Hi everyone,
I just discovered this forum a few days and its been great to find so much information and so many people who are dedicated to reaching out and supporting each other.
So I was diagnosed with UC back in March of 2007 but probably had it since Nov 2006.
I have not gone into remission yet and have gone through Mescalamine and have been on Steroids for 11 months. I got a really severe reaction to the 6-metapuracapsul so couldn't take that and I just had my 3rd Remicade infusion 3 days ago.
My Doctor says that I have become Steroid resistant now. I am on 25mg and still have 5-12 BM's in a 24 hour period and get up at least 3-4 x a night. I've lost 40 pounds since
So my questions are
1.Is there any chance of the remicade helping me get into remission after 3 infusions. My Doc thinks that after 3 i should see some improvement. I haven't after the 1st 3 although the last was only 2 days ago
(I took antibiotics for an upper resp infection a few weeks ago and seemed to have made a slight improvement- has anybody heard of that)
2. I am seriously thinking about having a j-pouch as I am fast running out of treatment options but I'll admit the more I read the more nervous i get about the complications like Pouchitis. I understand its a cure but the going 8-10 times a day doesn't seem like a huge payoff.I guess I need to hear from some of you to reassure me
3. Do any of you know who the best surgeons in Chicago are. My GI doc recommended a surgeon who does them via lap but if any of you know personally of who the go-to guys in Chicago are that would be helpful
1. How come some surgeons do it in 1 stage and some in 2. The idea of avoiding the ostomy is very attractive but are there dangers of having the colectomy and j pouch surgery all at once
3. There's so much stuff i can't eat since i got UC. Will I be able to eat any fried foods, spicy foods ,chocolate, any fruit afterwards.
Anyway sorry for the long winded post but I see the Doc on Tuesday so want to be armed with as much info as possible.
Thanks everyone

Hi Wax,

I am not an expert but I'm sure one will come along and respond.
1. From what I understand, most people get some relief from remicade after the first treatment. Your doctor should be able to tell you if it is worth your time and money to keep with these infusion. I know that even though I had bad reactions to them and had to stop, I still felt amazing just days after receiving an infusion. It is pretty common to get relief from bowel problems from taking anti-biotis that were not prescribed for your bowels.
2. 8-10 bowel movements is just a general number. With my pouch I was only going 4 times a day and never during the night. As you read the boards please be aware that most people who get a pouch do not have the complications that people come here to talk about. The people on the board represent a minority, and while it is good to know what could happen, please don't get discouraged. Take it one step at a time.
3. don't know much about chicago...
4. Whether a doctor does a 1 or 2 step depends on your health and the confidence of the doctor in your particular case. Many people need that time with an ostomy for their j-pouch to get healed and rest before it is put to use. Having an ostomy can also give your body a huge break. A lot of people are able to put back on some needed weight, get off of steroids, and put parts of their life back together that have up to that point really suffered with their UC. I found it to be a much needed break before dealing with having a whole new set of issues with adjusting to a j-pouch.

You should find a lot of info, and much needed help here. Best of luck...and I ope some more posters come along.

Hey Wax,

1. I don't know much about remicade, I'm sorry. I had my collectomy 5 1/2 years ago and they weren't really using that drug by now. From what I've heard about it, I thought it took 3 to see improvement. But you probably wouldn't see the difference just 2 days later, anyways...
2. Same thing that Marcene said. Don't think that what you read on the board is the norm for j-pouchers. HOWEVER, be aware that there are always complications with the j-pouch and there are always issues that caan come up. When I am feeling fine, I'm going 4-6 times a day, and the pain isn't so bad. Lately I've been dealing with a partial bowel obstruction and those are pretty popular with the j-pouch... 40 lbs. is a lot of weight to lose. So, even though you may still be going to the bathroom a lot at first (it always gets better the longer you have the pouch), you won't be losing massive weight like that.
3. If you trust your GI, I would probably stick with the colorectal surgeon that he suggests. I don't know about surgeons in the chicago area, but I did come across a post on the board last week about a woman who dealt with a terrible colorectal surgeon in the chicago area. I was trying to search for the post but I just can't find it. If I come across it, I'll definitely let you know. PM me if you want and I'll see if I could track her down.

As for the 1 or 2 step, nowadays most surgeons don't really do the surgery in a 1-step. It's too risky, with the risk of sepsis and whatnot. I actually had to have mine done in a 3-step (collectomy with ileostomy; j-pouch; ileostomy takedown) but I also had a lot of complications and my collectomy wasn't necessarily a choice, it was more so life or death.
As for the diet, there are a lot of foods that you can't eat with a j-pouch because you won't have a large intestine anymore. so, you'll have to say goodbye to most cabbage, raw vegetables, nuts, anything hard to digest. spicy foods aren't great, but I tolerate them so much better now than I did when I had UC. chocolate doesn't really give me a problem. as for fruit, they say you're not supposed to have blueberries and some other fruits, but that doesn't really stop me. there should be some links to the diet you're supposed to follow right here on the j-pouch site. also, if you decide on the surgery, a dietitian will visit you in the hospital after your surgery.
I hope this helps. Let me know if you need anything else, good luck.

I can't advise about remicade or Chicago but your diet is definitely different (for the better) with a pouch.

For the vast majority of people, pouchitis is a minor problem that is easily handled with the occasional round of antibiotics. IMO it is NOTHING compared to living with colitis. And I can tell you, 8-10 times a day with the pouch, at least for me, is 100 million times better and different than the same amount of movements before surgery. Why? Because you have control over when you go, and (for most people), you are completely pain free. Basically, I just release a little stool every time I go to pee. But there's no groaning or cramping or sweating or running to the bathroom anymore. I can go canoeing, sit on a plane without panicking because of the time period when you aren't allowed to get up and use the bathroom during takeoff and landing, go to little hole in the wall diners that don't have a bathroom, go on 4 hour hikes, there are tons of things I can do now that I couldn't do before the surgery.

Hey Wax,

As far as the remicade goes. I saw improvement practically overnight after my infusion and still didn't have any luck with it after a few treatments. I am also from the area you are in, so if you want to talk more in depth you can PM me or email me anytime. I know about the surgeons in the chicago area, and even if I didn't have the surgeon you are thinking of going to, I probably know someone that goes to them. Let me know where you are thinking of going.
As for me, I had my two step surgery done in the spring of this year at the University of Chicago. Great hospital and great surgeons. I'm 22 and live in Bolingbrook which is right by you so let me know if you want to chat.

Hey, Wax!

1. I don't really know anything about remicade. I was never on it, and really had my UC under control with sulfasalazine prior to surgery (I had surgery because of low and high grade dysplasia found).
2. A far as frequency goes, I had my takedown in February, and I'm probably at about 4 to 6 bathroom trips a day. I'm fine with that. I don't have urgency, and was able to go back to work about three weeks past takedown for 8 hours days, including an hour each way on the train.
3. I had my surgery (laproscopically) with Dr. Saclarides at Rush. He was great, and is one of the top guys who does j-pouches in Chicago. He is a great doctor, and really a very nice man as well! Other top docs in Chicago I ran across while I was looking for a surgeon are Dr. Steven Stryker at Northwestern and the entire team at University of Chicago. I met with Dr. Saclarides first, and decided he was the doctor for me, so I didn't meet with anyone else!
4. Dr. Saclarides wouldn't do anything but a 2-step, because he firmly believes that doign a 2-step increases the success of the procedure. I know that some doctors do 1-steps, but I don't know if any of the surgeons in Chicago do it. Personally, I'd have loved to avoid the bag, but if my j-pouch works better now because of the 2-step, it was worth it!
5. I'm pretty much eating whatever I want now! Still being careful with stuff like popcorn and raw veggies, but I eat chocolate every day, fresh fruit, etc.

Good luck, Wax! Feel free to PM me if you want to talk further. I'm in Geneva, and have a summer place down in Wilmington, so I'm pretty close to Plainfield!

Terri

I can answer some of your questions, but not all. I had immediate relief with remicade. It kept me in remission for several months, but I had to stop taking it because it gave me "drug-induced lupus." I had colitis for 9 years and I too became steroid resistant and ran out of treatment options. My last ditch effort before surgery was Humira, but it didn't help me. You may want to ask your doc about it, because it has helped others.

The doctors usually determine how many steps your surgery is based on your current health. Some actually do it in 3 steps if you are really sick. I did two steps and for me, the bag wasn't that big of a deal. AT first it was, adjusting to it and of course body image issues, but once I was used to it, it was great. I could eat anything! I gained all of my weight back and was in good shape for the 2nd surgery.

I am not familiar with docs in your area, but I hope the other info. helps. Good luck in whatever you decide!

Melonie

I can add my thoughts on some of these issues:
- My understanding is that if you haven't seen significant benefit from Remicade after the first three doses, it probably won't help you.
- If you are on prednisone and are as debilitated as it seems you are, you should definitely have(at least) a two step surgery. This is much safer and (as others have posted) gives you the opportunity to get off the prednisone and build yourself up between the two surgeries. This is exactly what I did.
- I am 7+ months out from 'take-down' and go 5-6 times a day, but with total control - unlike the U.C. days. Don't be afraid of surgery - continuing on the way you are has significant risks as well.
Hope this helps, and good luck,
Jeff

Here's what I was able to find out about the 1 vs. 2 vs. 3 step question, partly by talking to my surgeon and partly by reading some of the recent research on this.

The 3 vs. 2 step question is very much controlled by how sick you are. And it would stand to reason that a 1-step could then be done if you were really healthy.

But some surgeons will not do a 1-step procedure no matter how healthy the patient is (including on FAP patients who aren't sick at all and have never been on steroids). (FWIW, this includes all the surgeons at Mayo.) The reason is because of the risk of a leak at the anastomosis site, which, while rare (in the 7-10% range, IIRC), can endanger the pouch itself. Since bowel is a scarce resource, that would count as a very bad outcome.

There is another faction (I think there's a group at the Medical College of VA included here) who think that the risk of subsequent obstruction at the stoma site is too high relative to the low risk of anastomotic leak. Having had no stoma eliminates that risk, and they do 1-steps routinely.

But if the article and Q&A I read on it is any indication, it's a practice that is not really agreed upon even by the most skilled surgeons in the field.

The #1 question to ask the surgeon is how many of these procedures s/he has done. The more, the better. My personal feeling was that I wanted someone who did them at least once a week.

PS I am 6-7 weeks out from takedown and eat a lot of things on penywisdom's "say goodbye to" list, including raw vegetables, nuts, and all fruits. Can't speak to cabbage--I hate it before and after surgery.

You definitely do have to avoid them for 4 weeks after each surgery, since the bowel is swollen and you're more prone to obstruction then.

And so far, for me, huge agreement with what rockandroller says about things I used to have to worry about but now (knock wood very loud while you read this!) don't. That airplane bathroom thing is huge. When I think about how much time and energy went into worrying about that, it makes me want to cry.

quote:

As for the diet, there are a lot of foods that you can't eat with a j-pouch because you won't have a large intestine anymore.

As a universal statement, that is simply not true. Not only are there not "a lot of foods" that can't be eaten, there isn't even one food that needs to be avoided simply because we don't have a colon. Just as with UC, everyone is a little different and you'll have to experiment to see how well you do with certain foods. And you'll certainly have to modify your diet in the short term following surgery. But with any luck, you'll be able to go back to eating anything that you want.

I can certainly refute the statement that you'll absolutely have to avoid cabbage. I love cole slaw and eat it all the time now. I also eat several pieces of fruit every day (apples, oranges, pluots, nectarines, pineapple, etc.).

There will be some people who will post that they have to avoid certain foods and you may have to as well. I am only saying that that won't necessarily be the case.

Scott

I agree with Scott - there aren't any forbidden foods. You'll just have to figure out what works for you and what doesn't. And just because it doesn't work for you this week doesn't mean it won't work next week. So if it's a food you crave, keep trying until your j-pouch listens to you. You're the boss of it.

I eat nuts, popcorn, corn on the cob, all types of mushrooms, cabbage, lettuce, fruits, raw and cooked vegetables - anything I want.

A pluot sounds good.... I'll be right back.

kathy

Thanks everyone for all the great information. You guys rock. Its so good to know that you are all out there.
I miss spicy food, fish and chips( I'm from England originally) and chocolate but i miss being me more than anything else and if it takes surgery to get that back so be it.
I'm getting a lot of postive energy from all of you which is taking a lot of anxiety away. I guess i don't won't to miss out on a potential remission by having surgery too early. It sounds like from what my Dr is saying that remission may not be realistic for me though as remicade is the last line and after thius 3rd infusion if nothing positive happens I'm out of non surgical options.

Pluot- you should have a apricot and a plum and stop eating silly hybrid fruits Kathy

But the colors are so pretty.... Maybe I'll go have an aprium instead. Speaking of hybrids, Cynycal (Becca) posted on her blog about trying to gain weight after chemo. She was eating fried macaroni and cheese. Now THAT sounds heavenly, doesn't it?

BTW - Jan Dollar had a 1-step and so did Janna who stops by here once-in-a-while. Both of them had very successful surgeries. As I recall, Jan was on a somewhat high dose of prednisone at the time of her surgery as well. I agree with you, if a surgery can be done in one step, go for it. Avoiding surgery altogether would be the optimum choice, but fewer surgeries would be my next choice.

kathy

Yes, a "somewhat high dose" of prednisone...80mg!! I would not recommend a 1-step generally with that sort of dose. Plus, I had been on high dose (>30mg for six months before surgery). I am sure it contributed to my many complications.

Jan

I have to give another shout out to Dr Saclarides! Love the guy. he did my surgery in 2 steps lapro, assisted by Dr Brand (who trained at Cleveland Clinic). My GI, Dr Keshavarzian, and the entire GI team are fantastic at Rush as well.