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Ulcerative Colitis
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Posted 10/16/2012 1:43 AM (GMT 0)
My son was diagnosed in January with moderate to sev ulcerative colitis, he was very ill and missed 3 weeks of school, his colonoscopy showed he was ulcerated from end to end, it was bad.  He was put on colozal 9 pills 3x per day, we continued a multivitamin, we added culterelle/probiotic and he was on acid reducers 2x per day.  He got better and then flared again in april, he was put on mega steroids was weaned off and was fine for a month and then he flared again, same drill more heavy duty steroids, same med, the side effects of the steroid have not been good and I worry the detriment the steriods are having on him. In August he flared again, was put on more steroids and 2 days after he was weaned off and stopped taking the steroid he started bleeding.  We like our Dr. as he has been really good, but now he is throwing around 6MP for my son to take, he mentioned Asipro but tells us it is the same med he is on but its delivered a different way and it probably won't work.  My husband and I want to try it because if you read the side effects of 6MP it is very scary and he is so young!  I have been wracking my brain, asking different folks questions and we are getting a second opinion next week, so my question is has anyone been on colozal and changed to Asipro and it worked? Are there any teens out there on 6MP (this med scares me) and how are they doing on it....there is so little pediatric info on 6MP we want to get him into remission but at what other horrible risks....???  Please any info is greatly appreciated...thank you all for listening....
Posted 10/16/2012 1:57 AM (GMT 0)
Hi MyTeen, certaintly other members can help you out with what medicines will help your son, but I also wanted to give you some insight on some natural things that may be of help to you and your son.

Ulcerative colitis may not have a cure, but many people have experienced lesser symptoms when modifying diet and adding supplements.

Two diets we refer to on this forum heavily are The SCD (specific carbohydrate diet) and the Paleo diet. You can search the HealingWell forum and the internet for these.

The best advice I can give you from my own grueling experience last year, is to have your son focus on an anti-inflammatory diet.

Extra Virgin (cold press) olive oil, Omega 3 fatty fish (mackrel, salmon, red herring, sardines), walnuts, flax seeds, chia seeds.

Also sugar is the most inflammatory food, so if your son can do without, and maybe low fiber as well. Fiber can act as a scrub brush among the inflamed intestines.

Supplements:

Probiotics - beneficial for regulating good to bad gut bacteria populations. Antibiotics do the opposite right? Killing off ALL bacteria (good and bad) so its important to supplement to get the bacteria population up again. VSL#3 is just one Probiotic that is designed specifically for those with Ulcerative Colitis or Crohns disease.

Herbs like Turmeric, boswellia and devils claw are highly anti-inflammatory and can be taken in powders, capsules, pills, with food, etc.

--

There are many helpful members on the forums here, best of luck to you and your son!
Posted 10/16/2012 2:07 AM (GMT 0)
Thank you so very much for the info, I have been researching foods and we know what NOT to eat when he flares but I have come across some interesting info, what has me perplexed is our Dr told us that diet would not help manage the disease, meaning since the stool is already stool when it reaches the lg intestine unless you have Crohn's it does not make a difference, but I am really beginning to wonder, I have been getting him to eat more yogurt and even 2 bananas or smoothie per day, he is not lactose intolerant and dairy does not bother him, we just avoid when he has diareah which knock on wood with this flare we are ok, but there is bleeding and tissue, I did not know that about fiber either and we have been avoiding that for a while, figures you give your kids healthy whole fiber good foods and then nope now you eat the stuff they tell you not to eat...I am going to research the diet you mention, thank you so very much.
Posted 10/16/2012 2:32 AM (GMT 0)
You may want to look at your doctor through different eyes. Some doctors just radiate experience and knowledge and good bedside manner and are just really likable. That doesn't always translate into being a good doctor. That happened to me with my first autoimmune disease, which wasn't UC. I trusted the doctor and thought he was God and I was just so impressed but as time went on and more and more things just didn't seem to make sense, I realized that as much as I liked him, he really didn't know much of anything. My first wife was a nurse. One doctor's office she worked at was this very likable old family doctor who had the utmost trust of just about every one of his patients. She was floored at what a horrible doctor he really was with very unsterile techniques.

I hope your doctor didn't give the impression that prednisone was a cure because it is not. It weakens the immune system long enough for your colon to heal but does not stop the underlying problem- a messed up immune system. As soon as you are tapered to a lower dose or completely off, your body's immune system will resume the attack all over again. The amount of time till relapse depends on how well your colon is healed. You need to always have another treatment going at the same time (that works), so that when your pred is tapered to a lower dose or eliminated, the other treatment can keep you in remission. Diet doesn't work in some but does in others so it is not doing you justice to say that diet plays no role. It doesn't have much affect on me but there are those where following a strict diet can keep you in remission all by itself.
Posted 10/16/2012 2:56 AM (GMT 0)
i second and third what stereo and gary said - can't think of a thing to add -

other than, sorry your son and you have to deal with this -
Posted 10/16/2012 3:13 AM (GMT 0)
Please consult with your doctor but it is my understanding that the FDA issued a warning indicating that the possible side effects of 6MP are more serious in teens than in adults.

I am not well versed about meds but rectal meds, especially mesalamine enemas, have an excellent reputation on this forum for being very effective. If colazal was at least partially effective then rectal meds may be even more so.

Then there are alternatives such as diet modification. The SCD was already mentioned and others by more simple measures such as avoiding gluten. Someone could help you with more information about the elemental diet which has been effective in some cases, especially for juveniles.

And you might find some useful information if you search this forum for an alternative called LDN.
Posted 10/16/2012 11:45 AM (GMT 0)
Hi there,

my son is 14 and has pan colitis. The worry is all consuming.

This forum has helped us considerably.

We were also told initialy that diet modification would not make any difference, in our case that was wrong.

We avoid things like red meat, pork, spices, dairy, sugars, junk food (obviously), fruit is only peaches, pealed apples and bananas.

Potato skins, corn, peas, broccoli and brussels are also out for us.

Although he never tested for gluten sensitivity we avoid gluten as it is  difficult to digest.

The colon need to rest, so give it a break from anything that could be difficult to digest.

We supplement with a multi vit, Vit D, Omega 3, garlic, L Glutamine, VSL 3 probiotics.

He takes 6 x 500mg Pentasa per day and also a Salofalk foam enema in the evening.

Others have had success with slippery elm.

Some people have had success using LDN.

And the next thing for us to introduce is psylium "seed" powder.

One thing that Qunicy on here keeps drumming home is, you must treat it from both ends and that is crucial.

There is a wealth of knowledge on here, it does help, it really does, we have hope again in our house and we are now approaching a year since his last flare.

Steve ( I also have colitis)

 

Posted 10/16/2012 12:01 PM (GMT 0)
Boy am I glad I stumbled across this site!  Thanks to all of you for all your helpful information, I sincerely appreciate it and look forward to more info and hoping to find the combination of things that work that is going to help my son.  Thank you all again.
Posted 10/16/2012 12:39 PM (GMT 0)
Here is my take on this. YOur son is young and if you start 6-mp, and then move on to Remicade or Humira, your cancer risk increases. It is also my understanding that 6-mp is not as effective as Remicade or Humira. You have to weigh quality of life vs. POSSIBLE side effects. He may be just fine on other meds, but there is a possibility that he will have issues. You really need to let him have some control over his disease, he needs to be involved in the decision making. With that all said, there is a new drug in development that shows real promise....I just don't know when it will be on the market. Excuse the spelling....veluzimab?? If you can buy him some time, this med would have much less side effects. It is hard, but weigh what his life is like now and let him be involved in the decisions. Good luck and I hope he finds relief
Posted 10/16/2012 1:05 PM (GMT 0)
Sorry your son has this horrible disease. I would def try the Rowasa enemas before going to 6mp. And if at some point his symptoms subside or stop altogether then instead of nightly using the enemas he can taper down slowly. Every other night and then eventually 2-3 times a week. If symptoms return back up to nightly.
Posted 10/16/2012 1:19 PM (GMT 0)
Lemonhead, thank you for your info. My son is involved for sure, he has been on colazol and its not working so now we are trying Apriso, even though the DR said 'it won't work' and is pushing 6MP my son said 'well the Dr. said the colozal would work and its not so let's try it' so we will see. I have not however shared all the scary side effects of the 6mp with him as not too long ago we lost my Mom to cancer but we are going for another opinion on Monday and I hope to get some additional answers. I will also ask about the vezulimab as well - thank you.

Thanks so much to all of you for all your helpful advice. Sherbear, thanks for the info about the enemas, do you know if they work if he is end to end ulcerated? I was under the impression again from my Dr. that only if the disease is near the end/rectum enemas and suppositories will be helpful? Do you know? Thank you all again.
Posted 10/16/2012 1:45 PM (GMT 0)
Honestly, I think you son should use either Asacol or Lialda instead of Apriso.  All three have the same active ingredient (mesalamine), but the max daily dose of Apriso is only 1.5 g vs. 4.8 g for Asacol and Lialda.  Apriso supposedly dissolves, and therefore treats, more effectively, but that's still a BIG difference in max daily dose.  I am doing well on Apriso, but I was in remission when I switched and if/when I flare again, will definitely talk to my doc about switching to Asacol or Lialda.

As for the mesalamine enemas, I STRONGLY recommed he use them nightly to try treating the flare, and if he gains remission, he should STAY ON THEM at least twice weekly to maintain remission.  I've been in remission almost 3.5 years now using oral + rectal mesalamine and probiotics. 

What his doc is telling you about enemas "not working" for pancolitis (inflammation throughout the colon) is a bunch of hooey.  I also had pancolitis and they worked very well for me.  No, they won't treat the entire colon, and no, they should not be used alone (without oral meds) in someone who has pancolitis.  However, they are extremely effective at treating the colon and rectum, which oral meds don't often treat effectively. 

Below is a link to a recent research article showing that they DO help:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774619/pdf/gut05400960.pdf

I suggest you print it out and take it to your son's next appointment.  If you for some reason cannot open this file (I work at a university with a medical school, so can access nearly all medical journals through the library), please send me an email (address is in my signature) and I will send it to you as an attachment. 

Posted 10/16/2012 2:08 PM (GMT 0)
Sorry, ask about this: Vedolizumab

Here is a link:
http://www.internalmedicinenews.com/news/conference-news/digestive-disease-week-2012/single-article/vedolizumab-scores-on-safety-efficacy-for-ulcerative-colitis/dc7ee9857e7f6f4b9a47aac0dfe39f36.html

http://www.reuters.com/article/2012/05/22/us-takeda-colitis-idUSBRE84L0VR20120522
Posted 10/16/2012 2:10 PM (GMT 0)
Also, the rectal meds: your doc may say they won't work because your son has pancolitis and the rectal meds won't treat the entire area. But I take them every night and they do work well for me.
Posted 10/16/2012 3:00 PM (GMT 0)

as someone with pancolitis (although mine skipped throughout my colon, but was end to end)  I had luck with Lialda in clearing up my colon from the top to the sigmoid.  I also used rowasa nightly for a long time.  this reaches up to the sigmoid.  By using rowasa i cleared up the inflammation from my rectum to my sigmoid.

so basically all the inflammation in my colon left was a stubborn 4 inch patch in my sigmoid.  It is my belief that this stupid stubborn spot was the part that the lialda and rowasa didnt reach (my opinion, )  i did end up on imuran and it helped with remission.  anytime i stopped the rowasa i would get worse, so i kept at it becasue it does help. 

anyway, i do agree with the "treat from both ends" theory.  the rowasa did a beutiful job in helping to heal the part it could reach.  i use them now as a maintenece med now.

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