New Guy

[Paradox]

Hey all

I was diagnosed last year when I went into the doctor for severe constipation. They ran a scope and diagnosed me with Crohn's disease. I stumbled across your board while looking for information on Crohn's disease. The forum seemed friendly and offered lots of good advise. Also I don't feel like such a freak for having constipation instead of diarrhea now.

I'll be honest it's pretty hard for me to open up and I have a hard time talking about myself. I am hoping that being semi anonymous on the internet will help me with that. I came here because I need to talk to people that have the similar issues that I do. I'm married but it's hard to talk to the wife about something I barely understand.

I also have a lot of fears that I try to dispel (even hardier to admit =P). I'm worry about what the future will hold with this disease. I try to focus on the now since there is no predicting what will happen.

Anyways here are my symptoms:

Constipation
Hemorrhoids
Bloating/gas
Pain in lower right side (have Crohn's in my terminal ileum)
Exhaustion (which is much better with the b complex)
nausea

meds:
Pentasa (4x a day)
I was on predinose a few months ago but I flared up very bad after being weened off. I'm currently flaring on and off now that I'm off the pred and I worry about strictures/scarring which will result in surgery. Am I being paranoid?

supplements
Fish Oil Omega 3
Vitamin B Complex
Probotic pill

 

[Grumbletum]

Hey Paradox
Sorry to hear about your Crohn's diagnosis, but glad you have found your way to the forum. I don't know what I would have done without it over the last few months - it is indeed good to talk to people who understand what you are going through.
I don't think you're being paranoid at all: Crohn's is a pretty scary and unpredictable disease. I'd heard of it before my diagnosis, but had no real awareness of all the symptoms and permutations of the disease. Big learning curve!
Have you got a doc appointment anytime soon? I see that you're on Pentasa, but it's pretty mild and if you're flaring you might need to be on something a bit stronger to get things under control?

 

[Jer's Girl]

Welcome Paradox!

It can be hard to talk to others about having this disease, but having this forum really helps! Welcome to our little sickly family!

 

[Paradox]

Thanks for the welcome!

Grumble I was pretty much told by my doctor that unless my symptoms were to get worse he recommended I stay off the Pred. He was talking risk vs reward and didn't feel that the pred was worth the risk right now. I was okay with the decision at first but I worry what damage will be done if I don't get it under control.

Do you know what the normal time on pred is? I was only on it for four weeks perhaps I should have been on it longer?

My insurance won't help me pay for enticort (spelling?)

 

[David]

Hi Paradox and welcome! I'm so pleased you decided to join us

When you say you're on "B Complex" how exactly are you taking that? Is it an injection, pill you swallow, or something else? Did your doctor put you on it? Have you made any dietary changes?

I certainly understand how it can be hard to talk about yourself, but you're amongst kindred, non-judgmental spirits here. We just want to help and maybe be helped at times as well.

Again, welcome

 

[Grumbletum]

Thanks for the welcome!

Grumble I was pretty much told by my doctor that unless my symptoms were to get worse he recommended I stay off the Pred. He was talking risk vs reward and didn't feel that the pred was worth the risk right now. I was okay with the decision at first but I worry what damage will be done if I don't get it under control.

Do you know what the normal time on pred is? I was only on it for four weeks perhaps I should have been on it longer?

My insurance won't help me pay for enticort (spelling?)

I don't think there is a normal time: depends on the severity of your symptoms and how quickly they respond when Pred is prescribed. I startd on 20 mg tapering, but was put up to 40 and have been told to remain on 30 for the meantime as the disease is still very active. That means I've been on it for over 4 months now.
It is a real bummer about the insurance and being from the UK I can't really advise on that, but hopefully someone else can chip in. My advice is to go with your gut ( sorry for the pun! ) instinct. If you are worried, the stress is not going to help and if you're flaring, to me that means things are still not right. This disease is so insidious, so better to be on the safe side and discuss your concerns with your GP.
Let us know what you decide and how you get on

 

[Jennjenn]

Hi welcome

Here is a place where you can feel more than comfortable talking with other people going through similar issues. I hope you find pletny of helpful information.