Help! Please reassure me! Just diagnosed, and feeling terrified!

Crohn's is rarely a death sentence. I understand the fear, though. Bleeding especially can be scary.
Many people with crohn's are able to manage their disease very well. They can have long periods of remission.

My understanding is that there usually isn't much of a difference in life expectancy of a CDer or a healthy person.

You might want to educate yourself about the disease by visiting the Crohn's & Colitis Foundation of America or Canada, ccfa.org or ccfc.ca. Both are very informative and have the latest info.

Please know that you're not alone in this and there is hope and definitely a chance to live a fairly normal life for a lot of ppl with IBD.

Lastly, since you're newly diagnosed, I suggest you get on a good probiotic (if you're not on one already). Many of us CDers find probiotics quite helpful. You may have to try more than one before you find one that works well, and give it several days to work. Ask you GI if he/she can recommend one.

Also, in addition to meds, you might want to try some diet changes. Some ppl find it helpful to temporarily eliminate dairy, wheat, processed foods, and sugar.

Glad you found us and feel free to stick around!

It'll be alright. It's scary when you are first diagnosed, but it's not a death sentence. I found it helped to read up on Crohn's...there are plenty of books and Web resources. The CCFA site Roni mentioned also has links to area support groups, so you might find that helpful to get in touch with people near you. We share a lot with this disease but we're also all different, and different treatments help some and not others.

I definitely have anxiety from the Crohn's, and prednisone brings it out in me more, in addition to irritability and some insomnia. Talk to your doctor about your anxiety. I take xanax as needed, it's a big help.

It's a lot to deal with all at once. Hang in there!

Sarah

Thank you so much guys. I don't know many people with Chron's and a certainly don't know anyone who is old and has Chron's so thats why it scares me. My stupid brain keeps telling me I don't know any old people with Chron's because they never survive - it's stupid huh?

I'm going to go to the doctors and see if I can get my efexxor dose raised and maybe some valium or sedative for the attacks. I'm really hoping this is just a reaction the the prednisone because theres no way I could live like this, I'd rather throw myself off a cliff!

Do you ever get to a point where you can accept your disease? I was only diagnosed two months ago and since then I feel like my world has fallen apart. I feel like all I am is a disease. It's so scary!

I'm 23. I was diagnosed at 16. I have resigned myself to an increased risk of cancer and other health ailments (more on account of all the untested treatments I've tried than the Crohn's itself), but they are far from inevitable. While I'm probably not going to live as long as some of my healthier friends, I probably won't die all that much sooner either, and I fully expect to live a meaningful life in the mean-time. I'll probably beat my smoker friends if they don't quit soon.

Frankly it's all kinda moot to me. If something bad happens, it happens. I'll deal with it, just as I have Crohn's. If I kick the bucket too early, well, that would suck, but I'd hardly be in a position to complain. In the mean-time, I'm happy with who I am as a person, so anything I do from here on out is icing on the cake. Or a whole new cake. And a pie. Strawberry-rhubarb pie. Because it's my life, and I like strawberry-rhubarb pie.

Anyway, Crohn's isn't really a deadly disease. I mean, like anything else, it CAN kill you, but it doesn't really work all that fast, or that directly. Realistically, if you see a doctor regularly, death isn't something you should worry about, at least no more than the next person. Probably less than the next person, actually, because they're probably not seeing a doctor as often as you. The day-to-day stuff sucks enough. You don't need to add to the suffering by worrying about things that are out of your control anyway (everyone dies at some point).

But yeah, I've had the benefit of being diagnosed during some of my more formative years, so for me, Crohn's is really just a part of who I am. Not a particularly pleasant part, but one I can't really do anything about and one that I've been able to draw on for strength in certain things. So I think I've accepted Crohn's fairly well, and while it's not a cakewalk, I like my life and wouldn't go back and change anything, not even Crohn's.

Edit: I should add that I am most certainly NOT entirely defined by my disease. Sure, I don't get out much because I'm not feeling well, but really I was never a party guy to begin with. When I go out, I hang out, have fun, and chill with my friends. Until I go to the bathroom and come back all pale, no one is even thinking of Crohn's.... and even then, it's just a "Hey you okay?" "Yeah I'm fine, just not feeling well today." "Oh that sucks." and then we resume whatever we were doing. Sometimes if I'm really doing bad I'll need to decline activities or whatever, but like I said, I was never really a party guy anyway so sitting and watching my friends have fun is fun in and of itself. We're pretty big into video games, so that's not usually a problem anyway. >> I << define who I am, not what happens to me.

I'm an old retired dude , and though I was Dx only about 7 years ago I have had the disease sense I was a teen . I made it through the army and a job of 31 years . No , it wasn't a cake walk but there are worse things to have in life as well as better . As Sparkleplenty says, it is what it is . Best thing you can do now is accept that you have an illness that needs your attention . See your doctor and take your meds . Don't fear what you have in store because you really dont know what you have in store . We are all different and though some of us have more symptoms , some of us do not . Most of all , enjoy life as much as you can . Consider this your wake up and smell the coffee sign . The less you stress , the better you will be .

 Hello & welcome the forum! I'm sure you will find so many nice people here who will offer you support and advice at any time. It's lke a crazy family that talks about all the ambarassing stuff no one likes to talk about at athe dinner table

  Song, Crohn's, like others have said, is rarely a death sentence. It is a chronic, painful, draining disease though. Not a lot of people like to talk about Crohn's and that's possibbly why you haven't 'met' someone with Crohn's. You probabky have met many people with

Crohn's but they just don't come right out and say it.

  Their are SO many people on this forum that are in remission and have been in remission for decades! Most of them have little to no symptoms and lead a relatively normal life. Sometimes it takes a few months to reach remission, sometimes it takes years and sometimes people never get remission. The most important thing is to try to have faith and not give up!

  

   Their are so many treatment plans out there that can help you and everyone chooses a different path. Some CD patients use the natural path, some use up to date medical therapy, others follow specific diets that are aimed to treat symptoms. I suggest that whatever path you choose that you ask our GI about getting a good probiotic and maybe some vitamin/mineral supplements because many people with CD find that probiotics(the good bacteria) to ease their symptoms and we CD patients tend to have malabsorption issues.

   As for the prednisone, I know exactly how you feel as well as any others on here! It will drive you nuts! As if living with a chronic disease isn't enough prednisone can cause bad side effects like weight gain, mood swings, calcium maalabsorption(might want to get on a supplement for that),anxiety, shakeyness, acne, stretch marks, extra facial hair etc. In the long run it can cause problems such as oseporosis, cataracts, and so much more. This is why it's important to follow your tapering schedule to a tea. Steroids usually help a lot of people out! It can get you into remission quickly! It is one of those love-hate drugs. My body doesn't respond to steroids, I recently found out but I still have to taper slowly off the 60 mg because if you stop cold turkey your body will FREAK OUT. When you get off the steroids your body should slowly start to become a little bit more 'normal'. Remember, their are SO many treatment options! There is nothing wrong with asking your PCP or GI for a anti-depressant/anti-anxiety drug! You go for it Stress will make your Crohn's flare/make it worse. I've been under so much stress lately and sometimes I just have to take a break from everything, sit down, do my pity party cry, go on this forum for support, then take a nap and all is well! Prednisone has made me a moody wreck but that's what this forum is for.

  Take a deep breath! At your next GI appointment ask him/her all the questions and concerns you have. YOU are the patient. ((HUGS!))

Heya,

More of a dog pile here, cause everyone already said it.

Your not alone. I think I have read of less then a handful of death reports from crohns over the years, compares to the millions who now supposedly have it.

So I Would have lump it in there with other totally dibilatating diseases that dont kill ya out right, just make your life oh so entertaining.

OMG, the first few years after my diagnosis, I was a basketscase, some here may still tell ya I have a ways to go, and I have been dx'd now 12 years, became unmanageable in 2000, but then I didnt know what was wrong, had it since birth though now looking back at my life, 44 years old now.

Then over time, I started to realize these things, this pain, this torment wasn't killing me, it sucks, it's a special kinda hell, but not killing me.

The mental part, some days great, some days not, but I get through, and in large part to this forum, when all other sane voices in my life left me for lack of understanding about my disease, these friends here did not and never will.

Pred can reak havoc on some peoples sanity as well, you can get pred induced mania, which can make you feel very unstable, you should talk to your Doc about your mental feelings as well as your physical one, this disease covers both and warrants attentiont o both, don't avoid your brain and emotions, they are just as important to you keeping your crohns under control.

It was very important int he first few years for me, and many others here to find the right med regime for them, cause it truly can be different for so many of us. Good news is, there are really only so many meds to choose from, so you wont have to try tons of them.

Many of the "non-pharmacy" options are all good choices to, the probiotics, the vitamins, acid reducers, types of wipes. My lord, the info of what has worked and what hasnt worked for others on this forum might strangley help scientists find a cure if they ever bothered to look at what a huge test group of written testimonials looks like.

Do yourself a favor, cruise through these forums, you don't have to spend alot of time, but if you just read through some back pages, you will, if your like me, be comforted by everyone else here.

A simple pred reduction may reduce anxiety, or zanax or valium may reduce side effects from anxiety, etc, etc.

I know it can be alot to take in, but keep houding your Doc's, let them know everything, evn if they don't want to hear it, be heard.

And of course, keep us updated, we are like 7-11, open 24/7 baby!

Thanks

Jon

Post Edited (Blue Velvyt) : 12/3/2011 8:20:44 AM (GMT-7)

Wow, you guys are amazing. I'm so moved by your supportive words!!

I called my GI and he's told me to stop taking the Prendisone immediately. He told me if I don't I will slip into heavier mania, because I'm already feeling like I'm losing my sense of reality.

So the plan is to gradually ease my way onto 8x500mg tablets of mesalazine daily. He told me that this will help me just as much, it just will take a little longer (that's so reassuring). And the fact that some of you have said mesalazine has helped keep you in remission gives me hope too.

Now I'm going to make an appointment for the doctor and get some emergency valium/xanax etc so that I am prepared if I have another panic attack. I don't want to live like this, so theres no point living in denial, my anxiety is the culprit here, 150%. The diagnosis of Chron's Disease sucks and would make most people a bit upset, but my reaction has been extreme. I can tell the biggest problem here is my anxiety and NOT the Chron's.

From what you've all said, death shouldn't even be on my radar. I only have mild Chron's and theres no reason I can't keep it mild forever or stay in remission for many years. There is literally no reason for me to be thinking about death.


Also, the the older people that posted here - I was almost in tears reading what you wrote. THANK YOU. Omg, thank you. I have not heard anything from ANYONE older with Chron's, only those in their teens and 20's. To hear you have been ill for this long and still (relatively) okay, gives me hope and warms my heart. Thank you so much, you will be my hope throughout this disease. I will try not to worry about death anymore, from the sounds of it Chrons and death are rarely ever related, especially if on meds.

Thank you again everyone. I will keep you posted on how I go with a new mental health plan and with relaxation methods. My goal now is to kick that ugly death word OUT of my vocab!

I've only been taking it for 3 days so he said it'd be okay to stop it immediately. Fingers crossed he's right! Lucky I could get in touch with him, God only know what I'd be like if I stayed on this stuff too long, I might have ended up in an insane asylum! LOL

The more I think about it though, the better I feel. I think deciding Chrons = Death sentence is so irrational! So far from what I've learned, all Chron's is, is literally a pain in the ass. lol