My Daughter Has Crohn's

[jck3mom]

Hi everyone-
Three months ago, after emergency surgery for what we suspected was appendicitis, my amazing and wonderful 18 year old daughter was diagnosed with Crohn's. They removed a tangerine size mass and 10 inches of her intestines and handed us a lifelong chronic illness. Yes, I am angry beyond words!! I wish I could take it for her but so far my prayers to that effect have not been answered. She is the Salutatorian of her high school class and is getting ready to go to UVA in the fall. She is a straight A student, never given us a second of worry, and the last person in the world who deserves to suffer like this.

Okay-enough moaning. I just had to get that out of the way. I am glad to have found this forum where other people actually know what you are feeling. Thanks for being here.

 

[My Butt Hurts]

Welcome to the forum.
How is your daughter feeling since the surgery? Is she taking any medications now? I hope she gets her symptoms straightened out before she starts her college classes. Good luck!

 

[Guts Ache]

Hi everyone-
Three months ago, after emergency surgery for what we suspected was appendicitis, my amazing and wonderful 18 year old daughter was diagnosed with Crohn's. They removed a tangerine size mass and 10 inches of her intestines and handed us a lifelong chronic illness. Yes, I am angry beyond words!! I wish I could take it for her but so far my prayers to that effect have not been answered. She is the Salutatorian of her high school class and is getting ready to go to UVA in the fall. She is a straight A student, never given us a second of worry, and the last person in the world who deserves to suffer like this.

Okay-enough moaning. I just had to get that out of the way. I am glad to have found this forum where other people actually know what you are feeling. Thanks for being here.

Sorry for your daughter . My Crohns was diagnosed in pretty much the same way - suspected appendicitis, cut me open, removed the appendix but also saw something else in there they didn't like the look of. One biopsy and blood test later and its official - lifelong chronic illness as you so aptly describe it.

That was 7 months ago and I've been on medication for it ever since. Its manageable (just - I have a fairly stressful job so flare ups, even on medication, do still occur), just don't forget to take the medication, I have a couple of times and seriously regretted it. I seem to have it a fair bit lighter than people describe on here (or I'm a hard b'stard, one or the other!!! :ylol2: ) and touch wood the current course of pills (prednisone, pentasa and azathioprine) will keep the flare ups at bay.

 

[jck3mom]

Yes, Katie is on Asacol. 6mp, and VSL#3 although we have temporarily stopped the 6mp as she is in the middle of exams and is having some bad side effects (nausea, vomiting, fatigue, loss of appetite), so doc suggested we restart when the exams are done and see how she does then with it. I have this feeling she isn't going to be able to handle it but we shall see. Then I guess, we will investigate Remicade.

 

[katiesue1506]

Wow... I feel like I'm reading my story from my own mom's POV... My name is Katie as well, and I was diagnosed last year at the age of 18 the fall after my senior year in high school. I was attending Purdue University at the time of diagnosis, but had been suffering symptoms since about May(around my high school graduation time). Minus the appendicitis part of her story, I'm a dead ringer.... well and the straight A part (I was/am an A/B student).

I just wanted to let you know that a great thing for her would be this support forum... it helps to have other people to sound off to that understand what you are going through. It may sound weird, but it also helps to talk to people about it that you don't have to see everyday... in a way its a great way to talk to people about a personal problem without judgment.

Also... my mom, family, and friends all kept on asking me if I wanted to quit college to go home and get well... and for me, it just wasn't an option. But my mom felt I needed to take a semester off... I just would NOT budge on the issue and stayed through my freshman year and currently have finished my sophomore year and will be a junior next fall. The only reason I'm mentioning this is because she sounds like a high achiever, as I, myself, am... and I could see her not wanting to take anytime off from college.

All I can tell you is to honor her wishes, unless it becomes a GREAT health problem. I will tell you my first year was VERY rocky... but it was do-able. I couldn't eat the dining hall food, and the dorm life was NOT a great environment for someone with Crohn's disease... plus the stresses of homework, exams, meeting new people, and living on your own... but if she wants to give it a try, I would say to let her... unless she is on the verge of being hospitalized.

She will rise as a stronger person and will know who she is when she finds that she can be successful and accomplish her goals. It is so empowering to me, to know that despite having this illness... I am managing my life and I am living my life beyond the label of Crohn's Disease. Of course I can not speak for everyone, because it does depend on the severity of the disease. I am diagnosed with mild-moderate Crohn's Disease with an expected lifelong longevity. I'm sure that college and other things are not acceptable for Severe cases.

The last thing I wanted to let you guys know is I, and a bunch of other people who have experienced managing college and Crohn's Disease are available for any questions or helpful information to ease the transition for her.

I hope I can be a wealth of information for you guys!

Welcome to the forum!


-Katie

 

[crohnsmom]

Welcome to the forum. I can certainly relate to your post. Last year my 20year old son (19 at the time) was rushed to the hospital in Boston with suspected appendicitis. He attends MIT, and this necessitated an immediate emergency flight to Boston for us. Turned out to be Crohns and a nightmare year ensued. In and out of the hospital, on and off prednisone and other meds, all to keep him together since he refused to have surgery until after the semester was over. He finished with a 4.0 barely in time to have resection surgery last May. Like your daughter he has always been an award winning student and an amazing human being to be proud of. It is OK to be angry, it has taken me a year to not be furious over the cards dealt him and the constant wish that this should have happened to me not him!
On the bright side although life will never be the same, there is a new kind of normal that can be achieved. My son is now in remission and just about finished with his junior year. He leaves in a week for an academic fellowship in Berlin for the summer. His life has returned to normal, at least for now-I am the one that has to control my fears, worries and walk the fine line of giving advice without seeming too controlling.
During the darkest times last year the support I received from those here in this forum was invaluable. I am sure you will find the same confort and wealth of information.
My thoughts and prayers are with you, especially with Mother's day approaching.
Sincerely,
Ramona

 

[Jeff D.]

Welcome to the forum. I was diagnosed when I was 14 and am 19 next week. I had a flareup a week before I was supposed to go to my second semester of college, most likely due to stress. I would let your daughter know that she should learn the first day of school where the nurses office is. She should learn every bathroom on campus as well. I will be praying for your daughter. If she has any problems tell her drop by the forum and ask. A lot of us can offer suggestions to her. Also with Remicade make sure she has an insurance policy that will allow her to get it in college if she does not live in the same state or you will have to fork down the 2 to 3 grand for the bills. Good luck

 

[Guest]

hi jck3mom, and welcome. so sorry to hear that, and i can fully understand the emotion behind your post. we always want to take the pain for our loved ones - i know. she'll be ok, in a way its maybe lucky they did suspect acute appendicitis, as it led to the diagnosis and removal of something which would only have made her more poorly had it been left.

with your love, support and the advice of the physicians, i'm sure she'll regain her strength. and like others have already said, we're here for you.

 

[Kev]

Hey jck3mom.. Welcome to the forum. A fellow parent, I wouldn't care to trade places with you. The thought of one of my kids getting this runs chills down my spine. God Bless. hope we can be of help, and tell your daughter about us, OK?