3 year long flare.

It's officially been 3 years since I've been flaring up. Currently I'm at the lowest point of my life. I talked to a surgeon and unfortunately I can only get a permanent illeostomy. This is something that I'm going to keep avoiding for as long as I can. Monday I had surgery to get my abscesses drained so I can start 6MP. Unfortunately the surgery made my colon go insane. I'm going to the bathroom every 20 mins. There's no blood though which is really weird. Usually blood is one of my main symtoms. It's really tough for me right now. I just needed to share this with someone. I'm grateful because my mother came up to my school with my dog to take care of me while I'm in this stage. I just need my life back. Thanks for allowing me to vent.

Thank you Quincy, it's just hard for me to do that right now. It's a tough decision at this point in my life being only 21 years old. I'll see what happens with the 6MP.

I completely understand what you are going through. I'm going through a 3 year flare as well, I've never been in remission the entire time except when I get on prednisone. I refuse to take any immunomodulators at this point, and am hoping LDN will get me to remission. How did LDN work for you?

If you do opt for surgery..make sure you do your homework. The right surgeon makes a BIG difference. It's not an easy surgery nor does everyone respond well to it. everyone is different. My doc keep bringing up surgery but I'm not that bad off....symptom wise. Right now I have anal fissure but I think that's it....the problem is trying to get off Prednisone and stay in remission.

Best place o have the surgery would be Mayo Clinic.

Here's a comedian's view of his colon surgery. This is why the surgeon makes a difference:

http://youtu.be/4mvhjZ-ClLw [url]

Hey man, looks like I'm not the only Bosnian with Ulcerative Colitis. I just wanted to say try your best to stay strong, and have you tried any natural remedies? I found that cabbage juice (kupus) helped me might wanna try it out.

Its a shame that there isn't more awareness about our disease and that more efforts aren't being made to better our lives.

Iwas diagnosed with UC in 1997 and had it for years before the diagnosis.

I know this is hard to hear but I eventually had my colon removed, had a temporary ostomy and now have an internal j-pouch. I wish I'd had the surgery years ago. Just one of the benefits is I can hold it as long as I need to and no longer worry about accidents or have them.

From my experience on the j-pouch.org support site it appears as a few of us have problems but most quit posting to the site when they fully recover. It's not an easy surgry but there are many young people that do have it, I've seen as young as 8. There are people on the site that have had their j-pouches 20-30 years an I belive they started doing the j-pouch surgeries around 30 years ago.

I feel many of the poison drugs they've given or suggested we use are just that poison. While they might help us into remission there comes a time when they don't. I had my final flare from hell, could not work and in constant pain for 6 months before the surgery.

If you have had 2 or 3 year flares don't expect to attain long remissions, no matter how many drugs you try. It is a major organ and yes we want to keep it but at any cost is not good for us. I have developed several other autoimmune diseases and think if I'd ditched my colon a long time ago they would not be so bad.

If my pouch should fail the worse thing that can happen is a permanent ostomy. That would not be the end of the world, I lived with one for 2 months before my final surgery.

Remember if you do go to j-poujch.org that most people on there are having problems right after surgery and when they feel better they don't post often. There are many veteran j-pouchers that post to help those with problems. You can read past posts on there using the search function. You can also post questions about anything on the site.

I'm sorry several of you are having such long flares. None of this is fair but there are alternatives.

I think the cost of supplies is not as much as Remicade or other infusions and was much less than my monthy expensive medications for my UC. If you don't have insurance to help pay for the supplies there are many places you can receive free supplies from. I know this as I donated my unused unopened supplies to them after by take down surgery.

If they are not suggesting a resection it appears as whatever the disease is it's contained in the colon. There is a fine line between UC and Crohns as many I've met in support groups had to have their colons removed and then discovered their UC was crohns all along. When you have a mega toxic colon, that is about to repture, they remove it regardless which disease you have.

I'm so sorry!

      I know the thought of having a permanent ileo is not pleasant to someone your age.  I have one but I am 65 yrs old and had the operation at age 63.  It gave me back my life.  I was in a flare for two years and prednisone dependent.

     I just want to tell you that the other day I was in my cardiologist's office and struck up a conversation with the young woman sitting next to me.   She was very attractive, well groomed and intelligent.  She mentioned that her father is suffering from Crohn's Disease and he is quite elderly.  I told her I knew what he was going through because I suffered with ulcerative proctitis for twelve years before having a total colectomy with end ileo in 2010.  She told me she had the same operation at the age of 13!!!!  I was amazed.  She then patted her pouch and said, "Yep, I've had this for 30 yrs and it gave me back my life."  She has no regrets whatsoever and leads a very active life.

      I wish you the best of luck in whatever you decide to do.  However, to suffer the way you have been suffering for the past three  years....it simply is NOT worth it.

bosnianboy--if you've been flaring for 3 years straight, it's going to be really hard to get into remission; if I were you, I'd seriously consider surgery. Since you're at Kent State, I'm assuming you'd be going to the Cleveland Clinic. If so, you'll be in great hands.
If you want to try meds, I would go for Remicade or Humira. 6MP can take several months to kick in, whereas Remicade etc. can have an immediate effect on some people.