Newbie, scared, in need of hope

[jbaird01]

Hi guys. I'm so happy I've found this site. I'm 29 and was just diagnosed on Friday with Crohns and I'm so scared of this thing that I have and what is still to come. I've been doing some research on CD and all of the treatments sound nasty, and the long term outlook doesnt seem great, and I am just so frightened of the whole disease and the process.

Had Colonoscopy Friday and Dr tells me I have Crohns and has prescribed Pred 25mg (which seems like a low dose compared to some other threads Ive read on here). I googled the Pred and read all of the side effects and that has worried me. I dont want to put on weight, I dont want to have any more sleepless nights (already have plenty of those), and certainly dont want to have any mood swings (my husband would argue that I already have enough of those!)

Seeing Dr again for further discussion about long term treatment and to find out the real extent of my CD.

I guess I am just scared and I am sceptical that everything will be alright, despite what my family keeps telling me.

:sign0144:
:confused2:

 

[Crohn's 35]

Welcome Jbaird!!!! We know you are scared, and all of us at one time or another in either the diagnosis or flares have brought here to seek help and get information. Sorry you are just finding out, but we are all here to help you in our experiences. I was dx at 32 with a young daughter and there were no computers then and the things that go through your head and wonder what the future holds right??

Yes you are on a low of Pred, that is unusual but every Gi is different on how to handle the disease. He may not find it warrants high doses and maybe see how you do in a short time. Your family is right, everything will be ok, but there are times you need to stay away from stress and see what your Gi will do for you.

Mood swings, sleepless nights, are seen mostly in the higher and longer term of Prednisone, I am on it yet again, I try to avoid it but it is a sure fire way to get it undercontrol. The best thing to do is get as much information as you can. The only thing you have to remember is we are not doctors but we know how it feels and being scared from time to time is normal. Support means alot and we are here as well as your family members to get you through the rough times. Concentrate on getting well. You will receive help from a great bunch of people here. When do you see your Gi again???? Glad you are here, we are there for you!

 

[dreamintwilight]

Welcome to the boards JBaird

I too am somewhat new to this board and new to Crohn's. I received my official diagnoses this past Tuesday after a colonoscopy and a stint in the hospital over the Christmas/New Year holidays. I too was terrified upon hearing about the potential diagnosis of a lifelong disease with no cure. I had my share of emotional days and nights, but my husband reminded me that it is OKAY to be scared! It's natural in the process.

It would be irritating sometimes when people would tell me everthing would be okay and I didn't feel that way, but whether we realize it or not we are lucky to have that support of friends and family and those who care for us. Some people struggle with this alone.

I'm glad you found this forum because it really helped me sort out my fears and worries a lot by hearing other people's stories and experiences. I hope you find it helps make the process a little bit easier for you as well

I'm glad you

 

[Rob]

Being worried an scared is normal
the main thing is you hav a supportive family etc as u will need them in difficult times - such as now

I hope things go smoothly for you now that u hav a diagnosis

and welcome too the forum

 

[Jennjenn]

Welcome

 

[RobK]

jbaird01,

I've had crohns for over 20 years and have had little success with mainstream treatment.

I would personally recommend you look into the Specific Carbohydrate Diet and as a medication Low Dose Naltrexone (LDN).

Can't say that I've cured myself using this method but have definately stopped progression of the disease and have not had a flare up for almost a year.

Good Luck!

RobK

 

[InkyStinky]

Hi! I'm somewhat new to this forum, too, but I've had Crohn's for a long time. I'm sorry you have Crohn's. Like others have said, all that you're feeling is normal.

As for the pred, I've been on it many times in the past and had always started at 40mg - with my current flare-up, however, my new GI started me at only 20mg (I weigh about 135lbs). I was surprised that this dose actually stopped my diarrhea and bleeding very quickly (in a few days). Hopefully 25mg will work for you and your GI will find a good maintence med for you so that you don't have to be on it too long.

Keep us posted on how you're doing, ok?

 

[Astra]

Hi jaird!
and welcome!

I can only add the same things that the others have posted, I'm new to this forum too, but not new to Crohns! but finding this site has opened a whole new perspective on being a Crohnie! I am no longer afraid, and in time neither will you.
we are here for you with our own experiences and there are lots of advice support and belly laughs too!
I'm on Pred, and I can honestly say it's saved my life! I am so well for the first time in years, yes it has horrible side effectsl ike insomnia, but it is manageable, it's a small price to pay!
You're on a small dose, so this might not happen to you, just rest as much as you can, hopefully you'll be ok
lotsa luv
Joan x

 

[alexandros8]

Hi Jaird! Welcome to this site!

First of all I wanted to let you know that its normal to be scared- we all have this disease and the little answers it has. So its ok to be a little scared, but just keep your anxiety in check. Anxiety can actually make symptoms a little worse- so try and keep what you can in control. I often like to think about what I do know- and what I am doing to battle this disease. That helps with my anxiety. Between your doctors, your friends and family, and now this site you do have ammo to fight with! Try and think about the positive things to keep your skepticism in check.

The most important thing you can do is find the treatment that works best for you. Everyone reacts to Crohn's differently. So keep an open mind and hope for the best. Something will fit your needs soon and you will find that living with Crohn's can be manageable! Good luck!!

 

[pcbgirl227]

Hi Jbaird01!!! I have been diagnosed for almost 3 yrs, and understand completely. There are some great resources out there, like this site, CCFA, and even Mayo Clinic site. It is a very scary disease when you first get diagnosed but once you start doing research you will find ways to recognize symptoms as they start. Good Luck with everything!!!!

Oh, when I was first diagnosed I was put on Pentasa. It was a great med and not very many side effects. If you aren't having too bad of symptoms might want to give it a try. Worked better for me then Pred.

 

[Cackman888]

welcome

 

[farm]

Welcome.
With that low dose of Pred. maybe(hopefully) your side effects will be minimual!

 

[Jennifer]

Hello and welcome!
We're all scared at first but that doesn't last. I was diagnosed 19 years ago when I was 9. There are ups and there are downs but this disease isn't the worst thing in the world to have. I'm glad you found the forum early on cause no one wants to be the only one and feel alone.

 

[Nyx]

Welcome to the forum. You'll find alot of support and info here! Good luck to you!

 

[ameslouise]

Welcome!

Try not to be too anxious about the Prednisone. Everyone seems to react differently. My experience has been no insomnia or weight gain at all or moon face (but tons of facial hair!!).

Keep poking around this site for answers. I think you'll find that the atmosphere in here is so warm and welcoming it will help ease your fears a little bit.

Be patient. Be strong. And it's okay to be really scared.

Hang in there and keep us posted on your progress - Amy

 

[kenny]

One thing that took me a bit to realize when I first came here is that all the stuff you read is a compilation of a lot of different situations. It's not like it is all going to happen to you. It is pretty much every thing that has happened to every different person here. Crohn's Disease is a very wide ranging issue that can effect people in very different ways so there are plenty of different stories here. Don't get overwhelmed by them all or the severity of some of them.

We all have our own personal struggle with this thing and for some it has been a long hard go. For most it's not so bad.

Hang in there and it will work out ok

 

[orchard archer]

Welcome!
I found when on Prednisone, Any Caffeine wound me up Big time!
Ask the Dr. If you can take the Prednisone in the Morning?
As you can see I am new too, Let People know here how you are doing They really Care!

 

[Nancy Lee]

Yes! We really do care!!

Stay in touch and let us know how you are doing...
and it's quite normal to be scared...
but you are in good hands now.

Welcoming Hugs~Nancy

 

[CrohnieCarolyn]

Welcome! I can only tell you that everyone is going to tell you something different because this disease is different for everyone...different area of the bowels, amount of inflammation - so some can eat certain things others can't, some do great on pred., some it stops working - you just have to find out what will work for you - the good news?! You have the immunosuppressant drugs now as an option that they didn't have when I was first diagnosed - have they mentioned any of these like Remicade or Humeria? Keep us posted and I hope the pred. doesn't cause too many side effects..

 

[RogerDoger]

Salutations!

I don't want to sidetrack this thread too much, but

I've had crohns for over 20 years and have had little success with mainstream treatment.

I would personally recommend you look into the Specific Carbohydrate Diet and as a medication Low Dose Naltrexone (LDN).

Can't say that I've cured myself using this method but have definately stopped progression of the disease and have not had a flare up for almost a year.

Good Luck!

RobK

Wow, RobK, that's what I like to hear: hope! I googled Specific Carbohydrate Diet and found a link to a book at Amazon called Breaking the Vicious Cycle.

http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818

Look at how it's rated there!

5 star: (204)
4 star: (17)
3 star: (17)
2 star: (3)
1 star: (7)

The reviews are worth reading.

I think I could kill two birds with one Naltrexone! :lol:

Sorry for the detour.

 

[Justicexhaze]

Welcome Jb. Well...I was diagnosed when I was 7 and I am 44 now. I have been on just about everything and have had two resections with a possible third in the wings when the stricture gets bad enough. I spent way too many sleepless nights and worried/ angry days. As you have seen- so many people with the same thing but different areas of pain, flair ups, treatments, diets. I can tell you not to worry but sometimes all you do is think and wonder...why me. Do as much research as you can, don't go for any crazy "natural cure" bs things. Work closely with your Dr. Also remember he or she is not the only one out there. I didnt really know how good some of my dr's were until I had a bad one. Example...one Dr would refuse to refill my meds unless I got my blood drawn each month. He was a good one because he forced me to take my disease seriously. I was past all the scare tactics and sometimes just didnt care. He made me care and take responsibility. I quit drinking 15 years ago and stopped smoking 6 years ago. My wife has been very supportive (it helps that she is an RN) and has also forced me to go the extra mile on treatments, diet, and Dr's appointments. Depression can also sneak up on you. It seems all too much sometimes but you will get through it. I even started The Crohn's Chronicles on youtube to help vent and inform others. As far as the predisone...I take mine in the morning with breakfast. I also am currently on Humira. Good luck my friend.

 

[Astra]

Hey Roger
how u doing?
sorry to hi jack
but ive looked at SCD and stopped when I saw broiled fish URGH!
its the Victorian kitchen diet, innit?
back to basics

 

[InkyStinky]

One thing that took me a bit to realize when I first came here is that all the stuff you read is a compilation of a lot of different situations. It's not like it is all going to happen to you. It is pretty much every thing that has happened to every different person here. Crohn's Disease is a very wide ranging issue that can effect people in very different ways so there are plenty of different stories here. Don't get overwhelmed by them all or the severity of some of them.

We all have our own personal struggle with this thing and for some it has been a long hard go. For most it's not so bad.

Hang in there and it will work out ok

Wow, this is very well said, Kenny.