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Ulcerative Colitis
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Posted 10/4/2010 4:10 PM (GMT 0)
I am 24 and have been dealing with uc for about 3 years now. To first get under control I was on prednisone, and am now on colazol and entocourt. The entocourt is not as effective as it used to be but still does help. My GI tells me I should get the surgery to get the J pouch. I haven't tried remicade, he claims that only 15% of people stay in remission past a year, and is indirectly saying just get the surgery. I am currently on a low residue diet and am actually determined to be strict with it just to rule this out as a possibility to help. In just the few days I have been on it I have noticed that I am having completely liquid stool and am going about the same amount. I thought I would have the same frequency of movements and no liquid. I was also told that if I get the surgery I would go 6-8 times per day and it would be completely liquid.

Has anyone had these same results with this diet? And has anyone had long term success with the remecade?
Posted 10/4/2010 4:14 PM (GMT 0)
i tired, remi, and it failed and left me worse off, and basically i ended up wasting 8 extra months and still having surgery. that being said, lots of people have success with remi, i just wasnt one of them.
i have a perm ileo, i didnt want a jpouch, because i didnt want to use the bathroom the regular way, i didnt want to go 6-8 times a day, my major reason was that i didnt want more than one surgery. I may have been happy wtih a jpouch but im very ahppy with my ileo!
Suebear has a jpouch and she is really happy with hers, she will come along and tell you about it.
Posted 10/4/2010 4:54 PM (GMT 0)
thanks for the reply. In what ways did it leave you worse off than when you started it?
Posted 10/4/2010 5:27 PM (GMT 0)
Remicade made my son (6 years old) worse off... He was on Remicade for 8 months.

  • Remicade lowered his immune system much more than 6mp, he would get more colds and certain bugs which affected other kids with a fever, sent him to the hospital.   Hospitalized 4 times in 2010, only 1 in first 5 years... not that this was due to remicade.. but not to rule it out either.
  • Remicade seemed to work for a bit, but it is less than 60% effective for UC cases, more effective for CD.
  • Remicade - long term risks for Cancer are higher.
  • Remicade - much higher long term financial cost ($1000+ per dose - dose based on body weight)

If I had to choose again we would of picked the surgery option before Remicade, we are very happy to not have to take Remicade.   Sometimes the drugs are not worth the risks. 

 

Posted 10/4/2010 6:07 PM (GMT 0)
thanks for the reply. One of the concerns with the surgery is the time off, how long is the heal up process for the initial surgery, and how long is the heal up time when the pouch is then in use? Also, how many times is he going per day.
Posted 10/4/2010 6:40 PM (GMT 0)
I took 3 weeks off after the first surgery, and 3 weeks off the second surgery. Most people are out 6 weeks after the first surgery so that's would I would count on if I were you. You might be pleasantly surprised to return to work sooner.

Frequency for me is 6-8 per day but you can't compare that with a colon. Emptying my pouch is as quick and easy as urinating and most of the times it empties is because I have to urinate. There is no pain or urgency and I can hold it for several hours if needed.

Sue
Posted 10/4/2010 6:43 PM (GMT 0)
DWAS:

To be honest I am surprised by your GI doc.  Did he not mention 6MP/Imuran before?  I am just surprised that he saying just go to surgery.  In fact it's very uncommon for a doc to be pushing it that way.  I have heard it from people, here and elsewhere but not usually the doc himself unless these other options have failed.  There are many people here who do very well with the meds.  I am talking for years without problems but if your very comfortable with surgery or the one driving the surgery then go for it.  I just wanted to add my two cents. wink

MyUC

Posted 10/4/2010 7:39 PM (GMT 0)
 I have an appointment tomorrow where I plan to ask about that. I am scared he will say no way you have to be very sick and go through every drug before you get surgery.
Posted 10/5/2010 1:25 AM (GMT 0)
I'm so sorry i did not write that in my 1st post. i am on 6mp. I have tried Asacol with not much luck, seemed about the same as the colazol but with a much larger price tag. I also am currently fighting with cortisone enemas. They work OK but i despise using them, its hard to fall asleep with the feeling of having to go diarrhea. I am really stuck here with a decision on trying the remicade or going to surgery.
Posted 10/5/2010 1:59 AM (GMT 0)
I have been in the hospital for 11 days with a severe flare that won't respond to steroids. I am waiting for a Remicade infusion that I got on Thursday to at least work so I can go home. I was showing some improvement on this med, but now many of my symptoms are returning. I am not planning on staying on it long term... just want to use it to end my flare and get surgery when my colon is in a more healthy state.

I found that it was hard to talk the doctors into the surgery option, so your situation definitely seems unusual! They all seemed to want me to try the Remicade long term first (Imuran would have taken too long for me and is not an option). They say... you are too young to decide you don't want your colon (I am 38). I say I am too young to be on a lifetime of what I consider dangerous drugs. I really had to push this. They felt I was just making the decision because I wasn't feeling well, but that was not the case. I have been researching from my hospital room since finding out my two choices were either surgery or Remicade for life. I had a friend come to my room who has an ileostomy to show me her supplies and talk of her experience, I called other friends who knew people who had gone through the surgery and talked to folks on the phone, I reached out and emailed people on the internet plus reading, reading and more reading. Now with every new doc that checks up on me I say, "I still want to go the surgical route" just so they know that this is MY choice. They are on board with it finally. Personally, I am leaning towards the permanent ileostomy because I feel that it fits in better with my lifestyle and the amount of surgery I want to endure.

Ultimately, it is a deeply personal choice whether you want surgery and what type or whether you want to try the medications. There is no right answer. You have to look at your own values and what you want for you body and then hold steadfast to that decision.

Hang in there!
Posted 10/5/2010 3:45 AM (GMT 0)
its always your decision to have surgery,not the doctors!

as for the remi, i went in in augst of 2006 in a flare and i said, take my colon out, i dont want it! and the dr said, try remi, and against my better judgement, i did. It worked for a while, but by novemeber it was wearing off and when i was going for infusions it was very draining on me. By feburary i was in really bad shape, going constantly, horrible pain, it was bad, really bad.
I ended up on like 80 pred trying to get it under control and that barely worked, i was doing 6-8 immodium, half a bottle of pepto, 12 asacol, 50 6mp a day, just to half function.
That was one of the worst i had been.
i finally had surgery on april 17th, 2007 ( i call that my new bday, cause its the day i got my life back) and it made me so mad that i had wasted all that time on the remi when i could have had the surgery in august!

my heal time was about 4 weeks, but the dr said don't lift more than 10lbs in the first 6 weeks that was my major problem.

Posted 10/6/2010 11:06 AM (GMT 0)
how long after the surgery until you could walk?

Suebear what do you mean by you cant compare 6-8 times with a colon? As bad as it sounds to go that much, I forget to look at where I am at now as I am going that much already. I would be completely happy with this if the urgency was gone. I guess I can't understand how having completely liquid stool is possible with out having urgency.

For those who have an external pouch, how many times do you empty it a day?

Thanks to all for the replys
Posted 10/6/2010 1:11 PM (GMT 0)
They make you start walking the day after surgery. My surgeon makes his patients walk a full mile before releasing them from the hospital, which I think really helped me.

How many times do you urinate in a day? I bet you don't know. That's kind of what having a jpouch is like. You go because you have to pee and find you need to empty your pouch too. It's that fast. And don't think that having a pouch equals having diarrhea. I have formed stools just like I did with a colon although they are narrower. And there is no urgency! It would be great if your surgeon could hook you up to a patient of his that you could meet face to face.

Sue
Posted 10/6/2010 4:00 PM (GMT 0)
thaks so much for the info. Do you know any one who has had "pouchites"? my doctor has told me about it and said 15-20% of people will get it and have to go from the internal pouch back to the external again (and another surgery) Did you have any fears about this? Is there any foods you cant eat after the surgery like ones that give you issues?
Posted 10/6/2010 4:24 PM (GMT 0)
Pouchitis does hit a lot of people with J pouches...depending on who you talk to it can be upwards of 40% of people with pouches. However, it USUALLY is dealt with very easily with flagyl. You usually feel better within a couple of days and continue with the antibiotic for a few weeks. Normally people get pouchitis very infrequently (I believe Suebear has had it once in 9 years) and it is only a very small subset that have a chronic problem, which is harder to deal with, and then only some of them will need to have their pouch removed. I think your doctor has mislead you. nono
Posted 10/6/2010 4:35 PM (GMT 0)
I had pouchitis and took a round of antibiotics for it. It went away but came back a few days after stopping the antibiotics. My surgeon told me that a few people need continuous antibiotics to treat it and the trick is to use as little as necessary. I started another round and slowly tapered down and I am currently taking antibiotic every other day. At this point I am doing fine but I don’t know if I will be able to get completely off of them.
Posted 10/6/2010 4:40 PM (GMT 0)
DWAS....my teenage son was very ill with UC. He has his colectomy last September, his J pouch built in January and his takedown the end of February. It has been a long, hard road for him but he has now had a functioning J pouch for over 7 months and he is doing so well. He is healthy in every aspect, has a ton of energy, is living life exactly the way a teenager should and has almost forgotten what life with UC was like. His BMs are formed (not completely liquid like your GI told you) although they are skinnier and smaller, he goes about 6 times a day depending on what he has been eating (and drinking), he has NO pain and NO urgency. For him, this surgery has been a blessing.

Have you been happy with your GI in the past?....you need to be fully and correctly informed as to all your options. A top notch GI and especially colorectal surgeon are so important.
Posted 10/6/2010 5:15 PM (GMT 0)
I think your doctor's statistics are a bit off. about 1-3% of jpouch patients will have chronic pouchitis that is treated with a maintenance dose of antibiotics. about 30-40% of pouchers will have occasional incidents of pouchitis. I've had my jpouch for 9 years and have had one incident. They are finding that many of the chronic pouchitis cases are actually diagnosed with Crohn's. Most chronic pouchitis patients keep their pouch and manage; some revert back to an ostomy.

Sue
Posted 10/7/2010 2:35 AM (GMT 0)
i have an external pouch, and like suebear said, i just empty when i pee. And it also depends on what i eat and how much i eat. But i would say its probably about 4-6 times, and it takes tops 3 minutes.
Posted 11/9/2010 12:06 PM (GMT 0)
thanks all for the responses. I met with a surgeon yesterday and scheduled the date for Dec. 15th. I was told about something called leakage that I might experience at night. Has anyone had this, and did it continue for a while? The surgeon told me I would be out of work for roughly 3-4 months. This will be difficult.

Also, did any of you have to take or are taking Immodium? If so, is this something your continually taking or did you taper off?
Posted 11/9/2010 2:24 PM (GMT 0)
Not everyone experiences leakage, practice kegels after surgery to strengthen the muscle. I was only out of work for 3 weeks, your recovery might be faster but 6 weeks is about average. I took imodium and fiber right after surgery but discontinued it after a month. I only take imodium now if I am doing a multi-day hike, which is about once per year. Some stay on imodium forever, others like me discontinue it. You won't know until later whether you need it or not.

Sue
Posted 11/9/2010 2:47 PM (GMT 0)
is imodium be harmful for your body to be taking it forever? why do you need it for going on multi-day hikes?
Posted 11/9/2010 3:08 PM (GMT 0)
Imodium is perfectly safe and you can take up to 8 pills per day. I take it on long hikes because exercise increases motility. The imodium works to slow motility. My hikes are usually all day 7:30am-5pm, and span 100-200 miles. That's a lot of exercise even for coloned folks!

Sue
Posted 11/9/2010 4:32 PM (GMT 0)
Suebear,

How many times do you have to get up to go at night?

Summerstorm,

Can you sleep on your stomach?
Posted Yesterday 12:03 PM (GMT 0)
I am also curious about CGK
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