Worried about the future

[sarahsoda29]

So I've been reading alot of posts on here since I was diagnosed in May. I want to be prepared for what COULD happen, or what MIGHT happen to me based on other's experience. I don't want to be shocked if things get worse with my symptoms and I have to have surgeries, or any of the other really bad things that can happen. Right now I'm pretty lucky. I have the constant D and cramping, but I'm also not on the right medication yet. I was taking one but it wasn't right, and I'm waiting for my referral for the GI doctor then I will be going to them for the first time. My regular doctors did my Colonoscopy and diagnosed me, and now they are referring me so I can get better treatment. The meds I was on before was Balsalazide which just caused more D, and Prednisone which just make me stop bleeding for a bit and gain 25 pounds (joy). I'm hoping the GI can do more for me. I have to say though that all of the stories about Stomas and so forth has me pretty worried! All I keep thinking is "What if I have to do THAT?" I'm scared of it! To me that is one of the worst things that can happen and that's the last thing I want! I know that sometimes the choice is Stoma or life, and I hope i never have to make that choice! I'm scared I will though!

 

[Starla86]

I'm sorry to hear of your dx but welcome to the club Something that I have learned to do with this disease is to take it one day at a time bc if you dwell on the worst possible outcomes you will drive yourself nuts!! It sounds like you're on the right track with getting a GI and hopefully they can get you stable on some new meds. I wish you well in your journey :heart:

 

[Jennifer]

I agree that taking it day by day is best and to try not to focus on all the "what ifs?" I used to be afraid to have a stoma too and I pretty much grew up with Crohn's (diagnosed age 9 and am 30 now). Yet since I joined this forum and talked to many people who do have a stoma, I'm not afraid anymore. Nyx is the main person on here who has pretty much pounded my fears of that into nothingness. So thank you Nyx and everyone else who's shared their wonderful stories about stoma life.

Keep in mind that not everyone will wind up with a stoma. So far I've had one surgery (8 inches removed of small and large bowel) and have been in remission ever since (13 years so far). It is possible to go into and stay in remission for a long time and hopefully forever.

You said that you've read a lot of posts on here but have you checked out the Success Stories subforum here: http://www.crohnsforum.com/forumdisplay.php?f=72 Have a look through there whenever you're feeling like you'll never get well.

 

[superhotfemale]

It's really scary at the start - but hang in there, totally agree with taking it one day at a time.

I scared myself silly when I was first diagnosed (same as you-lots of D's and cramping) and to make it worse, I was in a different town and wasn't with my own GP and after my some gastro woke me up after the colonoscopy, he just said "you have Crohn's and need to make an appointment to see me", then left - I was a mess and started searching the internet and made myself worse!

Now 6 years done the track, back in my home town with my own GP and a fantastic Gastro and after lots of talk about surgery and trying lots of different meds - I have found the right one (it's an organ anti-rejection drug, but it works on Crohn's), I tell people "had to try alot of medication frogs before I found my medication prince!"
I also count myself as one of the lucky ones as I have never had any other problems besides the normal - dehyrdation, tiredness, D's, pain and only once had the start of a fistula (Gastro caught it early and treated it!).

So hang in there and try not to think about worse case scenerio as it does make you more scared (I know this from experience!) and with all the changes in medicine and how everybody reacts differently to medications, you wont know whether you will have to have surgery or whether you will get it under control with meds - give your Gastro a chance first!

Good luck and good health to you!

 

[persephone300]

I think you have to take what life throws at ya...18 months ago they said to me ...you need surgery and you'll have a stoma, and my answer was...I aint that sick! And now, I KNOW, that I need that. I couldn't go on the way it's been the last 8 months or so. It'll buy me a new life.

I think one just has to try whatever they can, all the meds, any advice, see how things go. I've been lucky really, had this for 12 years, and so I've had time to make this decision and know the difference between what is manageable for me, and what isn't.

 

[moogie]

I've had this plague since I was 11. i'm now 38 years old. I've had two sotmas (temporary) and I had 2 resections. I've tried tons of different medications and I've been in remission a while back for over 10 years. Now my crohn's is very verya ctive and needs to be put out of it's misery.

I'm like you put in front of a choice between life and bag I'm not sure what I would choose. Crazy hen but it's the truth. Now this being said, there is certainly no need to panic right at the start. There are tons and tons of different treatment to try and some many different options. Getting the bag is just one of them. Like everybody told you live today and deal with tomorrow... well tomorrow

Sometimes things do go right even with this plague.

Good luck and keep posting we are one big happy deheria filled family

 

[Gianni]

Being diagnosed with this disease can be very scary because it leaves a lot of "what ifs" in the air. I know when i was first diagnosed i just about drove myself crazy reading stories on the internet of just awful experiences people have had from crohn's. I got to the point where i realized the people who are living fine with crohns and do not have problems are the ones not posting on blogs and forums. It is all of the cronies who are having problems that are asking questions on forums. I stayed away from the internet for a full year pretty much and did my own research into alternative health and the like. Researching into this gave me hope and enlightened my mood a ton. Now i can go on these forums and read the worst of the worst stories and i don't freak out. It gets better i promise. Also there is a success stories thread on this site, i suggest you read into those to keep your head in the game, they are also pretty inspiring

All the best

Gianni