Newly Dx'd, only 18, future?

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Regular Member

Date Joined Jun 2008
Total Posts : 49
   Posted 6/23/2008 6:25 PM (GMT -7)   
So I found out last tuesday after 11 months of well... sh!t to say the least. Im currently trying to adjust my body to a 5-ASA drug, my dr says he is fairly confident it should do the trick for me. I realize this is a chronic life long illness....but what should I be expecting for my future? Ive heard of people who go sometimes a few years without flare ups, then I hear of others who are taking like 50 drugs everyday and have a colostomy bag, and have had multiple surgeries and so on...

Im 18 years old, I met an amazing girl and I think we could have been something but I had to leave her because I was sick all the time (before I found out) and now she is with someone else... Right now things are looking pretty bleek. What should I be expecting for the future? I realize people live with the disease, but what kind of quality of life should I be expecting? And I really dont want to have a colostomy bag (no offence), but I had an eating disorder for almost 10 years and was hospitalized for it, im pretty sensitive about the way I look....


Veteran Member

Date Joined Apr 2006
Total Posts : 686
   Posted 6/23/2008 6:34 PM (GMT -7)   
Welcome and I'm sorry you need to be here.  This disease is different for everyone.  I'm one of the crohnies who had always been pretty functional no matter how bad my flares have been.  I don't have the constant D and have never had bleeding.  That said when I was first diagnosed I was put on pentasa and entecort and they made me feel worse.  Hopefully the meds will help you and you can take your life back.


Remicade and 6MP

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 6/23/2008 6:39 PM (GMT -7)   
Hi and Welcome!! Like petittarte said, we all have it so differently. I have a very mild case of it where I can pretty much be drug free except
when I have a flare. I came down with it 8 years ago and have pretty much been drug free except for the first year. And then last month
I flared and have been pretty sick trying to get it under control again. I've had issues a long the way but not major ones. It's not fun being
sick, but all you can really do is deal with it and keep moving. When I'm sick obviously its harder to do things and go out, but when I feel
good it makes up for the bad.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 30mg tapering
                           Methotrexate injection 12wks
                           Folic Acid
No Surgeries

Rider Fan
Veteran Member

Date Joined May 2008
Total Posts : 1445
   Posted 6/23/2008 6:50 PM (GMT -7)   
Many people who post here are pretty sick (at least right now), so you can't predict outcomes based on what you read here. Myself for example, I've had CD for 8 years but haven't spent much time posting until now because I'm flaring. try not to worry about the future and accept the present.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 20mg prednisone.  Udo's Choice Probiotics (30 billion).

Crohn's 4 ever
Regular Member

Date Joined May 2008
Total Posts : 207
   Posted 6/23/2008 6:52 PM (GMT -7)   
Hi there, and welcome to the forum!  I too am from Canada and I had symptoms at your age, didnt get diagnosed until 32 but I do remember being young and impressionable.  I used to worry about my appearance at times too, I think we all did, but dont let this disease consume you.  You
have alot of adjusting to do, and your supporters and friends will understand.  You may think your future is bleek, but like the rest of us we learned to deal with it and take it one day at a time.  If your drug isnt working for you let your GI know, depends on how "active" your crohns are and need to be adjusted.  All this is very overwhelming, I am sure like the rest,, we all have different lives and learned to adjust.  You will too.  Give  yourself some time, research all you can and watch your diet.  Stay on a low fiber diet.  Dont worry about your appearance, it is what is inside that counts.  Good luck, sorry you are going through this but we are here to help.  chin up, let us know how you are making out and ask questions, no matter how "dumb" you may think they are!
Tough times don't last long, tough people do!

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 6/23/2008 7:09 PM (GMT -7)   
It's hard not to worry about the future... I'm around your age... 19 years old, going on 20. I wonder a lot about what will be in my future, too. But I try to think of things like surgery as something that may (or may not) happen in the far-off future...

Right now, I have so many worries at the present time regarding joint pain that I've been having (may or may not be associated with my disease and/or may or may not be associated with some medicine I'm taking) that I'm more worried about what's going to happen in the near future. Doctor appointments and such.

You may want to think about looking into finding a Crohn's support group... and also a therapist to help you cope with having a chronic illness...

Especially considering you already have sensitivities regarding your appearance... You may never end up with a colostomy bag, so don't get overly concerned about that. But... chances are, you probably will end up taking prednisone at some point...

And that stuff will cause some changes in your appearance that you're not going to like...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Regular Member

Date Joined Jun 2008
Total Posts : 49
   Posted 6/23/2008 7:52 PM (GMT -7)   
Hmm thanks for the insight guys, and looking at the present is pretty bleek too sadly... could anyone give me a ballpark as to the odds of a colostomy bag? My best friend zoe and me are already cracking stoma (sp?) jokes for if I ever need one, love her for being so caring. I have a feeling steroids would be the end of me, and I really want to hold off them as long as possible :( In my position in Canada, I think a therapist would be a really good idea, is that free in canada? If not is there some kind of way I could swing it to be free? How would I go about obtaining a therapist, just ask my doc or?

So glad I found this forum, I have a 1000 questions and you guys seem to have the answers thanks again, even if my view seems dismal.

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 6/23/2008 8:05 PM (GMT -7)   
I'm sure one of the Crohnies from Canada can help you... And not sure what the odds are about having a colostomy bag...

I haven't had Crohn's for long... I was diagnosed at 18, too. But... I don't have a bag yet. I haven't even had surgery yet.
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Lady G
Regular Member

Date Joined Sep 2006
Total Posts : 321
   Posted 6/23/2008 8:56 PM (GMT -7)   
where I live in canada, and its something you might want to look into, is at one of the hospitals in my area every month people with crohns can go and meet and tell stories and basically have a support group, I've never went, but I know it exists, and it could be something for you to look into, its free of course. Then you might not have to worry about therapists and costs-which you can ask your family doc about I bet, and they might also know if any of those support groups are in your area.

As for future, its not so bad, I was diagnosed at 18 as well (or 17 just turning 18)..I worried about all the same stuff, since my dad is a horrendous case of the disease with the liquid food TPN, colostomy, 'short gut' and everything you can imagine (not sure how many meds he is on, but its not TOO many). But my case is pretty mild, I've only had one MAJOR flare and once I found the cause I could fix that, never had a surgery...don't not take your meds if your afraid of steriods..thats the worst thing you can do--I did that thinking that because I was feeling fine I would be okay, ended me up in the hospital and on even stronger steriods, and most of the meds have so little steriod in them that its not really as bad as it seems (and I only take 3 pills a day, not a huge amount, very handleable). If you take your meds proper, take your doc appointments and proper checkups and maintenance you can lead quite a normal life, watch what you eat too. I've been at my current job for 6 years, got married, my husband and family are very supportive and most people look at me and think I am healthy as a horse (if only I was!). So its not as bad as it can seem. Even my dad who is a horrible case still obviously has his marriage, had me, does lots of volunteer work in the community, is on his feet lots and lives quite normal.

and welcome to this forum of course, all those 1000 questions you say you have feel free to ask!!
27 year old, married. Diagnosed with Crohns at 17, suspected of having for at least a year or so before that.  Alot of Crohns in my family history.  No surgeries yet. Imuran treatment with Prednisone tapering at moment.  Possible Fistula.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 6/24/2008 6:56 AM (GMT -7)   
I have lived with this disease for almost 33 years. I will tell you at one time I enjoyed a nearly 20 year remission. Very few of us Crohnies has a colostomy. It is only those who have severe cases of Crohns that usually wind up with them. Most don't though.

I really think therapy would be a great help for you. You are just learning to live with a chronic and uncurable disease and in the beginning this is something a little harder to live with.

I have enjoyed a relatively good life. I have married, had 3 kids, have 5 grandbabies and have worked at the same job for over 18 years. Crohns doesn't mean the end of your life. You have to live your life around Crohns. It won't always be a daily thought in your head.
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.

Crohn's 4 ever
Regular Member

Date Joined May 2008
Total Posts : 207
   Posted 6/24/2008 8:38 AM (GMT -7)   
I am from Canada, had 2 surgeries so far could be heading for a 3rd.  I have had crohns 30 years, started at 17 dx at 32  years, I worried about a colostomy to but it is very rare, the odds are low, but to keep your intestines healthy you need to have property nutrition (hard when your young, McDonalds galore) if you have surgery when recommended by your doctor it is best not to let it progress and catch it early and get back onto recovery meds.  Worrying is going to make it worse, stress is a trigger factor, I had 2ft removed and still have some absorbable intestine left.  Tell your GI of your concerns, I am sure he knows the odds since he sees that everyday.  Dont worry, be happy!
Tough times don't last long, tough people do!

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 6/24/2008 1:30 PM (GMT -7)   
Hi Canadian here as well . My crohn's was DX as severe. I had resection in Jan. and feel much better. I have learned alot here too . I follow a low residue diet. It helps and I have had no Cramps or pain other then body pain since Jan. Hope your meds help and welcome to HW. lol gail

Regular Member

Date Joined Jun 2008
Total Posts : 49
   Posted 6/24/2008 6:01 PM (GMT -7)   
Rare sounds good to me, especially if thats usually for severe cases, the doc said mine was moderate, and that it was a strange case in that it entirely spared my rectum? I think thats what he said but I was still out to lunch on benzo's when we spoke. Someone mentioned something about it being hard to stay away from fast foods, but the eating disorder pretty much took care of any need to go there :) thank god

So im still not in full understanding of how this works? When or why would I need to get surgery? Will it inevitably spread or only if I dont eat right and take my meds? Will staying on a good diet and taking my drugs slow the spread any?

On the note of a diet.. residue free diet? That is quite a new term, being an EDP (eating disorder patient) for so long I've heard of every flip fad diet in the book and spent countless hours with a registered dietician. Im working on dreadlocks right now and I wash my hair with residue free soap, but I dont imagine its quite the same thing... Is the general guidelines of the diet the same for everyone with just some foods that are triggers or? Can anyone point me in the direction of the crohnie diet?

Thanks again :)

Veteran Member

Date Joined Feb 2007
Total Posts : 1010
   Posted 6/24/2008 8:20 PM (GMT -7)   
Hi Abseeley: I'm also from Canada. Your diet will depend upon where the crohn's is located, what kind of crohn's you have and whether it is active. When you are in remission, you may be able to eat a fairly unrestricted diet, unless you have a fibroid stricture (narrowing of the intestine due to scar tissue) When your intestines are inflamed or when you have a stricture, you will be more comfortable if you stick to a low residue diet. The diet is low in fibre and bulk so that it is almost completely digested with little residue remaining by the time it enters the large bowel. Think of white and pale and you get the idea of what you are looking at for food -- white bread, potatoes, meat, eggs, cooked veggies, stewed fruits. No seeds, nuts, whole grains, strings, skins etc. Crohn's patients usually do best without fried foods, but some can tolerate.

The thinking today is to eat as close to a normal diet as you can tolerate -- unless you have specific dietary allergies. Wheat and milk allergies are common in crohn's patients. So there are going to be times when you will want to severely restrict your diet and other times when it should be much closer to normal.

As far as colostomy bags -- today it is relatively rare for crohn's patients to end up with permanent ileostomies or colostomies. Crohn's doesn't go away by adding a colostomy bag. It usually will come back at the site of the stoma, so that kind of surgery is avoided in all but the most extreme cases. However, sometimes reversible ileostomies are performed to allow the bowel time to heal after a resection. Usually these are reversed after six months or so.

The important thing is to keep yourself as healthy as possible and to adequately medicate the disease to reduce inflammation and scarring.

30+ years living with Crohn's.

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 6/24/2008 8:33 PM (GMT -7)   
Another aspect of the future, especially because you are young... They are constantly making medical advancements. There are many treatments now that were not available 10 years ago. So, keep strong, remember that you are far more than your guts, and keep good thoughts! I hang on to the future because I am excited for the potential opportunities!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08, started Xifanan 5/24/08 
--single mom to 10-yr-old girl

Regular Member

Date Joined Feb 2008
Total Posts : 298
   Posted 6/25/2008 9:08 PM (GMT -7)   

Welcome! Listen, I got diagnosed when I was 24 and it wasn't easy. I went to a great school, got a great job, was a competitive athlete, was married to the man of my dreams, and thought my life was on track and working out perfectly. After all, everything was happening according to my "plan." about a year into my new job I got diagnosed with CD and I started struggling a bit and now (two years later), I have been medically retired from my job due to the severity of my Crohn's, am struggling to remain a competitive athlete and have had to accept the fact that there are some seasons I will not be able to race, and my marriage suffered a little at first right after I was dx'd b/c my hubby didn't quite understand my illness. We have been through counseling and he has stuck by me every step of the way. This has shown me that if you are indeed with the right person you will be OK.

You're young. It is going to be tough but as long as you have the confidence and determination to succeed you will be just fine! When you meet "Miss Right" you won't feel like you have to hide your illness and you will feel comfy with her. She will love you for who YOU ARE and will just want to nurture and take care of you and take all your pain away. =)

This disease has taught me lots of patience, and that is one think you must have. It sucks, I know, b/c when you are young you want things to happen immediately. There is no quick fix for this disease, but attitude is everything. Keep your head up and know that as long as you are positive, you take care of yourself (don't drink alcohol, smoke, and make sure you eat properly), you will be okay. You've got the rest of your life ahead of you, just take care of yourself and you'll be okay.

And remember, you've got TONS of support here on HW. Keep your head up!

Regular Member

Date Joined Oct 2006
Total Posts : 451
   Posted 6/25/2008 9:49 PM (GMT -7)   

It is a tough row to hoe but I always remind myself that it could be worse. I write here about my daughter. She is twenty now and she was diagnosed when she was eighteen. As someone else already said, some cases are severe and some cases are not so severe. I keep hoping that Rock will experience a remission. She did pretty well on Remicade for a few months -- like a miracle. Then, it stopped working. She has been on just about every medication there is for Crohn's and she still has a very active, severe disease. She is currently on Humira and Imuran but the Humira no longer is having a good effect so she will probably be taken off of that soon -- probably increase the Imuran. Just started a new drug that is primarily for UC -- called Lilalda or something like that. Who knows? It might help.

She has had multiple fissures -- three surgeries for those so far. She will have more surgery next month but something more extensive -- an attempt to drain the fistulas further up. Her surgeon said that he had a group meeting with some other doctors to try to figure out what to do about the fistulas.  I said, "How does it feel to have a famous butt?" 

I do wish that she had a mild case of Crohn's. But there are many people with worse cases. I am a nurse and I see people all the time with intestinal ailments. I recently saw a young woman who has had her enitire colon removed but has never been diagnosed with anything particular. Another young woman who has had large sections of her bowel removed due to blockages -- not diagnosed with anything particular. I kind of don't get that but, then, I think -- "Well, does it matter if it does not have a name?"

There is just a lot of intestinal misery out there -- named or nameless.

My daughter works every day that she is capable and that is most days. She has a boyfriend. She wants to go to college if she can get the crud under some control. Her outlook is pretty positive. I have been talking to her lately about trying an alternative route. The mainstream medications have not worked for her. I know a doctor very well and whom I trust who could guide her in that. I mean, it is obvious that she is going to lose some bowel pretty soon if something does not give.

Sorry for rambling. Crohn's is a tough disease and I am sorry to hear you got stuck with it at such a young age -- like my daughter. But, as you can tell, many people live with it for a long, long time.  Many people do go through years of remission and that is a blessing. I hope that it goes that way for you. Rock is still hoping for that and we believe that it will come.







Regular Member

Date Joined Oct 2006
Total Posts : 451
   Posted 6/25/2008 9:57 PM (GMT -7)   
Above, I wrote, "multiple fissures." I meant to say, "fistulas."

New Member

Date Joined Feb 2008
Total Posts : 7
   Posted 6/25/2008 11:10 PM (GMT -7)   
i was diagnosed about a 6 months ago with mild to moderate chrons, w/o medication i would have a flare up once a week that could last 3 days or so and my stomach felt so bad... i never bled though. After medication it feels great most of the time, it felt even better on the prednisone but now im only taking 100mg of 6mp and it works decent. Still some mild stomach pain in a localized area but no bad bad flare ups. I went through a lot of stress the year and the year before i was diagnosed and i really feel that is what triggered it because before i started this job that caused me all the stress i had no symptoms.
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