Uncertain and Scared

[Chrohn's Chick]

Hello out there,

I've been told it's very likely I have crohn's. My symptoms fit (flare-ups, lactose intolerance, possible arthritis in my chest at a young age). I've had a CT scan showing it's likely. I'm waiting on results from my stool stample and blood tests. I will go in for a colonoscopy on the 7th. This whole experience so far is so scary. And painful. The doctor thinks if I have the disease, it's likely I have for a long time given the extent of the thickening. I feel at least I'm in capable hands.

But the whole uncertain nature of where I'm at now.. waiting on a confirmation (it's pretty much so I can get the right meds), deciding what meds, how sick i'll be. I've had to quit my job because I've been so ill so often. I'm sure they thought I was faking. I heard they were going around the office 'OH, she's sick... again. what a surprise.' I'd like to see how THEY worked during a severe flare-up.

Anyways, I'm also starting a blog. I'm hoping it'll help drain me of some of my worries so that I can leave them and come back to them.

I'm not sure if we're allowed to post links, but I'll try and then see if it gets deleted.

http://blabblahblog.blogspot.com/

The whole thing seems so unreal. Pretty much everything matches, but the odd thing is that I don't seem to suffer bouts of diarrhea unless I'm in a flare up. Meaning I'm uncertain about the diet aspect of this.

Also, it seems I'm in the minority because of this disease. Instead of being underweight, I've got quite a bit I need to lose. I'd like to do so before given any medication that might put weight on, even though I have very little time. So I suppose whatever I can lose will help. Does anyone have any advice in terms of weightloss? It used to be a matter of will before this disease, but now whole foods are out, fiber seems to be a no no along with fresh fruits... it's very confusing. Also at this point my specialist says exercise is good, great even, but I can't push myself as hard as I'd like in order to avoid aggravating the swollen tissue. Any advice? It's so overwhelming.

Thanks for listening,
Crohn's Chick.

 

[Chrohn's Chick]

Also, I've just notice I added an extra 'h' to my user name. That's annoying. But I realise it's there, so please don't feel the need to point it out!

 

[egg]

Hi Im new as well and havent been diganosied with anything yet, I am also over weight but everything i eat goes straight through me so I dont know why im not losing any! I have bad D about 5 to 8 times a day. On monday I went in for a quick check and the nurse said I only had IBS and Piles however my doctor today says thats wrong and I either have chrons or UC so not sure next appt. on the 1st. Im not sure what I should or shouldnt eat all indicaters point at fibre however the nurse said not to when you read about it, its all so confusing. I wish you well try not to panic (i am but do as i say not as i do!!!!!!!!) stay on this site its full of great stuff x

 

[seaofdreams]

Hello and welcome. I myself have only just been recently diagnosed after about three years of suffering from symptoms like D, vomiting and the lovely pain. They got me on the right track after a CT scan too and then after the colonoscopy with biopsy it was confirmed.

It was such a relief for me to finally know what had been wrong with me for so long but it took a very long time for it to sink in. Even after I was diagnosed, I still didn't think of myself as having a disease. Unfortunately a few weeks ago I was put into hospital with a severe flare and possible blockage and have since been put on a drug known as Azathioprine. This is when it became very real for me.

Everyone will deal with the news in different ways. It can be hard to discover that you'll possibly be living with this thing for the rest of your life but it's beyond our control and we just have to learn how to cope with it. You're going to come across so many different people who have experienced both good and bad times and everyones situation will be different but that is part of the process. This disease may be hard but there are loads of people out there who are managing it well and living mostly normal lives.

Best of luck with your colonoscopy, it certainly does sound like you're in capable hands. Stay positive ^_^

 

[My Butt Hurts]

Hi CC - you've found a wonderful supportive place with a wealth of information - so that's a great start. Welcome to the forum!

If you do want to get that extra H out of your name, I think a mod would be able to do it for you. Just send a private message (PM) to Mikeyarmo, Nancy Lee or Dingbat and ask them to do that for you.

 

[crohnsproof]

I'm sorry that you feel so overwhelmed right now. However, I think that most of us have crossed that bridge of fear/why me/now what do I do/ syndrome. When your tests are confirmed you may feel somewhat better by knowing that now you and your physicians can have a plan. Although our symptoms and treatments may not all be the same, we do have a connection with the fact that Crohn's stinks and we don't like it. But, we share our good times and bad times and help each other through it.
Welcome to the site.......you may find a lot of laughter here too!

 

[Chrohn's Chick]

Hello all,

Thank you for the wonderfully warm welcome. It is so helpful to know I can share all this uncertainty and fear with people who have already gone through what I am going through now. I know it's important to keep a positive attitude. But that's way easier typed than done....

I also know this may not be a question anyone can answer, but I was researching on Prednisone and was wondering how commonly this medication is prescribed for this condition. Is this standard? Or is it your stock 'different for everyone, no majority medication' response?

I've been sick my whole life so I don't know if this probably diagnosis changes anything or explains it.

Anyways, thanks again for the warm greetings, it's nice to know there's a community out there who can share and laugh in pain.

 

[misscris]

:welcome: Chick.

You've come to the right place for sure. Everybody here is pretty helpful and friendly. Also, there are several on here that have mentioned or complained (me included) that we have the opposite issue with weight. I have drastically dropped 30-40 pounds before, but still didn't put me in any sickly weight category. I don't know why some people seem to go the opposite way.

Welcome again. Hope your colonoscopy goes well, keep us all up to date on how it all goes. Of course nobody wishes you to have this disease, but if you do, we all wish that you get the answers soon!

 

[shazamataz]

Hiya, I just read your blog. The powem is fantastic and your writing about all your worries etc is really good - you could be a writer!

I understand most of what you said. The uncertainty is the worst part, for me anyway. I feel okay now but it's hard to plan ahead with all the stories you hear, not knowing when you could suddenly end up flaring/obstructing or whatever.

Try not to worry too much about th weight. People CAN put on weight on prednisone (which is a very common medication used initially to get a flare down) but I don;t think thats universal. I've been on pred for nearly three months and have only gained 3 kilos. I found I had a HUGE appetite for the first month or so and now it's just back to normal and I actually have to force myself to eat as I still need to put on more weight. It seems we all go one way or the other!

In some ways you are better off having some extra weight as when we get really sick and lose weight, us little ones don;t have many reserves to help us keep strength for the healing process.

Try to stop worrying too much til you KNOW what is going on

((((HUGS))))

 

[shazamataz]

ps I don;t normally spell poem like that - but its a funny typo!!!

 

[MICWOOL]

Welcome to our forum.

 

[Sunfire]

Welcome. I am in the same boat as you. I am still going through tests to confirm my Crohn's. As for weight, I was about 120 lbs overweight till about December 2008, and my symptoms started a year prior. Around Christmas I just started dropping weight like crazy. I now have about 20 lbs left of excess weight. I will never understand why my weight wouldn't move for the longest time and then just started dropping off. Good luck with getting answers.

 

[Peggy]

Hi, and welcome you will find some good friends on here. Peggy

 

[MD24]

hi and welcome
about Prednisone,yes its very common treatment for the disease