Spoke to Gi depressed also decided I will never go sugery

Removal of the colon is a cure for UC and double amputation is a cure for athletes foot, under this way of thinking death could be considered a cure for everything. Either way living with UC or surgery its not going to be an ideal situation. Im pretty depressed about the situation myself facing surgery and wanting to exhaust every possible method of getting rid of my UC without surgery while dealing with the blood, abdominal pain, etc...got my life on hold. And it is really depressing knowing that after I go through surgery I could end up in the same or potentially worse situation.

I've had my ileostomy for 34 years now due to UC (since I was 10 years old). It was the best decision my parents ever made for me. No more running to the loo and hoping I make it on time, no more swallowing 24 pills a day, no more restricting my diet, no more cramping and pain. There is no amount of money in the world you could give me to go back to my UC days.

As others have said, problems are in the minority. Those that are doing well, have no need of these message boards, they're out living their lives as they are meant to be. Only a few of us stay to let others know how good life can be after surgery. I've spoken to literally thousands of ostomates (no exaggeration) in my over 10 years on the net via my website, other sites and chats. I can count on my fingers, those who regret having surgery. The odds are heavily in your favour of having a good outcome after surgery.

Yes, I have arthritis still, but I can't honestly say if it's due to UC or hereditary since my mother got arthritis at age 26 with no IBD history. Still, at least I only have that to deal with, not the symptoms of IBD.

Try not to let the problems of the minority hold you back in your decision making. Look at it this way. Do you have a life at the moment? Could surgery make it any worse? It, more than likely, will actually give you your life back, like it has the vast majority of UCers who have had to have surgery. But if you don't try it and prefer to live in fear of something that probably won't happen, you will never know.

Pouchitis is something that might happen but is usually easily treatable with a course of anti-biotics. It's only a very few that get it chronically. Most treat it and live happily ever after.

im not worried about Christine. I think you will be fine. especially if you have proctitis. and the rest of your colon is clear, that is a good sign. I think you will be better off than someone like me. For me my UC started to spred up to the left side. I was going 20 + a day last april. then i started to experiment with all these diets. Im now down to 1 regular bm a day. I will see the odd blip of mucus which is about a fingernail full but that is it. nothing else in the last 2 months fo this Gerald Green diet. and that is with out meds.so i think this diet is controling it. I am still scard though the UC will return. and i will be back to square 1. Im scard that if i have to opt for sugery I will just end up on medication. so that is why im not. im too scard. I beleive UC can turn into crohns. I dont believe it is because they have given you the wrong dignosis. the reson i believe that is just reading everything on this fourm. Crohns and colitis are treated by medical professionals in the exact same way. the diets are the same for each. SCD or raw or something like that. so the cause must be the same. its only logical. Also UC spreads so why would it just stop at the small intestant. the small intestant is connected to the large so it can get in there Gerald treats crohns the same as he treats UC and there is just as many crohns patients out there with no meds as there are UCers. I think it is the same illness but just located in different parts of the body. and one has laid deeper in the body. that is the only difference. if the cause is the same so is the treatment. Im so sad for those guys. Im so scard now that i have read that site. I will pray every day that this diet works. it is so scary for me. If my illness stayed at proctists like christines i would not be afraid. its the fact it doesnt i know mine spreads. how scary. :(

what's this about me needing to avoid foods? i'm a little confused by that, as i had a burrito, spicy chicken wings, and beer for dinner a couple nights ago.

i'm not going to type up a long post here as it appears what's being said in this thread is falling on deaf ears, but my j-pouch surgery & recovery was a breeze compared to battling my UC flare-ups. i do not take colitis related medications. UC does not spread to the small intestine, and if you do have inflammation in the small intestine you've likely had crohn's disease all along. pouchitis is usually easily treated by a short course of antibiotics, and 99% of j-pouchers do not have chronic pouchitis. furthermore, studies have shown that over 90% of people who have had the j-pouch surgery are happy with the outcome. if for some reason your j-pouch fails (which is a rare situation), another pouch can be constructed, and if that fails as well you can opt for a permanent ileostomy which is a lot better than life with UC.

i'm sorry that you're afraid of what the future may hold for you, but please stop posting inaccurate information & misinforming people about the surgery that saved my life. thank you.

Hello Kitty, I have to tell you that if you choose not to take the prednisone, you HAVE other prescription options.Quincy recommended (as if she would not lol!) 5 ASA's. If you have gotten to a place where the bleeding has stopped it may not hurt to try maybe every other day to at least relieve the inflammation a bit. I found that for me the mesalimine would exacerbate my symptoms when there was bleeding involved but now I am using the enemas every other night.
Doc put me on 6mp & I fought it for about 3 months before I gave in. He wanted me to take it in conjunction with Prednisone & I refused! He was afraid I would end up hospitalized if I didn't take the prednisone to curb the flare since the 6 mp takes about a good 6-8 weeks to really penetrate the system. Happy to report I am currently gliding into what seems to be remission. Although I experience some side effects (dizziness, fatigue) they do not even come close to how awful the prednisone made me feel. I have to say overall I feel almost like my old self (SHH, NO JINX!) I just hope it sticks!
I look at all of this as a "crap-shoot"...we don't know from one day to the next what our symptoms are going to be, there is no telling what the long term side effects of some U/C meds could have on us. I think either way you slice it...surgery probably wins out simply because there just may be fewer complications in the long run...

Sorry to be so blunt, but...

I think you should get over your fear of prednisone. In your post you said the doc said you need prednisone but that you "didnt like that option." You have to realize you're going to have to do things you don't like when it comes to having a disease, especially this one.

I don't like having to give up certain foods and limit alcohol, but I do it. I don't like prednisone either, but it works to help induce remission for me, so I do it.

If I were you, I'd get on pred which hopefully gets you better, get in remission, and get it over with.

As for surgery, I've only heard good things from people who had it done. Yeah there are issues, but the most important thing is that they are HAPPIER after surgery.

I saw my GI last week and told her that if I had thought through the fact that I would still be struggling with UC 25 years after being diagnosed at age 25, I would have had surgery then (I came close, until I got into a study for asacol). She said our young brains don't think like that at 25. I found Remicade now, but I suffered for 25 years when I didn't need to. That's why I encourage young people who are already suffering greatly to consider not fighting against the surgery option.

I learned to manage it for the most part, but it has been hard, hard, hard. I didn't like taking prednisone, but it helped me many times to stop feeling horrible and to feeling good again.

And with eating so much a part of being sociable, I could never be strict with any complicated diet. I also would not want to bore my friends or family or coworkers with special dietary needs...or have them view me to be in frail health. I want to be viewed as strong and anything I need to do I want to do discretely. Some people seem to enjoy the attention, but that's not me.

We each make choices. It's important to think positive about the choice you make, instead of living in fear of what might happen. If you expect it will work... then you are halfway there!

I hate to say it but sometimes all meds fail,  like in my sons case, it was have the surgery or die.  So after 10 or so years his pouch

is still working well. Pouchitis can be controlled in most people.  Hopefully you will never need the surgery.

As for myself I still have a colon, UC since 1980.

Old Mike