Confused - is it just a never ending cycle or is there a point where everything is ok

[MicroByte]

Sorry if this is a basic question, but if a person has crohns, is it a never ending cycle where you are on a drug forever or do you go into remission and get off the drug?

At this point, I'm so confused and feel like everything contradicts everything else. My son seems to go from good to bad and then back over and over. He's in 1.5 mg of azathioprine right now and we thought he was doing better, but seems like he's regressed back to the point when we first learned of his crohns. Is that "normal"?

Food wise, we have tried to cut out greasy foods, nuts, chips and are try ing a modified Specific Carb Diet. He's 6 so it's really tough for him to adjust. I've read so much on what foods to feed and what not to feed and there are things that contradict there. Nuts are supposedly okay for SCD which I don't get when I see other people saying nuts are bad.

I understand that everyone is unique, but is the correct expectation be this way - medication forever with relapses still?

Again, sorry if this is a basic question, but I've thought and thought about the situation and have now come to the point where I just feel - lost. :ybatty:

 

[upsetmom]

As far as i know the answer is yes they do need a maintanence drug to keep things under control..... i could be wrong but thats what we've been told.

Any questions just ask .... there's always someone to answer. There are a lot of knowledgeable people on here.

 

[DustyKat]

Hey MicroByte...:hug:

You are far from alone in being confused and I would hazard to say that much of the confusion, if you are like me, stems from just what you have said...contradictions.

People receive varying treatments and advice depending on who they see, their doctors experience and beliefs, their own personal experiences and their geographical location.

The mainstream way of thinking though, when it comes to medication, is that Crohn's a disease that is characterised by remissions and relapses (flares). Like any disease these remissions and flares vary widely from one person to the next. It is not abnormal to take some time for someone to gain and maintain remission. My son ebbed and flowed for 6 months, from the time of his diagnosis until his surgery.
Treatment is based on getting a person that is flaring into remission and keeping them there for the longest time possible. This can mean a large degree of trial and error at the outset until a treatment that suits that person is happened upon. People often ask on here what remission means. Even here that definition can mean different things to different people but in my own case I say it is an absence of symptoms and normal clinical findings.

Once the disease is brought under control the idea is for maintenance medication to keep it that way. Much like a preventative puffer for Asthma is mean't to stop acute attacks of the disease. Many doctors will keep a person on medication indefinitely and only change it when the need arises. Others though will keep someone on their medication (Imuran for example) for a finite period of time, say two or three years and then cease it. And yet others don't prescribe anything after having surgery. Little wonder you are confused. :confused2:

I think one of the hardest things with this disease, as it is with all diseases of this nature, is that there are no finites. You are forever left in limbo and wondering how long before the next flare rears its ugly head. Both of my children required surgery and both have been in remission and on maintenance medication since their surgeries, 6 years and 18 months respectively.

Diet is just as contradictory, what works for one can be torture for another. It really is that individual and as hard as it is something you need to work out over time, again the old trial error. I personally believe that diet does play role in helping maintain remission and also with symptom control when someone is flaring. Then there is EN (Enteral Nutrition) which is proven to be as effective as Prednisone in inducing remission, particularly in children.

I guess the key points I have learn't over the years is (of course these are my personal observations):

- To keep an open mind about anything and everything. So don't become so entrenched in one way of thinking to the detriment of all others.

- That maintenance medication is important in keeping disease at bay.

- Diet does play a role in keeping the status quo.

- Certain vitamins and minerals are key factors in this disease and their levels should be monitored and supplemented as required.

- There are other supplements that are likely of benefit in maintaining remission and should probably be used daily in an attempt to achieve this. I am still in the process of working my way through this! :lol:

- To keep reading and to keep questioning. Over time you will become more confident in your knowledge and your advocacy.

- Keep your doctors on their toes. If you don't understand something ask them to explain. Question why they have chosen one treatment over another, what their expectations are and what Plan B is should that fail.

- Keep your own records of everything - letters, blood results, imaging, hospital admissions and so on.

- When your child is flaring keep a journal of everything that is occurring. Symptoms, bowel motions, pain, weight, EIM's (Extra Intestinal Manifestations) and food. It will lessen the confusion and help you track trends and feel that you have some measure of control.

My goodness, that is bit rambling! :lol: I hope you can pull something useful from it!

I think Dusty needs a nap! xxx

 

[Patricia56]

Hi Microbyte,

I remember that first couple of years too well. They are very hard on everyone.

It seems that the first couple years are often a roller coaster ride. Finding the right combination of medications, lifestyle changes and diet (if needed) takes time and it's often a trial and error process. Breathe deeply and often and try not to let your little one see you scared.

I will try to answer your question about meds to the best of my ability and as I understand things. I suggest you ask the doctor this same question and see what he says since he is really the one with the experience and knowledge to answer these questions.

Anyway, adults with CD seem to fall into roughly three different types and children appear to fit into these groups too but there's not much out there about that.

1. Severe disease that requires medication for life, at the minimum immune-suppressing meds (prednisone for short term rescue then 6-MP/Imuran/AZA or Methotrexate) but often also needing immune-modulating meds AKA biologics (Remicade, Humira, Cimzia); this group has flares despite meds but increases in dosing often handles flares and a return to previous dosing works once the flare has passed. With meds there are typically very few symptoms and few flares. But not everyone responds to medications. Combining the two types of meds has helped prolong the period that biologics are effective in those who develop resistance.

2. Mild disease that may require nothing more than a 5-ASA medication to bring it under control and some dietary and lifestyle changes to reduce stress and irritants. Occasional flares may be treated with liquid diet and if necessary pred/entocort.

3. Stricturing disease limited to the TI often appears to be treatable with surgery which provides relatively long term remission (up to 10 years in some studies) without meds. The problem is that you don't want to keep cutting out your intestines every 10 years so this group probably also needs medication for life like group 1. Whether this will help avoid repeat surgery is not yet known.

Many children are in group 1 - severe disease. Nearly all the children you will "meet" on an online forum like this will have severe disease because groups like this are tilted toward children who are sicker. If your child was well on ASA then you wouldn't be here right? But you are here because your child does not have mild disease and I don't think it's doing you a favor to pretend otherwise.

The good news is that there is treatment. So try not to get sucked into focusing on the bad news, even though it's all very scary and makes you sad and deserves your attention when you have time. But right now you have to focus on getting your kiddo well and getting him the best medical care you can get and making the best choices you know how to make about that care.

I have a few suggestions for you. If you like these ideas you might want to print out this post so you don't have to remember them. When you're stressed it's hard to remember stuff, don't I know.

1. Get a 2nd opinion. Preferably at a pediatric IBD clinic at a major medical center. I suggest you consider going to Texas Children's Hospital in Houston. It is the closest major center to you and is part of a highly respected network of pediatric IBD programs that work closely together in research and consultations. I am not in any way implying that you are getting bad care now. But it is almost standard for kids like ours to need a 2nd opinion (or more). My son's current ped GI is his 3rd after we fired the first two. Your current doctor should not take it personally that you want a 2nd opinion and should even help to arrange it.

2. If he has not already had these done, ask for a bone age xray and a DXA scan.

3. If your son has not been immunized fully against chicken pox it is too late now but you can ask his pediatrician to run a titer so you can know if he is resistant to chicken pox or not. This is VERY important information for you to have and you should probably ask for the test even if your son has been immunized because sometimes the shots don't "take".

4. This is my personal opinion based on my own experience with my son so take it FWIW. I would stop trying the SCD and other "regular" dietary changes and instead work on doing exclusive enteral nutrition (abbreviated EN or EEN). Even if your GI is not supportive which is unfortunately often still the case here in the US. Why? Because this is the single intervention that YOU can do to get your son into at least partial remission that has been proven around the globe. It is the first treatment of choice for children with CD in Canada, Europe and Japan. Because it usually works. And even if they don't get into full remission they get nutritional support that is vital to their growing body.

5. There are a handful of basic dietary things that we have found helpful but that aren't from any given diet. There are specific reasons for them. Nothing with big seeds like raspberries that might get caught in ulcerations. No popcorn because the hard skin of the corn kernel can damage tender tissues. When flariing, limit milk products (except yogurt) and gluten (grains) because these contain very large complex proteins that are hard for the gut to digest. Eating too much of these may stress the gut further or the proteins will go through undigested.

6. In consultation with your GI, add a probiotic to his diet if you have not already done so.

7.If you have not been doing so already, start tracking his height and weight based on doctor visits. And be picky with the staff - make them take accurate measurements at every regular GI visit. Shoes off for his height. If the number isn't right (i.e. he was 40 inches last time and this time they say he's 39) speak up and make them do it again. If it's still wrong ask if they have calibrated their measurement device lately. Why? Because these are very important ways to tell if he is in remission. If his symptoms are gone but he's not growing for several months or longer - he's not really in remission. Why should you track this? Because you only have one patient to track and doctors have many. You can bring it to their attention in case they miss it. And growth failure is a particular issue for boys with CD.

OK I'm stopping now.

I know you are overwhelmed by it all. The learning curve is steep. But hang in there and you will make it. In a couple of years your son will almost certainly be in remission on some combination of meds and you will be thankful, a little anxious worrying that he could get sick again but mostly you will be living a busy life. I can pretty much guarantee it.

 

[Susan2]

Food wise, we have tried to cut out greasy foods, nuts, chips and are try ing a modified Specific Carb Diet. He's 6 so it's really tough for him to adjust. I've read so much on what foods to feed and what not to feed and there are things that contradict there. Nuts are supposedly okay for SCD which I don't get when I see other people saying nuts are bad.

I understand that everyone is unique, but is the correct expectation be this way - medication forever with relapses still?

Again, sorry if this is a basic question, but I've thought and thought about the situation and have now come to the point where I just feel - lost. :ybatty:

I am not surprised that you feel lost. Crohns is extremely difficult to get your mind around, especially as it seems to vary from person to person.

You also need to read something like the SCD really carefully and in depth, rather than in an abridged version. For example, under peanuts it says "Peanuts in the shell may be tried cautiously after 6 months on the diet if diarrhea is gone" and under almonds "Nuts sold in mixtures are not allowed, as most are roasted with a starch coating. Nuts should only be used as nut flour, in recipes, until diarrhea has subsided."

With other items it says things like: "May be tried if symptom free" or "In other words, do not use if you still have diarrhea and gas."

I'm officially in remission and have not been on any Crohn's related medication for over 12 years, but I still get diarrhea if I eat the wrong things (or drink more than one or two glasses of wine). I can only tolerate the very soft nuts like walnuts or macadamias, although I' m good with peanut butter.

 

[kimmidwife]

I have two friends who are adults with crohns who have been in remission for years and not on medication. It think it depends on the person and the case.

 

[MicroByte]

I'm sorry I didn't respond sooner, I read every word on Friday, but have been so busy this . My wife and I have been running to stores and trying to cook something that our son will eat - utter failure...

I wanted to say thank you for taking all that time to respond, that was a lot of information to provide and was so helpful.

I think this puts back focus on things and it just means to keep trying. Thanks again for all of your help and support.

 

[pcbgirl227]

Hi MicroByte! I have been a diagnosed Crohnie for almost 10 years(underdiagnosed for probably 12 yrs before that). I tried to go medicine free for about 2 1/2 years and it was a no go. I've been told by all my GI's and other Crohnie's even though you may feel better, doesn't mean you can or should go medicine free. The meds are too keep disease at bay so it is certainly worth taken them.

 

[my little penguin]

http://www.nestlenutritionstore.com.../peptamen-junior-complete-elemental-nutrition
http://m.abbottstore.com/abbott/catalog.do?cid=2090262

http://m.abbottstore.com/abbott/catalog.do?cid=2061136

https://www.neocate.com/shop/c-6-nutricia-category.aspx?gclid=CLWOo9XSprMCFQpgMgodcFYAQA


The links above are the best dietary thing you could do for your child IMO .
EN has been proven time and again in children around the world.
You can call the companies and they will send samples or ask your Gi.
You will still need meds but as a mom of an eight year I know by giving him peptamen I am increasing his chances of growing like all the other kids . Ibd kids need a tremendous amount of calories that are easy to digest. Formula helps fill in those gaps.
Scd or any diet for a child where you exclude large groups of foods can been done with the help of nutrionist ( see ccfa article on it) but is potentially setting the stage for growth failure just due to the lack of calories.
No meds is a dangerous game for a child since children can have silent symptoms and the disease tends to be more severe In this age group in generally.
Good luck

 

[TangieC]

Sorry if this is a basic question, but if a person has crohns, is it a never ending cycle where you are on a drug forever or do you go into remission and get off the drug?

At this point, I'm so confused and feel like everything contradicts everything else. My son seems to go from good to bad and then back over and over. He's in 1.5 mg of azathioprine right now and we thought he was doing better, but seems like he's regressed back to the point when we first learned of his crohns. Is that "normal"?

Food wise, we have tried to cut out greasy foods, nuts, chips and are try ing a modified Specific Carb Diet. He's 6 so it's really tough for him to adjust. I've read so much on what foods to feed and what not to feed and there are things that contradict there. Nuts are supposedly okay for SCD which I don't get when I see other people saying nuts are bad.

I understand that everyone is unique, but is the correct expectation be this way - medication forever with relapses still?

Again, sorry if this is a basic question, but I've thought and thought about the situation and have now come to the point where I just feel - lost. :ybatty:

Welcome MicroByte! You asked some great questions, ones I had myself. It seems we got some good answers too

I was told by my little one's GI that he would be on some sort of maintenance medication for life. I, too, found a lot of conflicting info, especially in regards to diet. I agree with what's been said here about cutting out whole food groups. I have no idea what bothers my little one, so I have only cut out corn, popcorn, and seeds (the bread he eats has chopped up pieces and it doesn't seem to bother him.) I also limit his sugar intake (refined sugar, high fructose corn syrup, etc.) Basically we eat whole foods and limit processed food, soy, corn, and anything with canola oil. I also try to buy organic/non-GMO as budget permits. It seems to help and we all feel better.

I think we all feel lost at the start of this journey. Since it does seem to be so specific to each person, I think you just have to go with the flow. This forum will help you a great deal with info and encouragement. Everyone here is WONDERFUL!!!

I'm not trying to hijack your thread, but I have a question about supplementing with liquid nutrition: The GI wouldn't let my little one leave the hospital until he could eat on his own. He said he didn't want to send him home with a tube if he could help it. He's not had any issues with eating or gaining weight since he left the hospital. What do you all think about supplementing with Peptamen Jr. or Ensure? I don't know if I could get him to drink it (it's hard enough to get all his meds in him), but if it would help, I would find a way.

 

[Patricia56]

If his weight is fine and his growth is running parallel to the "normal" growth curve (or close enough) then I would not worry about supplementing him since he is eating solid foods with no problem.

The main time that supplementation is helpful in my experience in when a child is
1) flaring as a way to manage the flare and provide good nutrition during the flare or
2) recovering from a flare that caused significant nutritional deprivation

That said I know that some parents do ongoing supplementation even when their children are "in remission" because they feel it is helpful to their child for various reasons - as a boost to meds, as a way to make sure their child is getting a complete source of nutrition, because they use EN to treat flares and so they just increase/decrease the amount according to whether their child is doing well or not.

There are also some Crohn's kids, especially teens, that have their growth spurt and seem to have a lot of trouble putting on the weight they need to support that growth. Those kids often seem to supplement their diet but not with formula. Not surprisingly they prefer things like instant breakfast, high calorie foods like cream and butter, etc.

 

[Tesscorm]

I think there are a few considerations re supplementing with EN.

1. There are different types of EN formulas - elemental, semi-elemental, polymeric. My understanding is that the elemental, which is what my son has used to induce remission and as a supplement, is very easily digested and absorbed and has anti-inflammatory properties (which can only be good). I am not sure if the other types also have the anti-inflammatory properties. Unfortunately, from what I've read, the elemental formulas are also those that taste 'bad'. I know that MLP (my little penguin) and Kiny have posted more info on the different types (perhaps Patricia as well).

2. In most cases, it seems that for EN to help induce formula, it must be used without other food (the exception to this being imaboveitall 's daughter). I'm not sure if you lose out on the anti-inflammatory benefits when using EN as a supplement with food.

3. In any case, with or without the anti-inflammatory benefits, any type of formula will provide additional nutrition. Is your son underweight? Or is he a picky eater? My son has always been a picky eater, having him ingest the formula as a supplement has definitely alleviated many of my concerns regarding his vitamin/mineral intake.

Hope that helps a bit???

 

[TangieC]

Thanks again Patricia and Tess And I'm sorry I quoted Micro's entire post; that's what happens when you are distracted. :/ Anyway, he's actually bigger, and certainly heavier (not rolypoly, but stout) than most kids his age. He's always been that way (10 pound baby!). I just want to make sure that he stays that way and I don't want him to have any other developmental issues. I sent him to a private preschool last year that my other two attended, and all I heard was how behind he was since he didn't know his colors (he did, just being contrary) and his potty training issues (still not completely), along with the fact that his speech wasn't very clear (improved a lot!). So I guess I'm paranoid about that. He is picky, more so than before he got sick. He used to eat fish, yogurt, etc. I am also confused about probiotics; he was on Culturelle, but I'm holding off since he's on two antibiotics right now. I appreciate the info on the difference in the types of supplements, when and how to use...again, completely clueless about it! This forum is a blessing and a goldmine!

 

[my little penguin]

One other clue about malabsorption in Ibd is clubbing of the toes.
DS has this which we brought to the attention of the ped prior to dx only to be told we were "that. Mom".
Gi of course thought otherwise.
DS will do formula even if its just one a day since his has prebio in it plus some sorta calcium thing to improve calcium absorption. Not to mention the taste he has grown used to the foul taste and if we were to stop then getting him to be compliant with EEN at a lAter age would be impossible without a tube.

Add the fact until a few weeks ago he had not felt good in a year we are using it as insurance.

 

[mac4943]

Hello. I know what that's like. I have Crohn's and it was a vicious cycle when it wasn't under control. The thing is.... until it is COMPLETELY under control, it is a vicious cycle. I would go through periods where I felt better and would be doing better just to go back to bad or sometimes worse.

The thing is.... Crohn's is different for every person. That's what makes it so tricky. Every person needs a different treatment because every person has a different case. What works for me might not work for your son. Sometimes it takes a lot of figuring out before they can find what works best.

My understanding is that they do not like to completely take people off of medications because 1) once you are in remission the drugs help to prevent flares and 2) your body can build up antibodies to them.

I am in remission currently. It took a long time, but I got there. I still have to take my medication, but I truly believe that it keeps me from having flares. I am not sure how old your son is, but what really worked for me were anti anxiety medications in addition to Crohn's meds.

 

[Patricia56]

There are different types of EN formulas - elemental, semi-elemental, polymeric.

While there are different formulations the research has not found any differences in effectiveness in inducing remission. They certainly do taste differently and by far the worst ever are the totally elemental ones. The worst one Badger used by tube was Vivonex. Smelled like vomit. Eeuw.

My understanding is that the elemental, which is what my son has used to induce remission and as a supplement, is very easily digested and absorbed and has anti-inflammatory properties

No one really knows why doing exclusive enteral nutrition works. Lots of theories but no one knows for sure. Or why it works for some kids and not for others.

Apparently all these formulas are easily digested - or so close to being the same as to make little if any difference. Thus the results that didn't show any differences between the results by each formula.

As I understand it, these formulas are thought to be anti-inflammatory for two reasons. First because improved nutrition reduces inflammation. (Conversely malnutrition causes inflammation.) Also because the gut doesn't have to work hard to digest the formula. Who wouldn't get better if they didn't have to work hard?? :rosette1:

In most cases, it seems that for EN to help induce formula, it must be used without other food

Yes, the research has found that remission is only reliably induced by exclusive enteral nutrition. No regular food.

I'm not sure if you lose out on the anti-inflammatory benefits when using EN as a supplement with food.

Just my opinion but I think the reason supplemental EN can be helpful is because good nutrition reduces inflammation in general.

My son has always been a picky eater, having him ingest the formula as a supplement has definitely alleviated many of my concerns regarding his vitamin/mineral intake.

Yep, picky eaters should definitely be made to drink formula...:arghmatey_ani:

 

[my little penguin]

Apparently all these formulas are easily digested - or so close to being the same as to make little if any difference. Thus the results that didn't show any differences between the results by each formula.

Not all of the formulas are easily digested. There was no statistical difference seen between polymeric and elemental formula in terms of remission rate but just like all other ibd "meds" what one child needs may be different than another. One has whole intact proteins ( polymeric). The whole intact proteins requires much more healthy small intestine tissue to be used and requires more work since the body has to break down these proteins. This is less work than whole food but more work than elemental formula.:thumleft:

I would need to find the paper but amino acid based formula only uses the first 23 inches of the small intestine with very little waste by product ( hence the constipation effect in some kids). These are typically used by patients with short ( gut) bowel syndrome for this reason. It is also routinely used by kids with EGID disorders since they tend to have an mixed IgE response to intake proteins.

 

[Patricia56]

Thanks for the additional technical information MLP. Much more specific than mine.