Crohn's Disease: advice?

<p>My 19 year old son just came home from college and was diagnosed with Crohn's this past week. </p>

<p>I am looking for advice on 2 issues (below). I'm especially interested in hearing from people who have Crohn's or have children with Crohn's or similar serious medical conditions. Advice from MDs would also be really appreciated.</p>

<h1>1 The Summer: Live at home or Live away</h1>

<p>He previously signed a summer lease to live in an apt in his college town which is 6 hours away. He is also signed up to do a summer research internship with one of his professors. I'm concerned because he is currently very underweight (BMI 1st%), and he will need to shop and cook for himself, which he's never done before. He is just learning about the disease and doesn't know what foods he can tolerate. In addition, the town has a dinky hospital. A tertiary care hospital is an hour away but there's no bus or train and he doesn't drive.</p>

<p>I want him to have the opportunity to be independent and work in the lab. On the other hand, I'm afraid he'll lose more weight, get sicker and/or have difficulty staying on top of his medical condition (monitoring side effects, keeping apts etc.) He also has ADHD.</p>

<h1>2 The Fall: Return to school or ...</h1>

<p>These are some options that we've come up with:
1. medical leave
2. medical leave and take 1 or 2 classes at a local college or university if possible
3. return in the fall part-time and see how it goes
4. return in the fall full-time and see how goes
5. transfer to a school closer to us or in our town</p>

<p>He took 2 incompletes the spring semester b/c he felt too tired and sick to keep up with his work.</p>

<p>What does my son want?</p>

<p>He'd like to try to do the research and return to college. He is also worried about how his health might interfere with school.</p>

<p>This should be a good resource.</p>

<p>[CCFA.org:</a> Home](<a href=“http://www.ccfa.org/]CCFA.org:”>http://www.ccfa.org/)</p>

<p>I don’t have crohns ( although I have friends who do), but I help raise money for Camp Oasis, a camp for kids with crohns.
[CCFA.org:</a> Mike McCready Speaks for CCFA](<a href=“http://www.ccfa.org/about/news/mccreadypsa]CCFA.org:”>http://www.ccfa.org/about/news/mccreadypsa)</p>

<p>Take a deep breath. When do you have to make these decisions? Do you have a week or so to process/gather information? What does the Dr. suggest? </p>

<p>I have Ulcerative Colitis. It’s a different disease, but chronic, and when I was diagnosed, the dr was sure it was Crohn’s. It took a while to get it all under control. </p>

<p>Can you precook meals and then deliver them on weekends? Or, if he is home for a while compile a cookbook of easy to cook healthy foods? Perhaps this will help:
[Crohn’s</a> Diet](<a href=“Learn About Crohn’s Disease and Ulcerative Colitis | Crohn’s and Colitis”>Learn About Crohn’s Disease and Ulcerative Colitis | Crohn’s and Colitis)</p>

<p>For me, no fluid milk at all, limited dairy, low fat, reasonable fiber works well. For a while, I ate chicken and rice. Or pork chops and rice. Or chicken and orzo with a tiny bit of butter. Really plain meals. After things got under control, I could experiment with wider food choices…but UC is different than Crohns. And every single case of either is different. Oh, and under no circumstances sugar substitues. I cannot tolerate them at all.</p>

<p>I hope this helps…I know how life altering some medical diagnosis can be. Once the shock wears off, you can move forward. It took me a while, but new meds, learning to manage stress, different eating all helped. It’s been 25+ years. Got married, had my D, etc. No hospitalizations (again UC not Crohns, but still good). He needs know that you know he will be able to handle this, so he can believe it himself.</p>

<p>Thanks Mom2M </p>

<p>My son hopes to be go back in a week; he told the prof. he’d start June 4th.</p>

<p>It’s too far for us to brink premade meals to him. He’s mainly a vegetarian right now so there will be lots of changes.</p>

<p>We’ve only met the doctor briefly and he didn’t seem to have an opinion about going or staying but he doesn’t know my son at all and didn’t seem used to teens.</p>

<p>Mom2M-- I’m curious about the misdiagnosis as Crohn’s. Did you have ileitis?</p>

<p>I have a friend whose son has Crohns, and know a few others. If it were my son, I’d want him home this summer. Coming to terms with what he can and cannot eat/do etc. is difficult for any 19 year old boy, and given his current weight, etc., he needs to focus on that now.
It’s going to take some time - possibly trying different meds, different food patterns etc.
I know what it’s like to be a mom with a seriously sick child - part of you wants to wrap them in a bubble, and part of you wants to let them do everything that they can because you feel awful that they are dealing with an illness and have so much to deal with.
(((((((hugs)))))))</p>

<p>(I just remembered, one of my good friend’s daughter’s was diagnosed with Crohns while in college - she’s done very well with meds and is healthy and strong and running marathons now.)</p>

<p>Has the doc who diagnosed your son indicated the need for frequent doc visits this summer to stabilize your son? I would think that would be the priority, which would mean staying close to home this summer. Returning to school in the fall should depend on how much weight your son is able to gain/maintain this summer, and finding good, consistent medical practitioners to handle your son’s case close to college. Does your Doc have any colleagues in the college area he can refer you to? Or, can he help figure out where your son should go, and work to establish that professional relationship/set up the first appointment? Crohns can be very unpredictable, and land a patient in the hospital really quickly. You need to be proactive on having an emergency plan in place.</p>

<p>What2do - My son has Crohn’s and is in college and has interned each year. However his Crohn’s was under control BEFORE he left. </p>

<p>What are his symptoms now and what meds is he on and how long has he been on them.</p>

<p>Also, if you are not comfortable with that doctor - go to a new one. Crohns will be a long term medical condition and you have to be comfortable with the doctor.</p>

<p>I absolutely think that your son should be home this summer to get the Crohn’s in check before the fall semester and also to sort out what foods are “good” and what are “bad”.</p>

<p>And many times it takes a while to see which drug works best for your son.</p>

<p>My daughter was also diagnosed with Crohn’s disease at the age of 19. At the end of her sophomore year, the GI doctor she was seeing in the town where she attended college (3,000 miles from home) realized it might be Crohn’s. She took the diagnostic test at home and got diagnosed here. I can’t really remember if she was here (west coast) or on the east coast that summer. I would suggest you son stay home this summer only because he sounds very underweight and he needs to stabilize and gain weight. Unless he is really able to feed himself, it might be good for him to be at home and to have a little TLC from Mom and/or Dad. Also, it’s really, really important to have a good GI doctor, especially at the beginning. It’s a bit of a juggling act when a kid is at college. My daughter had a doctor she loved at school, and we had a fairly horrible doctor here who, in part, was awful because he didn’t like playing second fiddle to the other doctor. So you need to work out who will be the primary GI doctor. You didn’t say if your son is in or out of state, but it becomes more complicated when it’s another state. </p>

<p>My daughter never missed a semester. We did purchase tuition insurance in case she got too sick. Her junior year she was pretty sick until we climbed up the pyramid of drugs to a stronger (and scarier) drug in the spring. I would make every effort to keep him in school. If he gets treatment, he might begin to feel a lot better right away. Again, because I can’t stress it enough, get the best GI doctor you can. Also, as someone said, ccfa is the best resource out there and they have a support telephone line with professionals who staff it. And they run webinars and so forth that you can listen to for free. </p>

<p>My daughter was able to complete two majors and graduate on time with all kinds of honors. She has held very demanding jobs since graduating. She has never achieved full remission, but is stable. You can PM me if you want. I received a lot of support from other Crohn’s parents when I really needed it which made a big difference.</p>

<p>Chron’s can be painful and rough to manage for certain. Sorry to hear your son is suffering. Another route you might want to look into and consider is a Paleolithic style diet. You can read more about folks who have managed Chrons through this avenue at marksdailyapple. com and robbwolf. com</p>

<p>Best of luck to you all.</p>

<p>My son does not have Crohns but he was diagnosed with Type 1 diabetes during spring break last year as a freshman. He had lost 30 lbs. and already had some nerve damage because of the disease. Because he had only 6 weeks left, we made him go back to school after a week learning how to give himself insulin etc. He was not “into” school and although he ended up with A’s/B’s in his class, when he got home he was depressed and physically still not feeling well. We let him lay around for awhile, then forced him to get a summer job, which he said he hated but he had a smile on his face when he got home at night. He also got a “pump” last summer which helped him manage his diabetes better. He did have a problem in Fall from diabetes complications which caused him to be hospitalized in the fall, and we were ready to bring him home but he decided to stay. Best decision as he needed to have a “normal” life and the rest of the year went well. He is now home, looking and feeling good, and working at an internship at a nearby business.</p>

<p>I wanted to tell you his story as last summer we were in the same place as you. We will always worry about our son because of his diabetes and the complication he has, but he has to live a normal life with his chronic disease. Saying this, if your son was mine, I would probably encourage him to stay home this summer. As a 19 year old who hasn’t really cooked for himself, it would be alot for him to do this right now. The summer would be a great time for him to get use to his disease, to learn how to eat, put on weight and to get healthy. If he could find a part-time position or volunteer opportunity to get his mind of himself, that would be good too. Also a doctor can monitor him during this time away from the pressure of school and give advice/help as needed. This way when you send him back to school in the Fall you will have a little bit more peace of mind that things are under control (or as much as possible.)</p>

<p>I was diagnosed with Crohn’s only a year and a half ago. I live at school which is only an hour away from home, and just finished my freshman year. From personal experience when I don’t feel good its very hard for me to eat enough in the span of a day, in order to gain more weight back so having a support system in place to encourage me is very helpful. Another thing that really exacerbates the disease is stress so a very tough course load may not be good for his health especially since he was diagnosed so recently, but at the same time I think of my disease as something that I have, not something that has me so I try not to let it limit me in that regard but over all keeping stress at a minimum is very important. Feel free to PM me with any more specific questions</p>

<p>My 18 year old son has severe Crohn’s necessitating 2 bowel resections his freshman year of high school. Because of the severity it was an easy decision to start him on Remicade infusion. Now it’s like What Crohn’s? It’s like he never had it. Of course we can’t stop the Remicade now that we’ve started. And it’s not for everyone. But it was a lifesaver for him. Now we’re working on getting him the infusions at college.</p>

<p>I appreciate everyone’s input and thanks for the hugs anniezz!
To answer everyone’s questions:</p>

<p>The school is out of state; it was his first choice, a very selective LAC. (There’s a top rated university in our town – that we didn’t/don’t think would be a good fit for him because it’s known for being a pressure cooker.) </p>

<p>We can find a gastroenterologist in the college town- but the choice looks like it will be between someone who comes there once a week, or someone who has practiced 55 years. </p>

<p>In our town, there is a group of gi doctors but again they’re not specialists in IBD, and our town’s hospital is not very good. We’d have to travel 2 hours from here to get to more experienced doctors and a better hospital with a IBD center, though still not an elite one.</p>

<p>We’ve only met my son’s doctor twice- a new patient visit before diagnosis and briefly after the endoscopy. He didn’t tell us how many visits will be needed this summer–that’s a good question. He also hasn’t commented on the weight.</p>

<p>My son’s was put on prednisone. He’s only been on it for 4 days. </p>

<hr>

<p>If my son does the internship, he’ll still have 4 weeks after it before school starts.</p>

<p>I agree it would be safer for him to be here but not going seems to be giving in to the disease and he doesn’t want to do that unless it’s really necessary. </p>

<p>I’m wondering if he got his weight checked at a doctor’s every week, would that be a reasonable safe guard? If he does the internship away, we’d certainly come and get him right away if he’s feeling worse or losing weight.</p>

<p>Any thoughts?</p>

<p>S2 is celiac (hospitalized for months and not even on the BMI chart) and I have to tell you, I agree with the rest — your son needs a medical leave, or a summer at home. Weight gain under these circumstances is very difficult, and the ramifications of being underweight are really serious. (although, prednisone will make him want to eat everything under the sun) There’s a tendancy to feel like once you have a diagnosis, it’s all downhill from there, just management, but the reality is likely to be very different. Our experience with adjusting to new diets, meds, and doctors is that you now have a part-time job that needs your (and his) full-time attention. </p>

<p>It’s not “giving in” to the disease. Try not to look at it that way (although I’ve been there). It’s using short-term planning to solve a long-term problem, which is necessary in the first 6-12 months. He is convalescing from a debilitating silent illness, and has every right to be home. There will be other internships. If it’s easier, think about how much worse it will be if he has to quit because he’s too ill to work, or gives a terrible impression because he’s too exhausted to work. What if he doesn’t go get weighed, and is still losing weight? If he doesn’t want to give up the internship now, why would he give it up once he’s started, no matter what? THAT’s giving in to the illness — letting it make you choose things that don’t make sense in the long term. Go ahead and grieve for what you thought was going to happen, and then let it go.</p>

<p>As for doctors, experience in IBD is more important than anything else. We drive 3.5 hours twice a year (and at first, it was once a month, or twice) and don’t regret the choice. Now that he has 9+ years of doing that, he’s capable of seeing his own adult GI when he launches to whereverville, but the experience of exemplary care has set him up for that. Again, long term solution. Very best of luck to you and your son – he is lucky to have you supporting/advocating</p>

<p>It sounds like you think the once-a-week GI is the better choice than the older doctor in terms of clinical skill. If you go with the former, what coverage arrangement does he/she have in case of an urgent problem?</p>

<p>As a parent and MD, (not in GI), I would want to be sure that my child was in the best possible health at the start of the school year. I don’t agree that staying home in this circumstance = giving in to the disease–it would be giving him a chance to regain his strength and learn to manage living with a serious illness. I think it would be wiser for him to stay home. Is it impossible that he will succeed if he stays away and works over the summer? Of course not - but determining the best course depends on a lot of things that none of us here can assess – just how sick he is, how quickly he responds to treatment, how hard he will push himself to work and party while away, whether he will be in denial if he 's not well and will therefore push himself far too hard. It may take time for him to understand that his physical and mental resources are finite. And if he comes home completely drained and exhausted, 4 weeks may not be enough to recuperate fully. So, if he tries the summer job, you need to be sure that he’s mature enough (he would need to be exceptionally mature) to call it quits if things are not rapidly improving, and that he’ll take really good care of himself while away. You may want to ask him if he’s willing to gamble on being unable to start back at school in the fall if he hasn’t gained enough ground in the summer.</p>

<p>No teenager, especially a boy, wants to feel different especially when it’s because of a medical condition, and Crohn’s has “embarrassing” symptoms, KWIM? Sounds like your S is a hard working student with a plan for success and after landing a summer internship he doesn’t want to look like a “quitter” with a professor he’s developed a relationship with. </p>

<p>I’d be very uncomfortable with him going back to school for the summer. The 1% for weight coupled with the ADHD is a potential mindfield. He is going to have to be very mindful of meal planning days in advance so he has the right food on hand; if he’s never cooked real food for himself then learning to cook is a challenge as well. </p>

<p>I’d say a call to the GI doctor is in order 1st thing Tuesday morning. Ask questions about his weight, diet and what the doctor says is the average time for the meds to help stabilize. What is his advice about this summer? If you aren’t happy with his answers, see if there’s a pediatric GI doctor in town (even though S is 19; they might be more comfortable with the psychological aspects) and call to see if you can get a phone consult. Call the Crohn’s associations & see if they have any insight. </p>

<p>D1’s friend was diagnosed with Crohn’s when he was 15; he’s had to have his meds adjusted multiple times & he had a bowel resection as well. His diet was pretty restricted, but he was still a teenaged boy & would be careless when out with his friends. Cheerios at a sleepover had a wicked effect one time.</p>

<p>After talking with the doctor, you can always help your son craft a script or email to the professor: Hi Dr. Smith, I am terribly sorry for the late notice but I’ve spent the past week having medical tests done. I found out I have a medical condition that will be easy to manage but my physician needs me to stay close to home for a few weeks while he adjusts my medications to the best level for my long term needs. Unfortunately, this conflicts with my participation in your research during the early part of the summer. </p>

<p>I think if you get things stabilized with medication & diet over the summer, he could be able to return to school in the Fall. As long as he knows how to/has facilities to cook. </p>

<p>College is only 4 years; Crohn’s is for a lifetime. There’s lots of crooked paths on the way to a degree; getting his health stabilized is the most important thing. Hugs to both of you!</p>

<p>Thanks greenbutton.</p>

<p>I had been thinking that somehow he might be able to manage the 2 months of internship with us checking in/visiting and then come home for a medical leave for fall semester, perhaps taking a course or two at a local school if he is able. The unpredictability of the disease is very difficult to deal with.</p>

<p>I don’t worry about him giving a bad impression at the internship or leaving if he’s sick because the professor would know upfront that he has Crohn’s and that he is going to see how it goes.</p>

<p>Looks like I posted last while RobD and CIEE83 were posting.</p>

<p>RobD:
On a positive note, my son does not tend to be embarrassed and already commented that he doesn’t understand why some people with Crohn’s are.</p>

<p>We don’t have any concern about letting the professor know he can’t do it, or that he wants to wait a couple of more weeks to see how he feels. He knows the professor (and worked in his lab for a month before) and he has already told him that he was getting tests.</p>

<p>We’re seeing the doctor on Tues and a dietician on Wed.</p>

<p>CIEE83-<br>
In terms of his weight, he’s always been quite thin (but following the growth curve)–I’m thin too. He lost about 8lbs this second semester. I would hate for him to lose any more.</p>

<p>I’m feeling at this point that his school is really not going to work because of the distance from home and the lack of a good GI doctor and decent hospital. </p>

<p>We’ll definitely make an apt at IBD center so we can get the team approach and a more complete understanding of the disease and options.</p>

<p>What is the biggest concern here in terms of symptoms? If it’s the weight, prednisone will put on weight quickly and help with other symptoms. Is he having pain? Lots of trips to the bathroom? I think your decision has to be based on what the symptoms are and what the immediate goals are in terms of his health. However, prednisone is not a long-term fix for Crohn’s. It’s a short-term full-on intervention that works, but you then have to figure out what medication will stabilize him in the long term. If I were in your shoes, I would call the once-a-week doctor and ask what happens when he’s away. Find out what his experience is with IBD, what approach he usually takes, etc. How hard is it to get an appointment with someone who is there once a week? It might not be hard at all if it’s a small town. Or it could be an issue. I think it’s too early to decide about the fall semester. You need to see how he does. If he gains weight and starts to stabilize, I would purchase tuition insurance and let him go. That’s what we did and DD wasn’t even especially stable although her weight was okay. The difference is that she had a great GI doctor near her college.</p>

<p>As for embarrassment, some of that depends on the type of symptoms and the type of people who are around you. If you’re running to the bathroom 20+ times a day and people around you are complaining you are hogging the bathroom or you are bolting out of class, that can be an issue. If you’re in pain and a roommate tells you it’s disgusting to talk about GI issues, that can be an issue. If you can’t drink because you are taking Flagyl, that can feel “not great” when you celebrate your 21st birthday and your friends want to take you out. Some people who are flaring really can’t be more than a few feet away from a bathroom and might need to turn down activities, etc. that place them too far away from a bathroom. It can be embarrassing to have to leave a social event early because you are in so much pain that you just need to get home. And there are some symptoms of Crohn’s that are simply not considered okay to talk about by most people which can create a sense of isolation and/or shame.</p>

<p>I do understand that these things can be embarrassing. I get embarrassed easily but luckily my son does not. His exact words were “I don’t get why people are embarrassed; it’s only sh#t” </p>

<p>Speaking with the once-a-week doctor and looking into tuition insurance are very good ideas.</p>