Issues with delzicol - mesalamine

[crohn'smakesmeangry]

My son is 14 and last year he was diagnosed with Crohns. He has been taking Delzicol since March and has done well on it--absolutely no issues at all. A couple of months ago he started missing some of his doses. It is difficult with the timing because his school gets out at 4:00 and he was sometimes missing that second dose. As a mother I feel awful because I always ask did you take your medicine to which he replies yes--I didn't ask did you take all of it and I didn't realize that the prescription was late on a refill.

Over the holidays we spend a couple of weeks away from home and he ends up eating alot of things he doesn't normally have, encounters alot of animals, gets less sleep, etc. We first noticed the problem after vacation last year and this year it was the same thing but then we found out he was about a month behind on his pills.

My question is about Delzicol or mesalamine in general and missing doses. He first started taking it after he had to take an antibiotic for strep throat which caused horrible amounts of blood and diarrhea. Within the day of taking it things started improving and within about 3 days everything was back to normal. This time he has been consistently taking the correct amount for the past 2 weeks and it seems like things are getting worse. I read some things about mesalamine intolerance and I'm wondering if that could be it? can medicines just stop working for no reason? does not taking it as prescribed for a period of time cause an issue? Can a different mesalamine med help? The Dr gave us samples of Lialda because it might be cheaper and it doesn't have to be taken 3x a day. He saw his Dr last week and he said give it about 10 days (because he looked so good and all of his bloodwork had been perfect in Dec) but if things deteriorate call him for a new plan of action. Any experiences with Delzicol , mesalalmine would be helpful. I am worried because he is so young and I understand that the medicine he takes is one of the weakest ones to take and I was so grateful he was doing so well --now I am worried that he will have to step up in the strength of medication he takes or even maybe have to do steroids.

 

[CrohnsKidMom]

Welcome to the forum! I'm sorry, I don't have any experiences with these meds. My son was started on prednisone at dx and is now on Methotrexate for maintenance. I'm sure others will be along soon with great advice. It certainly is an emotional roller coaster ride, isn't it? I hope you get some answers soon and things start looking up for your son.

 

[Jmrogers4]

Sorry I don't have any experience with Delzicol. Totally get the 14 year old and vacation/holiday time and it's like their brain has leaked out of their head with what they forget. We use a pill box that has a weeks worth of medicine it has a little box for Morning/noon/Evening for each day of the week. I fill Jack's up on Sunday that way it is easy for me to do a quick double check that he is taking it and also since I fill it up I know when I fill up that last week it is time get a refill (although I hand him the bottle and have him call the refill in right then)

 

[crohn'smakesmeangry]

Thank you both the pill box is a good idea and after we found out he had been missing doses I thought I should get one. Delzicol replaced Azacol- some people say it is Azacol just inside a capsule. At first the Dr wanted to give him Pentasa - they're all mesalamines and our Dr said it was one of the mildest forms of medications and what they start kids out on. I'm just feeling very helpless right now because this medicine that worked great for about 8 months all of a sudden isn't doing anything helpful! He is a bit of an odd case. His original symptom was just bad diarrhea with occasional blood that started out of nowhere. After they did a colonoscopy (after blood-work, etc didn't find a cause) they said it appears that he has Crohn's. The tests for inflammation were off the charts for him but after the colonoscopy he had perfect stool with an occasional cramp. We just watched his diet and eliminated some foods and he seemed fine. The Dr said that some people's bodies just don't respond to the inflammation as much which could be good and bad- he had tons of inflammation but no symptoms, so it appeared that things were getting better , but they weren't. The antibiotic blew it all up and so we tried the Delzicol and he's been on it since March. Maybe he was having inflammation like before but without showing symptoms and the vacation combined with missing that many pills threw him into a flare. On the medication he went from 90lbs to 106lbs and grew almost 3 inches! so I know it was helping somehow. This roller coaster ride would be better with an emergency exit ugh! I always looked on this site when looking up info and it was always very helpful- I'm glad I signed up because I already feel like people can relate--and my 14 yr old is Jack too!

 

[Jmrogers4]

We had a similar experience with antibiotic over the summer. Jack was in remission and got a skin infection which he took antibiotics for which sent him downhill and his meds he was on just wasn't able to get everything back under control.
Yes the mesalamines are very mild and it certainly sounds like they were doing some good for him, they have never worked well for us unfortunately.
So will they do labs again in 10 days to check for inflammation? If it is higher then you will have to make some other choices but if it is trending down then...
That is one of the really sucky things about this disease is that it can just be simmering away without really any outward sign. That is something we deal with as Jack's blood labs don't reflect inflammation for him only fecal calprotectin so far have shown inflammation and even those are not very high but we have started remicade 2 weeks ago and it has been a complete turn around and nobody would have said he was bad off before.

 

[araceli]

My daughter was on asacol for about a year. It did stop working for her.
My son takes one of his meds 3 times a day, so he goes to the school's nurse to get the one he used to forget to take.

 

[araceli]

Jmrogers4, You got me thinking. My daughter was feeling fine, (still do, NO symptoms) but blood tests show elevated SED rate. She had a throat infection and was given antibiotics, also antibiotics at dentist office. mmmmm

 

[kimmidwife]

Hi welcome to the forum! Sorry you had to be here but glad you are. There are a lot of studies showing that mesalimine type drugs are not strong enough to keep Crohn's under control. They seem to work better after surgery. They work really well for ulcerative colitis but not as well for Crohn's. It seems like a lot of doctors who are not at big university medical centers are still prescribing those as first line treatment. I recommend going over to the treatment section and reading about some of the medications. Unfortunatly we are in a similar boat living down here in Florida. We have encountered a lot of not very good doctors. Here are a few articles about it:
http://www.ncbi.nlm.nih.gov/pubmed/9352848
http://www.healthline.com/health/crohns-disease/aminosalicylates

 

[Mehita]

Ditto what Kim said^^^. Mesalamine is very mild. I think there is a statistic out there that it only works for 20% of Crohn's patients? And it is possible for any drug to simple stop working.

My son was on Pentasa for 15 months. We thought it was working well enough... but in reality it wasn't. His GI bumped him up to Azathioprine (same as Imuran and 6MP) for 6 months only to find out that too was like a sugar pill for him. Now he's on Remicade and finally doing well. The drugs can be scary until you start seeing them working for your child. Then you'll wish you'd started sooner!

I hope things don't get too out of control for him. Keep us posted!

 

[crohn'smakesmeangry]

Kimmidwife-I'm about 30-40 min from Boca who is your doctor? When this all started I was hoping to find a big university hospital - I read about Miami - it would be a haul to get there. There are not many pediatric GIs around us. I wasn't too thrilled with his Dr at first but after the medicine worked and my son was doing so well gaining weight and not having issues I was hoping he would be fine. I don't feel like his Dr is on the cutting edge of these issues. We had originally asked for a nutritionist, even saying that we understand food doesn't cause this, but he was 13 at the time and has dropped weight and he is just at that point where he is going to start growing into a man and he probably is going to have trouble with that if he can't gain weight! We wanted some help. He was dismissive about it and then a couple of months later after it was clear the med was working he said our son needs to gain weight and could give us a nutritionist ????! I have not done alot of research on the types of medicines and I am going to look at that. Thank you.

At Jmrogers4- I'm not sure what they are going to do next. I talked to the on call Dr last night and he said if things don't get better they will give him prednisone- I'm not sure what after that. It doesn't seem like Delzcol is working anymore. I found out that a friend of mine has Crohn's - she was diagnosed in her early 20's and she has only taken Azacol until it was discontinued and it always worked for her. I don't know what she switched to but the Delzicol was a $600 copay/month for her so she had to try something else.

And yes Mehita, the drugs scare me. I think about him having to take something for the rest of his life , drugs no longer working, having to take strong medications- it makes me cry. I had looked into the SCD diet and had incorporated some of the ideas into his diet- which completely went out the window on our trip I know some people swear by it and others say it doesn't work or make sense. I worry it would be hard for him to get enough calories or that as a teenager find enough things he actually wants to eat! but I am considering giving it a shot for a couple of months along with whatever medication they figure out for him. Over the weekend he did 24 hours of a liquid diet and then he just had fish, applesauce , homemade broth and for a couple of days things were formed and no blood. We added in bread, crackers and it went down hill again. It could just be a coincidence. He also had cantaloupe so that could have been a problem too. Thanks for all of your responses - it's good to talk with people who understand

 

[Jmrogers4]

Would he consider a supplemental drink? My son has pediasure Peptide, I know a couple of others do pepatem jr. It works wonders for weight.
If not even protein powder mixed into a smoothie, you can get unflavored. We struggle with the weight gain/growth issue. It is hard when they are 14 and all their friends are growing and changing and they just can't gain weight.
We tried SCD it was too hard for us, he just wouldn't eat enough of what was "legal" to keep on weight let alone gain but I know some have had some promise with it especially in conjunction with other meds

 

[Mehita]

Might he be gluten intolerant? Or have Celiac disease? Just asking since things went downhill after introducing bread and crackers.

 

[crohn'smakesmeangry]

Mehita- they tested for Celiac and it was negative but intolerant is a possibility. After the colonoscopy - which I feel cleaned out his system and gave him a fresh start- we did a gluten free diet and he had perfect stool and no blood for a couple of months until the antibiotic. The calprotectin test was still high though. So it seemed to be beneficial but didn't do anything for the inflammation. Also on my own I took him for allergy testing which he had when he was little because he had eczema and childhood asthma. In case I wanted to try any diet adjustments I wanted to make sure he wasn't allergic. The only thing that came back was almonds and walnuts- which he hates anyway! Jm- this past week we got him some Ensure which he loved at first but yesterday found to be to ick to choke down lol! but he's a trooper so he did it in increments. if he is eating a full diet , I think he would be fine with it- just right now he's not eating too much with the issue. I've never heard of the Pediasure peptide- can I get that at the store or do I have to order it? In the brief history we have with him and this problem I feel like sugar is his enemy and the drinks have alot of sugar. When it originally started chocolate was one of the things that he ate and it gave him a stomach cramp- and at the holidays that's one of the things that he gets too much of! I got a Nutribullet the other day and it works awesome to blend everything to liquid-I'm just not sure what to blend right now that won't be irritating because of the diarrhea. He asked me to blend a cheeseburger last week which I think it would be capable of - just not sure how good that would taste!

 

[Sascot]

Hi and welcome. Sorry to hear your son is going downhill again. We have no experience with those meds - my son is on 6mp and doing okay. Nutrition is a very difficult subject when talking to alot of docs. Ours is also of the opinion it doesn't make any difference, so we didn't really get much advice apart from avoiding too spicy foods or too much fibre.
If the liquid diet is helping your son, it might be worth enquiring about the EN (enteral nutrition). My son did 8 weeks of Modulen (via the NG tube as it tasted disgusting) straight after diagnosis and it helped heal his stomach. Maybe it would be enough to help your son get back to feeling good without having to change meds.

 

[Mehita]

Another brand you can try for drinks that is available in stores is Orgain.

www.orgain.com

It's organic and a tad "healthier" than Ensure and Boost... depending on what you consider healthy. Only 12g of sugar compared to 22g in Ensure.

 

[Jmrogers4]

Yes sugar can be a problem, Jack doesn't really like sweets, hates chocolate. The peptide you can get online and yes it does have a lot of sugar but the proteins/ingredients are further broken down from regular Ensure/Boost making it easier to digest. it can also help with inflammation more if you are doing it exclusively. The pediasure from the store infant/toddler section is more like regular Ensure/Boost but Jack found it easier to tolerate and runs more in a similar price range to Ensure/Boost. Peptide/Pepatem Jr. are expensive.

 

[kimmidwife]

Mehita,
Do you know how the organic tastes? They recommend it for people with gastroparesis but if it tastes bad my daughter won't drink it.

 

[Mehita]

I actually like it and wish I could convince my kids to switch over. I've only had the chocolate and it tastes kind of like slightly watered down chocolate milk. I think Boost and Ensure taste kind of thick, but Orgain isn't.

My boys say they don't like it, but quite honestly I think it's because there is so much less sugar, KWIM?

We do everything here. One likes chocolate Ensure only, the other vanilla Boost only and I drink the Orgain. The only bummer is that you can get Boost and Ensure in the Plus version with extra calories, but Orgain doesn't come in a plus version.

Ensure and Boost also make pudding cups. They're pretty expensive though on Amazon.

We did blend a cheeseburger once! To get it liquidy enough tho we had to add a lot of milk. In the end it tasted like cheese soup. It wasn't horrible, but it wasn't spectacular either. We also did a lot of blended Mac & Cheese. Much easier to blend than a cheeseburger!

 

[crohn'smakesmeangry]

@Sascot, it was so irritating when our Dr blew diet off at first. Everything I've ever looked up about Crohn's talks about the importance of nutrition ---and they are growing and they need calories! For a few months I kept a food diary and counted calories to make sure he was getting enough.

I am going to check out these pepetide supplements and order some. Even if they don't taste good I could blend them in a smoothie

I swictched him to the Lialda - even though it's the same med we figured it couldn't hurt. The Dr didn't call me back until the next day at 5 pm! I was just giving him broth, applesauce, fish , and the SCD cheesecake- cheesecake is a very liberal term for that- it was ok tasting more like sweetened cottage cheese. He is very annoyed at the broth that I made so I told him we will just do 5 tbsp every few hours. I've read alot of articles about the beneficial nutrition of homemade broth for anyone- so I told him to suck it up because it is healing lol!

He hasn't had any cramps and he hasn't gone since yesterday and there was no blood that time so I feel like he is moving in the right direction! I asked the Dr if they checked for inflammation in his labs in Dec -they did - and it was normal - so I feel like the medicine was doing it's job up until a few weeks ago. He also said sometimes people just have a flare and that's just how it is. He also said he will be on call for us this weekend in case things aren't getting better which was reassuring because I hate talking to on call people that don't know anything about our son!

 

[Jmrogers4]

They don't taste good but I think they quickly get used to the taste. It took Jack a couple hours at first to get one down. There was a whole episode of taking a drink over the sink, gagging and drinking water to wash the taste out of his mouth. It is hilarious now, not so much then but a couple of tips to help... Make sure they are cold, glass/cup with a lid and a straw so that can't smell it.
We did mix with milkshake and it did help he was able to drink that without gagging at the taste and I figured more calories the better. He had to drink 8 a day so that was not an option at school so he forced himself to drink them and got used to the taste in a couple of days. He still doesn't like them but will still drink 1-2 a day. I know when he is not feeling well as he will choose a peptide over eating food.

 

[crohnsinct]

I am glad he is feeling better and hope it continues. My daughter wasn't improving on Remicade and the doc wanted to add Mtx. We chose an 8 week course of EEN using Boost and Ensure and that got her to remission where she has stayed ever since (about a year and a half).

Our doc also poo poo'd (pun totally intended) diet but has a nutritionist on staff. She more handlers making sure you are eating enough calories, calcium and vit d. I have played with my daughter's diet since dx and find that a vegetarian diet works FOR HER the best. I understand diet doesn't cure Crohns but I felt I had to find the best diet for her for overall health. Our doc is now a believer. He says there is no scientific evidence that her diet should be having this affect (I DON'T AGREE) but whatever we are doing to keep doing it because she is his healthiest patient. A while back we eased up and at her last appointment he asked about her diet. We told him we eased up and he said he could tell and asked us to get back on track.

I think diet matters! If only for general health and for comfort.

Good Luck!

 

[kiny]

Modulen shouldn't taste bad, if it tastes bad there is something wrong with it. It should taste like sugared milk, it's plain and boring, but doesn't have much of a taste, a slight sugary milky taste.

EN should taste sweet, the easiest way for us to get calories is from glucose, it's what every carbohydrate becomes once it's absorbed, blood glucose. The EN use glucose syrup so we don't need to digest it anymore. And since glucose can be taken up into blood in a large part of the intestine very easily, it's easy to gain weight on it. It should taste sweet. What other people define as unhealthy, is needed for crohn's disease patients. The media claims sugar is bad, well, sugar is given in hospitals through glucose IV. Protein is bad for the kidneys and fat is bad for the arteries. I guess their solution is not eating at all.

I'm not a fan of the SCD diet, but the basic idea is to avoid all polysaccharides. They're chains of monosaccharides, sugars. The writer has long since passed away, it was written long ago. It's very different from EN, since EN uses special types of fat known as medium chain triglycerides, it uses hydrolised and microfiltered forms of protein, and her idea that all polysaccharides are bad is silly at times in her book I feel, we use polysaccharides ourselves to store energy like glycogen storage. Lots of people are convinced it helps, I'm not, I tried it, didn't help at all. I am really sceptical of that diet. It is also easy to lose weight on it if you follow it rigorously, because the majority of your calories should be from carbs, for normal people and crohn's disease people. The SCD tells you to avoid a huge group of calories, protein are not a good way to get calories, fat and carbs are your main energy sources, and fat has much lower bioavailability. You will easily drop weight if you don't eat enough simple sugars with SCD, and if you're doing that, why not just use EN which has much higher bioavailability. SCD is a diet that tries to sell you a book, and it's based on an idea of a person from decades ago, I think crohn's disease is a bit more complex than just avoid polysaccharides.

Protein powder is nice if you work out, but if you do not work out, it will not make you gain much weight. Fat and sugar are energy sources, while protein is an energy source, and while it can be turned into fat, it doesn't happen easily, your body wasted a lot of energy trying to turn it into fat, a lot of protein is excreted, and it's not that healthy for the kidneys as most people say, because it needs to filter out the nitrogen. Really high protein diets are unhealthy for the kidneys, most medical diets and EN, use a 50-25-25 or 60-20-20 split of carbs-fat-protein, you can see on the papers that 028 and modulen provide that a split like that is used. 028 uses a split that uses slightly more carbs. If you lower the amount of carbs, like many popular non-medical diets are suggesting you should do nowadays, you increase the amount of protein that needs to be filtered, increase work on the kidneys, and you make the protein less usable, since the body needs carbs for protein synthesis. Protein powder is nice if you work out, it will build weight in the form of muscle, but it will not put weight onto children or people who don't work out, at least not like carbs or fat can do.

I don't believe in treating crohn's disease with diet. It treats the nutritional deficiencies, it doesn't treat the disease. It seems like a great solution, but very few evidence shows it is a solution, studies are small, inconclusive, even the EN studies, I have many questions about them, unreliable CDAI scores, not colonoscopies, no Rutgeerts score, no follow up. Hmm. I use EN to make sure I keep my weight up.

 

[kiny]

EN from nestle and nutricia is not really the same as fortimel or boost I feel. Nestle and Nutricia use medium chain triglycerides because it's known it's more bioavailable than long chain, microfiltered or hydrolised whey, they use different types of magnesium, the use more micronutrients. You can survive on 028 and modulen for months, it's clinical grade EN, boost and fortimel are additions to a meal, cheap calories.

Not sure what to think when someone says if EN has or has not been proven to help. They don't know, there are a few theories, that is all for now. Theories why EN would actually treat the disease and not just be a nutritional supplement..just all theories..no one has shown that is what happens:

-EN is low in microparticles, some microparticles can cause inflammation
-it changes the microflora, this already assumes that the microflora is a type of antigen and resonsible for inflammation, no one know, I doubt strongly
-it helps release CEACAM6 molecules which makes AIEC pathogen bind to it, a sort of decoy for bacteria

Lots of small studies, lots of CDAI and PCDAI scores that are inconclusive and unreliable. EN is good for calories, if it helps crohn's disease, no one know really. Would require much larger studies and Rutgeerts score instead of CDAI.

 

[Jmrogers4]

Kiny you're awesome once again with the research, thank you. I didn't mean that it tastes bad in the it's gone bad in the traditional since. Just he didn't like the taste it was too sweet and left almost a gritty sweetness in your throat. He only likes the strawberry. I've tasted them and I didn't think they were awful but they weren't like oh this is yummy I'm going to have some more.

 

[Jake's_mom♡]

Hi,

I am new to this forum. I was inspired to register today after reading the post by crohn'smakesmeangry. My son was diagnosed with crohn's last year , 3 months before he turned 14. They started him off on methotrexate inj once a week and asacol, which was chaned to delzicol when it was discontinued. Have had the same issue with my son not taking delzicol as presribed. Did the pill box , he would misplace it , or I would notice the pills weren't taken. He would tell me he took them from the bottle instead. I would also hand him his pills , only to find them later on the coffee table or floor. Now I hand them to him and witness him taking them. He was doing well @ his check up this February. He looked and felt good and his inflammation level was zero. He was on methotrexate inj , had him down to 6mls once a week. Also taking delzicol as prescribed. We were also introducing some of the scd diet and he was eating lots of organic veggies and fruit. No bread , sugar , or processed foods. His doc was amazed that he was doing so well on minimum meds. So she decided to change his methotrexate inj to pills. He just had a follow up 2 weeks ago. Since his appointment in February he had started not taking his delzicol and was not eating a good diet. So at the recent follow up he had lost weight did not look or feel good , inflammation level was up. His doc wanted to do a colonoscopy and egd that week. I asked her to give us time time to get back on track. To get his weight up and inflammation level down. Sorry I'm going on and on. Just feel really lost , almost feel consumed with worry and stress. So she gave us 30 days to get him back on track. She told us to do whatever we were doing in February because it was working. Which was taking meds as prescribed and diet. But also he was on the methotrexate inj instead of the pills. I'm guessing it was a combo of not taking the delzicol properly, not eating well , and possibly the change to methotrexate pills. When he was first diagnosed she said the inj was more effective. Most of my son's disease is in his terminal ileum , and from what I've read the pill form is not absorbed as well because of inflammation in that area. I just want him to be doing well again. I'm afraid if he isn't better atthe end of the 30 days , his doc will insist he go on 6 mp. She has been pushing for him to go this med from day one. I have strongly resisted this option for more son given the fact there is an increased risk for a fatal liver cancer among teenaged boys. Anyways I do hope both our boys are better soon. Take care.