Hello all,

This is my first post on this site, chances are I'll be lingering more often.

I have what the Dr.'s are calling Moderate to Severe aggressive pancolitis and its completely out of control. I've been on Asacol, Salofalk, Cortifoam, Imuran and spent almost all of 2007 on prednisone. I started Remicade in October at 8 week intervals, and it was shortened to 6 weeks, and then 4 weeks, and now it stops working after 2 weeks. I have a scope tomorrow and I'm going to talk to my Dr. again about surgery. I'm 99% sure that I'm going to go through with it. I've only had UC for 1.5 years but its been one flare after another and I can't maintain remission long enough to live. I've lost so much of my life to this disease, and I feel like I am ready to try something new. I'm scared to death of the surgery, and I can't even talk about it without bursting into tears, but I feel like I have no options left. I'm only 26 years old and I want to have kids, but I fear that the surgery could render me infertile. I'm also scared of complications, but at this point I feel like I'm running out of options.

So I guess my question to you all is this, When it came down to it, how did you make the decision to go ahead with the surgery?

This message has been edited. Last edited by: Kadet,

I had UC 13 years. I had a baby. I couldn't take care of him. My cancer risk was increasing. I was in pain. I was on prednisone.
I was getting blood transfusions a few times a week from the blood loss. I was anemic. I was always in the bathroom. I never slept.
I have had a j pouch 20 years. I am healthy and full of energy and don't take any drugs. My bathroom trips are tolerable compared to what I had.
No pain. No cancer.
If you are near Toronto, Dr Zane Cohen is one of the best up there.
Good luck with the decision. You will have a rocky road at first but you will get your life and health back. Many women have had babies with ostomies and j pouches.
The prednisone makes you emotional and you are in the right place researching and asking questions.Infertility is the least of your problems. You have to be healthy to raise a kid!

I refused to go back on prednisone and nothing else worked. I felt like surgery was my only real option. Best decision ever.

Hi Kadet, my daughter (17 years old) is just one step ahead of you. She was diagnosed with UC in October 2006 (she got sick for the first time in September). She has had 3 flares since then. Prednisone seems to be the only thing that kicks it into remission (and it seems to take longer and longer with each flare, with more side effects). She has gone through asacol, enemas, 6-mp, remicade. She probably could hold in remission with remicade but for how long?

We decided with her GI and consultations with 2 surgeons (along with a dysplasia scare) that now would be the right time for surgery. It is not an easy decision. Especially because she seems healthy right now. But that is probably the best time to have surgery (how ironic).
She doesn't want to go through senior year of high school (or any other time) wondering when she will flare again, how long she will be out, what she will miss, and how it takes a toll on her body. Add to this that it is a lifelong disease, these were all factors. Plus she is still at home, under our insurance, not having to worry about supporting herself or a family.

Her surgery for step 1 is tomorrow. There are still some doubts in our minds but the positive outlook outweighs the negative still.

Do lots of research, weigh all the pros and cons. Good luck.

Hi Kadet:

I had my surgery after living with UC for almost 13 years. I was on all the drugs you are on with the exception of prednisone (I was on Budesonide)and remicade both of which I avoided because of the side effects.

My UC never went into remission and I simply learned to live life with one continuous flare up. After 13 years my colon was so bad that if i had started to develop cancer it would be very hard to detect.

Having the surgery was a great decision for me; one i should have made much earlier. I am healthier then I have ever been and am starting to feel that I can start living again.

Good luck.

Mike

Hi Kadet
So sorry for the decision you are facing. I had UC for 4 years and continued to spiral downward, trying ALL meds, plus remicade and even Humira. I also tried ALL the alternatives - diets, all organic foods, etc, etc. I REFUSED to give up my colon.

Last year, at the age of 27 I was so sick, I was on TPN and down to 95 pounds (I'm 5'8") I was admitted into ICU and taken for emergency surgery - my doctor said my "colon was dying" and it had to come out immediately.

I suppose I have the satisfaction of knowing that I did everything I could to avoid the surgery, but hindsight being 20/20, I really wish I had opted for surgery much sooner.

Good luck in your decision. You have come to a great place for support.

Hi Kadet,

Welcome. The steroids putting cataracts in my eyes kind of kicked me over the decision making edge of the first surgery I had.

I knew I was very ill. I accepted that medication was not working, in fact the side-effects were just displacing the problem. I wanted to get on with my life, that was my goal. I worked out what the price was for being well and decided to press ahead. I paid that price and achieved my goal.

Bad stuff happens but it doesn't last forever, its just a memory strand.
Please don't be scared. It will be okay. You'll get through this and all the other challenges life throws at you.

“Worring about something is like paying interest on a bill you might not owe”
Tom Roach

Oh and check this out, it resonated with me and I think it will you:

http://www.youtube.com/watch?v=ND6iSRlG5m0

Be glad you have options. A lot of people don't.

This message has been edited. Last edited by: _Dan_,

Hi Kadet. I'm in a similar situation. I was diagnosed with UC last year at age 18. I'm considering surgery b/c all the drugs have pretty much failed me. I've had 2 Remicade infusions so far and it has barely helped, so my GI told me to start talking to surgeons since I won't have any other options left.

I was worried about fertility, too, but could you imagine how horrible it would be to be pregnant and raise a child during a constant flare? And as a 19-year-old, I could not imagine living with a flare for up to another 15 years while I wait to have a kid. You may want to look into laparoscopic surgery--I've heard that since it's less invasive, it may not affect fertility as much as the the traditional open surgery.

HI Kadet,
I'm new to this too. I just had my colonectomy on the 13th of June.
I don't have tons of advice but I can say that everything you're feeling is totally normal to feel and I think just about everybody feels it. That doesn't make it any better but I want you to know that you're not alone. That was the difference this site made for me. Of course when I first found the site after being told that after 14 yrs of ridiculousness with my colon that it was a "failure of medical therapy" and had to go.
It feels like you're going to lose all normal life and that nothing will ever be right again. But then that's sort of what you have with UC isn't it. My younger brother has seen some rough stuff recently and very pointedly told me that at least I can still walk and talk and live just fine. That's probably not something your ready to hear at this point but I have to remind myself of it or man do I ever just fall apart over all my worries about every little thing in the future.
We all want a normal life. I'm sorry that your's has had to join us abbi-norms. It really isn't fair. But I think each person on this site thinks about the others. So when it's late and the tears are rolling down you face into your pillow at night know that there are people out there who wish you well.
Good Luck,
Here's wishing someone on here had a crystal ball and could give us the kind of advice we're really looking for.
Lani

Like you (and others) I went through the whole progression of meds, starting with Asacol then going to prednisone, 6-MP and even a dose of Remicade, none of which really controlled my symptoms. I always knew in the back of my mind that surgery was there as a "last resort" if all else failed. Yes, I was nervous about it beforehand, but now that I'm off all meds and doing well my only regret is that I didn't have surgery earlier - It has given me back my life. Hope this helps!
Jeff

I only had UC for 6 months when I was faced with surgery. I was 26. I never had a remission and at the time I had the surgery had been in patient in the hospital for 27 days. Surgery was pretty much my only choice.

I did have some issues, chronic pouchitis from day one. After 3 1/2 years and lots of soul searching, I opted to return to a perm ileo. I share this with you not to scare you, but to give you hope, as I am about to have my second child (both conceived with the perm ileo). I did have to use IVF, but got pregnant first try both times we did it. So, even though there are risks, having the surgery isn't necessarily the end of your fertility.

Sounds like things have progressed enough that surgery is the answer. Chances are you'll feel great after adn wonder why you waited so long. EVen though I eventually had my pouch removed, I was still SOOO much better off with the pouch than the UC.

Hi Kadet,

I was rush to hospital in February 1998 and 3 weeks later had my colon removed or die. I was 23 at the time. A year after that I had my pouch created and hooked up. I live a very normal life. Have been in a relationship for almost 9 years and 2 kids. I don't take drugs to manage my pouch and have very few problems with it.

You will know when its time. Take a bold step forward as you approach the bridge. Life after operation is not at all bad. It cant' be as its' all the matter of attitude.

Best Luck!

Hi there,
welcome to the site! It has been a life saver for me. I too failed with all the meds and weird diets...
I realized it was time to get rid of my useless colon when during one of my doctor visits my GI doc told me that I had been so sick for so long that I had no clue what feeling well felt like anymore.
Good Luck - Post any questions you have.
David

I edited my post I forgot to add Imuran to the list. I hated that one it gave me such severe joint pain I couldn't even walk. I think I mentally blocked it out. lol

Bennie, it sounds like your daughter and I have a LOT in common with our disease progression. Prednisone is the only thing that worked, but as you said it takes longer and longer every time and the side effects get worse and worse. I sincerely hope that her surgery goes well, it does sound to me like you made the right decision, and is helping me to solidify mine.

girl31 I too tried the Natural approach, I bought books, started seeing a Naturopath, spent almost a thousand dollards on Herbs, Special Probiotics & fish oil, homeopathy, and as with you, none of it worked. I was trying so hard to hang onto the organ, but seems like its time to let go. I've talked to a LOT of people who wished they had the surgery earlier than they did. I suppose its really good advice to take. I want foresight that's 20/20! I'm sorry to hear about your experience with the ICU, but I am glad to hear it was the right choice 4 u.

Dan, I've developed Osteopenia due to the steroids. I want my bones to stay strong, and like some of you say, i too have flat out refused to do the steroids anymore. They almost put me on the psych ward last time. Thanks for the youtube movie, omg, that was too cute, brought a much needed smile to my face.
I think I need to take giraffe's words to heart. "You know what? I'm cool with this."

Lani, you are totally right, it could be much worse. There are many diseases out there that don't have a 'cure' many diseases where the affected part can't be removed. For this in a strange way I am grateful that its UC, and not something worse. It could always be worse. Funny how a thought like that can make us feel better. So sorry about your brother, I hope he too can walk and talk and live just fine like you. and I hope soon that I can too. Let me know when you get a line on that crystal ball. ;P

Jill, I have thought about the perm ileo, and its comforting to know that you had 2 little angels with it!

Thank you everyone for your kind and encouraging words. I have a scope tomorrow and the prep damn near killed me tonight. Before I even came on here to check the posts I decided I'm packing a bag and talking to my GI about scheduling emergency surgery when I go in tomorrow. I saw a surgeon back in Feb and then chickened out on the surgery because the Remi seemed to get it under control, but he told me that if I ever change my mind the emergency surgery option is on the table.

So, if I dont check in within the next few days I'm under the knife.

Wish me luck, and thank you all for helping me to come to terms with a decision I think I've already made.