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Crohn's Disease Forum » Parents of Kids with IBD » Going to High school with UC flaring?


 
08-15-2014, 03:17 AM   #1
StarRibbon
 
Join Date: Aug 2014
Going to High school with UC flaring?

Hi, I'm new here and I'm not a parent-I'm a teenager that was newly diagnosed in July, but I might have actually had it since middle school. (My period triggers my symptoms. My period is horrendous, like- I prefer my UC pain over my cramps, even when it felt like knives were cut into me and I would feel the symptoms for two weeks prior to it and a week AFTER. Then in July I ended up being forced not to eat because my period worsened it so bad even sprite wouldn't stay down long) I'm not in remission and I won't be for a long time since I have to get SSI for my Asacol HD. I do take prednisone, a probiotic and a heart burn medicine. Yet they give me problems. (I keep getting random pain everywhere. Its hard walking and grasping things too long hurts. It could be my jaw misaligned or something, but my jaw tenses really bad while eating. )

I'm terrified of school-its my last year of high school and I want to attend. I really do want to head to school like everyone else and go out, but my parents keep pushing me towards homeschooling. They are talking to the school to get them to accommodate for me, and I'm terrified that it won't work. I'm also terrified that I'd do something stupid in school. (Bathroom break very long, accidents, etc.) I have no idea what to do. I know you all have children with IBD and longer than me, so can you offer advice for me maybe?

Ps:How do I explain to my father that it wasn't my fault for my disease? He has this idea that UC is from diet and GMOs or something. Its offensive , he frustrates me due to his lack of understanding.
08-15-2014, 03:35 AM   #2
Sascot
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Hi, sorry to hear you are struggling. I hope your school manages to come up with a plan. My son has missed a couple weeks here and there and we usually have the guidance teacher co-ordinating with all the rest to get work sent home or posted online for him. You mentioned the meds you are taking but it doesn't sound like you are taking anything for your bad periods? I am obviously not a medical professional , but I have had a couple friends with bad periods. They did find some relief by going onto the contraceptive pill - it didn't take all symptoms away, but every little helps.
Lots of the kids on the forum see a rheumatologist as well as a GI as joint issues are common. It might be worth seeing one too.
08-15-2014, 03:42 AM   #3
StarRibbon
 
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Hi, sorry to hear you are struggling. I hope your school manages to cone up with a plan. My son has missed a couple weeks here and there and we usually have the guidance teacher co-ordinating with all the rest to get work sent home or posted online for him. You mentioned the meds you are taking but it doesn't sound like you are taking anything for your bad periods? I am obviously not a medical professional , but I have had a couple friends with bad periods. They did find some relief by going onto the contraceptive pill - it didn't take all symptoms away, but every little helps.
Hopefully they'll help me out here and there. My school is a little tricky. When I only had Lactose intolerance they responded weirdly. Though, the meeting is on the 22 and hopefully they received everything. (I can't do gym so I have to get a note)

Thats the thing: I do try getting aid for my period. I tried OCT meds but none work for me. If you name it I tried it. I even tried hydrocodone (I was curious to see just how severe it is) and even then, it was severe. Its horrible.
08-15-2014, 03:43 AM   #4
Catherine
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Welcome to forum. I am mum to 3 girls. The oldest was dx with Crohn's at 16 years

I would like to collect information on IBD not being caused by diet for you.

The article below is on my our state government website. It maybe better if find
something from your country.

http://www.betterhealth.vic.gov.au/b..._bowel_disease
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
08-15-2014, 08:16 AM   #5
Tesscorm
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I'm so sorry to hear you're struggling so much.

I'm not sure how SSI works but, if it's at all possible, you should speak to your doctor and make sure he is aware that you are still having symptoms. The prednisone should take away the inflammation but, there are cases when it doesn't work. You may need different treatments - one to induce remission (treat current inflammation) and a stronger maintenance med (something other than asacol)??? Getting into remission would certainly help with many of the problems you're dealing with.

Re school, do you have a 504 (I think that's what it's called??)? I'm assuming that is what your upcoming meeting is about. I'm going to tag Clash, Jmrogers, Patricia - they have kids in high school in the U.S. and may be able to give you more advice re what you should expect from the school.

There's also a teen forum here - you may be able to get advice from other teens about your concerns re school.

As far as your dad... I'm sorry that you have this added frustration. There are many, many people who do not understands IBD. At this point, all you can do is try to educate him and he'll, hopefully, eventually understand that UC is not caused by diet, etc. It may also be that he needs to blame 'something', it's hard to accept that your child has a chronic illness and even harder to accept that it can be random. But, nevertheless, your father should try to understand and be supportive. Hopefully, if he becomes better educated about it, he will understand.

Let us know how the meeting goes...
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
08-15-2014, 08:33 AM   #6
StarRibbon
 
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I'm so sorry to hear you're struggling so much.

I'm not sure how SSI works but, if it's at all possible, you should speak to your doctor and make sure he is aware that you are still having symptoms. The prednisone should take away the inflammation but, there are cases when it doesn't work. You may need different treatments - one to induce remission (treat current inflammation) and a stronger maintenance med (something other than asacol)??? Getting into remission would certainly help with many of the problems you're dealing with.

Re school, do you have a 504 (I think that's what it's called??)? I'm assuming that is what your upcoming meeting is about. I'm going to tag Clash, Jmrogers, Patricia - they have kids in high school in the U.S. and may be able to give you more advice re what you should expect from the school.

There's also a teen forum here - you may be able to get advice from other teens about your concerns re school.

As far as your dad... I'm sorry that you have this added frustration. There are many, many people who do not understands IBD. At this point, all you can do is try to educate him and he'll, hopefully, eventually understand that UC is not caused by diet, etc. It may also be that he needs to blame 'something', it's hard to accept that your child has a chronic illness and even harder to accept that it can be random. But, nevertheless, your father should try to understand and be supportive. Hopefully, if he becomes better educated about it, he will understand.

Let us know how the meeting goes...
My doctor knows about it, or at least part of it. I informed him on the joint pain, but he doesn't quite know why it happens. (Though, he explained my back hurts from the medicine.) Right now, Asacol is the only option to try right now, but affordablity and the like makes it hard to afford many medication. (Plus-the severity I guess. I'm not sure. )

I'm going to ask about the meds since, on the same day as my meeting, I have a doctors appointment. (Yay?)

I don't know if they have the 504 plan- I heard of it before. (I looked it up a few times.) Its my school that has issues complying. My doctor at least said the school likes to say they 'never received it'. It doesn't help that this meeting is the last friday before school starts. We tried telling them over and over.

There is a teen forum here? Thanks, I will check it out!

The funny thing is that everyone in my family does have autoimmune issues. He just has a terrible time trying to be supportive. -.-
08-15-2014, 09:24 AM   #7
Tesscorm
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My son has never used pred but I do think I remember reading it can also cause aches and pains. I'm not sure how long it takes to work but, hopefully, you'll begin to see some improvement. And, sorry, I can't help with the insurance issues and cost coverage - we have a different system in Canada.

Also going to tag Kimmidwife - she has lots of experience with women's health and might be able to suggest something for your periods.

Hopefully, your school will be a bit more accommodating this year! Also going to tag mylittlepenguin as I believe she's also familiar with the 504 plan - perhaps one of these moms can give you some advice on what's reasonable for you to expect from your school.

And, just lots of hugs re your dad... it's just hard with some people. Hopefully, you can get support and understanding from your mom and other family members with auto-immune illnesses.
08-15-2014, 09:26 AM   #8
StarRibbon
 
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My son has never used pred but I do think I remember reading it can also cause aches and pains. I'm not sure how long it takes to work but, hopefully, you'll begin to see some improvement. And, sorry, I can't help with the insurance issues and cost coverage - we have a different system in Canada.

Also going to tag Kimmidwife - she has lots of experience with women's health and might be able to suggest something for your periods.

Hopefully, your school will be a bit more accommodating this year! Also going to tag mylittlepenguin as I believe she's also familiar with the 504 plan - perhaps one of these moms can give you some advice on what's reasonable for you to expect from your school.

And, just lots of hugs re your dad... it's just hard with some people. Hopefully, you can get support and understanding from your mom and other family members with auto-immune illnesses.
Aw, thanks
08-15-2014, 10:10 AM   #9
kimmidwife
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Hi StarRibbon,Welcome to our forum. Sorry you had to find us but glad you did!
Firstly about homeschooling. We homeschool all our kids. But our homeschooling journey was started because of our daughter with Crohn's.
When she got to high school they were not at all understanding and kept giving her issues with using the bathroom. She ended up getting sick again and we started homeschooling her and it was the best thing we ever did. We have used several different online programs. There are millions of options to choose from. If you do go that route find the local homeschool groups in your area and join them. You will make friends and be able to go out with them and it can be really fun and much more relaxing.
About your mensturation making the UC worse. That definitly is possible. However the way you are describing the pain makes me think you may have some other issues going on as well. Have you seen an OB/GYn? If not you need to see one immediately. Please get your Mom to make you an appt.
Thirdly, for the joint issues you need an appt with a rheumatologist.
Lastly here is something to show your father. It is directly from the Crohn's and colitis foundation of America. It states right out you did not cause this.
http://www.ccfa.org/resources/living...e-colitis.html
Keep us posted on how you are doing.
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
08-15-2014, 10:27 AM   #10
StarRibbon
 
Join Date: Aug 2014
Hi StarRibbon,Welcome to our forum. Sorry you had to find us but glad you did!
Firstly about homeschooling. We homeschool all our kids. But our homeschooling journey was started because of our daughter with Crohn's.
When she got to high school they were not at all understanding and kept giving her issues with using the bathroom. She ended up getting sick again and we started homeschooling her and it was the best thing we ever did. We have used several different online programs. There are millions of options to choose from. If you do go that route find the local homeschool groups in your area and join them. You will make friends and be able to go out with them and it can be really fun and much more relaxing.
About your mensturation making the UC worse. That definitly is possible. However the way you are describing the pain makes me think you may have some other issues going on as well. Have you seen an OB/GYn? If not you need to see one immediately. Please get your Mom to make you an appt.
Thirdly, for the joint issues you need an appt with a rheumatologist.
Lastly here is something to show your father. It is directly from the Crohn's and colitis foundation of America. It states right out you did not cause this.
http://www.ccfa.org/resources/living...e-colitis.html
Keep us posted on how you are doing.
I've been debating the whole public vs homeschooling. Its hard to decide. I know most of the teachers that are on my schedule-most of which would probably be easy to explain to them. (I even have a double period in the morning of art, if I need to eat or go, it won't be a huge issue luckily. ) I'm testing the waters to see if I can handle it first I guess.

I tried telling doctors. I always tell them, but they reply the same way every time. I was tested for PCOS (since my sister has it) but other than slightly elevated hormones, it wasn’t bad. I recovered from the tiredness (in January) only for it to end up coming back in spades because of this. Then again, I only told my doctor (pediatric) and the hormone specialist. (They thought I had diabetes or PCOS) I should bring it up next time.
08-15-2014, 10:34 AM   #11
kimmidwife
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What about endometriosis? Did they check you for that? Also maybe they can put you on a pill so you only get your period four times a year. That way you limit those bad times.

Last edited by kimmidwife; 08-15-2014 at 10:34 AM. Reason: Spelling
08-15-2014, 10:38 AM   #12
StarRibbon
 
Join Date: Aug 2014
What about endometriosis? Did they check you for that? Also maybe they can put you on a pill so you only get your period four times a year. That way you limit those bad times.
They never bothered. I thought to check for endo you have to do biopsies (and they wouldn't do that)? I was thinking of the pill, but will it mess with my UC or medication? I always suspected Endometriosis, but whenever I brought it up, they would say "its just a bad period."
08-15-2014, 11:05 AM   #13
mish2575
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Regarding your dad: If you have a smartphone I would suggest downloading GI Monitor. its a free app. You log your symptoms and food and pain levels. you will start to see a pattern of any fooods that trigger you or if you are in such chaos that foods don't matter. I did this to help get my husband off my back who was trying to dictate my diet.

I think if your Dad sees you taking initiative to figure it out he may lay off, if he doesn't you can show him the report and let him see that regardless of what you eat your symptoms are still there.

For school: How many times a day are you going? How many "times of day" do you go, like mornings, evenings, etc. if you go like 4 times within 2 hours every morning and its followed by pain (that is my current M.O.) see if there is anyway to move the time of day to evenings so that the bm's and pain are at night when you can sleep it off.

When I was younger (I developed Crohn's in my 20s) I would take immodium AD before going out, that really helped. I also would just push through the pain and force myself not to go the bathroom and the urgency would usually retreat.

Granted, we are all different and tips don't always work the same for everyone. I just wanted to throw mine out there in case they matched and were helpful for you.

Good luck.
08-15-2014, 11:07 AM   #14
mish2575
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Hi, sorry to hear you are struggling. I hope your school manages to come up with a plan. My son has missed a couple weeks here and there and we usually have the guidance teacher co-ordinating with all the rest to get work sent home or posted online for him. You mentioned the meds you are taking but it doesn't sound like you are taking anything for your bad periods? I am obviously not a medical professional , but I have had a couple friends with bad periods. They did find some relief by going onto the contraceptive pill - it didn't take all symptoms away, but every little helps.
Lots of the kids on the forum see a rheumatologist as well as a GI as joint issues are common. It might be worth seeing one too.
Agreed about going on the pill. When I was 18 my periods were long and painful so I went on birth control. pills made my PMS symptoms almost disappear and made my period go from 8 heavy days to 5 light days.

I'm currently on an IUD (Mirena) and don't get periods at all. That one hurts going in though, especially if you have never been in labor (dialated cervix).
08-15-2014, 11:12 AM   #15
mish2575
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The funny thing is that everyone in my family does have autoimmune issues. He just has a terrible time trying to be supportive. -.-
(guys stop reading)
its a male thing. . . When they encounter something hurting their loved one that they cannot fix it angers them and they lash out at the wrong thing. it is a sign of love, even if it doesn't feel like it.

maybe if he is going on about it sometime (and you and his angers aren't flaring) you could simply say something like: Dad, I appreciate that you are angry for me but it is coming off as angry at me and just adds to my stress level. (you may want to ask your mom the best way to approach him)
08-15-2014, 11:15 AM   #16
mish2575
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They never bothered. I thought to check for endo you have to do biopsies (and they wouldn't do that)? I was thinking of the pill, but will it mess with my UC or medication? I always suspected Endometriosis, but whenever I brought it up, they would say "its just a bad period."
do yo have a GI (Gastrointestinal) doctor? a pediatrician is not the right doctor for this. An OB/GYN Doctor can test for endometriosis and possibly prescribe birth control pills that we mentioned earlier.


sorry for all the posts.
08-15-2014, 11:15 AM   #17
StarRibbon
 
Join Date: Aug 2014
Regarding your dad: If you have a smartphone I would suggest downloading GI Monitor. its a free app. You log your symptoms and food and pain levels. you will start to see a pattern of any fooods that trigger you or if you are in such chaos that foods don't matter. I did this to help get my husband off my back who was trying to dictate my diet.

I think if your Dad sees you taking initiative to figure it out he may lay off, if he doesn't you can show him the report and let him see that regardless of what you eat your symptoms are still there.

For school: How many times a day are you going? How many "times of day" do you go, like mornings, evenings, etc. if you go like 4 times within 2 hours every morning and its followed by pain (that is my current M.O.) see if there is anyway to move the time of day to evenings so that the bm's and pain are at night when you can sleep it off.

When I was younger (I developed Crohn's in my 20s) I would take immodium AD before going out, that really helped. I also would just push through the pain and force myself not to go the bathroom and the urgency would usually retreat.

Granted, we are all different and tips don't always work the same for everyone. I just wanted to throw mine out there in case they matched and were helpful for you.

Good luck.
I'll try the app Thanks for the suggestion.

I go 5-6 times a day. The mornings are worst (by mornings, I mean early in the morning. ) and the nights. Every morning, depending, I can go 3 times and it takes a long time. (Longest time would be a hour. ) I normally go only when I eat, but it doesn't always work. (The longest time I was out without needing to go was 3 hours) I can technically hold it if I am seated. I can't hold it if I am moving. Though, I have to eat so maybe immodium would help with this. (I have to have two snacks during school and my lunch, evenly spaced since I can't eat much)
08-15-2014, 11:21 AM   #18
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Join Date: Aug 2014
do yo have a GI (Gastrointestinal) doctor? a pediatrician is not the right doctor for this. An OB/GYN Doctor can test for endometriosis and possibly prescribe birth control pills that we mentioned earlier.


sorry for all the posts.
Yes I do, ever since I was diagnosed with UC. How do they test for endo?
08-15-2014, 11:32 AM   #19
Maya142
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Hi StarRibbon,
I have a daughter who will be a high school senior in the fall. I definitely agree that a 504 plan is very important. CCFA has a great 504 plan template. Your school is required to comply by law.

I'm going to tag my little penguin, because she knows a lot about the legal stuff.

Here's a brochure you can give your teachers so that they're aware of the situation:http://www.ccfa.org/assets/pdfs/teac...hure_final.pdf

Template for the 504: http://www.ccfa.org/resources/templa...-504-plan.html

Before my daughter had a 504 plan, I just used to email her teachers at the beginning of the school year, just telling them about the situation. Every teacher was very nice and accommodating, we only got a 504 plan for her because she was missing so much school and we didn't want her to lose credit.

Hang in there! I hope your medication starts working soon!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-15-2014, 11:34 AM   #20
StarRibbon
 
Join Date: Aug 2014
Hi StarRibbon,
I have a daughter who will be a high school senior in the fall. I definitely agree that a 504 plan is very important. CCFA has a great 504 plan template. Your school is required to comply by law.

I'm going to tag my little penguin, because she knows a lot about the legal stuff.

Here's a brochure you can give your teachers so that they're aware of the situation:http://www.ccfa.org/assets/pdfs/teac...hure_final.pdf

Template for the 504: http://www.ccfa.org/resources/templa...-504-plan.html

Before my daughter had a 504 plan, I just used to email her teachers at the beginning of the school year, just telling them about the situation. Every teacher was very nice and accommodating, we only got a 504 plan for her because she was missing so much school and we didn't want her to lose credit.

Hang in there! I hope your medication starts working soon!
Thanks for that, it helps!
08-15-2014, 04:15 PM   #21
kimmidwife
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Starribbon,
They can sometimes see some things on ultrasound. Sometimes they have to look laparoscipally. But even just trialing a birth control pill might be a good idea. Sounds like you may need a different OB/Gyn doc who is willing to listen to you.
08-15-2014, 04:30 PM   #22
StarRibbon
 
Join Date: Aug 2014
Starribbon,
They can sometimes see some things on ultrasound. Sometimes they have to look laparoscipally. But even just trialing a birth control pill might be a good idea. Sounds like you may need a different OB/Gyn doc who is willing to listen to you.
I'll try asking about that Thanks.
08-16-2014, 09:11 AM   #23
SupportiveMom
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· Stoma
StarRibbon, Thanks for reaching out to us parents. I hope we all are able to give you some answers you are looking for to figure out how to manage your disease going forward.

My 13 year old is starting high school in 2 weeks (who has crohn's) and she is worried about the more hectic schedule of high school her older sister deals with. I understand why you don't want to do home school, especially for your last year. High school is really a social event mixed with education & it is a system you are used to. Going 5-6x a day is manageable to go to school IMO. You will just need some schedule modification, especially if you are clustering your bathroom trips in the morning. My kid up until July was going 10-12x a day and still went to school when she wasn't in the hospital. The school allowed her a bathroom pass that wasn't contingent on when the teacher let her go. She only had to make eye contact with the teacher & gesture or tell a nearby student she was going to the bathroom. Knowing this option was there for her at any time calmed down her anxiety about being able to go hen her body said she had to go RIGHT NOW.

I am working with her teachers to set up getting the lesson plan every day so in those cases she misses too much class in the bathroom she will have the opportunity to catch up after hours. I am also in the middle of searching for a tutor to help teach those concepts she may miss. She is also going to have to network with other students for lesson taking.

The 504 plan is helpful to many. The best tool is communication. From what I am hearing from other parents here in Canada is that most everyone is willing to work with you to give you the best education possible and get you to graduate.Unfortunately it does mean a lot of the work falls on you & your parents. (friends can help too!) It sounds like this diagnosis is fairly new for you. In time you will figure out what you can/can not do to give you back the life you are used to having as best as you can. Rally your friends for support. It will make for a more successful year for you.

Keep us posted. (BTW about your father, I hope he comes around in time for you. If not, learn to get the support elsewhere. Until he changes it is all you can do)
__________________
Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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08-16-2014, 09:27 AM   #24
StarRibbon
 
Join Date: Aug 2014
StarRibbon, Thanks for reaching out to us parents. I hope we all are able to give you some answers you are looking for to figure out how to manage your disease going forward.

My 13 year old is starting high school in 2 weeks (who has crohn's) and she is worried about the more hectic schedule of high school her older sister deals with. I understand why you don't want to do home school, especially for your last year. High school is really a social event mixed with education & it is a system you are used to. Going 5-6x a day is manageable to go to school IMO. You will just need some schedule modification, especially if you are clustering your bathroom trips in the morning. My kid up until July was going 10-12x a day and still went to school when she wasn't in the hospital. The school allowed her a bathroom pass that wasn't contingent on when the teacher let her go. She only had to make eye contact with the teacher & gesture or tell a nearby student she was going to the bathroom. Knowing this option was there for her at any time calmed down her anxiety about being able to go hen her body said she had to go RIGHT NOW.

I am working with her teachers to set up getting the lesson plan every day so in those cases she misses too much class in the bathroom she will have the opportunity to catch up after hours. I am also in the middle of searching for a tutor to help teach those concepts she may miss. She is also going to have to network with other students for lesson taking.

The 504 plan is helpful to many. The best tool is communication. From what I am hearing from other parents here in Canada is that most everyone is willing to work with you to give you the best education possible and get you to graduate.Unfortunately it does mean a lot of the work falls on you & your parents. (friends can help too!) It sounds like this diagnosis is fairly new for you. In time you will figure out what you can/can not do to give you back the life you are used to having as best as you can. Rally your friends for support. It will make for a more successful year for you.

Keep us posted. (BTW about your father, I hope he comes around in time for you. If not, learn to get the support elsewhere. Until he changes it is all you can do)
I will keep you all posted I'm really grateful right now, honestly. With this support and the happenings, I realize it could have been worse, and I thank god everyday. (I'm simply glad I was the weight I was- I was fat in the beginning of June, 157-158 pounds. I wasn’t hospitalized because of this, so now I'm in perfect body weight, if not, on slightly overweight for my height. )
08-16-2014, 09:27 AM   #25
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We had a 504 for my son at his last school and it worked fairly well. Because his last school was a military prep school and the physical aspects were too much for him since he was not in remission we chose to move schools.

He has a 504 at his new school but it is a flex school and the majority of his subjects are done as independent study so the 504 isn't needed as much. He is a senior this year and is trying to decide if he was to double up for the first half of the year so he can graduate early. It's his decision but I'm not to keen on it because he will be having surgery scheduled soon and I think doubling up will just add stress.

As far as trialing bc I think that is worth a shot! I truly hope that you and your Dad can reach an understanding and maybe if you can put in writing how his words and actions make you feel it can grow from there into a conversation.
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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
08-22-2014, 05:39 PM   #26
StarRibbon
 
Join Date: Aug 2014
My meeting went not so smoothly, if you can call it a meeting. It was barely that-all they said was to "get a doctor's note."My father was there, "thankfully" because he thought it went smoothly-thus wasn't annoyed. Basically, they tried giving me hints. I can not take my pills myself apparently so I have to divide my asocal for them, though its pointless because the nurse is CONVINCED its every 8 hours. (Suggesting I should take them after school or something) They were not informative and the lunchlady who is SUPPOSED to be there wasn't. After all this information was relayed, my doctor (who I visited for my appointment afterward) gave me a letter that pointed out the obvious.

-I don't do gym until December basically (Thanksgiving Break)
-SNACKS AND MY DRINK (though, it seems very pointless because its dumb to think that if I eat in class others would look at me weird, but wouldn't it be worse to force me to eat in the nurse's office randomly? I eat randomly through the day ANYWAY like most people. It just shows I'm different. )
-elevator rights
-extra time to go to class. (Though-I WILL BE TARDY if I go to the bathroom...which is stupid..if I need to go in transition)
-unlimited bathroom
-etc.

My mom blew a gasket when she found out nothing really transpired and, I have a feeling, that she is taking me to school the first day (not going by bus) just to tell them off. I know this, because she told me that she'll 'straighten' them out. I brought dad there so I could avoid the ghetto momma drama but I'm afraid it'll occur.

Ps:I couldn't get a refund on my SAT despite everything. (Thus got me mad myself since I deserved one after the instructions they gave me)
08-22-2014, 05:45 PM   #27
Maya142
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Join Date: Jul 2013

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I'm confused - are those the accommodations they gave you or what your doctor's note said?

Here is a good summary of your rights for your Mom. Perhaps she can use it to get the school to listen: http://www.ccfa.org/assets/pdfs/edequity.pdf
08-22-2014, 05:48 PM   #28
StarRibbon
 
Join Date: Aug 2014
I'm confused - are those the accommodations they gave you or what your doctor's note said?

Here is a good summary of your rights for your Mom. Perhaps she can use it to get the school to listen: http://www.ccfa.org/assets/pdfs/edequity.pdf
Both in a sense. He gave me some of the accommodations that are listed and a few more. We brought in the 504 template and it didn't take well.

My mom-being that she worked for the school system, she knows the happenings. (Which is why she's also mad) Thanks for that.
08-22-2014, 05:51 PM   #29
my little penguin
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Join Date: Apr 2012

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About the asacol most schools require a med form so either get that or your Gi own form - it can state the dosage and time to be taken while at school - doc signs it so nurse has to follow it.
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08-22-2014, 05:52 PM   #30
Sef0912
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Join Date: Aug 2014
Location: Texas
They never bothered. I thought to check for endo you have to do biopsies (and they wouldn't do that)? I was thinking of the pill, but will it mess with my UC or medication? I always suspected Endometriosis, but whenever I brought it up, they would say "its just a bad period."
I am out of my teens, but my period always aggrevates my Crohn's, or possibly vise versa. I have PCOS and have been tested for endometriosis. I would suggest being tested for endometriosis (I think the start is a vaginal ultrasound and blood tests) and re-tested for PCOS. So far, my medication for PCOS {birth control} hasn't really reacted with my Crohn's medication, although I just recently got a full diagnosis and my medication keeps changing. I hope they can find something to help you with your periods and with your UC. I have checked on the CCFA website, and there are some financial supports for different types of medications. I hope this helps and that you get to enjoy your senior year to its fullest.
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