<p>My S was diagnosed with ulcerative colitis a couple of days ago after having problems for a month. He had a colonoscopy and we received the diagnosis and medicatons. He has begun taking these and we are hoping for the best. As we begin the learning process I am not even sure I know what to ask just that I think it would be helpful to hear how this disease impacts day to day life and what we should know that we don’t even know to ask. BTW my S is a senior in HS so we have a few months to figure this out and then he will be on his own to manage it in college. Any help you can offer is much appreciated. Thanks in advance.</p>
<p>A google search would have found some stories but:</p>
<p>[Ulcerative</a> Colitis and College Life: Avoiding Drinking and Smoking](<a href=“http://www.webmd.com/ibd-crohns-disease/ulcerative-colitis-10/uc-college-food]Ulcerative”>Can You Drink Alcohol if You Have Ulcerative Colitis?)</p>
<p>[Ulcerative</a> Colitis and College: 6 Ways to Manage Symptoms](<a href=“http://www.webmd.com/ibd-crohns-disease/ulcerative-colitis-10/uc-college-life]Ulcerative”>How to Handle College if You have Crohnâs or UC)</p>
<p>[Heading</a> Off to College - Crohn’s Disease and Ulcerative Colitis](<a href=“http://ibdcrohns.about.com/od/parents/a/ibsibdcollege_3.htm]Heading”>Inflammatory Bowel Disease (IBD): Overview and More)</p>
<p>[Life</a> of a College Student Who Also Has Ulcerative Colitis](<a href=“http://www.ihaveuc.com/life-with-uc/]Life”>http://www.ihaveuc.com/life-with-uc/)</p>
<p>There were many more besides that that i did not read.</p>
<p>^^^^^So sorry to hear about that!</p>
<p>In addition to those links above, I would look for a support forum. I think in the colonoscopy thread someone mentioned one. UC affects all of the digestive tract, but I believe there is a colon forum where you could get information and support from others who suffer from UC. I’ll see if I can find it.</p>
<p>EDIT: okay, it was a colon cancer support forum, but I bet if you google and search around, you can find a forum which is specifically designed for people with UC and Crohn’s.</p>
<p>Here is one:
[url=<a href="http://www.ibdsucks.org/]Crohn’s">http://www.ibdsucks.org/]Crohn’s</a> / Colitis Home Page<a href=“I%20don’t%20know%20how%20to%20make%20it%20a%20link”>/url</a></p>
<p>I have it, and have kept it under control for 10 years with asacol. PM me if you want. I have never figured out if a particular food sets me off, but by brother swears yeast is a problem, and thinks all the beer and pizza in college were his problem.</p>
<p>Hugs to you and you son!</p>
<p>[CCFA.org:</a> Home](<a href=“http://www.ccfa.org/]CCFA.org:”>http://www.ccfa.org/)</p>
<p>Wishing the best for your son.</p>
<p>I was diagnosed with UC after my freshman year in college. It’s important to get the symptoms under control, but there are much better targeted medicines now (Asacol or Lialda vs. Azulfidine 40 years ago). Other than having to get a colonoscopy every few years I have had no long lasting health impairment and don’t feel it has been a restriction on life activities. It did get me a 4F from the draft, though. Feel free to PM me if you’d like to follow up.</p>
<p>As a nurse, I would recommend that you find a really good UC clinic at a major teaching hospital for your son to become an established patient. Like the staff and make sure they are accessible to you, your son, and MDs that may treat him at school. Make sure the school clinic has all of the md contact info and UC info you can provide them. Hopefully, they will provide bloodwork and other monitoring that may necessary while at school. If you are lucky, they may have a dietician/ nutritionist on campus that he can work with too. Also, if the UC clinic that you find will not/ cannot provide primary care for your son, ask them for a referral to a MD in your network that they feel is good with UC patients. I am sure that you were told this is an autoimmune disease, and it requires monitoring by a heath care prof that understands all of the idiosyncrasies that the diagnosis brings with it. Good luck with this, as with most of these types of diagnosis, the key is good medical care, educating yourself and son, and compliance with medical recommendations. </p>
<p>Sent from my DROID RAZR using CC</p>
<p>I am not a medical person, however, I do have family and friends diagnosed with colon and other health-related issues, so we have been reading a lot to try to get educated. Some information that we have come across suggests investigating Gluten sensitivity to understand if there is a relationship to the colon issues. My sister just found out she is gluten sensitive and her doctor suggested to her that if she continued to eat gluten-based products (wheat, rye, barley) that her colon would continue to rebel and over time she would become even more unhealthy. Her doctor also suggested that close relatives also get tested. As a precaution, I am waiting for the results of a gluten anti-body test myself.</p>
<p>These are two very good resources for colitis. </p>
<p>Breaking the Vicious Cycle by Elaine Gottshall</p>
<p>Crohn’s Disease and Ulcerative Colitis Fred Saibil</p>
<p>Good places to start.</p>
<p>Thank you all for the suggestions. Over the next few days I am going to try and compile a list and gradually share the information with my S. I don’t want this to overwelm him. Vlines, that is an interesting point you made about locating medical facilities in the vicinity of the college. My S is deciding between two schools one very urban the other more college townish. I had not considered the implications of the decison from a medical perspective before. Thanks for the links Icedragon, there is some good information there. What did you put into your google search? Reddoor I have been wondering about books I will look for these. Thank you for the suggestions.</p>
<p>If any of you have information that falls into the category of, I wouldn’t have thought of this if I had not lived the experience I would like to hear it. We don’t have a lot of time before my S is on his own. For now we still have our fingers crossed that the meds will help normalize things for him at least in the shortrun. He is noticing improvements since he started them on Thursday but he still has a ways to go.</p>
<p>DIET! Keep a journal of all foods eaten. Try cutting out milk; try cutting out gluten; pay very close attention to all possible food links to symptoms. Your doc’s will likely not tell you to do this but you may find very good relief from eliminating problem foods.</p>
<p>Hugcheck: I have seen this idea of keeping a food diary mentioned before. I am wondering if this is possible to do before he is really in remission. For now we are trying to keep his diet to items that are generally unoffending but of course there are so many offending foods we haven’t eliminated them all. When you eliminate a food for how long to you test it before you decide if this is a good or bad change? Can this be done in the midst of a flare up. Right now this is his first episode.</p>
<p>I know that a gluten free diet helps with chrones and other digestive diseases, perhaps its worth a try?</p>
<p>Yep. There is a fairly widespread school of thought that gluten/wheat are major contributors to intenstinal issues. If I were dealing with this, the first thing I would try is cutting grains out of my diet and see if there is an improvement. Not much to lose from that kind of trial.</p>
<p>Robb Wolf is a major proponent of this approach. He had similar issues so badly that they were ready to remove parts of his large intestine. It was bordering on life-threatening. Cut out grains and the problems resolved. Glutten-driven inflammation, apparently. The recent book, Wheat Belly, is another resource that puts forth this hypothesis.</p>
<p>I don’t know how long it takes to rule out a food as inoffensive. I do know that for my tummy, which is lactose intolerant, I can turn the pain on and off in a matter of hours (on if I eat even the smallest drop of milk as in coffee) and off (a couple of days). I think for a damaged intestine one would have to wait for the lining to heal. But I have heard ppl say they can tell within hours if something is hurting them. Healing takes a bit longer. Keeping a diary helps because it is sometimes v. hard to know what’s in your food. For example, who would ever expect there to be dairy in soy yogurt. It took me a bunch of rounds of eating the stuff to really note the link to tummy upset and when I finally read the label I was shocked to find it was milky stuff.</p>
<p>Also, there can be very odd food related symptoms. For example, my dad figured out he got headaches from eating raw onions. My sister gets headaches from soy milk. I have a friend whose skin breaks out severely from eating onions or garlic. You don’t have to go into allergic shock to have lesser but still important symptoms from foods.</p>
<p>Spectrum- this website is great for UC and FAP support…</p>
<p>J-pouch.org</p>
<p>A lot of the people on that website have UC and can answer any and all questions about UC. If your son gets worse and needs to have the surgery for a j-pouch, that site has people that can walk you through everything that can happen.</p>
<p>Good luck.</p>
<p>Chuckledoodle
Dx FAP 1997
J-pouch 2004</p>
<p>But if you decide to cut gluten out, you need to be careful, it is hidden in many many things.</p>
<p>I’ve been glutenfree for nearly a year now and i’ve just gotten a hang on it.</p>
<p>Also i agree with foods not giving an exact allergic reaction. My reaction to tomatos is my body feeling like it is on fire (later confirmed in an allergists office via scratch test).</p>
<p>I’d break the diet down to basics, meat veggies fruit, then slowly add back to see what does what and how.</p>
<p>We had a friend whose some had this, possibly linked to his use of acutane. Now seems to be doing fine several years later…</p>
<p>I was diagnosed about 30 years ago. At the time, I was so sick the Dr was sure it was Crohn’s not UC. Now, it’s almost a non-issue in my life. Feel free to PM me.</p>
<p>The big factors for me: manage stress (not eliminate stress, just learn to manage it). Low fat diet. I take MSM (from Sprouts) twice a day. I was in the drug trials for Pentasa (mesalazine)…now I take it only during flare ups. </p>
<p>For everyday life now: carry imodium everywhere. I mean it. It’s in every purse, car, backpack, at my parents and inlaws, my sisters, etc. If a problem starts, hit the imodium.</p>
<p>For everday life when I first found out…avoid activities that are jarring (ie, tennis, jogging, etc). A change of clothes can be a lifesaver. Find the restrooms of frequently visited locations. I still look at a map of amusement parks, resorts, shopping malls etc to locate all restrooms asap. </p>
<p>I eat a fairly low fat diet, but cheat at least twice a week (one Italian sausage a week, and an occasional fatty dessert). Other than that, as long as the fat combinations work I’m ok. (ie ONE slice of pizza). I do not drink milk at all. I do not drink apple juice–actually most juice is a problem for me—concentrated sugars. I stock Gatorade and water so I don’t dehydrate if I get “sick”. I would happily eat chicken noodle soup in the middle of summer, so I always have it in the freezer. If I’ve been eating too many high fat items, it’s soup for a day.</p>
<p>I hope this helps. I was truly svery, very sick. Since then, I’ve recovered, got married, had my daughter (had to go off meds), etc. Occassional, mild flare ups are about all I deal with now, well and the colonoscopys.</p>
<p>Foods do not cause Crohn’s or ulceratve colitis although foods can exacerbate symptoms by further irritating tissue inflamed by disease. Like tomato sauce or orange juice can irritate a canker sore. If symptoms are caused by exposure to food it’s a disease process other than Crohn’s or colitis.</p>