Crohn's Disease: advice?

Parents Forum
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<p>I think that’s especially noticeable here in New York City. Every single time I’ve ever been hospitalized on the GI floor or section, whether at University Hospital or Mt. Sinai, and improve sufficiently to be able to trudge around the floor holding onto my IV pole, and look at the names on the doors of other patients’ rooms and see other patients and their families walking around, it appears that the substantial majority are Jewish, many of them Hasidim and other “black hat” Orthodox. The same has been true in doctors’ waiting rooms.</p>

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<p>With regard to the familial/and Ashkenazi demographic, our GI doc immediately picked up on my son wearing a star and asked if we were Askenazi when he heard my S’s recent history. Up until that moment we were thinking resistant bug. According to him this is the demographic for IBD (he condsidered UC and Crohns together). He made a point of mentioning how much of the research on this is from the Northeast for this reason. In our case my husband is Ashkenazi but I am Sephardic through and through. My dad told me that his mother had very bad digestive problems related to “nerves” and was so ill that she had to leave the family for a while so she could “relax” and get stronger. In photos it is obvious that she was very thin. He has died before I knew enough to ask the details of her illness but it does sound like this could have been going on in my Sephardic family. Of course none of this is limited to Jews or Ashkenazi Jews but apparently there is thought to be a familial link(by at least some). On our last visit the GI asked if anyone else in the family had UC but I didn’t think of my grandmother until after we left.</p>

<p>I hadn’t heard that anyone else on this thread is taking AsacolHD, but just in case. I happened to look on their website for information and stumbled on the availability of a discount card patients can get from their GI doc. I asked about this at our visit and he gave me one. This magic card made my $35 copay disappear! Perhaps similar cards are available for other meds. but it took me asking for it to get it. Perhaps their are similar discounts for other meds.</p>

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<p>I will also share that Humira provides a secondary insurance for the drug bringing down the co-payment quite a bit. It’s a one-time sign-up and they apply it each time.</p>

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<p>The more I learn on this thread, the harder the original poster’s decisions seem. I can see that there could be very good reasons for the son to be home until the right meds are found, and, considering that he is young and has ADHD, it could be hard for a parent to feel comfortable sending him off. Going with him, or frequent visits, might be the only option, depending on siblings’ needs, money and work obligations and so on. I do feel, as I originally posted, that maximizing “normal” life is always the best path w/chronic illness, but not at the expense of safety of course. I am sure that the right judgment will be made, since the original poster seems on top of things, as much as a person can be at this early stage of diagnosis.</p>

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<p>I personally wished I would have quit college much sooner when I got crohn. The amount of stress both crohn and college brought onto me did not help in any way and I think if I would have accepted that it was ok to fall behind and to take a “time out” and go at my own pace, it would have helpoed both my study and my own health which is far more important. Someone who has crohn is at a disadvantage, the moment I realised that is the moment I could relax more and not feel insecure or inferior to classmates. I have had the disease for 10 years now and I have been to ER 2 times in the past, one time in a coma, and doctors told me that it’s important to relax, exercise, and avoid being around people who smoke, and I could do none of those by staying in college.</p>

<p>The general public is also relatively unaware that so many people have this disease and it’s hard for others to understand that you can be sick and look fairly normal. My school had no sympathy with me whatsoever, because I did not look sick, even though I had horrible pains in college for months, the day I stopped stressing out and accepted that it was ok to be different and to take things as they come is the day I felt a huge burden fall off my shoulders. The priority is fighting this disease, not college or anything else, fighting crohn and staying healthy should be the top priority.</p>

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<p>I feel so close to the OP’s situation, especially today because my S just left to be gone for most of the summer as a camp counselor. No one can answer the questions other than the OP her son and family and doctor. But here is my checklist in dealing with this first big trip but also several little ones. One thing that is acutely apparent to me is that my S (dx UC not Crohns) is 3 months out from diagnosis and he is still not on a stable medicaton regimen. Keeping him home until that happens would be handicapping him. Here are the questions:
1-Is my son feeling reasonably well? Yes
2-Is he feeling as well as he did before he got sick? No
3-Is it a fair possiblity that he will take a turn for the worse while away? Yes
4-Does he have a plan about what to do if he takes a turn for the worse? Yes, (he has medications he can take and knows to call us and/or his doctor’s office, he has strategies to deal with discomfort and pain.) It seems that the setbacks with Crohns can be more consequencial, from the little I know being able to recognize a pre-crisis situation and having strategies to manage it would be important.
5-Does he know how to manage his diet? Yes,( he has a good feel for the types of foods that have been working for him and he has a good idea of foods that may cause problems. He also has a list in case he forgets. We expect that the foods that work will be available to him.)
6-Will going be detrimental to his health? I’m hoping no (This is a deal breaker question. I don’t think it will be detrimental, if I did we would have to make modifications so that it is not likely to be detrimental or he would not go. Right now I’m not sure of anything, given his situaton I think staying home would be more detrimental because I believe camp is his favorite place on earth.)
7-If he has serious problems is there a rescue plan? Yes,( there is a nurse on the premises and we can swoop in for the rescue if needed. Not easy and not pleasant but doable).</p>

<p>I feel blessed that we had a window of time to adjust somewhat while there was no reason to leave home for much time, but I think this would cover it even if his plan to leave came one week after his diagnosis. Some modificatons I can think of in your s’s situation if they are needed are:

  • Leaving a bit later to get things somewhat in place if they are not and to be reasonably sure your son has a reliable system for taking the medication as scheduled. Also if doable and you can see any benefit to it I wonder if going for a couple of weeks taking a few days off to come home and regrouping and then going back for a couple more weeks throughout the summer is doable for him and the project he will be working on and helpful. I thought you said he is about a 3 hour drive away. Another possibility might be to take a guesstimate of a reasonable number of hours to work each day to minimize stress and if this helps and the professor is open to it perhaps he can still work on the research in a maybe more limited way.</p>

<p>-One way or another being reasonably sure that friendly nutritious foods are readily available is critical. This might be accomplished a number of ways, maybe finding reliable restaurants nearby, making meals ahead of time and freezing them, and having a few go to foods that work in a pinch might help. (For my son this has been ramen noodles, specific canned soups and crackers, instant oatmeal and smooth peanut butter sandwiches) In your S’s case it would seem that easy to prepare shakes or smoothies with the right ingredients to boost nutrition and increase calorie intake without causing problems would be helpful. </p>

<p>This is what comes to mind. I see our job as parents and also my job professionally as a physical therapist to try and make things that may initially seem difficult doable but also to have the wisdom to say this won’t work when I believe it will not. It is hard to do with our kids and I am always second guessing myself. FWIW my son knowing that he has to be able to be on top of some things healthwise to be able to do the things he wants to do has be a huge motivator and he has time and time again exceeded my expectations. I am really more worried about how the school year will go than the summer. We will meet with a disabilities counselor and hopefully get many of the bugs worked out before he starts college.</p>

<p>I hope some of this helps you. It is helpful to me to put this in words. In short my wish is to do all that we can think of to help my son keep his life on track but also to accept the changes that need to be made and work with them. Much easier to say than to do.</p>

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<p>Spectum2- it sounds like you have a good plan for your son. I hope he has a great summer.</p>

<p>My son doesn’t seem to be in a hurry to go to the internship just yet. He still doesn’t feel that great and he’s been in touch with his prof who said, don’t worry, come when you can and if you can’t, that’s ok. The college will only charge us for the actual days he is living in the summer housing - which is amazing, and quite a relief.</p>

<p>We are really confused about diet and medications. I’ve read a lot about the Specific Carbohydrate Diet and read posts on the Crohn’s forum from people who say they are on it and off meds now. Unfortunately there is only one pilot study that’s been done. Still, dietary changes would be better than immunosuppression. I read that elemental diets were equal to prednisone in terms of producing remissions in children and adolescents. so it seems that diet can be a factor. My son keeps asking what can he eat, and that is a difficult question… I’d feel much more comfortable going away now if he were on diet than if he were on Imuran.</p>

<p>We went to his primary doctor on Friday and she helped us make an apt with another gastroenterologist in the same group. (There’s only 1 group in our town.) She said the new gi doc is a really good communicator and open to questions, and boy do we have a lot of them! We see him Tuesday and hope to get more info.</p>

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<p>Whattodo: Wonderful that the internship is so flexible. It sounds like the prof and school will make it work anyway that is right for your son and that the prof will understand if it doesn’t. It also sounds like you and your son have the decision making under control. I hope you find the answers you are looking for with the new doc. and most of all that your son is feeling more like himself soon. I think it is helpful to get more than one medical opinion and see more than one approach. We are working on setting up and appointment with a GI doc in the college town my S will be going to school. The doc was reccommended by a friends family that live in the area. I am looking forward to hearing if this doctor approaches my S’s condition any differently. I am hoping to attend a CCFA support group meeting this summer. Most of all I am hoping to learn about the different doctors in our area. it is hard to know who to go to.</p>

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<p>Good to hear another Dr is available. Different communication may help a lot.
And the school and Prof seem to be very reasonable.</p>

<p>I hope improvement comes soon.</p>

<p>Spectrum2 I like your list. It’s fairly close to the mental list I run when planning trips. i hope camp goes smoothly…it’s good to really LIVE with the disease. It gives me a sense of control/coping/less stress.</p>

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<p>OP–I too have a son with Crohn’s–diagnosed at age 12 and now just finishing up his Freshman year at a school about 2 hours away. It took some time to find the right combination of medicines that worked best for him…he had some ups and downs the first year or two but functioned throughout. Since then, he’s been doing wonderfully well. He takes one ton of a lot of pills, but they are working for him, and he is living his life.</p>

<p>You’ve already received great advice on this thread, but I thought I’d reiterate the keys that have been true for us.</p>

<p>1) Find a medical team with whom you’re comfortable even if you have to travel to get to them. Not all GI doctors specialize in IBD…it’s best if you find one who does. Sounds like you are working through that now.</p>

<p>2) Register with the College Disabilities office so that your son can get whatever assistance he needs.</p>

<p>3) Educate yourself on insurance issues. Sounds like that hasn’t been an issue so far, and that’s good. Be sure to understand the future potential issues as your son moves toward being financially independent to make sure he’s always able to get insurance.</p>

<p>4) Let your son decide how he’s going to live his life and what he wants to do, and then support him. </p>

<p>Some days, I think point #4 is the hardest. Even with my son being diagnosed at a young age I had to learn to let him deal with everything the way he wanted to deal with it. Of course, he was young so I took responsibilty for his medical treatments, but I also tried to get him to deal with it the way that I personally wanted to work through it (e.g. get support, help with fund-raising, etc.) Over time I had to learn to accept that he had his own way of wanting to deal with it, and his way was to get on with his life and do all the normal things he wanted to do. It’s far, far better for kids to accept/manage/move-on than to have the disease define them. Net, if he wants to go back for his Internship and wants to return to College in the Fall, applaud his determination and help him with whatever help he needs in whatever way you can help. </p>

<p>Both the patients and the family go through a grieving process when faced with a chronic disease diagnosis. Teens have hopes/dreams for themselves. Parents have hopes/dreams for their children. Nobody has a chronic illness in their future vision. It takes time to adjust and deal and come out the other side. I will say that while I still wish my son didn’t have Crohn’s, for a number of reasons, it has broadened his horizons. Further I think he has a great appreciation for life and has become a far more resilient person.</p>

<p>Let your son’s positive attitude drive him forward. Help him in learning how to manage his disease, but let him keep the focus on living his life.</p>

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<p>I don’t think the SCD diet helps much. I have big questions when people say the SCD diet brought them into remission. Many of those people are on meds…so there’s no certainty if it was the diet or the meds, and it’s very possible to go into remission without changing your diet at all, as I’ve had crohn for 10 years I have went into spontanious remission many times without a change in diet…it just happens…I did not alter my lifestyle at all. But if I tried the SCD diet I would have said it was a miracle diet, even though it had nothing to do with it, remission in crohn patients happens all the time without anyone knowing why.</p>

<p>As far as the imuran or infliximab. People need to understand that people with crohn have higher TNF-alpha levels than normal people in their abdominal region, that in itself is dangerous too.</p>

<p>The risks increase if you do combination therapy with imuran and infliximab or humira, infliximab or imuran on it’s own (so not combined) carries relatively small risks, and they don’t even know if those risks aren’t there because the patients simply had crohn. Too low TNF-alpha levels is bad, but too high is also bad, both carry risks, the risks are actually similar in many ways. So doctors try to find a balance, to reduce TNF-Alpha levels to a point where the body is no longer being damaged by inflammation and high enough that there is no chance of side-effct. But remember, I can not say this enough, leaving high levels of TNF-Alpha in the body by not treating crohn carries a risk in itself.</p>

<p>I have talked many many hours with doctors about those drugs and untreated inflammation is much worse and much riskier than treating the inflammation, and I really really doubt that a diet has much effect on people since it has almost no effect on TNF-alpha. There are some herbs that affect TNF-alpha levels like boswellia for example, if you really want to go the diet way, maybe supplement with that at least.</p>

<p>Not going on meds is a huge risk in itself, since inflammation and pain is a sign of your gut literally being destroyed day by day, and the end result for those people is that they cut their out…that’s the risk you take by trying a diet too…it’s a real risk. I hope people can weigh the benfits and the negatives and make an informed decision and know there are many many more risks from leaving something untreated than treating it.</p>

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<p>A point I would like to make specific about the SCD diet is that the diet in itself comes with risks. There are quite a number of nutriets like short chain fatty acids that are missing from that specific diet, that are specifically required if the body wants to heal the mucosa (the outer layer of the intestin).</p>

<p>Another risk is that the diet is quite calorie restrictive, if you go on the diet, expect to lose weight, anyone who is already underweight should ask themselves if that risk of even losing more weight is worth that chance that they might…and it’s a big might…get better through it.</p>

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<p>kinyxx-<br>
I do think the role of diet is underrated. How do elemental enteral diets create remissions at the same rate as prednisone (80%)?</p>

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<p>There is nothing that creates 80% remission rates at this moment, infliximab and LDN are quite high but still in all tests it’s around 60%, bearing in mind that some create antibodies, something that can happen with any drug.</p>

<p>There are no studies I know of that show SCD or elemental diets create 80% remission rates. I have a hard time finding studies that show the SCD or elemental diet does anything for crohn at all, outside of a lot of anecdotal evidence, but then there’s a lot of anecdotal evidence that smoking crack or doing cocaine or sleeping upside down or even drinking alcohol helps for crohn too.</p>

<p>All I can tell you is that someone who has an inflamed gut and relies on a diet alone is taking huge risks, exponentially higher than gettting proper care.</p>

<p>And as someone who has been in a coma I know how important it is not to take chances, you can not rely on a diet alone when the person is not completely in remission. Many who try those diets are not in remission and the end result I have seen far too often for those people. They end up losing part of their intestine. </p>

<p>If the person is completely in remission, sure, but if the person is not, for the love of God don’t rely on a diet.</p>

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<p>Kinyxx: I am a cautious person and would not want my son to try something dangerous. </p>

<p>In any case, there is some good data on enteral elemental diets.
[The</a> use of exclusive enteral nutrition for induction of remission in children with Crohn’s disease demonstrates that disease phenotype does not influence clinical remission - BUCHANAN - 2009 - Alimentary Pharmacology & Therapeutics - Wiley Onli](<a href=“http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2009.04067.x/full]The”>http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2009.04067.x/full)</p>

<p>"Exclusive enteral nutrition (EEN) is an effective treatment for the induction of remission in CD patients with some studies achieving remission rates of greater than 80%. In children at least, EEN is as least as effective as corticosteroids in inducing disease remission based on the results of two meta-analyses. "</p>

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<p>I have seen that study a number of times, but I think it’s the only study of that kind. Do you truly belive if going on a diet or on En, clinics would not simply stick with that? Japan does this, patients are immediatly put on EN, but in conjunction with medication and the EN is built off and the maintenance therapy is medication.</p>

<p>I have had enteral nutrition for a few weeks the first time I came into ER, intravenous through my neck completely bypassing my colon, so it had time to heal, I could only drink water. </p>

<p>I had to eventually go off enteral nutrition since that in itself, long term, would cause a lot of issues if you started eating again after a long period of being on EN. It also didn’t fix the issue, namely that many patients have an excess of TNF-Alpha, which brings risks by themselves.</p>

<p>How would your son stay on EN, it is not something that you can stay on, nor can those kids in that study stay on EN.</p>

<p>I had an MRI and I talked to the person who took the MRI in the hospital and I asked him…what should I do…I know my doctor says X but I don’t know if there are risks etc. And he told me this:</p>

<p>“I get risks every day by taking MRI of people, each time I go on a plane I take risks. What you have to do is weigh the risks and then make a calculated decision and calm down.”</p>

<p>What I’m a bit affraid of is that people seem to be forgetting that both sides can carry risks, there are huge risks attached to crohn by making guessing or “trying things” that no one truly knows if they work or not you kow.</p>

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<p>Well, exclusive enteral nutrition is a pretty drastic treatment all by itself, given that “exclusive” means that the liquid feeding is <em>all</em> the patient takes in for a 6-8 week period – no food at all! (Also, if it’s not administered orally but through an NG tube: trust me, I’ve been on NG tubes for weeks at a time, and they can make life tolerable, but they’re not fun. Neither is having one of those tubes in your neck.) I imagine that doctors are more likely to try something like that in children, given the serious effects of both Crohn’s Disease itself, and long term prednisone usage, on children, including stunted growth, etc. (Sometimes I wonder if maybe I already might have had Crohn’s Disease long before I was first diagnosed with IBD at the age of 22, and if maybe that could be part of the reason I’m so short, shorter than both of my parents.) </p>

<p>I think it’s natural, with the Internet out there, for people to search for what sound like amazing treatments that bypass the usual medications and all their potential side effects. Had the Internet been around in 1977, I probably would have too. Instead, I used to go read medical books and in libraries and bookstores, and give myself anxiety attacks in the process!</p>

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<p>My only point is that if enteral nutrition can cause remission (and it seems to in the vast majority of children with Crohn’s), diet does have the potential to impact the disease.
That’s all.</p>

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<p>Diet impacts the disease on some level probably, I would recommend stuff like omega 3 and make sure to keep vitamin D and A levels high enough, and let a clinic check iron and B12. </p>

<p>But on critical moments or when someone is in the process of losing weight, a diet in my experience does nothing to help the situation, it tends to snowball out of control until the inflammation is kept under control with meds. and then you can get into a state of remission.</p>

<p>There are many people who “manage” with crohn by ups and downs and going in and out of remission, important to note that wounds in your intestine are not like regular wounds you would get from say a cut, the healing process works differently and there is the chance of scarring, which can lead to strictures. It’s not as simple as going in and out of remission and having no side effects, it’s possible, but it’s also possible there is a lot of scarring going on you don’t know about, until those people get strictures and sometimes blockage.</p>

<p>Therapy changed a bit, doctors now use a “top down” approach, which means that instead of lightly building up the medication, there is often chosen for a bit stronger medication. Why? Because of the scarring and snowball effect crohn tends to have, this disease can snowball out of control really fast, and although it’s not classified as a fatal disease, there are plenty of people who die because of crohn because they did not use proper medication too you know, like I said, look at both sides of the coin before making any dections, even though the decisions can be rather hard, it’s important to take some time and stay calm and weigh everything against everything, and then to relax and be happy with the decision you make and hopefully we all will have a cure soon.</p>

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<p>I found the sicker my son got, the higher my tolerance of medication risks became.</p>