young and freaking out!

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flutterbies
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 5/2/2009 12:19 PM (GMT -7)   
Im 17 years old and have had stomach problems for 3 years and was recently diagnosed with chrons. It's getting worse i feel like crap everyday. I'm freaking out i dont know how to deal with it. To be honest i don't want to deal with it. I shouldn't have to and its hard for me to accept that i have a problem and that im always going to be sick. I feel like ive been really emotional alot lately and ive just about had it. I hate feeling like this im always upset. I have crazy mood swings ill be really happy and fine one min and then the next im just like blah and for no reason. My stomach almost always hurts...I don't know what to do =(

WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 5/2/2009 12:49 PM (GMT -7)   
Lots of Hugs, flutterbies! I can imagine how freaky this new diagnosis of Crohn's is to you. My 19 yr old g'son was a healthy, happy, extremely "busy with life" teen last Dec, just before Xmas. Over night, he became very ill with what was 1st diagnosed as Ulcerative Colitis & later as Crohn's.

His stomach was sore for years, every time he ate anything, long before he was diagnosed. Just like you. His Fam. doc kept passing it off as "growing pains", "kid stuff"..... can you imagine! As if it was all in his head! I am ashamed to say that we, his family, were almost convinced of that! At Xmas he had a piece of Christmas cake & that did him in.... the rest is history.... Crohn's disease.

He was totally shocked that he, of all people, could get what he thought was an "old folks disease"! He'd never been sick a day in his life (other than the constant stomach aches, that is) ..... He thought he was invincible! We, his family, were also shocked! My grandson has still not totally accepted his disease even yet!

It's a crapy disease, in more ways than one, if you know what I mean! My heart goes out to you flutterbies! But, you hang in there, dear. I am told there are more good times than bad.

You say you are recently diagnosed with CD... have you been put on any medications to help keep it under control? I hope you have a loving, supportive family, dear.

I know you will get a lot of support here at his forum. I personally don't know what I would have done without the help of these "experienced" people. They are full of words of wisdom, far greater than anything you can read in books about your disease. Ask as many questions as you want... fire away... they will comfort you & support you, dear. Hope you are feeling better soon, flutterbies.

Hugs from Nana.
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) CD flare
Current Meds in Hospital: Humira injections started Apr 24/09;  Oxycodone 15mg
 
Is still in hospital 
 
Previous Meds:  Prednisone 40 mg.
Asacol 800 & Morphine (allergy to both).
Hospital Suppliments:  boost, low fiber diet.
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 5/2/2009 1:26 PM (GMT -7)   
Hi Welcome to Healing Well .What meds are you taking for your crohn's and where is it located? I know it is rough when first diagnosed and hopefully in time you will get some proper meds that will help you. You said you have mood swings are you on prednisone? Hang in there hope things get better soon.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 5/2/2009 3:36 PM (GMT -7)   

Hey there,

I was also diagnosed with Crohn's at a young age (15) and nothing sucks more than being told you have an incurable illness, just because you're going to have it for life doesn't mean you're going to be sick all your life. It may take a while for your doctors and you to figure out what meds are needed to get you better but try not to give up hope. It took my doctors a year to get me into remission after first being diagnosed during which time I was in a lot of pain and was very ill but they got me there eventually and I have had periods of remission lasting years during which time I was able to do absolutely everything all my friends and peers could do.There is every chance that could be you too! And there are so many more options available now compared to when I was diagnosed so you have that on your side too. Remember the majority of people who post on the internet are those that are ill, those that are in remission don't tend to post as much as they are off living their lives so try not to get too freaked out by some peoples situations here.

It is important that you come to terms with it though, devastating as it may be as emotional stress will only make symptoms worse, I've had counselling in the past when I was sick to help me deal with it and to reduce the stress on my mind and body which I really believe helped, even when I'm doing really good if I get upset over anything I get a stomach ache.

I hope you feel better soon and you found the best place to come to here, these people are fab and have helped me out so many times! Take care


 
 


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 5/2/2009 4:26 PM (GMT -7)   

Hi, Flutterbies

I have had Crohn's for several years now, and even those with severe disease have good times as well as bad times.  Getting proper treatment is key, and since you (finally) have a diagnosis, there are many effective treatments, and research is being conducted all the time.  If you can, it would be good to go to a gastroenterologist who specializes in Crohn's.  That person can answer questions about your particular case, so you can get individual attention.  We "crohnies" also know alot and can share our coping skills and feelings.  The most important thing I want to say is that you are not alone in this at all--there are medical experts and tons of friends ,here on the forum and in "live" support groups, that can walk with you.

Keep talking to us

Pix


CrohnsCrone
Regular Member


Date Joined Jun 2008
Total Posts : 25
   Posted 5/2/2009 5:02 PM (GMT -7)   
Well, I was diagnosed at the age of 13 when I had major surgery where they removed half of the large colon and part of the ileum.

I am now 65 and have lived with this disease for 52 years (probably longer because I had been feeling unwell for 2 or 3 years before I was diagnosed). I am testament to the fact that you CAN live with this disease. Despite the bumps along the road that you will inevitably experience, keep a positive outlook. Remember who you are and what you want to do. And go for it.

The best of luck to you.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/2/2009 9:51 PM (GMT -7)   
Mood swings are definitely normal and warranted in times like these...please, feel free to rant away all you need to here. And don't hesitate to ask questions. There will generally be many people to give you good, intelligent answers.

In any case, I know it's terrible to be diagnosed so young. I was diagnosed at 19 myself. It's really scary and there will be a lot of trial and error, but you have to know that you are capable of living with some sense of normality. Keep your chin up :)
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


flutterbies
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 5/3/2009 6:30 PM (GMT -7)   
thank you all so much for answering me and listening to me complain and freak out im sorry it took so long to answer.... I'm taking pentasa which i feel does absolutely nothing for me at all... and im 17 and a baby when it comes to tolerating pain so i go to a pediatric gastro. My mother has chrons so i can talk to her about it but then again i cant because we have opposite symptoms. My mothers had CD since she was 18, but again she doesnt have the same symptoms and has not sympathy what so ever when i dont feel good because she really has been through so much. I know that i havent experienced half the pain that she has but idk im 17 and as soon as im in pain i freak out like im dieing. I cant stand it anymore i say i dont feel good or my stomach hurts every day. I get in these slums where i feel so emotionally down and that no one understands how i feel and my mothers always ragging on me and telling me im being dramatic.... "i also have to determine the difference between not feeling well, and being sick". My mothers right i do, but im not ready to. When i dont feel good I DONT FEEL GOOD im still going to freak out i dont want to not feel good and i dont want to accept the fact that its always gonna be like that.... this situation sucks =(

....thank you guys so much for answering me


(NANA... my situation is exactly like your Grandson's =/ )

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 5/3/2009 6:59 PM (GMT -7)   
We were all young and healthy at one point. And then bam! we've got a uncurable disease and thought it was unfair and what did we do to deserve this. Th efirst think we had to do is accept what we have than learn as much as we can about it. Than find the right doctor with the right treatment to treat us. After all that we need to be positive and live each dasy to it's fullest and lokk foward into the future instead of looking back at the what if's.
You can do it, your not alone and your on the right track by finding this forum. There are wonderful people here that can help you get through your up's and downs.
Just relax ! Take a deep breath ! And say to yourself that your not going to let this DD beat you!!!!


P.S Sorry for rambling on!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 5/3/2009 7:08 PM (GMT -7)   
flutterbies--We are with you. Hang on b/c things will get better and lighter, it's just really hard to even think about that right now. Yup, it does suck but there will be better times. And you are so not a baby--I'm 37 and cry a lot myself these days. Pain is not fun and when you don't feel "right" you just don't.

There is a youth/teen section on the ccfa.org website. Maybe worth checking out and hooking up with some other teens. Also, I highly suggest going to a teen crohn's camp this summer. You deserve the best care and to surround yourself with positive people who know what you are going through.

Anyway, I too was diagnosed at 13. My GI was the only one who would take a pediatric case and I'm still with him 25 years later! I'm glad your mom understands b/c mine had no clue! We're great friends now but she was clueless and not good at research. My GI insisted that he always talk to me and not her. That was the best thing--I slowly gained more ownership for my care. He always explained test results to me and gave me options in my care. Websites, forums like this one, and some books are a great way to start (I would just sit in the library or a bookstore and pull books down reading anything I could about crohn's). Just knowing where your crohn's is located and what's going on is helpful. After several years, I walked in to my doc's office one day and said, "just how bad is my crohn's?"--after all that I really didn't know. HA! As I got older, my GI gave me copies of my blood work and pictures from my colonoscopies. Maybe you'd be interested in having those.

In the meantime, any thoughts of talking to a therapist? Someone one who deals with folks with chronic illness. I'm thinking of this myself right now as i'm a new ostomate.

Thinking of you and sending positive vibes!
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.


flutterbies
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 5/3/2009 7:17 PM (GMT -7)   
Thanks for the website ill check it out, and i didnt know there was such a thing as a CD camp? And as for the therapist suggestion i think its a really good idea but i dont want to make my parents pay for more... my medicines are really expensive and i take over the counter medicine to, and im spoiled =D im not sure that the therapist would even help thanks tho.... and ive been researching but i do need to go to a book store.


--- you guys are so nice =D
Age: 17
Diagnosed: 2008
Problems: since 2005
Medicines: Pentasa, and i was on Entocort but it made me crazy.


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 5/3/2009 7:23 PM (GMT -7)   
Has your doctor ever considered putting you on a stronger drug than Pentasa? Pentasa doesn't work for most people, and once you do find the right drug for you, you won't have to deal with the constant pain. It doesn't always have to be that way!! Once you start feeling better physically, I think that it will probably help you a lot emotionally, too. I know it has for me. I'm not in remission yet, but overall I'm feeling a lot better than I did a few months ago, and it has really almost renewed my love for life & energy! I hope you start feeling better soon!

flutterbies
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 5/3/2009 7:28 PM (GMT -7)   
I've complained to my doctor before and i even went in there one day freaking out and crying begging him to do something but it turned out it was just the entocort making me go nuts... it made me angry and aggressive and id cry and scream out of know where.... since then he said that the next pill he would give me could give me leukemia and so on and the last resort would be humaria which is really strong.... idk i dont understand at all? i know that i dont want to chance getting leukemia but i dont undstand how there cant be anything else he can give me =/ and i feel as if your right if i atleast had a day or two where i felt better then i would emotionally be better as well.
Age: 17
Diagnosed: 2008
Problems: since 2005
Medicines: Pentasa, and i was on Entocort but it made me crazy.


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 5/3/2009 7:32 PM (GMT -7)   
I know exactly what you mean, the side effects of these drugs can be really scary. The stronger drugs CAN cause leukemia, but at the same time, you've got to know what the odds of getting leukemia would be, and your doctor would be checking you regularly for signs of anything going wrong I would hope, so you would most likely be able to recover from anything bad. I think I am going to have to switch to a stronger drug as well (I think that I have Crohn's in my small intestines too, and Entocort only helps your ileum&large intestine), and to me, the chances of getting better outweigh the risks. Who wants to be in pain every day? It is no way to live. You should read up about some of the other treatments and see if there is anything that sounds good to you. There are tons of drug options available now, like Remicade, Humira, 6-MP and Imuran, and lots of others!

lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 5/3/2009 8:02 PM (GMT -7)   
Futterflies: I think that the first thing you should do is seek a support group in your area. Start by calling hospitals and asking if they have a Crohn's support group or maybe another topic that goes along w/your symptoms. They are out there. Then google support groups for Crohn's in your area. Also, visit the CCFA.org website ASAP. They to could help you look for a support group. You can also call them. Try hard to take one day @ a time and remember you have Crohn's, don't let the disease have you. It is hard, we are all there or have been there. I am here for you to give you all the support you need. Stay Strong!
LOVEPINK
I have had Crohn's since I was 21 years old and I am now 28!!
Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 5/3/2009 8:37 PM (GMT -7)   
Well since you are young and will have this forever, now is the time to learn to deal with doctors. Tell your parents you want a new one(if your spoiled it should be no problem:) There are a million out there and some just have no clue. Alot of people don't get better until they find the right match for their style. Good luck :)
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/3/2009 9:48 PM (GMT -7)   
I feel like if your mother has already been through it all like you say then she should be more sympathetic to the fact you've just been diagnosed with an incurable and painful illness. Experience shouldn't make you impervious to the plight of others...it should make you more sensitive to it.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 5/4/2009 1:14 AM (GMT -7)   
i have 2 friends with crohns adn each of our experinces with this disease has been diferent mines was painful and needed surgery whre as my other frined get sores in his mouth and thats bout it and my other friend basically has no syptoms at all,they find it hard to understand how i cld be so sick and they are okish,my parents ar really suportive when im sick (driving in to the hospital at odd times) other than that people generally suck at being sympathic to this disease and gernerally think ur making stuff up (most of my old co-workers didnt believe i was in hospital) and the whole idea of being crohnically ill just freaked me out for ages before this i had never been in hospital or nething like that i find taking things one at a time and try not to tke things too serisouly can help......stupid disease
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 5/4/2009 8:07 AM (GMT -7)   

Hi flutterbies,

Congratulations on hunting down this site!

Pentasa is indeed pretty weak. Entocort is pretty good, but only if you have Crohn's only in one area -- the terminal ileum. The following links take you to more information about the different traditional treatment options open to you:

http://www.ccfa.org/info/treatment/medications

http://www.hopkins-gi.org/GDL_Disease.aspx?SS=&CurrentUDV=31&GDL_Cat_id=AF793A59-B736-42CB-9E1F-E79D2B9FC358&GDL_Disease_id=291F2209-F8A9-4011-8094-11EC9BF3100E

If you want to try the nontraditional route, you could try the SCD diet. Info about it can be found on www.breakingtheviciouscycle.info and in the book, "Breaking the Vicious Cycle." Also, you could look into LDN. 


B&K'smom
Regular Member


Date Joined May 2009
Total Posts : 31
   Posted 5/4/2009 9:33 AM (GMT -7)   
I was 18 when I got Dx with Crohn's. I was going through nursing school and had a child to take care of. It can be very emotional at times, but you just have to strive through it. And i completely understand about people not believing you or having no sympathy for your pain. Being young, I think it makes it harder too. But the most important thing for you to do is find a Dr. that you are comfortable with and a med that works. Of course there will be trial and error. And sometimes the risk of being on a med, out ways the risk of having a flare up.(which can led to multiple problems) And once you find a med that works for you, it is very very important to take it every day!! Good luck.

annyb
Regular Member


Date Joined Feb 2009
Total Posts : 62
   Posted 5/4/2009 3:42 PM (GMT -7)   
I am so sorry to hear that you are suffering. I feel for you. I was diagnosed when I was 10. It sucked. It was bad enough feeling like crap all the time but taking medicine that drove me emotional and dealing with the "teen years" just made it worse. Hang in there. You CAN make it through the rough times and you WILL have good times in your future.

My advice would be that you may consider seeing someone (a psychiatrist) about the mood swings. CD meds can really mess up your chemistry and there are other meds that can help. Think of it like a glass of water. If your emotions are the water filling the glass, you can only take so much until you overflow the glass. The meds can help the glass fill up slower. There is no shame in seeking help. I'm sure that most of us here have had the mood swings.

Over time, you will learn what you body can tolerate and you will learn the signs of issues. I know it is difficult to face a long road of recovery but you have friends here. Hang in there.
Crohn's Disease - 29 years
Diagnosed at age 10 in 1979
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
 
SCUBA diver, Master's degree student, college graduate, Pet therapist
 


flutterbies
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 5/4/2009 5:04 PM (GMT -7)   
Thank you all so much for being so supportive and helping me to understand. What would you suggest for a diet? Remember that i am 17 and love chocolate =D but i do have eat better ive found that it actually does help when i stick to it... i really don't know what to exactly eat... I have like opposite symptoms of most people with crohns i can't go to the bathroom. I eat alot of fiber and yogurt. It hurts i get alot of internal gasses, flares, headaches, and neasuha. I also understand that with CD weight fluctuates in the beggining i lost 11 pounds and i look sickly im 5"0 and i weight 114 pounds i gained the 11 pounds back and i feel like i gained more i havent been on the scale but im pretty sure im 117 now =(

...?
Age: 17
Diagnosed: 2008
Problems: since 2005
Medicines: Pentasa, and i was on Entocort but it made me crazy.


Wonderwen
Regular Member


Date Joined Mar 2009
Total Posts : 52
   Posted 5/4/2009 5:21 PM (GMT -7)   
I was about your age when I was diagnosed and I am now almost 35. Like you and others, I have been through alot. I went though 5 doctors before finding the right one for me. I also understand you on the pain. I once had a low tolerance for pain. But after living with Crohn's for this long, I am now tough as nails!
 
The one thing that has helped me the most is my attitude. My doctor told me that your mind can effect how you feel. Even when I am sick, I try to stay positive and my offical life motto is:
 
I Choose to be Happy!
 
Sometimes I have to repeat it several times a day.
I refuse to let this disease take me down!
 
Hang in there! Take it one day at a time.

flutterbies
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 5/4/2009 5:28 PM (GMT -7)   
Thank you all so much for being so supportive and helping me to understand. What would you suggest for a diet? Remember that i am 17 and love chocolate =D but i do have eat better ive found that it actually does help when i stick to it... i really don't know what to exactly eat... I have like opposite symptoms of most people with crohns i can't go to the bathroom. I eat alot of fiber and yogurt. It hurts i get alot of internal gasses, flares, headaches, and neasuha. I also understand that with CD weight fluctuates in the beggining i lost 11 pounds and i look sickly im 5"0 and i weight 114 pounds i gained the 11 pounds back and i feel like i gained more i havent been on the scale but im pretty sure im 117 now =(

...?
Age: 17
Diagnosed: 2008
Problems: since 2005
Medicines: Pentasa, and i was on Entocort but it made me crazy.


Wonderwen
Regular Member


Date Joined Mar 2009
Total Posts : 52
   Posted 5/5/2009 2:52 PM (GMT -7)   
If you can't go to the bathroom, eat less fiber. I take Miralax everyday (over the conter) - you should try it out, it has made a big difference for me. If I don't, the pipes get clogged and then the pain starts. I have had to stop taking fiber pills completely.
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