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Posted 12/21/2010 1:53 PM (GMT 0)
So, here's my situation. I've had UC for less than a year, and I've had 2 major flare ups, both of which landed me in the hospital on IV steroids to get me back into remission. I'm currently taking Remicade. Just had my 4th infusion a few weeks ago, and I'm still experiencing symptoms (namely, urgency, some blood and mucus in the stool, going about 5 to 6 times a day). My line of thought is, if I'm not doing too well after the initial loading period of remicade, chances are the maintenance treatments are going to decline in their effect. I really want to avoid having another major flare up, because it's starting to take its toll on me (probably more emotionally than physically). So, naturally I am considering surgery. I'm seeing my doc in January, so I'll get his take on everything then. He already knows the remicade isn't working too well.

I have a few concerns:

-It seems like now is a period of great scientific advancement. I mean, they just cured a man with AIDS in Germany. What if I go through with all this and then they find a cure for UC shortly after my procedure? I'd be kicking myself. Of course, people in the 1950s thought we'd all have robots and flying cars by now, so who knows.

-What are the chances that the j-pouch fails and I need an ileostomy for the rest of my life? That seems like the worst possible outcome out of all this. I've done some preliminary research and I can't really find a solid failure percentage.

So basically I'm ambivalent. On one hand, life is short, and I shouldn't waste any more time suffering from this condition. And furthermore, even when in remission, I don't need this cloud looming over my head that I might have a flare up and have to essentially halt my life. On the other hand, well, you've read the aforementioned concerns. Also, I'm pretty young (22 years old), and I was diagnosed last March. Maybe I just need to give it some time and see how I do. I'm just feeling conflicted because this condition is holding me back in a major way from enjoying my life, and it's only been like 10 months. So, anyone who's gone through with surgery, it would be nice to have your take on the situation.

Sorry for the lengthy post. I would greatly appreciate any feedback. This forum is a great utility for people who are suffering and feel alone.
Posted 12/21/2010 2:11 PM (GMT 0)
Pinkerton
I am sixteen years old, I have same problem, 12 months of possibly UC
I am also surgery, I have done some research too so far only minus on J pouch is you'll have bowel movement about 4-5 times day but I believe there are other pouches too, GOOD LUCK!
Posted 12/21/2010 2:33 PM (GMT 0)
Thanks Laxusx, same to you.

Honestly BMs four to five times a day wouldn't bother me too much. And I can handle pain; that's not the issue.It's really the uncertainty that bothers me. I'm currently unemployed and living with my mom and her fiance, and I really feel bad having to be dependent on them. I'm currently under my mom's insurance plan, and without that, my remicade treatments alone would send me into an ocean of debt. So I can't really move out, or else my mom wouldn't able to claim me as a dependent (I think? Maybe the laws have changed with Obama's Healthcare deal). And I'm weary about finding a job because I'm not sure if I'll be able to hold it down in the case of a flare up. So it's really all this uncertainty that bothers me.
Posted 12/21/2010 3:04 PM (GMT 0)
I am also considering surgery at this point, so I know where you are coming from.

Have you tried imuran? That helps a lot of people, although some of us cannot tolerate it. Rectal meds can be great too.

I had a consult recently with a colorectal surgeon at the mayo clinic. He told me the failure rate for the j-pouch is about 10 percent (about 10 percent end up having a permanent ileostomy ... bag). An additional 20 percent have ongoing problems, like pouchitis, but stay with the pouch because they can live with the problems and still tend to feel much better than they did when they had active colitis. about 70 percent are very pleased with their j-pouch and wish they had done it sooner and have few, if any, ongoing issues.

The surgeon told me that the average number of BMs with a j pouch is around 7 or 8 a day, and that they tend to be a bit loose.

There are also some risks with surgery, like impotence, problems urinating to name a few.

He suggested to completely exhaust the medical management option before considering surgery, and he reminded me that UC can spontaneously go into remission, that is, the disease tends to have it's ups and downs unrelated to medical treatment. In fact, MY UC symptoms have just recently decreased drastically over the last week without me doing a thing.

Post Edited (C_G_K) : 12/21/2010 8:07:11 AM (GMT-7)

Posted 12/21/2010 3:25 PM (GMT 0)
My first GI 11 years ago was against me having surgery for that reason-new drugs are coming out, a cure could be found. Well, 11 years later except for remi there is no cure or close to it. Just more toxic drugs-no thanks-even with all my j-pouch problems I am still 100% better off without my colon.
Posted 12/21/2010 3:31 PM (GMT 0)
I am currently on imuran as a supplement to the remicade. Honestly I don't think it does a thing, but by doctor says that there is an increased success rate with imuran used together with remicade.

Thanks for the info about surgery. The impotence risk is alarming, to say the least. The 7 or 8 BMs a day seems a little high to me. I'm doing better than that now without the surgery.
Posted 12/21/2010 3:43 PM (GMT 0)
pinkerton88, I would encourage you to be patient if you can, and give it more time before going down the surgery route. I had continuous UC flare-ups from July 2005 (when I was first diagnosed) till August 2009. The last few months of which were really bad and the my quality of life really suffered - I become virtually house bound. During those four years I tried quite a few different medications, and for the most part was prednisolone-dependent (oral at first, then foam enema).

I only turned a corner after trying budesonide foam enemas for the first time. They really worked for me, and that is when my remission began. After a few weeks my colon condition improved to the point where I had no further need for the budesonide enemas. Around that time I also changed my diet, and I believe this has helped to keep my colon in good condition, and allow it to keep getting better. I have been in a solid remission every since.

When I was at my worst, a consultant at the hospital was telling just how bad the state of my colon was. I had just come round from the influence of sedation, having just undergone my third endoscopy. He said it was in a really bad shape, and said something like "I wouldn't want to have your colon in me!" I could see where he was coming from. He is a very experienced consultant nearing retirement, and I imagine that for the largest part of his career surgery was considered to be the only known proven treatment.

As you can imagine, I am very glad now that I hung on to my colon, and gave it the chance to heal and get better, even though it took four tough years to get there. I would say give it more time, and discuss with your doctor all the various treatment options. You never know, the medication which really works for you might be the next one you try. Best of luck!
Posted 12/21/2010 3:49 PM (GMT 0)
Pinkerton88,

We were in your shoes a couple of years ago and I know how hard it is to make this decision. At the beginning of my son's UC he would not even listen to the word surgery. Slowly, over a couple of years he saw his life become completely out of his control, he became very ill and was in a lot of pain. Just as we were coming to the conclusion that surgery was the best route, he became really ill and the choice was pretty much taken out of our hands.

He had been accepted to his first year at university and was able to defer for a year. That allowed him the time to go through the three surgeries and recover without the stress of school or work. In his case the surgeries have been such a blessing. I will not lie, it has been a long and hard road at times, but he is now 15 months from his first surgery, is off living in residence at university, teaching snow skiing and having the time of his life. In every way he is completely healthy. He does have a minimum of 5-6 BMs a day but some days more...it all depends on what he eats. However, he can choose to go to the bathroom at a time that suits him and he is literally in and out in 1-2 minutes. He is usually up at least one time during the night but he also eats a lot in the evening....so it partially is his own doing.

The best advice I can give you is, if you are starting to think this way, to spend some time to find the very best colorectal surgeon that you have access to. I truly believe this makes such a difference. These surgeries have a lot of judgement calls along the way that need to be made and you want someone who has done hundreds of them. Make an appointment and get to know the surgeon and come in with a written list of questions. Make sure you get them all answered. That way, if the needs arises, decisions can be made in a relaxed manner and fully thought out.

Something in your favour is that you are living at home and still under your parents insurance. You could take the year and just get healthy and then get out and on with your life.

I wish you all the best. I know that this is not an easy decision. We are happy to share any part of our journey with you.

Cathy
Posted 12/21/2010 6:16 PM (GMT 0)
i was 21 when i got sick, turned 22 two months after i got sick actually, so i was exactly where you were, noone offered me surgery it never crossed my mind, so as a result i wasted my entire 20's when i should have been out having fun and doing things, i was too sick to enjoy anything, trying different drugs waiting on them to fail. So 8 years after getting sick i had surgery, i wish i had done it the day i first saw blood. I have a perm ileo, and this is awesome! no wondering where a bathroom is, no dangerous drugs, no missing out on fun things. Nooone knows unless i tell them, i decided against a jpouch because i didnt want the minimal risk of failure, and i had a small child and didnt want the extra surgery and honestly, didnt want to ever go to the bathroom the normal way again. And its been 3 and a half years since surgery and there isnt a day that goes by that i dont say, im so happy i had surgery! somedays its because i wake up and am out the door in 20 minutes, somedays its because i can eat a banana without getting sick. It's little things, or its big things like going on field trips, or out to clubs, or on vacations.
People tend to think that a bag is a death sentence, its not! and people tend to think that surgery is giving up, but its not that either, its taking back your life, literally kicking that colon to the curb!
good luck!
Posted 12/21/2010 7:30 PM (GMT 0)
Pinkerton,

Sounds like most of your symptoms are coming from the rectum and left side of your colon. Rectal meds can do wonders to clear up those symptoms. Have you tried Rowasa?
Posted 12/22/2010 10:49 AM (GMT 0)
The best guarantee for a perfect surgery lies in picking the best possible surgeon. Get recommendations from www.j-pouch.org I've had my pouch for 10 years; it's perfect. My surgeon is the top CR surgeon on the west coast and he is the master at this surgery. I've met a few pouchers over the years who have lost their jpouches due to the inexperience of their surgeons! Do not go to your local hospital, a VA hospital, or don't do this if on Medicare. Ask your CR surgeon lots of questions and be sure to ask him and her for a list of his/her patients you can speak with.

Sue
Posted 12/22/2010 10:45 PM (GMT 0)
I know what you're going through, but don't give up hope quite yet. Last year, at age 32, just 2 weeks before my wedding, I got sick for the first time with severe UC (pancolitis). Totally out of the blue. I had a great career going as business consultant, and I had to quit my job because the UC was so debilitating. After 10 months of nonstop suffering, I was literally days away from deciding to have a colectomy. Then, finally, I started feeling better. Something kicked in -- maybe one of the drugs, or my own immune system decided to behave itself -- and finally I went into remission. So don't give up hope yet.

That said, I have several friends who have had the J-pouch surgery, and they are all VERY happy with the results. When I was so sick and considering having the surgery, I got used to the idea of having the surgery. My J-pouch friends have told me that even if their pouch fails, it will have been worth it, because they're not sick anymore.

I know neither answer is easy, but I hope this helps. Your'e not alone!
Posted 12/23/2010 3:27 AM (GMT 0)
Pinkerton-
I got diagnosed with UC at age 14, i tried every medication and took 26 pills a day for over 8 years. When remicade quit working after about 4 infusions i was told surgery was my best option at age 22 i had surgery. I had to have an ileostomy for a year. Honestly, i am a petite girl and the bag wasnt bad at all. I had a hard time deciding to get the final J-Pouch procedure because i was so happy with my bag. I did get my reversal and have had the J-pouch for 2 years now and i am so happy! I never knew life was so great until now, ive lived with UC for soo long! I do go to the bathroom about 6-8 times a day but its just as fast as if i were going pee and its very small amount. Its not inconvienent at all. I can hold it for a long time, i can eat whatever i want. I basically feel normal finally and its great! I wish i would have gotten surgery sooner and i advise it to anyone! If you have any more questions just ask! I have a ton more advice/experiences that i can help you with.

Amber
Posted 12/24/2010 3:26 PM (GMT 0)
Thanks to everybody for the advice and input. I'm still processing all of this information and doing some more research, but like I said, I'll discuss it with my doctor in January. As of right now I feel like it would be too soon to go through with surgery, but then again, today has been a good day for me thus far. Who knows how I'll feel tomorrow. And, like I said, that's really the thing that bothers me: uncertainty. It's probably the worst part about this condition in my opinion.
Posted 12/25/2010 8:27 PM (GMT 0)
I suffered with UC for about five years. I didn't really want to do the surgery but it seemed to be headed in that direction.

It was during this time that Humira became and approved drug from my Insurance company.

I was on Prednisone & started Humira. No change for the first few months.

My GI was at the point where she said there was nothing else to do but surgery.

I got a second opinion from another GI a little over three years ago. He was determined to put me in remission. At that point I started a Gluten Free diet. I noticed a huge improvement within 6-8 weeks.

Went in to complete remission, got off the Prednisone and have been living a norma life for the past three years.

I take a Humira injection once every two weeks and avoid Gluten.

I once had a little lasagne and had diarrhea the very next day!

Humira & a Gluten Free diet have saved my life.

Posted 12/26/2010 5:28 AM (GMT 0)
Pinkerton--

Here's my two cents (to be taken with a grain of salt, as all responses on this forum should be, but also because I have yet to be hospitalized for my UC): Exhaust all possibilities with medication. I've had UC (originally d'xed Crohn's) for 3.5 years and am slowly but surely failing every medication to come my way. But I've decided that I will keep trying new treatments, combinations, alternative medications, diet modifications, etc. and only then resort to surgery, especially since I'm so young. But once again, it's hard for me to give any advice--I'm fortunately in grad school in a program very accommodating to my health issues and I'm only tied to the toilet from around 7pm-midnight so I can go about my daily life fairly normally. I'm not sure how I'd handle a full-time job, so I'm just in a different place than you. But, just wanted to give my two cents. I'm sorry you're dealing with all this at 22.

Good luck!!

Also--love the username :)
Posted 12/26/2010 5:32 AM (GMT 0)
Also: http://www.nytimes.com/ref/health/healthguide/esn-ulcerativecolitis-ess.html?ref=health

This isn't particularly informative, but nice to get some quotes on different GI perspectives.
Posted 12/27/2010 5:10 AM (GMT 0)
I would hold off on surgery as long as possible. It is a large and very important organ to have removed! I was ready to give in last year and go for it, but found something that has worked great... I posted about it earlier today, might check it out and exhaust a few more options for yourself before diving into a perminate surgery! My post from earlier is called "a ray of hope..."
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