Crohn's Disease: advice?

Parents Forum
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<p>Again, I’m not a doctor, but I’m actually surprised that someone would suggest imuran so early, rather than, say, increasing the prednisone dose or adding one of the other available medications. Imuran is an immunosuppressive drug – not like Remicade, but I guess it’s at least somewhat related – that’s been around forever, and I thought it was only used somewhere up the ladder if the illness doesn’t respond to other treatments. I tried it several years into the process; unfortunately, it did make me sick – or, more correctly, reduced my immune response sufficiently that I kept getting sick – and caused very horrible side-effects for me (severe, painful erythema nodusum) that aren’t even on the list of side-effects for Imuran! So I’m not a good person to ask about it.</p>

<p>I really think it might be a good idea for you and/or your son to join the Crohn’s DiseaseForum support group/message boards. It’s very active and there are a lot of very informative threads about medication and doctors and surgery and lifestyle and everything else, and a lot of sympathetic people. (Although, as I said earlier, reading some of the stories of people with intractable illness was just so frightening, at least to me, that I try to avoid such threads as much as possible!) The link is [Crohn’s</a> Disease Forum - Support group and forum for IBD, Ulcerative Colitis and Crohn’s Disease](<a href=“http://www.crohnsforum.com/]Crohn’s”>http://www.crohnsforum.com/)</p>

<p>Donna</p>

<p>PS: I’m not sure pooh-poohing worms is anything that any GI doctor wouldn’t have done; after all, it’s really only in the experimental stage. There are lots of things that get tried that turn out not to be terribly effective. I’ve been lucky enough to have only two GI specialists in the 30+ years since my diagnosis, both of them very well-known gastrorenterologists at teaching hospitals/medical schools here in NYC (one at NYU’s hospital for the first 20 years until he retired, and the other at Mt. Sinai for the last 10), both of whom I always trusted to know everything about what was going on. I guess that’s one of the advantages of living somewhere like the New York City area, but I do believe having a good, highly-qualified doctor at a teaching hospital (if possible) – empathy is important too; both of these doctors have been very kind people, with wonderful bedside manners, unlike my stereotypically arrogant, cold, non-conversational surgeons! – is one of the most important things for Crohn’s or UC. At least, it was always very important to me to have a doctor I trusted and who made me feel like I was in good, safe hands, perhaps especially when I was in my early 20’s and entirely on my own with respect to medical care and decisions. (More recently, a GI doctor I tried after the first one retired, a fairly young doctor at Beth Israel, essentially resigned from my case after a while, because he simply didn’t believe he was qualified to be my doctor given how difficult and unusual things can be for me – I guess I should take that as a compliment! – and referred me to my present doctor.) So I hope you’re able to get an appointment with a more knowledgeable specialist at a medical center soon.</p>

<p>As far as diet goes, I’m not the person to ask about that either. In all these years, I’ve never been able to detect any relationship between what I eat and recurrences of the disease. (Yes, I know that eating spicy Asian food can make me feel not so great for a while afterwards, but it never has lasted more than 12 hours or so, and I love it so much that sometimes it’s worth it!) </p>

<p>And once the disease actually recurs, and is active, nothing other than the proper medication helps, and I can’t eat anything anyway.</p>

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<p>Not Ensure–too much dairy, too high fat. I forget the name of what I bought, it’s more of a citrus taste.</p>

<p>I take MSM every day. Three 1000mg capsules every morning. With these I am most without symptoms, and don’t need the Pentasa. I am concerned about supplements before the meds get things under control, though. I like soy milk, DH likes protein powder, yougart and soy milk smoothies (usually adds some frozen fruit, but be careful with that–it adds a lot sugars, which can be hard to digest).</p>

<p>If you have not talked to a nutritionist, try plain, easy foods…chicken with rice, snap peas, pasta with just a little sauce. Eggs and toast. Avoid high fat, high sugar content. Popcorn works for some people, is a nightmere for others. </p>

<p>I am sure you are both frustrated at this point. Hang on.</p>

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<p>Compmom, I wish I read your post earlier today. My S had his appointment with our doctor today. His office originally composed a letter stating the date of onset of the diagnosis and the general course of treatment and issues he did not include any accommodations but the secretary told me that if I wanted it to say anything additional to let them know. I basically composed an additonal paragraph with the requested accommodations but you had a few that weren’t on my list. Oh well. They will revise the letter and the disabilities office staff told me that a specific accommodation doesn’t have to be on the list in order for it to be provided. I am going to copy what you wrote and add it for discussion with the couselor. I expect this is also helpful to the OP. BTW, I left discussion of nutrition and supplements out of our conversation and things moved along much more pleasantly. </p>

<p>Interestingly my S asked about the differences between Crohns and UC and then based on what I think DonnaL said and another person I know told me, I asked the doctor if we knew for sure that the diagnosis was UC. I thought that the biopsies taken during the colonoscopy were diagnostic. Apparently not, he told me he would run some bloodwork today but that the course of treatment was basically the same. (I guess because in S’s case right now only the colon is involved. I did surprise me that this testing wasn’t automatic, but for now so far so good.</p>

<p>Mom2M (I’m sorry Whattodo, I don’t mean to hijack but I hope this is pertinent for both of us), among the supplements I have heard about are MSM, fish oil, calcium, and probiotics. I initially started S on fish oil but based on some comments about it possibly contributing to diarrhea and my S being overwhelmed with pills, and him getting placed on a high does of prednisone that I assumed would kill any inflammation anyway I backed off. The question I initially tried to ask my doctor was what supplements would support the medications to make his treatment most effective but that discussion was blown in a ridiculous direction during our first visit. It sounds like you are able to cut out medication to some extent. I know that that is a long way off or may never be possible for my S but and what point did you start taking supplements and then did you gradually taper off of the medication. At this point I’m just wondering if the supplements will make the transition off of prednisone more successful and help avoid the possible need for immunosuppressants.</p>

<p>Also, let me add to what I have read regarding specifc foods already mentioned. I don’t think there are any foods that are always a problem and I guess that is why the doctors prefer trial and error. But when all of this is new to you and some foods present major setbacks having some guidelines is important even if more foods that needed are eliminated. With regard to smoothies, the book that I keep referring to supports mangos but berries particularly strawberries and raspberries can present a problem. I have actually shared strawberries with my son cutting to outside with the seeds off and adding it to my dessert and giving him the inside. The one green vegetable that my S both likes and was suggested in the book was asparagus, avacados also seem to be really gut friendly.</p>

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<p>We had a very informative visit with a nutritionist and have a lot of ideas to try.
My son had a little higher energy and appetite today. He will call his prof tomorrow and let him know that things are up in the air.</p>

<p>I found this article about complementary therapy that others might be interested in.
<a href=“http://annalsgastro.gr/index.php/annalsgastro/article/viewFile/639/476[/url]”>http://annalsgastro.gr/index.php/annalsgastro/article/viewFile/639/476&lt;/a&gt; Regarding the worms, I was very surprised that the GI doc hadn’t heard of this. If you’re interested, read Will worms really cure Crohn’s? [Will</a> worms really cure Crohn?s disease? – Radford-Smith 54 (1): 6 – Gut](<a href=“http://gut.bmj.com/content/54/1/6.full]Will”>http://gut.bmj.com/content/54/1/6.full) “Treatment of Crohn’s disease patients with the intestinal helminth Trichuris suis appears safe and effective in the short term, even with concurrent immunosuppressive therapy”</p>

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<p>My point was that the “worm” therapy is in the trial stage; I’ve seen no indication that there have been further trials or that it’s been approved for treatment. Even that one article is from 7 years ago, and concludes “It is too early to determine whether this form of treatment will be safe and effective for larger numbers of patients with IBD—further controlled randomised studies will be required to answer this.” There are hundreds of studies like this, and I don’t know if GI doctors read about all of them. And doctors aren’t entirely wrong when they say that there are lots of “miracle cure”-type remedies that patients read about on the Internet and bring up all the time.</p>

<p>That doesn’t change my opinion that you should try to find another doctor to consult.</p>

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<p>spectrum2, I take the MSM every day. Started at the suggestion of a DR friend/client when I was experiencing inflammation in my back. (Actually took 3 capsules morning and night–frankly I would have swallowed worms or anything else to get out of pain.) The MSM was easy for me to tolerate, and I was having some side effects on the Pentasa (I have been on Pentasa since it was developed–I was part of the drug approval trails for Pentasa.) So I started taking the Pentasa every other day, and just sort of tapered off. I have a great doctor, last colonoscopy was amazingly healthy. So he’s ok with this. I have Pentasa in the house, take it if I feel “off” or if I have to go somewhere I can’t control the food (wedding, banquet, etc).</p>

<p>Do keep in mind I really have put a lot of time/energy/thought into managing this disease over the last 25+ years. I HAD to learn to manage stress differently. And it wasn’t easy. </p>

<p>When was found to have UC, they put me on a strong sulfa drug and prednisone. The sulfa made me sun sensitive, and my hair fell out. Nice for young woman. But my stomach stopped hurting and I could function again. When Pentasa came out, I was happy to try it. That stuff is a miracle in a capsule. So is Imoduim. I learned to deal with stress differently. I figured out what foods worked and what didn’t (mostly low fat, moderate fiber, watch the dairy. And no salad. Do not drink/eat anything with fake sugar in it…diet coke is close to poision for me.) I take a calcuim capsule every day (that has some fiber, too). </p>

<p>Ok, I don’t mean to write a novel. But you can get this under control, and then live a fairly normal life. I’ve gotten married, had my daughter, etc. The doctors gave me all kinds of grief about becoming pregnant. Accept for my GI. He told me later he figured I would just will the baby and I through. And I did. Sick as a dog after she was born, but it was ok to be sick then. Some days are more challenging than others. I am NEVER without Imodium and Pentasa. I mean NEVER. It’s in my purse, in the cars, at my dad’s and my sister’s. I watch what I eat. But I also cheat on the diet. I really can tell when a flare is coming. I clean up my diet, take Pentasa and extra MSM, watch for stress.</p>

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<p>I’m glad your son is feeling somewhat better and that you got some nutritional insight. The article regarding herbs was very interesting. I wish there was more solid research done in this area. I forgot about Aloe Vera but this is another one that I have heard about. </p>

<p>As for the worms I tried to Google it after my doctor mentioned it and I think Dr. Oz may have mentioned it and that may be why the doctors were getting more questions about it. Aloe Vera, Fish Oil, licorice extract, I’m kind of comfortable with a try it and see approach if there is some evidence to support it. For Worms, I’d like to see solid evidence!!!</p>

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<p>Re worms, yes, most doctors will laugh. But there are people who are already getting them from Canada and Mexico. Anyhow, here is another link. [Ovamed</a> | better medicine through biology | Ovamed](<a href=“http://www.ovamed.org/]Ovamed”>http://www.ovamed.org/)</p>

<p>The thing is, no matter what the illness, many times patients do actually know more than doctors in terms of research. Some of us make it our business to be informed and, sadly, some doctors do not keep abreast. This was driven home to me when DD’s East Coast doctor ordered a colonoscopy but told her she could do it on the West Coast when home. (The prep is not something that is easiest to do at a dorm). Anyhow, East Coast More Cutting Edge Doctor insisted that she get a biopsy on the colon no matter how it looked to see if there was microscopic change. DD explained that to Stayed Too Long at the Party West Coast Doctor and he nodded sagely. Right before she went under she reiterated, “Remember, we’re sampling the colon because my other doctor wants that.” (Yes, other doctor should have probably called but she considered it routine which, turns out, it was on that side of the country). He nodded again. Afterward when he was talking to me I asked if he biopsied the colon and he said no that it looked fine. When I told DD, she was still hooked up to everything. She firmly said she had no intention of getting out of that bed until he came back and finished what he had said he would do. She was adamant. I asked to see the doctor and they told me they didn’t know where he was. I said, “I know where he is. Next door. Get him, she has a right to talk to him.” He came in furious screaming about how he doesn’t biopsy healthy tissue. I tried to calm him down and said, “She’s upset…” and he said, “Then take her to a psychiatrist” and stormed out. It was awful and DD would not get out of the bed until I reached the doctor on the East Coast who was totally surprised – she couldn’t believe that anyone didn’t know this was standard protocol. (Needless to say, we never went back to West Coast Doctor and I came very, very close to reporting him for his behavior.) All of which is to make a few points:</p>

<ol>
<li><p>If you have two doctors because of college, make sure they communicate directly on anything important. It’s extra effort on their part but you can see from my story why it matters.</p></li>
<li><p>Don’t assume your doctor knows everything. A lot of them will not know some of the things that are going on in research. </p></li>
<li><p>Be your own advocate. You have to be your own advocate and it’s often a good idea to bring someone with you to any appointment that is not routine for a second set of ears.</p></li>
</ol>

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<p>Mom2M: Interesting! Among the supplements I mentioned to my GI doc in that first visit was MSM. (I bet that was because you mentioned it.) I was aware that it is used in arthritis and joint pain but the doc didn’t know what it was. I told him and he said to me something to the effect of, so you think that because it is used for arthritis that it will work for the colon. He said that in kind of a mocking way which was really discouraging because I felt like the way he was talking to me he was making my son lose confidence in me. I didn’t give him a reply but really it’s not so far fetched. Prednisone is used for all kinds of inflammation including arthritis. It sounds like you sort of stumbled on the MSM for your UC and were then able to wean yourself off of the Pentasa,(which from what I can tell is similar to Asacol, is that right?). Thank you for sharing your story. It sounds like for now you use the Pentasa as an emergency medicine, is that right? </p>

<p>I know we are years away from even considering weaning off of the medication but I have heard through your story and others that some people can do this with supplements. It is encouraging but I won’t share that thought with my son’s doctor right now :). For now I am still wondering if there is anything that my son can do to support the effect of the meds to avoid going on immunosuppresants because if that is possible it is definitely preferable. For now he has a few more weeks of 10mgs of prednisone and 1600mgs of Asacol 4x/day and our fingers are crossed with this. Truely even this is amazing as my S can be happy and live his life now, where when he was ill he could barely get through school and was loosing weight fast. Immodium didn’t touch the problems he had but Lomotil is the friend he keeps with him but has used very few of since starting medications. Now that he just graduated from HS I can say this, Asacol and Lomotil were in his backpack every day. He wasn’t supposed to have meds on him in HS but there was no way he was going to rely on going to the nurse for these! </p>

<p>As for stress I do worry about how this will affect things in college but up until now it has never seemed to be an issue in his life and he is the last person I would suspect for a GI disorder. Literally until he got sick until February he could eat anything.</p>

<p>Mimk6: Wow,good point we will keep that in mind!.. I tried to use your link to the Worm study info but I couldn’t get to it.</p>

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<p>Spectrum2, Just want to make clear that my family is not dealing with Crohn’s. I am experienced dealing with college disabilities offices, yes, but the accommodations I listed were just from memory (from this thread) or common sense and I did not research them!</p>

<p>Also, while you can probably easily add to the list, it probably is not a disaster to not have every possible accommodation on a list. The important thing is for the student to be registered, and registered for a particular disability or condition. The college does tend to do what is needed, and sometimes that includes some improvising.</p>

<p>I have learned a lot on this thread. Every condition has its own issues and subculture. The forums for particular problems can be alarming, but they still are the best resource, in my opinion.</p>

<p>And mimk6 and Donna have it right: you have to guide your own care. It’s tough, but true.</p>

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<p>spectrum 2 I took the MSM for back pain originally (whole long story, short version: I saw a doctor who could not tell the difference between a sprained ankle and ssciatic nerve issues). The client/friend DR had joint replacment surgery, was doing really well and expressed concern about my mobility. I asked if the MSM would bother the UC, she felt it would help the UC. Ok, I gave it a try. But at that point I was on very minimal amounts of Pentasa. (FYI the DR takes about 12 capsules a day–that seemed like a lot to me). Oh, I buy the MSM at Sprouts Market, but it’s really easy to find in most supplement/vitamin aisles. My DH takes it “just because”. He actually takes more supplements than I do, just precautionary type stuff. </p>

<p>As far as the emergency med nature of Pentasa…that’s close. I do take it when I’m really stressed…like now. There was a death in theextended family, I will be helping with estate issues that are a mess, multiple big events this week that I am either in charge of or helping staff. Pentasa will see me through. It doesn’t have to be negative stress, it can be what I call positive stress (lots to do to celebrate D’s accomplishments and graduation). I hope that makes sense.</p>

<p>Whattodo2 I am glad things are even slightly improving. Being able to eat is a big plus. I hope we are all sharing is helpful. There is light at the end of the tunnel. You do have to be your own/your son’s best advocate.</p>

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<p>whattodo2 - I just wanted to mention this since you didn’t seem that thrilled with your son’s GI. With Imuran it is very important that your son get periodic blood tests to measure certain metabolites to make sure they are in a safe range. Your GI should set up a schedule with you. If the levels are off they may have to change the dosage or stop the medication altogether.</p>

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<p>In addition to the above information regarding Imuran patients should also avoid some pain relievers such as ibuprofin.</p>

<p>If your son decides to take an anti-diarrhea medicine like Imodium use it as little as possible because you don’t want to slow his colon down too much and have him end up with toxic megacolon.</p>

<p>One last thing taking aloe vera orally can act as a laxitive so it may cause its own problems.</p>

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<p>Mom2M-- yes I do appreciate all the sharing.</p>

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<p>Thanks for the Imodium note proudwismom. Good to keep in the back of my mind. For me, Imoduim is emergancy med–ie I have to get from point A to point B. Point B being home…Haven’t taken any in a really long time. But it goes everywhere I go.</p>

<p>Hope today is a little better whattodo2. Youhave your son watch the caffine as well. I didn’t think of it until now, but it can be a problem for some people.</p>

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<p>compmom: Thank you for sharing. It seems that while you may not have first hand knowledge of IBD you obviously are well aware of the kinds of accommodations that can be requested. While I thought of making profs aware that the student may need to leave the classroom the part about getting a notetaker hadn’t occurred to me, what a good idea (that I hope we never need!) I expect that we will be able to sort that type of thing out when meeting with the counselor we probably don’t need to change the letter but since this is very new understanding the types of requests for accommodations that can be made is very helpful.</p>

<p>Mom2M: Thank you for clarifying. I think I need to get some MSM myself!</p>

<p>Whattodo: I second what Mom2M said hopefully your sees improvements one day at a time.</p>

<p>We had a slight setback yesterday. My S had a mild increase in symptoms last week but it seems it was the result of drinking a smoothy with hidden lactose in the mix. He called the doctor and had his does increased from 1600 mgs 3x/day to 4x/day. Last night although he rarely gets headaches he had a really bad one that came on suddenly. We’re thinking it may be because of this ultra high dose. We have a call into the doctor’s office to see about cutting back down to 3x/day but haven’t heard back yet. I’m thinking he will cut back if we don’t hear anything and hopefully there won’t be any regrets. Just the thing a couple of days before leaving for 10 weeks to be a camp counselor. One day at a time :).</p>

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<p>

</p>

<p>this explains why infliximab works (see link below) and why it’s still an infectious agent, namely MAP. They need to change their strategy and start to target these bacteria with antibiotics, it’s irrelevant if MAP or E. Coli is the caustative agent of Crohn or just a side effect if they are causing the inflammation. It doesn’t matter what excactly causes crohn, but it’s the bacteria that are causing the havoc and inflammation. There could be hundreds of factors at play, NOD2 genetic factor, overhygene, lack of vitamin D and A, exposure to dairy, etc. (and autoimmune disease it is not though, that’s a very old theory that is based on 0 evidence)</p>

<p>link: [url=<a href=“http://www.slideshare.net/aureliex/science-11948335]Science[/url”>Science | PDF]Science[/url</a>]</p>

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<p>Thanks, kinyxx. Maybe this explains why my gastroenterologist at Mt. Sinai seems to believe so strongly in the value of long-term antibiotic therapy, at least for me, in addition to the budesonide, despite the obvious risk of resistance to those antibiotics (maybe that’s why he switches antibiotics every couple of years). Interestingly, every time I’ve been hospitalized in the last decade, and have had to explain to nurses and younger doctors that I’m taking antibiotics long-term, not just for some recent infection I happen to have, they’ve acted like they’ve never heard of such a thing.</p>

<p>Of course, if you read people’s stories on that crohn’s disease forum I linked to, there are plenty of people for whom budesonide, and antibiotics, and every other possible kind of treatment, do no good at all. It seems that crohn’s is a very individualized disease, and not something for which any one treatment works for all or a substantial percentage of patients (other than, perhaps, prednisone, but that just treats the inflammation itself, not its underlying causes).</p>

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<p>To the OP: I just want to weigh in to support you and your son. I have UC and Crohn’s runs in my family (sister, one of my nephews – son of a brother of mine). UC doesn’t appear to be heritable, but Crohn’s often is (and one demographic that seems to have higher risk of Crohn’s is Ashkenazi Jews).</p>

<p>For both of these diseases EVERY CASE is different, in terms of symptomology, progression and stabilization, dietary restrictions, and medications. My dx for UC came about 10 years ago, and since then I have taken daily doses of ASACOL, an immunosuppressant but non-steroidal drug. There are no specific dietary restrictions for me, i.e., nothing is prohibited absolutely; but I do watch my diet in various ways following the doctor’s general instructions. And I do have regular colonoscopies. I have very rare flare-ups (I’ll spare the details) but nothing that has prevented me from a full work and travel life; and I’ve never missed a day of work due to this illness.</p>

<p>My sister takes NO drugs for her Crohn’s and has managed without any operations. How? She follows a very strict diet, which involves to some extent the kind of restrictions that one might have for celiac disease. She relies on the “specific carbohydrate diet”: [Recipes</a> for the Specific Carbohydrate Diet - Crohn’s disease, Ulcerative Colitis, Irritable Bowel Syndrome, Celiac, Autism](<a href=“Home - scdrecipe.com”>http://www.scdrecipe.com/) . And she also happens to follow a strict Kosher diet as well. So far this has worked for her. She’s about 50 years old. Will it work forever? Who knows?</p>

<p>My nephew (my brother’s son) has had real problems, multiple operations and resections. I do not know about his meds or diet. But Crohn’s presents itself differently for him than for my sister. This variation in symptomology and treatment is very common with all of these IBD’s. He’s had a fine work career, a family, and so on. But he’s always at risk of another serious flareup, and in part because of the resections he needs to be within ready reach of a bathroom pretty much at all times.</p>

<p>I want to reinforce the point made by others: the need for a period of adjustment and trial-and-error – of diet and meds – over a period of months, and realizing that some meds might lose their efficacy over time and need to be switched over to something else. There’s no reason why your son cannot head to college in the Fall. But it’s really really important, it seems to me, to stabilize his dietary and drug regimes and to get his weight back up before he heads away to college.</p>

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<p>It is true that every case is different. My daughter was treated for months at a time by the strongest antibiotics and it didn’t work. In fact the failure of antibiotics along with budesonide and 6MP was what led to Humira. </p>

<p>It’s very important to remember something when you hear about how one person controlled with diet, another needed Remicade, etc. In and of itself, Crohn’s varies in severity from patient to patient. Some people have milder forms of the disease and can get by with 5ASA and dietary modifications and some people have very severe cases that are not going to be responsive to less drastic measures. Some people will go into remission for years, some won’t. I only say that because it is so individual and you have to recognize that in order to not get caught up with what worked for someone else being a magic treatment which can lead to an emotional roller coaster. It might be for them. It might not be for your son. That’s why a GI doctor who can figure out what will work for your son’s case is so important. I read somewhere that there is research being done to help physicians identify factors in the disease (similar to how they identify types of breast cancer and plan treatment accordingly) so that treatment can be more effectively targeted to individual patients.</p>