Crohn's Disease: advice?

[whattodo2]

Wellspring: Nothing has been offered except prednisone at this point; we meet with the gi doc again tomorrow. What is your experience with Remicade? Feel free to pm me if you like.

Mom2Mom: Yes attitude is extremely important.

[compmom]

I don't know about finances in your family, but there are on-line, as well as in-person, coaches who could help with both ADHD and managing the Crohn's. I found an online coach (for another daughter) who works at Landmark, who charges $100/hour, which is less expensive than most. (However, we could not afford it anyway.) Some colleges provide this kind of support (we made an arrangement with a freshman advisor to help with time management and writing, at a very small rural LAC).

I was thinking about your situation this morning, and want to add that my daughter w/health conditions has actually missed an opportunity to do a program in Bali one summer, a selective summer arts program in another part of the country, and many travel opportunities with friends. So I don't mean to have suggested that you can "LIVE with" in the sense of never missing out. But you get so you maximize every opportunity for normalcy during times when that is possible.

If this is not the time to maximize, but a time to prepare and consolidate, I don't want to seem to be trying to sway anyone toward something that is unhealthy. But overall, making opportunities happen regardless of medical issues is a healthy way to go.

You do end up doing a lot of stuff when you are feeling badly in ways that would make most people take to bed, but you cannot spend your life in bed. And there are good times too.

The daughter w/health conditions went on steroids(not for GI) yesterday and is a different person today. Wham. Amazing every time. Another daughter w/ADHD was on the phone at 1 am last night. She cannot take meds and we cannot afford the tutor, so I do it. Extra time on assignments has saved her, and she has amazed me with the work she has produced in an environment that understands she has a right to do her best work.

Lots of hope with lots of struggle: one foot in front of the other every day, then looking back and seeing progress. Good luck!

[benreb]

You have been given a lot of good advice, so I'm not going to repeat it here. Just wanted to chime in on the Remicade issue. My son was diagnosed with Crohn's when he was 11 (he's now almost 18). He tried a lot of different medications for years, and nothing helped until he was put on Remicade. The Remicade put him into remission and was amazing. However, he switched to Humira when he got to high school, because he didn't want to have to keep missing school to get the Remicade infusions at the hospital. Humira is an injection he gives himself every two weeks. This might be more convenient for your son - something to think about.

Also, depending on your insurance coverage, Remicade can be extremely expensive. If you do decide to go that route, look into a program called Remistart (I'm assuming the company still does this). It will cover part of the cost of each infusion, and was very easy to sign up for.

Feel free to contact me. I've been dealing with this disease for a long time and my son was on most of the medications available. Another good resource is a website for parents of children with IBD which is DragonPack.Com® IBD Parents Support Message Board

Best of luck to you and your son.

[Wellspring]

Our experience with Remicade has been miraculous. Before the Remicade nothing worked. Prednisone kept him under control, sort of, but the side effects were unbelievable. He looked like a kid on massive doses of prednisone-- huge cheeks, big belly. And he was beginning to get bone density loss. We tried all of the other drugs, alone or in combination, but there was little effect on his disease. He had two bowel resections when he was 14 (active disease on top of scar tissue caused strictures in his small intestines.) He was running out of small intestine and we were running out of options when they suggested Remicade. Since he started he has tripled his weight. He is in complete remission and can (and does) eat anything he wants. The one day out of school every two months for the infusion is a small price to pay. It is expensive but we are fortunate to have insurance that covers it. The infusion takes about three hours at the hospital from start to finish and involves no discomfort either during or after (unless you count the IV needle.)

We live about 15 minutes from a major children's hospital and it may be that we were offered newer or more aggressive treatment than might be the case in a more rural environment.

[Mom2M]

It is possible the Dr is waiting to see the response from prednisone. It's only been about 5 days since diagnosis. I'm sure it feels like a lifetime, but 5 days is not that long.

How's he feeling?

[mimk6]

For a while I went to a lot of the workshops that ccfa put on where they brought in top medical experts to present on issues like current treatments, etc. If you can get to those or get the CDs, they are very worthwhile. One thing I remember hearing a few years back is that for many years treatment went from milder to stronger drugs on the pyramid of drugs. At the bottom of the pyramid are things like 5 ASAs, then antibiotics, budesonide (a safer kind of steroid because it's more targeted to the GI) and then drugs that suppress the immune system like 6 MP and then the biologics like Remicade, Humira and others. In the past you went from the bottom up. But there is some current thinking that starting at the top aggressively may be more effective. Whether this is happening in most doctor offices is not something I know -- I imagine insurance companies will not pay for Remicade until cheaper drugs have failed. And most patients are reluctant to start with the strongest thing first because then you've reduced the chances of lesser drugs working. You'd have to do some homework on this whole issue. All of that said, when my daughter got diagnosed we went up the pyramid which is most probably what still happens almost everywhere for all the reasons I listed and because the studies may not be enough to support another route. 5ASAs failed and strong antibiotics helped with secondary symptoms but did not bring good long-term results. 6MP brought the first significant reduction in symptoms but about two years later it failed and she was on 6 MP, cipro and budesonide and still having a lot of pain. It was time for biologics. She chose Humira over Remicade for the convenience. Humira has a program to defray the cost of copayments. Humira has been a godsend but she still has a couple of bad bouts of pain a month. I hear a lot of real remission stories on Remicade and I don't know enough people who've done Humira.

All of this is to say, don't wait too long to go up the pyramid. If something isn't working, demand a change in treatment, especially if it's one of the lesser drugs. This is not just because time is lost being sick, but because more damage occurs to the GI tract and the strictures, scarring, etc. accumulate.

[DonnaL]

As mimk6 points out, Remicade is not something that most specialists would traditionally consider recommending until less drastic treatments have proved ineffective. Yes, it helps many people, but not everyone, and because of its immunosuppressive properties, people have developed illnesses such as tuberculosis while taking it, and some have even died. I honestly think that it may not be such a great idea even to suggest it as an imminent possibility to a parent whose child has just been diagnosed. There are many, many options between prednisone and Remicade. Many people with Crohn's do just fine with the various sulfa-derived medications, especially the ones that have been developed in the last ten years or so.

I speak as someone who is certainly not an expert, but has a lot of personal experience with Crohn's. I may not have a child with it (thankfully), but I was diagnosed with it* myself, more than 30 years ago, when I was 22 years old and in my third year at Harvard Law School. I was hospitalized with it twice that year, and ended up graduating half a year late. But I've managed to practice law for a long time -- I won't pretend that it didn't negatively affect my career -- and become a parent, and do lots of other things, despite having Crohn's ever since.

Anyway, I'm not sure going off from home so soon after a diagnosis is such a great idea. Yes, prednisone is a miracle drug in many ways (I had a very serious case from the beginning and was extremely ill the first time, but IV prednisone and antibiotics in both arms for several days led to an amazing recovery), but the side effects -- especially noticeable ones like the moon face, which I found to be very humiliating when I was young -- are not fun, and forgetting to take it can be dangerous, and I think your son really ought to have a good, experienced GI doctor to monitor his progress and try to start reducing the medication as soon as possible. Parental support can be very helpful. I didn't have that, back when I was 22. Unfortunately, my mother had died two years earlier after we were in a car accident, and my father was never the involved type -- he didn't even come up from NYC to Cambridge to visit me when I was hospitalized, and never even called me the first time I was hospitalized, after I informed him what had happened (he told me afterwards that he assumed I would call him if I were still sick!) -- so I was pretty much on my own, and I found it very difficult.

Good luck to your son. Most people do manage to get Crohn's under control; it's not a curable illness (unlike ulcerative colitis), but people certainly go into remission for long periods, and can lead "normal" lives in every way. I'd recommend one of the message boards for people with Crohn's, but I hesitate because it's really mostly for people who *can't* get it under control, and I had to stop reading it myself after a while, because I found it too frightening.

Donna

* Actually, I was originally diagnosed with ulcerative colitis, since the disease was confined to the colon and rectum, and didn't spread to the ileum -- which is true of about 10% of Crohn's cases. The medical treatments were similar, so it didn't really matter so much which one it was. They didn't know for sure that it was Crohn's until seven years later, when -- after never being able to reduce the prednisone enough to avoid the very unpleasant side effects, without getting horribly sick again, and finding out that I was allergic to all the sulfa-based drugs that were available (I still am, even to the newer ones, unfortunately), and that immunosuppressive treatments caused me to become extremely ill as well -- I had my colon surgically removed. I've had to have major surgery a couple of times since then, too. I have never tried Remicade -- I have concerns with it, and am very wary of how it might affect me. But that's just me, and my extremely unusual propensity to have horrendous complications and side-effects from all sorts of surgeries and treatments. (As some people here may remember, from a few years ago!) Anyway, I'm doing reasonably well now with a combination of budesonide (a corticosteroid derivative that's targeted to release in the intestines -- or, in my case, at the ileorectal anastamosis, since I have no colon -- and has far less systemic effect than prednisone), together with longterm antibiotic therapy, switching between flagyl and cipro periodically. So I hope I'm never faced with Remicade, because for me, it would be a last resort.

[spectrum2]

Whattodo: Don't get me wrong, I would not ignor the weight loss, I'm just thinking that when on medicine this is likely to take care of itself at least enough to get back to your S's "normal" weight. My "healthy" S is about 105lbs and 5'10" so I do understand your concern. I have never been able to put weight on that kid. Oddly he got food poisoning at school the same weekend my younger S got sick at home. I was really worried about his lack of reserve. Fortunately while my younger son didn't get well the older one was fine a few days. My older S functions well as a lightweight so I accept this is his normal. It is definitely important for your S to eat and I'm guessing at that weight he is probably picky and that pickiness is compounded by foods that cause problems. Another great thing in that book were the easy recipes for preparing IBD friendly smoothies which pack in calories and nutrition and lists of "foods that help" and "foods that hurt". There is no clear cut diet for UC either and our doctor didn't give us any guidelines other than trial and error in spite of many questions. When my S was set back for several days after just a few pieces of popcorn we knew that trial and error at best would be extremely difficult. I'm interested to hear about what you learn from the dietician. Our Dr's practice employs a dietician but the doctor didn't refer us to her.

With regard to the disabilities office and IBD. When I called the school my S will attend they told me that accommodations for testing as would be done for IBD and ADHD are in the same location so these are complementary. On the otherhand it was suggested that he sit in the back of the room near a door for IBD and for the ADHD he has been much more successful sitting in the front of the room. We discussed the possibly of having him arrange to sit in the front but on an aisle. As for the incompletes the office might be able to help with that as well. It sounded like the disabilities office could intervene and allow for modification of standard rules when it is needed for success in the presence of illness, although I love Mom2M's suggestions to support him to get through his classes. The office also informed me that it would be possible for my son to retain fulltime status but drop credits below 12 per semester if this was necessary for health reasons. As far as remembering to take meds is concerned this is also a worry for us. We are trying to come up with the best routines we can think of but it is difficult to remember medications 4 times/day even without ADHD. Stress management in college, which is an unknown is also a big concern. It is great that your S has some strategies in place already. I'm not sure if you are referring to "mindfulness" as a technique or if by that you just mean recognizing the stress as a method for keeping it under control. For my S it is basketball that has kept him sane.


We are hoping to do as you suggested and visit a doctor near school prior to its beginning. I'm hoping our Doc will refer us to someone when we visit. I'm really trying to figure out how you know you have a doctor with experience in treating IBD. When we first went to our GI doc is was on a referral from our GP and we had no idea that this would be the diagnosis. I'm not altogether comfortable asking him straight out about his experience with IBD but I am wondering since we never really chose him for this problem.

It hasn't been without several new gray hairs that we have made the decisions to allow our S to take all of the trips he has taken. We made a consious decision to try and prevent him from feeling like a sick kid. I know that he will remember that he got sick his senior year but I am hopeful that his memories of the fun he had will be more vivid. We expect that there will be times that the disease will limit what he does. Each time before he has gone away we explored what the course of action would be if he got sick and had a rescue plan in mind. Only you and he can decide if he is able to be away doing research or at school. For us it has come down to how he is doing at the moment and the back up plan available. We have been trying hard not to interrupt normal life but we know there are circumstances that this may be needed.

PS: Just to clarify from Donna's comments that we cross posted. I have been told that UC is only curable with a colonectomy. Also thus far for my S the main side effect from prednisone has been acne to the back and chest (easily concealed) and mood issues I previously mentioned. The side effects it will have are no doubt variable to the individual and also based on the dose. I have been told that lean kids are less likely to get puffy so I guess every cloud has a silver lining.

[leah125]

I'm on Remicade for Crohn's and although I've had one flare up which I'm currently dealing with, it has been a life saver. It gave me my life back. The effects of it are immediate and I start to feel better the next day after my infusion

[whattodo2]

Mom2M- no evidence of any improvement on prednisone. He had sweating, abd discomfort and extreme fatigue after lunch yesterday and today. It's hard to know what to think.

[Mom2M]

I would call the doctor in the am and discuss the current situation. I don't remember when the follow up appointment is scheduled, but it will be almost a week on the current meds, I would check in. It may be time to consider alternatives. I would work up the pyramid, but your doctor could best advise you and your son. If you don't get good feedback, find a specialist, even if you need to travel (midpoint between your home and the college would be nice).


As far as UC being curable, I have been told it is not curable, but it can be controlled. At least that's my experience.

[DonnaL]

Yes, ulcerative colitis can be cured, but only, as spectrum 2 points out, with a colectomy. It is always confined to the colon (unlike Crohn's), and, therefore, removal of the colon cures it. Obviously, that's very major surgery, so it isn't something anyone recommends right away. However, with modern surgical techniques, internal pouches can be created so that evacuation can be essentially normal (i.e., so no bag has to be worn externally). That kind of approach can't be used with Crohn's, because the intestinal material used to create the internal pouch could itself become diseased. I don't know what percentage of UC patients eventually end up having that kind of surgery.

Also, I'll say again that although I'm well aware that many people view Remicade as a lifesaver, and it's wonderful when it has that effect, there are reasons it generally isn't tried before medications with less serious side effects have failed. Even if the risk of such side effects is small, it doesn't make sense to take that sort of risk if something with a substantially smaller risk of serious complications might work. As it does for many. See the discussion of Remicade side effects at Remicade Side Effects | Drugs.com. The fact remains that in terms of raw numbers of deaths, infliximab is the seventh-deadliest drug, with 1,228 patient deaths from 1998-2005. See 10 Deadliest Drugs - Page 2 - MSN Health - Health Topics

See this study at Risks and benefits of infliximab ... [Clin Gastroenterol Hepatol. 2006] - PubMed - NCBI

Clin Gastroenterol Hepatol. 2006 Aug;4(8):1017-24; quiz 976. Epub 2006 Jul 14.
Risks and benefits of infliximab for the treatment of Crohn's disease.
Siegel CA, Hur C, Korzenik JR, Gazelle GS, Sands BE.

. . . .

METHODS:

A decision analytic model was constructed to determine the risks and benefits of infliximab when compared with standard therapy. The analysis simulated 2 cohorts of 100,000 patients each, with one arm receiving infliximab while the other remained on standard therapy.
RESULTS:

Model results showed that in 100,000 patients at 1 year, infliximab will lead to 12,216 more patients in remission, 4255 fewer surgeries, and 33 fewer deaths from flares of disease. This is at the cost of 201 more lymphomas and 249 more deaths related to complications from infliximab. Overall, the infliximab strategy resulted in more quality-adjusted life years (QALYs/patient) than the standard therapy strategy (.77 QALYs/patient vs .75 QALYs/patient).
CONCLUSIONS:

Despite an increased risk of lymphoma and death associated with use of infliximab, the substantial clinical improvement and fewer surgeries as a result of infliximab result in an increase in QALYs. In properly selected patients, the benefits of infliximab could outweigh its risks. These data should help guide decision making and the informed consent process when considering the use of infliximab for the treatment of Crohn's disease.

So it's fine to talk about how it's helped individual posters, but I don't think it's fair to do so without mentioning the risks, and I really don't think it's right to imply to the mother of a newly-diagnosed patient that maybe she should be asking for it practically right away, following prednisone.

[DonnaL]

I think one of the problems is that despite all the years -- decades -- of research, nobody knows what causes Crohn's Disease. Nobody really knows exactly why infliximab (Remicade) works, when it does. I've been following (at least sporadically) all the different articles and summaries of studies for a long time. (Before the Internet, back in the 1980's, I would go down to the textbook section of the Barnes and Noble on 5th Avenue every so often, and read new medical textbooks to see what was going on with the research.) And so many of the studies are contradictory. Despite all the theories that it's an auto-immune disorder involving an overactive immune system, there are recent studies suggesting that maybe it's actually an under-responsive immune system. There are still a lot of researchers that believe that Mycobacterium avium subspecies paratuberculosis is a causative factor (see Mycobacterium avium subspecies paratuberculosis - Wikipedia, the free encyclopedia) and that longterm antimicrobial therapy is an answer. A google news search for "Crohn's Disease" will almost always come up with a whole lot of recent articles discussing the effects on Crohn's Disease of everything from oral contraceptives and HRT, to being at high altitudes. See the current list of results at:

crohn's disease - Google Search

Here's a press release summarizing a lot of these recent stories:

http://www.eurekalert.org/pub_releas...-nri051812.php

I really don't know if they're substantially closer to a "cure" now than they were when I was diagnosed at the age of 22, despite the much-improved treatment options, and I'm not sure a cure would change my life much anyway at this point. The majority of the daily inconveniences and issues I have to deal with result from no longer having a colon -- in the last 25 years, I've slept more than a few hours at a stretch only a handful of times -- more than from the Crohn's Disease itself.

[compmom]

Whattodo2, so sorry prednisone is not having any benefit as yet. Sometimes it seems to cause fatigue in the afternoon. Do you think the fatigue is caused by the prednisone?

Hoping for progress for your son in coming days. I'm sure the decisions before you will be clearer in a week or two, but the main thing is feeling better. You are in our thoughts.

[spectrum2]

Whattodo:So sorry he isn't feeling better. i also wondered if that might be a side effect from the prednisone. Is that what he was feeling before getting on prednisone? As far as I know prednisone doesn't cause fatigue but it can cause sleeplessness and that can result in fatigue. In anycase I would report back to the physician about how S is feeling since it doesn't sound like he has taken a turn for the better yet.

I don't know what the typical protocol is for Crohns but when my S was started on prednisone he was also started on Asacol at the same time. I believe that Asacol is also perscribed for Crohns. My doctor said he expected my son to be on Asacol forever the prednisone is temporary but very effective in reducing inflamation. At our last visit my doctor obscurely mentioned Remicade or a medicine like it but really at this stage I know I want to hear about the most conservative treatments, it is early to be getting out the big guns!