Crohn's Disease: advice?

<p>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).</p>

<p>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.</p>

<p>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.</p>

<p>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</a> Side Effects | Drugs.com](<a href=“http://www.drugs.com/sfx/remicade-side-effects.html]Remicade”>Remicade Side Effects: Common, Severe, Long Term). 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</a> Deadliest Drugs - Page 2 - MSN Health - Health Topics](<a href=“http://health.msn.com/health-topics/articlepage.aspx?cp-documentid=100198254&page=2]10”>http://health.msn.com/health-topics/articlepage.aspx?cp-documentid=100198254&page=2) </p>

<p>See this study at [Risks</a> and benefits of infliximab … [Clin Gastroenterol Hepatol. 2006] - PubMed - NCBI](<a href=“Risks and benefits of infliximab for the treatment of Crohn's disease - PubMed”>Risks and benefits of infliximab for the treatment of Crohn's disease - PubMed)</p>

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<p>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.</p>

<p>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</a> avium subspecies paratuberculosis - Wikipedia, the free encyclopedia](<a href=“http://en.wikipedia.org/wiki/Mycobacterium_avium_subspecies_paratuberculosis]Mycobacterium”>Mycobacterium avium subsp. paratuberculosis - Wikipedia)) 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:</p>

<p>[crohn’s</a> disease - Google Search](<a href=“crohn's disease - Google Search”>crohn's disease - Google Search)</p>

<p>Here’s a press release summarizing a lot of these recent stories:</p>

<p><a href=“http://www.eurekalert.org/pub_releases/2012-05/ddw-nri051812.php[/url]”>http://www.eurekalert.org/pub_releases/2012-05/ddw-nri051812.php&lt;/a&gt;&lt;/p&gt;

<p>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.</p>

<p>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?</p>

<p>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.</p>

<p>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.</p>

<p>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!</p>

<p>I know that Asacol is supposed to be effective for the colon, not really the ileum, so I know that it’s prescribed for people who have Crohn’s disease in the colon or rectum. (Unfortunately, I’m allergic.) I don’t know if it works, or is prescribed much, for people with Crohn’s Disease in the ileum, which represents the vast majority of people with Crohn’s.</p>

<p>For information about medications see: [CCFA.org:</a> Types of Medication](<a href=“http://www.ccfa.org/info/treatment/medications]CCFA.org:”>http://www.ccfa.org/info/treatment/medications).
CCFA will also mail you information about Crohns and Colitis. The web address for contact information is [CCFA.org:</a> Contact Us](<a href=“http://www.ccfa.org/contact/?TMI=5]CCFA.org:”>http://www.ccfa.org/contact/?TMI=5)</p>

<p>Asacol is more effective for the colon I believe and it’s supposed to help reduce the risk of colon cancer for those affected in that region. I think it does less for the ileum.</p>

<p>While a cure seems far away, the research on new treatments is important. I have to admit that I don’t read up as much as I used to but one thing I’ve been seeing for years is the research on low dose naltexone which seems much safer than a lot of the heavy-artillery drugs.</p>

<p>[Low-dose</a> naltrexone therapy improves acti… [Am J Gastroenterol. 2007] - PubMed - NCBI](<a href=“Low-dose naltrexone therapy improves active Crohn's disease - PubMed”>Low-dose naltrexone therapy improves active Crohn's disease - PubMed)</p>

<p>I also went to a workshop that ccfa presented on the research happening with worms. Yes, worms. The worms are specifically engineered (I forget which type they are) to not be able to reproduce. The patient takes a capsule with eggs and they grow in the lining of the GI tract. The body turns it’s auto-immune response onto the worms instead of on itself and symptoms abate. The worms die in a few weeks and another capsule can be taken or someone can end treatment. It sounds like science fiction but it’s been researched for some time now and has been researched enough to have been presented at a ccfa workshop. Again, what is truly exciting about this is that it’s not a drug. Anyhow, I look forward to a day when there are effective treatments that are safer.</p>

<p>[Wormy</a> Cocktail Fights Crohn’s Disease](<a href=“http://www.webmd.com/ibd-crohns-disease/crohns-disease/news/20040519/wormy-cocktail-fights-crohns-disease]Wormy”>Crohn's Disease: Symptoms, Causes, Prevention, Prognosis, and Risk Factors)</p>

<p>I don’t think I could ever do that, mimk6. I just couldn’t!</p>

<p>I’ll have to tell my son about the worms! How cool is that? Just to be clear I’m not advocating leaping into Remicade as a first treatment. As I mentioned we were up against the wall when we started it. I also think it’s important to know that it exists as a possible therapy among others.</p>

<p>For the cramps, try a hot water bottle. Not a heating pad. An old fashioned hot water bottle, of some size. There is something about the combination of weight and warmth that really helps. About the only thing that helps, but it helps.</p>

<p>Ask about adding meds–perhaps sulfa based to the prednisone. Have other symptoms abated? Is he dehydrated (makes the cramps worse for me)?</p>

<p>^^^You suggested the hot water bottle for my S and it was very helpful!</p>

<p>The hot water bottle sounds like a good idea except not today-- it’s about 90 degrees in my house!</p>

<p>I’ve read about the worms-- if it were me, I’d choose worms over biologics. I’m glad they are in clinical trials.</p>

<p>I am glad the water bottle helped spectrum2.</p>

<p>I promise it won’t make him all that much warmer, whattodo2, and if it stops the cramps, who cares. Those cramps can be really painful, and that spirals into bad things.
I suppose you could try it filled with lukewarm water (I would NOT try cold). </p>

<p>I had tried everything else I could think of, and was fairly desperate when I found an old hot water bottle hiding in the back of a cabinet at my parent’s house. The relief was amazing…just amazing.</p>

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<p>They are teeny-tiny. Sterile. You never see them and you can take them in a capsule as opposed to drinking. When my daughter heard something on the radio about a guy who cured his asthma that way (and she’d heard about it for Crohn’s) she said she felt like giving herself worms the old-fashioned way. I think she’d do it in a heartbeat. Imagine being off all those drugs with the potentially lethal side effects.</p>

<p>My understanding of the way things work with prednisone – and I’m obviously not a doctor, but I have been dealing with this personally for more than 30 years now, and was back on prednisone again as recently as 3 years ago – is that they tend to start with the lowest dose that they think will control symptoms. If that doesn’t work, the chances are that the next step is to increase the dosage, rather than to add another medication right away. Once things are under control, then the process begins of trying to lower the prednisone dosage gradually, while perhaps adding another medication to the mix at some point.</p>

<p>If what your son is taking isn’t helping, don’t hesitate to call his doctor. When prednisone is given in an appropriate dosage, unless someone is already extremely ill, the initial relief is usually pretty fast.</p>

<p>Feeling a bit discouraged. We went to the local GI doctor who was very nice but seemed only somewhat knowledgeable. He prescribed imuran on top of the prednisone. I found it quite surprising that the doctor didn’t mention side effects until my son asked. Then he mentioned a couple but not all of the serious ones. We asked about diet, how to gain weight and if there were supplements (vitamins and/or caloric drinks) that might be useful. He said eat more calories, take a multivitamin, and avoid spicy foods. My son mentioned worms and he looked at him like he was crazy. I asked about accommodations for college and he hadn’t heard that term before. Regarding going away for the summer, the doctor seemed to think it was fine. My husband asked what should he do if he feels sick in the summer. The doctor said “see a doctor there.” We left with lots of questions and not at all sure we are on the right path. We called Cleveland Clinic and he can be seen in July, which seems like a long time when you want answers.</p>

<p>Hmm, not a doctor here, but not really loving the information (or lack of information) for you and your son. The imuran is sometimes given to sort of “boost” the steroids without increasing the dosage. That could be a good thing. Again, if he is not improving soon, call the doctor again (I would target Friday am for the call—mostly to get an answer before the weekend). I haven’t taken steroids in a while (years), but seem to recall they are fairly immediate in acting. DonnaL might have more recent information.</p>

<p>Call the college about the accomodations. Call the Cleveland Clinic from time to time to check on cancellations for an earlier appointment.</p>

<p>Taking a multivitamin is not a bad idea, but it shouldn’t be the only idea. You could try a diet drink (just buy one or two to see how it goes). Not to replace a meal, but to be added to a meal. I do this for Dh when he is super busy…he’s a very skinny guy. If your son can tolerate calorically dense foods, make those meals. Try a favorite, then wait a day or so, try another one. For me, calorically dense doesn’t really work (can’t tolerate the fat–but UC not Crohn’s). </p>

<p>You might contact CCFA for a list of specialists, groups, online support. Every avenue for help seems appropriate.</p>

<p>I am hoping things start improving quickly. Your son, and your family are in my thoughts.</p>

<p>I’m glad you got to see the doctor but sorry about the difficulty. I understand that experience. On our last visit our doctor was smug to what I thought was disrespectful with regard to some of the questions that I had related to diet and supplements. He told us that there is no UC diet and gave us no guidelines, he discouraged all supplements except for maybe probiotics snf multivitamins. But it wasn’t what he said, it was the way he said it that made me angry, because I had read about the things I was asking from reliable sources. With regard to the worm studies, without my asking he told me you will see all kinds of crazy things on the internet, if they worked we would use them. He specifically mentioned that some of his patients even asked about worms in a mocking sort of way. I expect that we will make a move but since most of the Gi docs in our area are part of the same pracctice it isn’t easy to make a change. It isn’t that our Doctor isn’t good or nice but he clearly didn’t like those questions. I am not familiar with the new medication perscribed but in our situation I have been hanging on because the medical care provided is helping so I have been using outside sources like the book and cc for the additonal information that I need. Also the nurse this medical practice is very helpful. As far as accommodations go, I learned about that on CC and my doctor discouraged requesting them for privacy reasons but has been willing to provide the needed documentation. My only suggesion regarding the clinic is to see if they have a waitlist to call you if there are cancellations or if you can call in to get in on a cancellation. At the practice I go to getting appointments is difficult and while the front desk will tell me there are no appointments for several months if I speak with the nurse I can get in. My son is an established patient so this works but you might try stressing the urgency (especially if the new medication doesn’t help, and I hope it does,) and ask if there is anyone that you can speak to to get in sooner. I also wonder if your son has a GP that he goes to if their office might be able to help get you an earlier appointment. Is your son feeling any better at all? Our experience with prednisone was that my son noticed small steady improvements for the first few days and really significant improvements after about 4-5 days. (By that I mean it took about 5 days for that elusive solid bloodless poop :), and for the cramping to be nearly gone, these are his biggest problems with UC when flaring). One mistake that I made when trying to increase my S’s calorie intake when he was tolerating a very minimal diet was to give him Ensure. I suppose that the milk products in this are a problem. I didn’t know it at the time but he gradually started to refuse them. One of the smoothie ideas I got from the book includes using Spiru-tein( a protein supplement that uses soy protein instead of whey or milk products), smooth peanut butter, milk without lactose (soy, almond or Lactaid) and vanilla yougurt either lactose free or brands without milk solids and frozen bananas. I thought you also mentioned having an appointiment with a nutritionist. If you do I would expect you will get a lot more help there with dietary questions.</p>

<p>Doctors are never good with nutritional advice. The dietician will be helpful. Frankly, the Internet and organizations or forums geared to a particular condition are often the most helpful.</p>

<p>Doctors also won’t know about accommodations. You need to get information from the disabilities office at the school, and they will tell you what documentation they want. Again, research online with an organization or forum geared to Crohn’s might have the most information. Also, the Federal Dept. of Education, Office for Civil Rights, has pamphlets that have accommodations for specific problems. But really, posters and I think the OP have listed the most reasonable ones already.</p>

<p>Write a letter for the doctor to sign. I have never had a doctor write the letter him or herself. Write something like : Dear Disabilities Office, I was recently diagnosed with Crohn’s disease after suffering symptoms for the past year. Crohn’s is a chronic autoimmune gastrointestinal…etc. etc. Mention that flares occur, and when and why accommodations will be needed etc.etc.
Then: " I have talked with my doctor and we agreed that the following accommodations should be requested for me while I am in school:" (List) extra breaks/time on tests and exams, excused absences for MD appointments of for health reasons, extensions on papers and projects, support from dietary services (specify), note taker in classes when missed (some prof.'s will provide, some schools have an arrangement with volunteers who leave notes in a chosen place for anonymity), reduced course load as needed, single room or room near a bathroom, etc.</p>

<p>The doctor doesn’t understand that privacy is not an issue. Disabilities services are completely confidential. The student is given a letter listing accommodations, which goes to each professor, if the student so chooses. The letter does not state the problem. It is up to the student how much to say or not say.</p>

<p>Every disabilities office will tell you to take care of the worst case scenario in what you ask for. They much prefer to have excessive accommodations on record, rather than chase crises down when they occur. </p>

<p>And ditto to all of the above for ADHD. Your son has a right to do his best quality work. Within reason of course.</p>