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crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/15/2008 9:08 AM (GMT -7)   
So exactly two weeks until I go to college. I went and filed with disability and then went a saw a new doctor at MassGen. I loved her and she was great. After 2 1/2 hours in her office with her she determined that i did either need a colostomy or I could try to get back on some of the evil drugs.... so i picked evil drugs. She put me back on prednisone (which i HATE) and im nervous how i'll look going to college for the first time with a "moon face". I think im mostly scared so much because when i was on pred my freshman year in highschool i went through some extreme emotional damage from how cruel all the kids in my school were to me due to my fat face. im nervous people wont like me or whatever. i know that's dumb but it's just on my mind. she also put me on a antibiotic, augmentin. oh and not to mention the foam and cort enemas to be taken twice a day on top of my humira which is now every 1 week instead of every 2! haha here we go.....
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/15/2008 10:05 AM (GMT -7)   
Glad to hear you had a good appt with your new doc. I pray that the drugs help you to get back on the road to recovery.

I think now that you are in college I think you probably won't have as many problems at school. Everyone is a little more grown up in college, so hopefully you won't get the childish behavior you did when in the 9th grade.

Hope you get feeling right as rain soon. And that your college experience is a wonderful one.

Hugs,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/15/2008 10:34 AM (GMT -7)   
thanks so much! i hope you are right
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


ImaKeeper
Regular Member


Date Joined Nov 2007
Total Posts : 51
   Posted 8/15/2008 11:13 AM (GMT -7)   
Well first off Im glad that all went well with your doc, and just like nanners said things in college are usualy different there were many times when I attended classes looking not the best (the dreded moonface shocked ) and nobody paid it any attention, in fact there were some people who I met in my classes that had different facial scars that said the same thing that they were terrified to go to college after how they were treated in high school, but ended up having the time of their lives there and never felt out of place....good luck....and hope u continue to feel good, well except for the pred.....
currently taking

pentasa, hyocosamine, zofran, acphix and started Remicade back in May


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 8/15/2008 3:36 PM (GMT -7)   
Its not dumb,,everyone goes through the butterflies in new experiences not just college. Learning is a life long experience not just 4 years. Some majors work in small groups of 4 students. Work at your pace for the goal you are seeking. So you can take longer (like an extra year or more) or shorter (like adding summer courses). Im not saying you will need either and also just taking some pressure off you. Nothing wrong with adjusting as you go either. 4 year curriculum is alot of information:) Professors are a great link to employment opportunities so make some good ties there too. keep posting re: on the augmentin, i never took that, i guess since im allergic (swell up) from penicilin.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/15/2008 4:55 PM (GMT -7)   
I'd like to think that the people you deal with in college will be more accepting of this kind of condition. I'm going starting my sophomore year at college this coming Wednesday and I am EXTREMELY nervous about being able to keep up. It seems you and I are in the same boat having gone through all this blood loss recently and need for new meds/painkillers/etc.
As for the moon face...as long as it means you're feeling better right? Much better to suffer that than experience college while in a flare. Here's to us doing really well this coming semester :) I'm sure you'll be fine!!
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/15/2008 5:05 PM (GMT -7)   
thanks i hope you do well too! and i have no idea what to expect really so just want to make my main focus keeping up with my classes because that is the main reason why im there. so are you dealing with prednisone side effects or have you at college? and how did people react?
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/16/2008 6:44 AM (GMT -7)   
This will be the first time I go back to college after beginning the prednisone actually. I was diagnosed officially just shortly after classes ended(what a hellish semester!!!). I don't think my classmates will be a problem though. Honestly, fie on anyone so shallow to make a big deal about me having a rounder face too you know? I am a little concerned about when I have to start wearing a face mask after beginning an immunosuppressant BUT I think that will be fine too. Generally, people at college have been all right. I'm sure they'll be fine with you too. And if not, why bother with them? They've had enough time to grow up and get over the fact that some people have to live life a little bit differently. At some point they'll have to realize they're not in high school anymore.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/17/2008 2:24 PM (GMT -7)   
maybe this is a bad decision on my part but i decided to hold off with the prednisone despite the doctors orders because i just have so much emotional scarring from my first freshman year that all i want is a new start and i dont want to start my last freshman yeah the same way i started high school. i want to meet people as me, not the prednisone monster i become (looks and acting), and let them like me for me and then warn the people i become friends with and maybe they will be more understanding if i start on it once the school year starts up. that way they can know it's not really me being that way and forgive me for my mood swings and other things
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/18/2008 5:02 PM (GMT -7)   

Well for one thing, remember that no one at school will know what you really look like.  The new friends you make will think you just look and act like that, and like you the way you are.  Then when you go off pred., your friends will think you are getting better looking and getting a sweeter disposition!!   tongue   tongue tongue    Also, you should focus squarely on getting great grades, rather than socializing, because grade average you get in your first year is difficult to change as time goes on.  So don't worry about how you will look -- just go to school and have fun on the side!  I think getting the CD under control is very important, and the sooner you do, the sooner you can go off pred.


Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  No other symptoms.
Allergic to Remicade and Humira.  Currently on 6MP.
 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/18/2008 5:08 PM (GMT -7)   
Genuine people you want to meet will be good to you no matter what the prednisone does to you. I hope you change your mind about going against your doctor's orders to take it..just remember that the really good friends you make are the ones who can handle you Crohn's, prednisone, occasional moon face, and all. Not taking your medication could make your semester so much worse..or keep you from experiencing it altogether considering the horrible symptoms of NOT taking your prescribed medication. I sincerely hope you change your mind :( I worry for you.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/18/2008 5:10 PM (GMT -7)   
And just an added note--many of my friends were less accepting after knowing the normal me and then experiencing me AFTER I was diagnosed with Crohn's. It's better that people know right off the bat what they are dealing with rather than giving them a false picture of how things are and then revealing what life really is like for you. It will let you find out who your real friends are to hide it initially and show it later, but more painfully so. If you come as you are I really think you will be happier in the end.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 8/18/2008 5:23 PM (GMT -7)   
Cp13, i would just start with the prednisone now so you can better handle the stress of starting school. really its not gonna be the same as high school. there will be so many thousands of students , heck no one will even notice you..:0).. instead of 30 kids in class there may be 200 in alecture room. and someone is gonna be way more noticable than you! the goth,the hippie, the dreadlocked stoner, the guy in the dress! the girl in hooker shoes etc...

just go to class and enjoy yourself! learn as much as you can and dont worry so much. everyone does it justdoesnt help.

you know even the homecoming queen from your class is worried as heck. cause when she goes to college , shes just a new girl like every one else and has to start all over. and how many queens you think are gonna be there with her. lots.
randynoguts 



     http://www.geocities.com/randynogutsweb/


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/18/2008 7:01 PM (GMT -7)   
thanks you guys are really making me consider just taking it, but it's been a while since i've been on prednisone, does it really make that much of a difference for getting out of a flare?
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/18/2008 7:08 PM (GMT -7)   
I've noticed a world of difference. You always want to take into account the stressors that will come along with the semester..anything that you will have to help you should definitely take or at least in my opinion. It's just that I worry so much about if you were to go into a flare, and I feel like if you follow what your doctor prescribes you will avoid so much pain and stress..I don't want your semester to go poorly :( BUT it did make a difference for getting me out of my first flare and right now it is definitely helping with keeping my condition under control. Hopefully it will be the same for you granted to stay on it. I really do wish you the best of luck with any decision you make!! Just keep well :)
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/18/2008 7:28 PM (GMT -7)   
thanks so much for the support you guys. and if you dont mind me asking LMills what dose of prednisone are you on and have you had to deal with the "moon face" at school?
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/18/2008 7:47 PM (GMT -7)   
and by the way, i caved and decided it is a little ridiculous, i mean if i'm going to let what people could potentially think about me deter me from feeling better, that's dumb. so i took the prednisone tonight, so i only missed a day (which could have happened anyway if i had just thrown up)... but i need to stop caring about what other people think and need to really get better, a year in a flare is not acceptable!... and it's getting worse by the day
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/18/2008 8:07 PM (GMT -7)   
I just went down from 40 mg to 35 mg this past Saturday. I think I've been on the 40 for a couple of months now though just to get through the day.
As for the moon face at school! I will be dealing with it starting this Wednesday, but I really don't mind. People will have to accept me for what I am no matter what stage of medication and disease I am in. I can't say I'm terribly worried :) Randy is totally right in that most classes will have so many people and and they will probably not notice anything although occasionally I will be wearing a face mask during flu season and I will be taking x-number of of my 15+ daily pills, but if I can handle it then so can they. As for how my true friends have handled it, I've had so many people say it's cute so I don't know. Personally, I feel funny with my face so round, but I'd take it over a flare any day...and it gives me an excuse to wear my hair down.

I am SO glad you've decided to stay on your medication. I really think it will make things easier for you..god college can be so stressful sometimes haha. The feeling on completing a semester is amazing though. What kind of classes are you taking by the way? I'm starting the first round of my physics, math, and chemistry as well as a psychology course..trying to take it easy with 13 hours, but I am hoping my diet and medication will keep doing well while I try and keep the stress levels down.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/18/2008 8:12 PM (GMT -7)   
im taking two economics classes, a spanish class, and a mandatory freshman culture class. the good news is i only have two classes everyday so it's very evenly distributed and two days a week my classes only run from 9 am with the last class ending at 1230 in the afternoon so ill have plenty of down time after getting the morning over with. and then the other three days i dont have class til 11 and then my last class is done by 330 so still plenty of time to nap and manage my diet... the thing im most nervous about is how our campuses are divided, the academic campus where all the classes are is three blocks down the road from the residential campus is where our dorms and dining hall is. this could be bad seeing as i have trouble getting from point a to point b with all the keeling over in pain and fear of accidents... but i think it will be doable
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/18/2008 8:14 PM (GMT -7)   
and by the way this is kind of corny but i just want to let you know that i really respect what you all say and think and even though we dont know each other on a personal level, i really trust in your opinions, and LMills, i really look up to you with how brave you seem and you inspire me to really try to make college work seeing how you have made it work so far. not many people know what we deal with and it's nice to be able to talk wiht someone who can have sincere advice. thanks!
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/18/2008 8:21 PM (GMT -7)   
Oh god..yes, the distance factor between classes!! I was lucky enough to get mine pretty close together, but I'm also worried about that. It's amazing how difficult it is just to get around..I'll be happy just to make it to and through and each one. I'm trying to do the same thing you're doing though as far as having the classes spaced out is concerned. I think we'll be okay :)
And that's not corny..it's been really helpful to talk to you as well. It feels really isolating sometimes when there are so many friends that can cope normally with college and there is no one else to talk to going through this..you've been a great help to me too :) I'm envious of the Spanish class by the way! I want to take it so badly, but the only one open was two hours long and the intensive course so maybe next semester.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/18/2008 8:26 PM (GMT -7)   
haha well try and stick with it and see if you can take one eventually, i took four years in high school and did mission work in honduras and it's great to be able to speak another language! it's not easy to learn though. but yeah i hope things go well for you, you must be heading to school soon. i have 10 days til i move in, so i figure if i continue with the pred right now it will at least give me a little over a week to get used to the night sweats and aches associated with it.
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/18/2008 8:36 PM (GMT -7)   
Oh wow...I bet that's going to help you so much in the long run with you career! I think it has to be one of the most useful languages to learn...
I'm sorry about the night sweats and associated pain...are those really common for you and can you get rid of them with something else? It's a shame that the prednisone has to be the double-edged sword.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/18/2008 8:40 PM (GMT -7)   
Crohnspatient13 - have you ever asked your doctor about entocort? It has less side effects than pred because it is non-systemic. It is released in the gut and much less gets into the blood stream. But it depends on where your disease is located to determine if it will be ok for you or not. Second, not everyone gets the same reactions to pred every time. I have never taken it but I have friends who have. One is a gorgeous girl who has UC and she has been on high doses and never had a facial change. So maybe you will get lucky this time and not have it as much. Is it essentially retained water? Could you ask your doc about a diuretic to help release that? I think it is very smart that you have decided to follow doctors orders but at the same time I understand your "vain" concerns and wanting to look your best and feel confident. But here is what I decided. I feel a lot more confident with acne from entocort than I do about to poop my pants from an unmedicated flare.

LMills: Did your doc say you needed to wear a mask? Many people on here are on those drugs and I don't think they wear masks on a regular basis. I had an immuno-supressed professor (chemo) and she just announced "due to my lack of immune system I would appreciate it if you think you may be sick to stay home from class. I would be happy to go over what you missed when you are feeling better." Maybe if you are comfortable you could tell the people you see the most and are in close contact with (like a roommate) that you are immunosuppressed and if they get a cold/flu to let you know so you can wear the mask. If you are willing to wear the mask without a fight I am so impressed. You go girl. But I just wouldn't want you to wear it if it wasn't necessary.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/18/2008 8:41 PM (GMT -7)   
i know it is such a double edged sword. i was talking to my mom about it tonight and it pretty much is just a lose lose situation. but yeah i got prescribed percocet for pain but sadly it makes me to incredibly nauseous that i can't get any relief unless i actually throw up, but at the same time if i dont take the pain pill i still notice some nausea which could also be from this new antibiotic my doctor just put me on, so i dont know! haha
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too

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