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Posted 4/20/2010 6:21 PM (GMT 0)
So i have had UC for 2.5 years now. When I was first diagnosed I was in really bad shape. I dropped about 50 lbs. and I was in the hospital for 2 weeks. In that time i was given 2 remicade infusions and a bunch of prednisone. Ever since then I have been on max dose of remicade which is every 4 weeks, max dose of 6mp and frequent courses of predisone to control flare ups. I usually seem to have 2-4 flares a year and have been in the hospital once for a flare and once for pneumonia (in August) due to all the immune depressants. SO my UC has not been good and since I keep breaking through the max dose of remicade my doctors think I need the surgery. i also have a lot of polyps which some have been tested and shown to be pre-cancerous. So basically all signs point to surgery, but I'm only 24 and feel like I'm too young to give up my colon. My doctor also mentioned that there is new trial drug that is being studied and I could be a candidate for that. So i have some questions for you all:

Anybody my age have the surgery? How long are you out of commission afterward? How bad is the bag really? How loud is the gas?

I'm just sick of being sick and looking for some words of wisdom from people who have had UC and had to make this decision.

Thanks.
Posted 4/20/2010 6:24 PM (GMT 0)
I haven't had the surgery, but I can say that the colon would be going if I were in your shoes.

Are you considering a j-pouch or a permanent ostomy?
Posted 4/20/2010 6:43 PM (GMT 0)
There are lots of people your age, and younger, who have had surgery for UC. UC doesn't care what your age is, if your quality of life is poor surgery is a very good option. I suppose you should start researching options; there are 3 surgical choices, all come with pros and cons so it's best to see which outcome you're willing to live with. I had sugery 9 years ago and am very happy post UC. You're young and should be enjoying life, surgery will give you your life back.

Sue
Posted 4/20/2010 6:46 PM (GMT 0)
DrinWI-First, do not ever think of it as giving up your colon, think of it as winning!!! Cause thats what you will be doing, you will, literally be kicking that thing to the curb! It doesnt want you, so show its who's boss and get it out of there!!!

I was 21 when i got sick, 29 when i had surgery, 8 wasted years in there!
So i was a bit older than you,but not by much. Anyway, its a hard surgery, im not gonna lie about that, but its sooo worth it.
Recovery time varies by each person, depending on age, meds you are on before hand, severity of the disease, lots of things. Average is about 6-8 weeks. But its amazing at how, when you wake up from surgery, you feel better, its like a clean feeling.
You will be tired for a few months, but if you are like me, i felt so bad before that even though i was tired, i still was in better shape.
Anyway, the bag is NOT BAD AT ALL!!! its very convenient at times, lol. When someone gets a stomach bug or something around here and are in the bathroom all the time, they look at me and say, i wish i had one of those right now, lol.
noone will see it, noone will smell it, noone will know its there. You can wear whatever clothes you wear now, you can do whatever you do now, And probably more cause you wont be sick anymore. You can also eat whatever you want, some people choose to stay away from certain foods, and for the first few months you will need to stay on a low residue diet, but after that its whatever you want.
For the first few weeks, there is a lot of gas, but its not like you think. Lots of times you dont even know its happening. There are times it makes noise, but the only time anyone has ever heard mine were if they knew thats what it was, the very few times its made noise, people have asked if i was hungry.
And there are lots of ways to keep from getting noisy gas anyway, and also you can do lots of things to muffle the sound if it does happen.
Posted 4/20/2010 7:20 PM (GMT 0)
I second everything summerstorm said. Well put!

I was 18 when I was diagnosed with Crohn's Colitis (they're still not sure if I have CD or UC) and 28 when I got my permanent ileostomy 5 weeks ago. It's only been 5 weeks and already I know it was the best decision. I feel so much better than I did before surgery. My friends and family said I LOOKED 10 times better just 2 days after surgery--color in my face, brigter eyes, etc. Multiple people said that...it's little things that you don't realize that the disease has taken from you.

It's like summerstorm said--but instead of wasting 8 years, i wasted 10 being sick. But if someone had suggested this surgery to me any earlier than last month, I probably would have turned it down. I'm so glad I've done it. I'm so ready to LIVE MY LIFE and not think about being sick instead of living through sickness and hoping for a tiny bit of health each day.


You'll have to make the decision that's right for you. Like suebear said, there are different options for surgery and you ahve to think about which is right for you. Hope you start feeling better soon, one way or another!!
Posted 4/20/2010 7:27 PM (GMT 0)
I was diagnosed in my mid-20s, and if I had realized what it would be like to have this for 25 years (so far) and how it would control my body and head and my life, I would have opted for surgery, I think. It sounds like a smart option for you.
Posted 4/20/2010 10:28 PM (GMT 0)
Thanks a lot for all the input an encouragement. I'm thinking that I will just go with the permanent ostomy bag because as the J-pouch was described to me, I would be going to the bathroom 6-8 times a day and if I wanted to do that I would just keep my colon. I also heard that you can get some pretty bad monkey butt from the pouch. The bag just sounds a lot better.

SummerStorm: what you said about not thinking of it as giving up my colon made sense to me. Thanks. That gave me a different point of view on that.

I think I will be making an appointment for me surgery next Tuesday.

Those of you with the surgery can you still drink alcohol? I like to have a good time and do a lot of tailgating at Brewers Games and such and like to drink socially. I have heard that beer can cause a lot of problems, but I'm a bigger fan of Vodka anyways.

Thanks again everyone. I wish I would have found this site earlier. However, early in my disease I tried to act like nothing was wrong and didn't look that hard for support.
Posted 4/20/2010 10:37 PM (GMT 0)
More questions:

What is eating like with the bag? What I mean is, how is weight gain/loss? Staying hydrated? Feeling full? It just seems like without a colon my body will be missing a major part of my digestive system and wondering how that affects everything.
Posted 4/20/2010 10:44 PM (GMT 0)
Ok, so I don't have a j-pouch, but suebear does. She has said that while she usually has a bowel movement each time she urinates, but that it's quick, easy, and she doesn't have ANY urgency and can hold it if need be. So it's nothing like the urgent, mad dash, poops that you have with UC. I know it's your decision, but I wasnted to make sure you knew it wasn't like UC pooping!
Posted 4/20/2010 11:03 PM (GMT 0)

My daughter was diagnosed with UC at 15-1/2 at the beginning of her sophomore year of high school. She had 3 major flares in less than 2 years. Each time she was out of school for almost 9 weeks. Her last flare was in the spring of 2008. In July 2008 she had step 1 of the j-pouch surgery. It was right after school and gave her the entire summer to recuperate and get comfortable with her ostomy. She never loved it but she learned to deal with it.

It was major surgery but within a few weeks she went to a party with all her friends. She didn't swim and she didn't stay the entire night but she felt 100 times better than when she was flaring.  She did find she needed to stay super hydrated with her ostomy. Once she got the hang of it, everything was fine.

She had her final j-pouch surgery in November. She could have had it several weeks earlier but there were too many things she wanted to participate in at school. She marched in the homecoming parade. She wasn't self-conscious wearing the bag. Most people didn't know. The recovery from that surgery was very quick. She didn't have too many issues.

She's never regretted the surgery. She had a phenomenal senior year. She was healthy and happy. 

She doesn't really think about how often she uses the bathroom. To put it bluntly, she pees, she poops. No urgency, no pain! She can go for long car trips and not have to worry. She drove from NY to Florida with friends and had no issues. She can go to the beach, the park, the movies, everything normal teenagers do and not have to worry. She doesn't drink but we have talked about it. If she drinks she'll approach it the same way she approaches food. If it bothers her, she has two choices. Don't eat/drink it or deal with the aftereffects. She eats what she wants. She knows some foods bother her but it doesn't always stop her.  

Best of all, she's been on no meds since her first surgery!
She had a full incision (her surgeon prefers it). She was fine with it from the beginning. Now almost 2 years later, you can barely see most of the scar. She sees the surgeon once a year for her annual pouchoscopy. She's due for one in a few weeks.

You can probably do a search of my posts from July-November 2008 to read more.

Good luck with any decision you make. Feel better soon.

Posted 4/20/2010 11:46 PM (GMT 0)
the trial drug being considered for you is probably either vedolizumab or golimumab. both are given via infusions like remicade, with vedolizumab specifically targeting the gut while golimumab is a TNF inhibitor like remicade. at least one of those drugs will likely be approved for UC within the next few years. since you failed remicade, humira's another option for you.

ANYWAY i had my j-pouch procedures in december and february following a long bout with severe UC. my surgery was done laparoscopically. i was in the hospital for five days following step 1 and for four days following step 2. i was back to work four weeks after step 1 and two weeks after step 2.

in between step 1 and step 2, i had a temporary ileostomy. you can eat whatever you want with the bag and i quickly regained the weight i lost with UC. however, cleaning (and changing) the bag sucked and the stoma noises were occasionally loud & sometimes unpredictable. feeling healthy is a fair trade for that though. with my temporary loop ileostomy, i had to empty the bag maybe 8-10 times a day due to the frequent liquid output. with a permanent ostomy i believe you empty the bag 4-6 times a day, and the output is more solid.

studies show that over 90% of people who have the j-pouch surgery are happy with the results. two months post-op, i use the bathroom about 8 times a day (and i just realized i went only once during my 8:30 to 5:00 work shift today! awesome). there is no urgency to go and i can usually hold a bowel movement already for about an hour. like fruitgirl mentioned, i often go when i need to pee.

you don't have to continually order supplies like you do with an ostomy. i eat mostly everything i want, but i do go easy on the buffalo wings, jalapenos, BBQ sauce, etc ;-). i can drink wine, beer, and liquor and go out to bars and have a good time. butt wipes & cream are a quick fix for "butt burn," which really isn't even an issue if your bowel movements aren't diarrhea-like. my "medications" consist of optional probiotics, imodium, and metamucil wafers. without a bag, i'm not self-consicious about having sex. my incision scars are small and already fading. needless to say i'm very happy with the results of my j-pouch surgery and would recommend it to anyone.

and even though i personally didn't care for cleaning & changing an ostomy bag, it's a LOT better than life with UC and i'm sure many people like summerstorm would highly recommend a permanent ostomy as well.

good luck with whatever route you choose.
Posted 4/21/2010 12:09 AM (GMT 0)
well glad i could help with my explanation! thats one of the things i hate, is for people to think of surgery as "giving up" i think that keeps alot of people from doing it. That and so much misinformation about the types of surgeries

Ok your questions

Yes you can drink, alot if you want, trust me, lol. I dont like beer so i dont know much about that, but i think the problem would be the gas it could cause. Some of the things you could do are to eat something like some bread or something thickening, and also take some gas-x BEFORE you start drinking and take a little more during the drinking, also, i find that i take some immodium before drinking and during drinking that helps keep my output down, which is good, cause using the bathroom drunk is not easy, lol.
I like vodka too, esp in jello! But lately my favorite thing is butterscotch schnapps or peach schnapps with baileys, (random fact, makes your output smell like peaches and cream!)

eating-its just the same as regular eating, you will get full, you can eat alot, or a little whatever makes you happy. Its best to never let yourself get hungry, that can cause gas.
The major problem anyone missing their colon has is dehydration, so just be sure you drink lots of water, about twice what you drink now. And you may want to add some salty foods they help retain water. Some foods you may notice will come out looking just like they did when they went in, doesnt mean anything, just how stuff breaks down. And your food comes out faster, like, i ate at 6:45, its 8pm and most of its out by now. Im not sure how,but you still get all the nutrients you need out if it and the calories.
Posted 4/21/2010 2:54 AM (GMT 0)
 So I could not refuse to take the medications I am scared of and go for surgery instead if 5 asa and steroids do not work??
Posted 4/21/2010 4:19 AM (GMT 0)
you can always opt for surgery, its your choice If your current GI wont help you find a surgeon get a new GI
Posted 4/24/2010 6:33 PM (GMT 0)
 Oh good, I was scared that I would not have that option if I had not tried every drug out there. If I am going to go through that amount of money and discomfort I would rather be cured for good.
Posted 4/24/2010 9:23 PM (GMT 0)
More and more doctors (but probably still not many) suggest surgery after first-line therapy fails, and I'd wager that will be the future of UC treatment, especially in light of greater surgical success and comparative effectiveness studies.

Medicine is extremely resistant to change, though, so it will probably take some serious browbeating to get to that point.  There are individual doctors to consider, too, so one might have to shop around.

I had a doctor once who said his own worst nightmare was having "a bag," and he wouldn't recommend surgery for UC unless a patient were near death.  I found a new doctor.  There's no use working against someone else's pathologies.

Posted 4/25/2010 4:04 PM (GMT 0)
DRinWI - I'm not sure where you're at but I'm outside of Milwaukee (saw the Brewers games ref) so if you'd like to meet face to face w/ someone that has been through surgery and is in the area let me know. i have booklets on ileo and jpouch surgery that you are welcome to since I'm done with them. :)

I opted for the jpouch done at Mayo in Rochester, MN and am a 3 stepper (3 surgeries to complete it). It's the best decision I made in my UC life. I even called my blog when I started documenting thing "Getting back to life" because that's what surgery let me do. If it fails I can always go back to a bag but for me it was a lifestyle issue since I'm an IT tech and with the bag I had to watch how and where I lifted and carried things as I often brace things against my hips and abdomen. I'm also a motorcycle rider and I'm not sure how my ileo would have modified my riding style if at all (I ended up not riding with it due to my surgery timing). I'm sure that in time I would have adjusted and it wouldn't have been an issue. It is also easier for me than having a bag. It's all a matter of preference whether you choose a permanent bag or some sort of internal pouch. If you aren't sure you can always have them leave your rectal tissue in place (although it will still have UC) so that you can go to a jpouch if you want while you have an end ileo.

I'm currently almost 5 weeks post surgery #3 (takedown) and while I do go to the bathroom anywhere from 5-10X/day, it is totally controlled and 10X for me means I ate something that my body reacted to (pepperoni pizza is one that I know will lead to extra bathroom breaks right now and I'm sure I'll find more as I add foods back in). I can hold it if I want/need to for an extended time so there is no rushing for a bathroom or not making it when I need one. My surgeon actually said that I need to hold it for the first 6 weeks to expand my pouch so that I go less once it's grown. The butt burn isn't that bad and as long as I remember to use my cream it is non-existent. If I forget it goes away pretty quickly once I use my cream. My understanding is that as time goes on my skin will toughen up and I will only need my cream when I eat and drink certain things.

Suebear has had her pouch for almost a decade so she can provide more info on how your skin and jpouch things adjust as time goes on.

As summerstorm said, we do have to drink more liquids than your average Joe to keep hydrated but that is true for an ileo and a jpouch.

I would also recommend that you go to jpouch.net and jpouch.org if you have any interest in learning more about a jpouch to aid you in making your decision about perm ileo vs j/k/s pouch. As with any forum, remember that you are going to see a majority of postings from people that are having problems vs people that are out living their lives.

@mom_JnJ - My GI offered me surgery as an option from day 1. He wanted me to try the drugs but always gave me the option of surgery.
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