General questions about dealing with UC from experienced people...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Mar 2009
Total Posts : 12
   Posted 3/17/2009 12:18 PM (GMT -6)   
Hi. I'm 17, and was diagnosed with UC last spring. The first flare-up (it went undiagnosed for a while) was really bad, and I missed two months of school. Teachers were considerate, but when I would go in to write tests and such, I just wouldn't do as well (i.e. friends, despite good intentions, give me their incomplete or just plain wrong notes). Now that I'm having my second flare-up and have missed basically 3 weeks of school, I'm getting stuck in the same boat.
1. First Question; sleep. During the first few days of the second flare-up, sleep was terrible; I was waking up every hour. Thankfully, this only lasted a few days (the first time it lasted nearly a month). This time, my GI prescribed T3s to help me sleep and they worked pretty well while I was getting the flare-up under control. I'd only wake up once at 3 and once at 7. The problem is my sleep cycle is from like 10pm-11am, and I still feel tired when I wake up. After about an hour of activity, it goes away, but come 5pm I start feeling really, really tired. This limits me to about 4-5 hours of being able to do my daily work and other things and such. I thought it might be the T3s, and as I'm slowly remissing, I kicked them and switched to taking a couple of immodium before I went to sleep. I only did that for a couple of days, and then stopped taking anything. Now I only get up once a night; however, I still sleep really, really long and am having the same exhaustion problems. How do you guys deal with sleep?
2. Does anybody else deal with these exhaustion problems? Are they common? During these flare-ups, I literally feel like doing nothing (even during my okay, not-so-tired part of the day) but lying around, playing videogames, watching TV, or going for light walks. Motivating myself to work is very hard. It's okay for me to miss high-school. It's not okay for people to constantly miss work. How do you motivate yourselves to work at home? How do you deal with work and UC (it's been concerning me as I'll soon be going to university and I can't just cut classes for three weeks since universities aren't usually ones to make exceptions)?
3. When the blood stops showing up in your stool, is that generally a sign of remission? How long til one usually gets better from the point?
4. How do you deal with exercise? When I try to exercise, which I did alot of before I got sick and during my quiet period, I get UC cramps and have to stop. Even things like running for sustained periods or lifting weights. During both my flare-ups, I got weak and lost some weight (so far 13lbs during this flare-up). I naturally skinny so I don't imagine I'm just dropping that much fat.
5. How do you deal with it emotionally? It's very embarassing for me to get back to sports and be a lot weaker and worse than I was when I started. I had to quit all my teams last spring. Even if I recover in time for this year, I'm afraid I'll come back in really bad shape (i.e. lost muscle, I was thin and lanky before, now it's just...) and embarass myself; I'm thinking I don't even want to do anything this spring but that'll disappoint my coaches. I'm the captain on my school's snowaboarding team, and my flare-up came a week before the provincial championships. My parents wouldn't sign the forms for me to go and it was probably the right decision; I wasn't sleeping or eating, and was getting really weak fast. My team comes back, and without their best rider, still won the championships. While I'm happy for my team, I'm really depressed I wasn't there partaking in that. Looking at the results, I even had a good chance at a top 3 finish. It was my last year of high school. I also have a lot of diffuclty making time for friends; constantly turning down friends to go out and such, and trying to explain why I can't.

Veteran Member

Date Joined Aug 2008
Total Posts : 5951
   Posted 3/17/2009 12:25 PM (GMT -6)   
     What meds are you taking?  I had severe insomnia while on prednisone and had to take Ambien CR.  Yes, many of us here have fatigue.  I feel for you young people on this board, I wasn't diagnosed till I was 52.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/ see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

New Member

Date Joined Mar 2009
Total Posts : 12
   Posted 3/17/2009 12:28 PM (GMT -6)   
Thankfully, I've avoided steroids and am on about ten Asacol a day. My dad, whose gone crazy with this homeopathic stuff, has me on fish oil and digestive enzymes. My mom's gone crazy with the prebiotic and probiotic stuff.

Veteran Member

Date Joined Aug 2008
Total Posts : 5951
   Posted 3/17/2009 12:36 PM (GMT -6)   
     I'd be careful with the homeopathic stuff.  Not to say it is bad, but just be knowledgable.
     My GI doctor put me on FloraQ (probiotic) while I was hospitalized last year.  When I was discharged I went to a nutritionist and she suggested Powerdophilus by Country Life.  I take two a day with food and I also take a fish oil capsule.  The Flora Q is now sold over the counter and costs a lot.
     Do you watch your diet?  It's best to stick to a low residue diet while flaring.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/ see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 3/17/2009 1:21 PM (GMT -6)   
I think you should talk to your doctor about some additional medication. You should be on rectal meds at the very least. I had a lot of resistance to starting prednisone, but ultimately decided to because I have a job interview coming up and CANNOT be in a flare during it. I've only been on it since yesterday, but I think it's making a difference already.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).

New Member

Date Joined Mar 2009
Total Posts : 12
   Posted 3/17/2009 1:22 PM (GMT -6)   
Im taking Pentasa as well, and yes, I am on a disgustingly boring diet. Im in a minority among guys, but darn it I love salad.

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 3/17/2009 1:45 PM (GMT -6)   
I realized that I didn't answer a lot of your questions! As you can see, I'm pretty new to UC as well...newer than you are, actually!
1 & 2. I, luckily, don't have too much problem with fatigue. I have a five-month-old baby boy, so I'm really glad about that! He is a good sleeper, though, so I'm rarely up at him with night anymore. Also, I think that all of the sleep depravation during late pregnancy and the first couple of months with the baby really got me used to needing a bit less sleep! If you're bleeding a lot, have your doctor check your iron levels, as anemia can cause fatigue.
3. I don't think anyone will be able to answer this for you. Some of us have a lot of bleeding and others don't have that much. I have very severe diarrhea, but not all that much blood. The symptoms of UC seem to be so individualized that it's hard to answer these type of questions.
4. Ummmm, I don't! Other than playing with my baby. Honestly, I wouldn't worry about getting exercise while you're in a flare. Your body really needs rest!
5. Well, I was prescribed Zoloft due to post partum anxiety/depression at the first of December, which helped tremendously. The anxiety and depression were likely made worse by my (at the time undiagnosed) UC. Anyway, I am very glad I was on it when I was diagnosed, and I plan to stay on it at least until my UC is in remisson, if not longer. We'll see. At any rate, I also find it helpful to be on this board and to talk with my friends and family about how I'm feeling. I am the type of person who is helped by talking things out, though. And when I feel like crying, I cry. It seems to help release everything.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 3/17/2009 1:54 PM (GMT -6)   
saw, why on EARTH would you want to be weak? I can somewhat understand wanting to loose weight, but it's definitely not a healthy way to loose weight. I'm currently 25 lbs under my pre-pregnancy weight, and have been since early February. I gained about 25 pounds with my son, so that means in three and a half months, I lost 50 lbs...totally not a healthy way to loose weight.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).

New Member

Date Joined Oct 2008
Total Posts : 1
   Posted 3/17/2009 2:28 PM (GMT -6)   
I was diagnose with uc late 2004, was using Pentasa. i had so many flair ups it was crazy, forgot about how it felt to have a normal life. Was working in Sierre Leone from 2007 March until last year June as it was my leave time. Had to go for a check up before i could return back to Sierre Leone, so i went for the colonoscopy. After the check up i was kept in hospital, i was a nervous wreck at that time, the doctor said it looked bad. 3 Month's later still in South Africa, i went to see another doctor for a second opinion, at this stage i was so sick only God pulled me threw this! After colonoscopy i was treated for the first time with Prednisone and nexiam and doctor wanted to see me in 3 weeks time. I changed my diet and using these tablets i felt better. Went to see him and he made plans to remove my colon?

I went back home and just kept on eating right and using vitamin tablets, Barley Green, Flexceed oil, Moducare, Immuno Choice, all boosting the immune system. Started drinking Green Tea and Rooibos tea black, no sugar. I kept it plain and simple, no dairy products, sweets, bread no wheat's. Rice cakes, Sardines, fish paste, salads, cucumber, lettace, tomato very little, and olive oil is a must. Brown rice, carrots, green beens,chicken, and now and then a nice steak backed in olive oil. At this stage i like my fish dipped in egg and cake flour and baked in Conola oil. Sometimes i treat myself to a small packet of chips ligtly salted. Every morning i eat my Jungle Oats and sometimes in the afternoon too. No soft drinks only water and tea.

I thank God for my peacefull sleep at night!

Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 3/17/2009 6:26 PM (GMT -6)   
1 & 2. Yes, exhaustion is a huge problem for some. It's even a problem for me while I'm in remission; I just don't have much energy. I just make sure I get enough sleep and take naps in the afternoon. Have you had your blood levels checked? You may be exhausted because you're anemic.
Luckily I've flared badly in the summer so far, otherwise I'd have no idea how to handle classes. Just try to do your best and don't stress yourself out. Sorry I can't give any more advice than that. When you go to college, register with your college's disability services; they'll help with housing, talking to professors, etc.
3. Lack of bleeding usually does signal remission. Remission and the timing of remission different for different people, but generally it's being close to what you were pre-UC. For me, that means no blood, a couple BMs per day, no urgency, etc.
4. Don't push yourself to exercise too much if you're feeling weak and flaring. On a good day, you could try a little cardio and/or weights. And then move on up to your regular routine once you reach remission.
5. It's hard to deal with emotionally for sure. I had this disease for almost a year and half and some days still have time accepting it. I have not told any of my friends about it; they just know I have a chronic autoimmune disease. I really don't feel like going into details about this disease for obvious reasons. Don't worry about what your coaches will think or letting down your team--you have to take care of your health first!
There have been studies that show fish oil and especially probiotics can help with UC symptoms, so they're definitely worth a shot. What brand of probiotics are you on? I'm not completely sure about digestive enzymes or prebiotics (maybe someone else will chime in). I've refused steroids as well, but definitely ask about rectal meds. I know that they're embarrassing, but they do help!
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric

Veteran Member

Date Joined Dec 2008
Total Posts : 3231
   Posted 3/17/2009 9:55 PM (GMT -6)   
By accident, I bought Prebiotics instead of Probiotics. Prebiotics didn't do anything for me, whereas Probiotics do.

Prebiotics help the bacteria that is already in the colon. They don't necessarily target a specific bacteria group, although they should increase the number and/or activity of bifidobacteria and lactic acid bacteria.

Probiotics contain good bacteria.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

Veteran Member

Date Joined Aug 2007
Total Posts : 2204
   Posted 3/18/2009 7:54 AM (GMT -6)   
1. Have you had your adrenal functions tested? Are you anemic? Have you been tested for mono or any other causes of extreme fatigue? If not, I'd discuss with your doctor.
2. Bad flares can make you fatigued. Once you've ruled out other possibilities, you'll just have to be patient with yourself and rest as much as you can. Your energy level will improve as your colon starts to heal and digestion/assimilation improves.
3. Stopping the bleeding is certainly a sign you're moving in the right direction. OTOH, I wouldn't call lack of bleeding "remission." As long as you're having cramps, gas, mucous and diarrhea, you're not in remission.
4. As you're already thin and have lost weight, you don't need lots of strenous cardio. Twenty to thirty minutes of walking three or four days a week would be sufficient for general health and well-being. Instead, your primary focus should be weight training in order to replace lost muscle and regain healthy weight. Even at my sickest, I was able to do moderate, free weight workouts. Yoga may also be helpful to increase flexibility and reduce stress.
5. I found I had to set everything aside while I concentrated on healing myself and achieving remission. No one wants to give up their normal activities and outings, but you must make your health your top priority. You'll only make your symptoms worse if you continue pushing yourself. Once you're in remission, you'll be able to return to some, if not all, of your previous activities. A few sessions with a counselor who specializes in working with folks with chronic disease may help.

Diagnosed with ulcerative colitis spring 1999.
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.

Eva Lou
Veteran Member

Date Joined Sep 2006
Total Posts : 3440
   Posted 3/18/2009 8:21 AM (GMT -6)   
hhhm...I'm tired ALL THE TIME. I go to bed early, & take naps whenever I can. The fatigue has gotten somewhat better, since my health has improved slowly but surely the past year, but I am definitely more tired than the average person. After a day's work, then the normal household stuff, like cooking, cleaning, laundry, etc. I'm wiped. And yes, you are probably somewhat anemic, which contributes to that. My labs are always slightly anemic. Because I bleed often! I suppose a lack of blood would be a good sign- I haven't seen that myself in a long time, though I consider myself to be doing quite well. Like princesa said, if you are still seeing mucous & having urgency, you're not in remission. You may never get there entirely- not to be a buzzkill, but a lot of us have a new "normal", & this is it. I don't really exercise- I do a yoga tape every now & then, but that's about it. Prior to badly flaring, I would swim laps for about an hour, 3-4 times a week. I don't know how I'd do in the pool now- probably sink to the bottom! It's discouraging, yes, but I'd rather feel ok day-to-day then push it. I take walks with my daughter, in the woods, or on the beach, that's about it. Sometimes we go for family bike rides, usually no more than an hour. That's all I can handle. Emotionally it's a huge drag- I think I was depressed the entire year of 2007! I was very ill the whole time, & was just so mentally low. The steroids probably played a big role in that also. It does get better- you do have to give up certain things, but realize it's not forever. And you can start doing other things also- how about the chess club? Or debate team? In a way, it's good that this happened to you your last year of high school, becasue you can sort of reinvent yourself- no one you meet now will know that you used to be this active, athletic person! Working can be rough- I took a lot of time off the past few years. I think the best way to deal with it is find a job that is understanding of your medical condition- I'm lucky to work in a doctor's office, so they really can't argue when I'm out! And I show up more often than not- even if I've had an accident en route to work, I clean up, change my clothes, & off I go to the office. It'll get easier with time.

diagnosed with UC '02
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Primal Defense Ultra
Fiber supplement

Regular Member

Date Joined May 2008
Total Posts : 387
   Posted 3/18/2009 8:26 AM (GMT -6)   
Are you sure you are eating enough. Eating well and in sufficient amounts might aid your fatigue. Most 17 year old guys are still growing and you may be missing your body's natural cues when you are hungry which means you may have to make yourself eat when you are not hungry to ensure you are getting enough calories. What about eating more protein. I'm also a big believer in eating plenty of carbohydates when underweight.

Please don't worry so much about exercize and counting how many hours of useful activity you can fit into the day! Concentrate on things that will contribute to your recovery and when you feel better again you will find you have plenty of time and energy to catch up or even surpass where you were before getting sick.

How long have you been on your current medications. If it has been more than a month and you are still suffering then perhaps it is time for you or your folks to call the GI to discuss other changes or addition to your medication.
UC diagnosed 10/05, first symptoms 1983
Starting remicade 3/24/09
* asacol 12/daily * rowasa pm * cortifoam  
 Culturelle Probiotic - prilosec - metamucil capsules
past rx: colozal, lialda, canasa, 6mp
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh

New Member

Date Joined Mar 2009
Total Posts : 12
   Posted 3/19/2009 5:24 PM (GMT -6)   
Thanks for all support guys. To answer a few general questions:

I mispoke when I said prebiotics; right now I'm drinking a few BioBest Maximmunite a day and having 2 of those VSL packets a day. However, the VSL is super expensive and not covered by the Canadian government as far as I know. Neither me (as I'm won't be working until I get better) or my parents can afford it.

I have been tested for anemia. Positive during the first flare-up, negative during this one although my WBC count is apparently through the roof.

I have not had my adrenal functions tested but I don't really have any signs or symptoms of Grave's Disease (if that was what you were thinking) apart from exhaustion.

I'm taking ten Asacol and one pentasa suppository a day. During my first flare-up (June) I was taking six Asacol a day and one Pentasa. Mid-July, I was perfectly fine. Felt like my normal self; good energy levels, a couple BMs a day, and ate basically whatever I wanted. Had a colonoscopy in August where they said it was a full-bowel irritation but was healing very well. Lived life normally until end of February. BAM. Saw the GI immediately, he upped the dose of Asacol. Went on a diet again. After about a couple weeks, I reached a point where I could sleep well (still very long though) and only take BMs in the morning. Problem is I take like five or six BMs in the span of an hour when I wake up and then I'm done for the day.

So here are my current issues:

Sleep very long time.
Get tired after small activity or at night.
Loss of motivation due to exhaustion. Having trouble focusing on school work.
Five or six bowel movements when I wake up (Halfway b/w diarrhea and solid stool; no blood)
Diet is killing me. I love salads, raw vegetables, and fruit.
BMs and long sleep means I miss morning classes. Can sometimes make afternoon if I motivate myself to get ready quickly.
My GI wasnts to put me on predisone in a week if I don't get out of this half-sick "stasis".

Thanks again guys and I would love any more advice.

Post Edited (jays_fan) : 3/19/2009 6:08:32 PM (GMT-6)

Veteran Member

Date Joined Mar 2008
Total Posts : 1580
   Posted 3/19/2009 6:36 PM (GMT -6)   
Perhaps try a light steriodal rectal med first like CortiFoam before taking pred...
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
*Recent Changes In Blue*

Regular Member

Date Joined Apr 2007
Total Posts : 194
   Posted 3/19/2009 8:01 PM (GMT -6)   
I am a long time UC patient. I got it my junior year in high school and now I am, at 63, a retired teacher. I missed three months of my junior year. But I was able to catch up by the end of the year. Senior year I missed two weeks. The doctors told my parents to prepare for surgery, a full removal of the colon when I first got out of the hospital junior year. But by my senior year, I had show enough improvement that they chose to not do surgery. I was on a lot of predisone and while I had played basketball before I got sick, I never quite got back to it. I don't remember being tired but I do remember being afraid to travel on the bus with the teams for fear of needing to use the bathroom.

I went to college and lived a relatively normal life but I did have flares almost year around........but as a female my UC was greatly affected by my menstrual cycle. By my thirties, I found a doctor who felt I should try to eat more normally, i.e. away from bland and more fruits and vegetables. I was thrilled as I loved salads and fresh fruit. It seems to me when I started doing that my flares got less often and less intense.

But with this disease everyone seems to be so different. I take probiotics daily now. And my flares are less than ever and less intense.

Good luck, hang in there. Maybe with all the research resuming there will be better ways to deal with this disease soon. Good luck, hang in there, and get back into your sports as soon as possible.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm

Regular Member

Date Joined Mar 2009
Total Posts : 130
   Posted 3/19/2009 9:04 PM (GMT -6)   
HI, I also have UC since age 17. I have had it for 40 years now. Good days, bad days, long periods of pretty good days especially after first diagnosis. I was in hospital for 3 1/2 weeks initially, but have never again been hospitalized again. I don't recall tiredness being that much of an issue, but the in and out of the restroom and bleeding at times has been off and on this whole time. At the beginning of this I was on a very strict diet. No fruits, no vegetables, no mild products, nothing with shortening, oil. It was very limiting, plus my family owned a restaurant at the time and I think I could eat like 5 things. Be good to yourself. Maybe exercising isn't the thing right now, but in time anything may be possible. It's true for me about traveling and restrooms and how many times didn't make it to the restroom, but it's like you dust yourself off and try the best you can to move forward. I know the feeling of like so much is being taken away and you say I am not going to let this take over everything. It's hard I won't deny it. I remember going to high school and everybody eating what high schoolers eat and I had to bring this very bland hardling anything food, missed the junk food. Sometimes I think maybe getting back to that way of eating would be better for me now. It seems almost harder now to be disciplined than it was then. I hope you will soon have your answers and ask the questions because it seems that everybody has something to add which is good it gives you more of a perspective of this disease. Hoping that you are feeling better soon.

Regular Member

Date Joined Mar 2009
Total Posts : 108
   Posted 3/19/2009 9:10 PM (GMT -6)   
Thank you jays_fan for this post! I have been diagnosed today and I had the same questions literally.
I just couldn't find the way to put my questions into words... I'm still in my state of shock!
We will get better
Diagnosed with pancolitis 19/03/09
Prednisone 40 mg, Mezavant 4.6g

Veteran Member

Date Joined Nov 2006
Total Posts : 552
   Posted 3/19/2009 11:21 PM (GMT -6)   

My daughter was diagnosed in her sophomore year of high school. She was out of school for 9 weeks that October/November. Then she went into remission. Another flare around the same time in her junior year. Another 9 weeks out of school. Then she flared in the spring of junior year. Out for 7 weeks then. Every time she was in a flare, her energy level and attention span went out the window. In fact she became very, very good at Minesweeper on the computer during her first flare!

Here in the US, there is something called a 504 plan. That is a disability plan that is agreed upon by the school district and the parents. In my daughter's case, it allowed her unlimited bathroom trips, food and drink at any time, extended time on tests as needed, etc. She rarely used this but having it is like a safety net. We also chose to let all her teachers know about her UC. She was able to get some of her work by email to keep up with her classes. I think by being open and honest with the teachers it helped because they had a bit more sympathy (empathy). I contacted the teachers myself at first. She followed up once they were on board with what was happening.

My daughter isn't involved in sports but is very involved in the music department at school. The UC was tough. She had to drop out of the pit for the school musical. She couldn't commit to the symphonic orchestra. Some of the other groups she is in worked with her and she was able to come back as she felt better. Even though she is now healthy, we can see what the 2 years of being sick has done. She lost some of her edge and should be at a level of 1st or 2nd chair. She is not there. And you can't fault the teacher for wanting the strongest kids in those chairs.

Don't be so hard on yourself. You've been dealt a raw deal with the UC. What should be the fun school years are marred with never knowing if you'll continue to feel well or continue to feel sick.

As for friends, the true ones will be there through it all. Most of my daughter's friends know about the UC. They know about her surgeries. Her attitude has been that the UC is (was) a part of her life but it wasn't going to become her life.

Feel better soon.

--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, March 23, 2018 1:37 AM (GMT -6)
There are a total of 2,943,035 posts in 322,918 threads.
View Active Threads

Who's Online
This forum has 161289 registered members. Please welcome our newest member, nvjhjhxa09.
230 Guest(s), 4 Registered Member(s) are currently online.  Details
Dimitri71, nvjhjhxa09, LivinginHell, Sinmiedo