Best of luck and whatever you choose, I hope u find some releif soon, and especially for your wedding (congrats BTW!)

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