Just diagnosed..... need advice

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Regular Member

Date Joined Oct 2009
Total Posts : 68
   Posted 10/21/2009 3:06 PM (GMT -7)   
I feel like I don't want to live anymore... I was preparing to do Marine OCS school in the summer, and now that idea is cooked because I am no longer medically cleared to be an officer.

Not only that but my symptoms suck, and after reading this forum it seems like they are only going to get worse.... My doctor made it seem like Crohn's isn't a big deal, but after reading about all these horror stories I don't know what to think.

Is feelings of depression normal after the diagnosis?? Do you ever reach a point where you stop fearing the toilet???

Everything happened so fast with me....Four months ago I was as healthy as a horse... Now I feel like I am wasting away.... The best part of my day is going to bed, the worst part is waking up... I don't know how much more I can take....... Today I was in the park and I saw this autistic kid in a wheelchair and I was actually contemplating whether or not his situation was worse than mine....

I feel like someone robbed me of my life.....

Are these feelings normal???? Or am I depressed???

Regular Member

Date Joined Oct 2009
Total Posts : 253
   Posted 10/21/2009 3:15 PM (GMT -7)   
Please hang in there! You may feel depressed because it is such a big adjustment to make. The experiences of those on this forum are not necessarily ones that you are doomed to repeat, and your disease may go into remission for long periods of time. It's really hard but things will get better... And you have a whole group of people right here for support. Feel better!
It also may help to talk to a counsellor or family member about how you're feeling, sometimes all I need to make myself feel better is just to be able to vent to someone and get some perspective.
19 y/o female, diagnosed crohns december 2008
currently taking 500 mg pentasa 4x daily

Veteran Member

Date Joined Apr 2006
Total Posts : 1885
   Posted 10/21/2009 3:31 PM (GMT -7)   
Welcome to HW! This is a great community - a source of info and support - that has gotten me through many dark days.
Your reactions are understandable, but there is every reason to hope you will find the right mix of medication and/or diet that will enable you to live a much better quality of life.
Which medication are you on, now?
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. On Entocort since April 06. Never had D. Now using LDN to taper off Entocort. SCD multivitamin, homemade yogurt, 2000IU vitamin D3, 900+ mg calcium, 25 mg iron, monthly B12 shots, Krill capsules, occasional zinc. SCD diet modified to include potatoes and rice. 

Veteran Member

Date Joined Feb 2009
Total Posts : 529
   Posted 10/21/2009 3:47 PM (GMT -7)   
I think it's normal to be scared, I know the feeling, it seemed like overnight I went from being healthy to the sickest in my life. I first got sick nearly 2 years ago (I was 19 at the time), and got diagnosed earlier this year. I wouldn't worry too much over what you read here, because everyone goes through different things and deal with things differently. A lot of the people here have VERY severe cases. If it's any reassurance, I wondered before if I'd ever feel normal again, and I'm back to leading a perfectly normal life like I did before I got diagnosed. I have some pain still, but nothing compared to before (I'm also not in remission yet). If anything, I'm almost thankful in some ways that I have this disease - it has changed me as a person for the better, and made me a lot stronger. I hope that you'll feel this way about it eventually, too!

Things WILL get better - a lot of people with Crohn's go YEARS between flare ups (there are people who have 1 flare every 10-20 years, probably more than that too!). I think the initial flare(s) are the worst - once you know what's wrong and they can treat you, it usually gets better, even if it doesn't seem like it will now. Most people will deal with some sort of health problem during their lifetime, and yes, Crohn's can be difficult to deal with at times, but it's something that can be controlled very well for the majority of people.

Trust me, things will get better. I actually was relieved when I got diagnosed, so I guess I've been lucky - everyone seemed to think I had cancer because of how sick I was, so I was grateful that it was something treatable and that isn't terminal. Before I got diagnosed, however, I remember thinking that it would be easier to just die than live the rest of my life this way and wondering if I'd ever feel normal again. There were days where I wondered if I had just forgotten what it felt like to feel normal and I was just going crazy. I was only able to stay awake for about 3-4 hours a day (max), dropped below 85 lbs, couldn't eat or even drink water, and here I am, feeling almost completely normal and enjoying life more than ever.

I hope you feel better soon, it WILL come though :) Crohn's is a fairly common disease, we just don't hear too much about it, so really, what you see here is a lot of the bad. Most people won't come and post on this forum if they're feeling great and symptom-free, most of the people here are going through really tough times or have very severe cases. This forum is great for getting information and having people to talk to though :) It really helps to not feel alone sometimes!

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 10/21/2009 4:17 PM (GMT -7)   
Aw UC21 (((HUGS)))

What you're feeling is completely normal...don't let what you read on support boards freak you out though, everyone is different with their CD (no 2 identical that's for sure) and you'll really drive yourself crazy thinking about the "what if's" like what if you're gonna get worse and what if you don't make it to a toilet in time. I've been living with this disease for the last 18yrs without full remission (I have some perianal issues which is why no full remission), my GI also strongly suspects that I developed IBS as well. But all you can do is take one day at a time, yes this disease can drastically change your life but humans can and do adapt for the most part. Flares can vary from one another, some may be more severe than other flares, some much milder, all you can do is take it as it comes and react accordingly.

Do research, many of us use supplements (notice my sig below) and many do very well on RX, naturals only and the combination of the 2, diet changes, exercise, ect, find what works for you, try what others have success with and see if it fits your situation as well.

Hang in there and know that you are not alone with what you're feeling and thinking, this disease is like a roller-coaster of emotions too so don't be so hard on yourself, enjoy your god days and take it easy on bad ones.

bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Regular Member

Date Joined Dec 2007
Total Posts : 414
   Posted 10/21/2009 4:33 PM (GMT -7)   
Don't take the experiences of others on here as typical, the people doing great etc tend not to post much or at all as they're off living their lives and not posting on forums! So don't freak if you only hear horror stories looking on the net, its a bit biased!
Look at my post count and membership date - I joined after my 3rd flare I think it was and had had 5 years in remission from diagnosis to join up date! I'm in remission now but just like to come here and see how people are or if I can help or advise in anyway and its a great community, I've been helped so much by this when I've had questions or worries.
The first year is usually the toughest as thats when your trying to find the right meds etc and get used to having the illness ,what you can and can't do, eat, that sort of thing.
You CAN get better, it might take a little time but its possible that you can get into remission and maybe be among the lucky people who only have one or two flares in their lifetime. there was a post recently on remission and theres people who have had symptom-free periods lasting 20 years! You just don't hear about these people as much because, as I said earlier, they're off living happily, healthily and 'normally'.
Its not the end, I remember when I was first diagnosed thinking I'd always need to be near a toilet and would never be like my friends. Now I'm at uni, I made the cheerleading team first year (and to think just a couple of years before that I was told my arthritis would put me in a wheelchair) and am fitter and stronger than most people I know, I go out clubbing and drinking and so many things I once thought I'd never do, people have no idea I have Crohn's unless I tell them and even then they're like "eh? you don't seem like you have anything wrong with you" well thats true - there is nothing wrong with me but occasionally I get sick, when I do yes it sucks but I have great doctors and with the right treatment within weeks I'm back to being myself again.
Just keep fighting and (I know its hard) keep positive, it can be tough but you've found the best place here to help you through.

Regular Member

Date Joined Jun 2005
Total Posts : 58
   Posted 10/21/2009 4:39 PM (GMT -7)   
Hang in there UC21, and realize that the people who are in remission and stay there don't even remember they have the disease. And there a lots and lots of CD people out there like that.

When I had my first flare, I wondered how I could live through it. I thought, this has to stop. But for the longest time, it didn't. I just adjusted to going 15 times a day, to feeling yucky all the time, to always looking for the nearest toilet. And you know what? Just as I made up my mind that this was my life now, the meds started working and I got better fast. :)

I still have flare ups (like now) but when I do, they are much milder and I know what to expect. This is an awful disease when it's in flare, but you CAN get better...and you WILL. Believe me, you will. :)

hang in there and God bless.

Regular Member

Date Joined Feb 2005
Total Posts : 455
   Posted 10/21/2009 5:46 PM (GMT -7)   
Yeah most people that post here are having issues at the time. Most will go in remission and disappear for a few years then come back. So you get the worst of it on here. Don't worry man, it is nothing you can't handle.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.

Veteran Member

Date Joined Sep 2005
Total Posts : 517
   Posted 10/21/2009 6:32 PM (GMT -7)   
Im not qualified to say whats normal feeling. But I would give my advice to, stay in school or seek similar experience, regardless of ones medical situation.
.. if you find yourself with extreme bowel urgency. If it gets to the point where you are trying to control your urgency by not passing gas because you have D, this will cause more inflammation, so try to keep a diet where you have a formed stool and still pass gas. Let your doctor know all whats going on. This forum can be a good place to learn and continue posting.

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 10/21/2009 7:51 PM (GMT -7)   
A few things:

The people on this forum tend to come here because we have severe cases, but many other people are not here precisely because they are able to live normal lives. The point is, don't take our examples as the only ones. There is hope for a normal life, but you will have to be a lot more conscious about what you eat.

Second, look into the SCD diet or Maker's Diet. People have had great success with these. They don't work for everyone, and they can be strict, BUT there are some who have been able to live even without medicine (I do not advocate this in any way. Stay on your medication!) because of their ability to adhere to these diets. It seems to help people in general to avoid gluten, sugar (sweeten with honey or stevia instead), and/or high lactose dairy (yogurt and aged cheeses seem to be fine). HOWEVER, everyone has a different diet that works for them. There is no set Crohn's diet so try and start simple e.g. chicken, broth, diluted juice, etc., and work your way up. Keeping a food diary helps to see what bothers you. Also, for now it would be best to avoid raw fruits and vegetables.

Probiotics: These help regulate your gut flora and ease symptoms. Popular ones recommended by GI's themselves are Align, VSL#3, and Culturelle. They can make a significant difference in how you're feeling. Many studies suggest that part of the reason why we feel so terrible is an imbalance in intestinal bacteria, and that probiotics can help fix this.

Light walking helps when you are up for it, don't overdo it physically, steroids will help you, but be prepared for some silly side effects like roid rage, moonface, and insatiable appetite/weight gain.

And something to remember would be that we all feel really depressed at times. I have had thoughts of ending my life, but we have to keep in mind that these symptoms, no matter how bad they get (I have almost died twice in the past year and a half) do get better. Life is not over so do not give up! It's really difficult at first, but just hang in there and feel free to ask questions/vent here as much as you like.

This place has been a life saver for me. If you have a question, ANY kind, someone will be able to answer it.
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
Learning how to live again.
"He who has a why to live for can bear with almost any how."

Regular Member

Date Joined Mar 2009
Total Posts : 452
   Posted 10/22/2009 5:29 AM (GMT -7)   

I remember when I first got sick with CD.  I missed my last two years of High School, get home schooled for my last year.  When I went to college I wanted a normal life again and I vowed I would get it.  I kept believing that things would get better, and they did.  I went into remission and stayed there for probably close to 10 years.  From what I have read here on the boards, I am amazed that I was able to go that long without any meds.

Things of course change and I no longer have those carefree days.  But they do exist.  Things may seem bad now, but they will get better.  Find yourself a good GI.  Do some research.  I have had CD for about 20 years now and I am just finding a good doctor that can help me.  Part of my problem is that I took my remission for granted and kind of ignored the CD.  I have since learned to coexist with my CD.  I have my bad days, but I never let it get to me.  If I find I can't get of the toilet, I just dose up on Immodium.  If I am having pain, I just take it easy that day.

Don't take everything you read as a gaurentee that it will happen to you.  You are your own person.  You can get better and go the rest of your life with no complications.  Also, if it helps, find a good therapist and talk things out with them.  You would be amazed how much that can help.

Take care, get well and enjoy life.  Also, let us know how things go.  Many people on here are helpful.  Also, check out www.ccfa.org  They are very helpful with coping and understanding of the disease.

Crohn's Disease since '88

Regular Member

Date Joined Feb 2005
Total Posts : 455
   Posted 10/22/2009 6:03 AM (GMT -7)   
I am a big fan of SCD but I never recommend SCD to newly diagnosed people. Most people cannot follow it perfectly either my accident or will power, it is very difficult to perfect. To use SCD you have to know your body and your level of disease. New people are better off staying with meds and not playing with foods.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 10/22/2009 6:20 AM (GMT -7)   
First off, BIG BREATH... As mentioned above many of the folks on this forum are extreme cases. I am in remission, but I stay around just because I love the people so much. I have lived with this disease for over 34 years and I can honestly say I have had more good days than bad. When first diagnosed it is usually the hardest time for most. It takes a while to get diagnosed and then even longer to find the right medications etc. I would highly recommend that you always stay on some type of maintainence meds. It is much harder to get a flare under control if you are taking your medications. I learned that the hard way, and wound up with an emergency resection. Also, I highly recommend that you keep a food diary to keep track of which foods upset you and those that are ok. Diet is very individual for each us. What works well for one, doesn't always work well for all. I live on a low residue diet all the time and that works well for me. You can google low residue diet and get some diet ideas. Stay with us, we all understand what you are feeling, and we do care.

Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 10/22/2009 10:33 AM (GMT -7)   
I have to agree with most people who have posted. When you are first diagnosed it is always the worst. I have lived with this disease my entire life. My mother had CD and then I was diagnosed when I was 23. I am almost 45 now. I can say that there are a lot more good years than bad. Once you find out what foods are ok and what medications work for you, things will calm down. You will get your life back. You will always have to be careful about what you eat and it will be a slightly different life, but it will still be a really good life. Trust those of us who have been there, done that.

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 10/22/2009 10:59 AM (GMT -7)   
Yes, these feelings are normal. It is also quite normal to be depressed after a dx. Especially when it effects your career.
Ok so you said your plan was to go to Marine OCS, well I known a few Marines in my time and they always have an alternative plan in place for that oh crap scenerio. And quitting isn't it. So what were you going to do if you were severely injured in combat and could no longer be a Marine? You still have a brain, and a body while not perfect, is not completely disfunctional, and it sounds like you are getting a degree. So what is your degree in? So what is your alternative plan?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 10/22/2009 11:03 AM (GMT -7)   
Please understand I am not saying this to be mean, I am saying it because I want you to realize you still have some real strengths. We have been there buddy and we understand. It is absolutely a normal stage of grief and I want you to get some help. Please get some help.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Veteran Member

Date Joined Feb 2009
Total Posts : 1882
   Posted 10/22/2009 7:49 PM (GMT -7)   
UC21, I agree with the others, after some time, the good days outweigh the bad. It takes time for the meds to work and learn what you can and cannot eat. Along with that probiotics are essential. Don't let yourself get too depressed before you talk to your doctor or counselor about it. I've had bad days like that too. It seems when my stomach is churning, my anxiety and depression really kick in for some strange reason. It goes away pretty quickly though. Good luck to you and hang in there!
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's

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