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Ulcerative Colitis
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Posted 9/24/2012 12:20 PM (GMT 0)
i am new to this but am really desperate for help. i am 20 and was diagnosed with UC about 4 months ago. I had bleeding for about 9 months before my first colonoscopy (i have endometriosis and was told the bleeding was related to that however had a laproscopy / hystoroscopy and DC to fix it and the bleeding continued) since then i have been in and out of hospital put on every different kind of med and unfortunately nothing is working. I was put on 40mg Pred on first going into hospital as well as 9 a day of Coliside, 2 enemas a day of colifoam, coloxil and then a bunch of different anti nausea meds. after 14 days in hospital i had about 5 days of no bleeding (yay) however then it started back up again!! i had a flexi and we found that i had an infection which was causing more inflamation! we increased my Pred and i have now started on 150mg of imurane ..STILL BLEEDING!!! and now the pain is back im exhasted my life was so full before all of this and now im just struggling! my doc told me to go off pred cold turkey last week because its just not working so i did ive had ALOT of vomiting and nausea. I will also let you know that i have been super strict with my diet since being diagnosed no gluten, fructose, lactose no alcohol ive been trying to keep my exercise up when i can but im out of ideas! i know immurane takes a few months to kick in but i feel im getting worse! if you have found anything that helped please let me know ill do anything!!! thank you
Posted 9/24/2012 12:41 PM (GMT 0)
     First of all, what kind of doctor tells a patient to go off prednisone cold turkey after being on 40 mgm for 4 months??????? shocked    A quack if you ask me!  I had a friend who suffered with Crohn's Disease.  She was NEVER told to taper her prednisone and went off it cold turkey with horrible results.  She developed Addison's Disease, failure of the adrenal glands.

     If I were you, I would find another GI doctor, one with more experience.   When I first started on 6MP, 50 mgm, it was along with the prednisone, until the 6MP "kicked in."  It did keep me in a two year remission, but then I started to flare more frequently.  I also tried Remicade and then Humira to no avail and had surgery in 2010.

     This is NOT to discourage you.  There are a lot of treatment options out there with lots of success stories.  Ask about VSL#3 and rectal meds.  Best of luck to you.

Posted 9/24/2012 2:43 PM (GMT 0)
Christine gives great advice. I'm also confused about the comment you made regarding the flex-sig finding an infection? I don't see how the scope finds an infection, and then you said they increased your pred and put you on imuran - these are not treatments for infection. Can you go back and review your records to make sure you understand what's going on? Do you have a c.diff infection or other parasitic infection?
Posted 9/24/2012 4:36 PM (GMT 0)
I agree with statements that you need a better doctor, the one you have is below average and can hurt you with cold turkey quitting of prednisone.

You should also be using mesalamine enemas for your bleeding. Enemas and suppositories come in several types but the mesalamine enema is what is useful long term, few side effects. Steroid enemas or foam are good for short term and Canasa suppositoriesare useful when bleeding has stopped or can also be used daytime when you are using the mesalamine enema at night for 24 hr coverage.

You'll get good information here so you can talk to your "new" doctor intelligently as you decide what your next meds will be.

Best wishes.
Posted 9/24/2012 4:48 PM (GMT 0)
You're kind of still at the beginning of treatments. There are still a lot of drugs to step up to.

Coming off cold turkey 40mg of prednisone will cause you to flare or a current flare to get worse. My GI would get on to my primary care for giving me 40mg for sinus infections like that. Funny thing is when this 2 year flare started that's exactly what I had just come off of. 40mg of prednison for 2 weeks (which to my primary care doctor was normal procedure cold turkey).
Posted 9/24/2012 5:16 PM (GMT 0)
Definitely don't fret yet! You have several more drugs you can try and the Imuran takes awhile to kick in (as in months). In the meantime, you should be on something else to help control your symptoms.

If you've been on steroids for more than two weeks, you should be concerned about being pulled off of them completely without a taper. Ask the doctor about that...or find a new GI.
Posted 9/25/2012 6:46 AM (GMT 0)
Find a new Doc right away.

The Imuran will take probably several months to really start being effective, but you need something to get you stabilized while waiting for the Imuran to kick in.

Sometimes splitting the prednisone dose to morning and night can help instead of all at once. But you need a doc that can give you some better advice than quitting your prednisone cold turkey.
Posted 9/25/2012 11:37 AM (GMT 0)
T123,

Welcome to the forum.

I am so sorry you are suffering so much.

I agree with the others, you need to get another GI.

It's dangerous to quit prednisone cold turkey. He's obviously incompetent.

I too, am a little confused as to how he diagnosed an infection through flexsig?

Did he do extensive blood work (that might reveal an infection)?

Did he do any stool testing ( for c. diff or parasites)?

Are you still on any of the other meds given you, rectals and coliside?

I know it's frustrating, but it's a matter of finding what's going to work for you, and that's trial and error in many cases.

I was bleeding (very badly) for more than 1 1/2 years before finally getting it under control.

I didn't respond at all to any of the meds they gave me, and when they finally gave me a choice of remicade or colon surgery, I balked and had to find my own way.

For me it was a multi-approach that worked best: diet modification, certain supplements, and LDN - low dose naltrexone.

Although the other things did reduce my symptoms, the ONLY thing that stopped my bleeding was the LDN.

There are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

 

Definitely get yourself a new doctor.

I hope you feel better and let us know how we can help you.

 

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