I miss being a "normal" teen

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Bella_lostmybag
Regular Member


Date Joined Dec 2008
Total Posts : 104
   Posted 5/9/2009 4:37 PM (GMT -7)   
Its so hard to look at people my age and not be jealous. I missed my senior prom bc of my stupid surgery and I cant help but look at everyones prom pictures =( Its such a bummer. I miss being a teen..doing whatever whenever. Now im always worried about where the closest bathroom is and if someone asks me to go somewhere Im always worried if its longer than 10 mins away from my house bc what if i have to potty? I mean, I know itll get better eventually..but when? Im 12 days outta surgery (ileostomy reversal) And so far, I cant stop complaining about how much my butt hurts or itches..why does it itch so bad..or how i cant sneeze bc itll hurt or how i cant cough bc itll hurt..Ill be eating something and in the middle of eating I have to stop and run to the bathroom. I graduate May 29th and Im SO scared that my belly wont be calm enough to sit for like 2 hrs waiting to get my diploma..And spot night is May 23rd where we have this huge parade and decorate our cars and ride around town and squirt everyone with water guns..
So im in dire need of advice..do you think ill be able to do those two things..like..will my belly be calm enough? Or will i still be pooping like a mad woman? lol PLEEEASE help =(
17, SENIOR in high school
Dx with Ulcerative Colitis on March 18,2008
Step1 Ileostomy on Nov.19,2008
Step 2 April 29th!!
 
"The past is history, the future is a mystery. Today is a gift, that's why it's called the present"


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 5/9/2009 7:16 PM (GMT -7)   
sorry you had to miss your prom. sad As for the graduation and parade night, that's still over 2 weeks away, a lot can change so I have hope for you! How about telling your surgeon or GI about these events and see if they have some advice? Are you taking anything to slow down the D-maybe immodium or codeine to slow things down. As for the itching, definitely tell your surgeon--might be able to give you something for that too. By the way, my rectal wound itches so bad too!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 764
   Posted 5/9/2009 7:17 PM (GMT -7)   
Bella, I feel so much for your situation. I have no answers because I haven't even had it done my surgery yet and am freaked right out. That being said does fasting for a day make any difference to how much might come out. Would taking meds to stop things up a bit work for you? Would wearing protection make it feel more secure without a bathroom near? Sorry you missed your prom, I missed mine too and 35 yrs. later I still think about it sometimes. Hope you get to go to the other activities and have a great graduation day!

Bella_lostmybag
Regular Member


Date Joined Dec 2008
Total Posts : 104
   Posted 5/9/2009 7:34 PM (GMT -7)   
Im going to see my surgeon sometime soon. Shes supposed to call this week and set up a dialation so Ill ask her for any advice =) I was given loritab for pain but I dont take them bc I HATE taking pain meds..but when I took them the first few days I was home I had to take stool softners bc they made my poop really hard but I was still going A LOT..so idk if anything like Immodium would work.. I thought it was for D?
Im super tired..pooping seriously wears you out HAHA So ill try to post more on here tomorrow but THANK YOU sooo much for the advice =D And sammies, I have hope too that ill be better by graduation
17, SENIOR in high school
Dx with Ulcerative Colitis on March 18,2008
Step1 Ileostomy on Nov.19,2008
Step 2 April 29th!!
 
"The past is history, the future is a mystery. Today is a gift, that's why it's called the present"


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/9/2009 8:16 PM (GMT -7)   
immodium is for D, but it will slow you down whether you have it or not. I didnt get the jpouch, but if i want to go a while without having to empty, i will take some immodium
Good luck!

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 5/10/2009 5:04 AM (GMT -7)   

Hi there! 

I am so sorry to hear you missed your prom.  I wasn't sick or anything my senior year, but in hopes to make you feel better, my date was a stiff, and I absolutely hated my night.  I had the most gorgeous dress ever, but everything else sucked.  So, even though I went, I wished I wouldn't have.  My junior year was a blast though!  : )  Then in college I went to a few formals for a fraternity and they were AWESOME!  So, you see, though you missed your senior prom, there are still opportunities to have the fun dress experiences.  However, I do understand your 'senior' prom being a milestone and the importance of having that experience.  I would hug you if I could.  You've already accomplished so much more than most kiddos your age.  Maybe once you're feeling much better and out of the bathroom paranoia, you and some friends could dress up and go for a girls night out at a nice restaurant and just live it up somewhere?! 

I'm sorry to hear you are having some pain issues.  I will not be having the reversal surgery, as I opted for the permanent ileo, but I did learn a lot about it on j-pouch.org.  I'm you've already joined there, but I talked to a wonderful woman named Rodshunny on there.  She would be more than happy to give you advice and guidance.  You can tell her that Robin told you to look her up and she would definitely send you hugs and squeezes via email and the phone if you wanted.  : )  I read many posts prior to my surgery while I was deciding which route to go.  I do know that some people take Immodium ritually throughout the day and what you're experiencing some dub 'butt burn'.  After my colectomy I had drainage and it was very uncomfortable and painful so I used A&D ointment.  I also used that when my UC was outrageous and my poor bottom had no time to rest between bathroom runs.

My heart goes out to you, as you are going through some pretty serious medical issues during a time when you should be worrying about kind of water gun to purchase and how to decorate your car.  Perhaps you could try the Immodium prior to your nights out and get an idea of how long it gives you away from the bathroom.  I would also monitor the foods and see if there are any certain kinds that seem to go through you faster.  I know it may sound silly, but that's what I would do if I had places to go like you do.  Even with my ileo, I make sure to eat certain foods througout the day so Penelope (my stoma) doesn't make a scene, b/c she is pretty verbal at times, or if I am super busy with meetings and do not have time to empty very often.  I've gotten my foods down to a science!

I wish you the best of luck and hopefully you'll be enjoying life very soon!!!!!!!!!!

smurf
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 5/10/2009 11:17 AM (GMT -7)   
Bella, sorry you had to miss your prom. It is one of those high school rituals that many want to go to (but over the years generally remember it wasn't as spectacular as they remembered lol).
Remember that you are only are less than 2 weeks since surgery! It's frustrating but give it some time. Bratcat saw a big change around the 2 week mark. That was the week she could have gone back to school but since it was only 2 days of classes (it was Thanksgiving weekend right after) she took the extra week before returning to school. Big difference in her case.
 
As for prom, Bratcat went to junior prom last year. She was pretty much in remission but still on steroids. It was tough finding a dress to compliment her lovely moonface side effects (although she looked lovely). She hates to look at her pictures from that night. She is looking forward to senior prom (although still looking for a date). She's not a big partygoer but wants to have that memory anyway.
 
Bratcat never really took any medicines to control her bathroom habits. However recently she tried Immodium (her brother with Crohns will take it if he knows he'll be away from a bathroom all day). Bratcat took it before she went into the city with her music honor society to a concert. They had to take the train (1-1/2 hour trip), eat dinner in the city, walk from the train station to Carnegie (about 20 city blocks), see the show, and then walk back to the train and return home. She said it did the trick wonderfully. Maybe you can try it. She hates taking any medicine anymore so I think she only took 1 Immodium pill for the entire time. Not sure what the "full" dosage would be.
 
Remember May 23 is 2 weeks away. There is a good chance that you will feel even better. And graduation is after that. In Bratcat's case, she found she did better when she had food in her system rather than not eating. She just tried to figure out what time she should eat to allow the food to pass through earlier than the event she wanted to attend.
 
Feel good. Try not to let it get to you. Don't make any final plans until the last possible minute.
--Mom of bratcat (18 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! Living and loving life as a teenager should!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 5/10/2009 12:30 PM (GMT -7)   
thought of something for graduation--

I know most schools don't call the students in alpha order anymore. So. . . how about asking to be called in the first 20 or 30 (I dont know how big your class is--around here they are 350). And asking to be assigned an outside aisle seat. Then, you could get your dilploma (and hear massive cheers) and then, if you need to sneak out to the bathroom, you'll be able to without a problem. What do you think?

Also, maybe carry some water during the ceremony or preplace it on/under your chair.

Back in the dark ages--I was 5 years into my crohn's at my graduation. Was selected both to sing a solo and give the benediction. You just made me realize how cool that was. THANK YOU!!!!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


Bella_lostmybag
Regular Member


Date Joined Dec 2008
Total Posts : 104
   Posted 5/10/2009 8:03 PM (GMT -7)   
Thank you bennie =) Im sure Bratcat looked beautiful with her moon face..I got my picture taken with santa at the hospital HAHA and i had moonface! And I love looking at that picture and laughing! I haven't tried immodium but i think im going to. It seems to work amazingly. 2 weeks and ill be outta high school ahh I cant believe it! In July, I turn 18..thats crazy to me..Ill be an adult lol Im not ready to grow up =p Mom and dad said I can live here til Im 40 if I wanted to hahah

Sammies, my school calls us in alpha order lol But my last name starts with B so I think Im going to ask my principal if after I get my diploma, if I have to use the bathroom, if I can just leave and go. Hes been a HUGE ..badword.. about my disease. I went to the board of education bc I failed geometry last yr..NOT my fault =( It would be one thing if I did my work and got an F on it. But my homebound teacher last yr didnt know how to teach it so I was horribly sick and in pain but still having to go to the school on like.lunch and after school and trying to get caught back up and have my geo teacher teach me how to do it. So I failed bc my teacher didnt know how to do it..not my fault. So I go to the board with mom and this guy goes in and CHANGES my grade from and F to a D..which im pretty sure is illegal..but he said he took care of it. Well, I go back at the beginning of the yr to get my schedule and whats on my schedule? Geometry! I was so mad. So I told my prinicpal I went to the board and talked them about it and he starts YELLING at me in my face in front of students in the hallway! Whyd you go to the board! You had no reason to! They dont have anything to do with my school! It was super embarrassing. So then, my mom went up there to try to figure out what was going on bc I was supposed to have a schedule after lunch bc mornings were REALLY hard for me when I had UC. And since I had to re-take geo, it was 2nd period, which was before lunch..which completely took away the point of having an abbr. schedule..Idk.. my principal had a brain tumor and he had surgery to get it removed. And when he came back to school after he healed, everyone..even the teachers say hes more mean now. I highly dislike my principal But luckily my vice principal is amazing so thats who we deal with =D

Im going to experiment with how much immodium I should take and how long ill be able to stay away from the bathroom. Itd be nice to for once an hr haha Dereck and I went to kmart and I used the bathroom there..then we went to walmart..had to leave there and come home to potty bc I hate using public bathrooms. I cant poo when I know someone is in the bathroom with me. lol I have to be alone =p

So, I hope you all had an amazing mothers day =) goodnight and God Bless
17, SENIOR in high school
Dx with Ulcerative Colitis on March 18,2008
Step1 Ileostomy on Nov.19,2008
Step 2 April 29th!!
 
"The past is history, the future is a mystery. Today is a gift, that's why it's called the present"


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 5/10/2009 9:32 PM (GMT -7)   
darn, I feel old!(only I really didn't say "darn", lol!)

Bella_lostmybag
Regular Member


Date Joined Dec 2008
Total Posts : 104
   Posted 5/12/2009 7:25 PM (GMT -7)   
haha vette guy =p age is just a number right? Its about how you feel inside!
17, SENIOR in high school
Dx with Ulcerative Colitis on March 18,2008
Step1 Ileostomy on Nov.19,2008
Step 2 April 29th!!
 
"The past is history, the future is a mystery. Today is a gift, that's why it's called the present"

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