Crohn's Disease Forum » Support Forum » Undiagnosed Club » How do you stop yourself worrying while you wait?

01-27-2014, 02:43 PM   #1
Join Date: Jan 2014
Location: UK
How do you stop yourself worrying while you wait?

I'm currently 'suspected Crohn's' - I've been told the specialist I saw was '99% sure' that's what I have, and my symptoms definitely fit with what everyone on here says about their experiences. I had a CT scan on the 23rd of Jan to confirm the diagnosis and now have to wait until the 11th of Feb before I can see my (very helpful, lovely) gastroenterologist and hopefully start on some steroids to get rid of this thing...

My question is, does anyone have any advice for stopping yourself going crazy while you wait?

I try to stay busy, but usually don't have enough energy. I work, but have cut my hours down to less than 4 days a week because I'm not well enough to be in the office much, and even when I am there are a lot of quiet periods with little to do. I am spending a lot of the time home alone at the moment - it's not so bad when my boyfriend is home too, but when it's just me I take a whole day just to get up and dressed because I'm so tired, and I have too much time to think.

Whenever I'm not busy, I get to worrying about everything... what the steroids will do to me, whether I'll have to have surgery at some point, whether I'm going to lose my job, whether I'll be able/want to have kids (I have a currently-very-painful r-v fissure which is the cause of this particular stupid worry ). I don't recognise myself when I look in the mirror because I'm so thin and panda-eyed and pale, which gets me down I worry most about my relationship - he is having to do so much for me at the moment and I'm sure he resents it. He's not the kind of man to talk about emotional stuff, but I have noticed that he doesn't pay me compliments or show physical affection any more - he treats me more like a friend.

So, because being miserable isn't making me feel any better and I caught myself singing Morrissey in the shower this morning, I turn to you lovely people... Any tips from fellow worryworts on how to stop yourself driving yourself nuts?
01-27-2014, 05:09 PM   #2
Senior Member
TwinkleToes's Avatar
Join Date: May 2011
Location: Orlando, Florida
Hi weatherwax -

So sorry to hear about your anxiety and constant worrying. First, let me start by saying that you have plenty of support on this site for any questions or concerns that you may have.

With that being said, I understand your concerns about this disease. I'll be honest when I say that it's not an easy disease to have, nor a cheap one. It affects everyone differently and not only does it affect you, but those around you. I, like you, worried plenty. I went about 2 years without going to a GI Doctor because I read the horror stories on Facebook forums about surgeries, awful medications, etc. I swore that I would never go on medications. Well, let me tell you something, that ship has sailed!

First, I know it sounds simple, but you need to stop worrying. Worrying is not going to help anything, nor is it going to make things better. Stress can aggravate this disease. I understand that you are tired, but do what you can to clear your mind. Watch a movie, go on a walk, get out of the house. Find a hobby to keep yourself busy. I keep a personal blog that is private to me where I can vent and let go. I find it helps a ton.

As for medications, yes, they stink. But, they are also a godsend. I was 132lbs (I'm 5'8") and steroids practically saved my life. When I had my colonoscopy in April, my GI Doctor told me that if I waited about 6 months longer I would have been in the hospital for emergency surgery. While steroids are great (kind of) when you're on them, coming off of them stinks, and they are not a guaranteed fix. When I got off steroids my GI gave me a choice between Humira and Remicade. I chose Humira based on the convenience and what I have read in regards to symptoms after taking the meds. The best thing you can do is make sure you have a great Doctor so that you can find out what plan works best for you. One thing that is so true is that finding the right medications is an art, and when you are on the right ones, you will feel SO much better.

I know it seems scary but I promise you, things will get better. If you go on medications, they will make you feel better and give you a better quality of life. Do what you can to research your disease and where your Crohn's is located - it will help tremendously. Last, about your boyfriend. Do NOT (and i'm talking from experience) let a man dictate how you feel. You are going through enough as it is mentally, physically, and emotionally, and the last thing you need is a man who resents the disease you have. I dated a total jerkhole for over a year. I was never good enough for him and he barked out orders as to how I should eat and live my life. He never complimented me and ended up stressing me out (which I think put me in my last flare). Well, I dumped him because I realized I deserve better. As one of my close friends told me, a REAL man will understand, respect, and support you. And, I am lucky enough to have a REAL man in my life who has been there through thick and thin, and (he straight up told me this) loves me even when I poop 11 times a day.

Please know that you have support here, and do your best to understand that things can only get better from here. I also have r-v fistulas and the humira has helped so much with those. I have also changed my diet to Paleo and added juicing which has been a huge help. Stay strong, pray, do what helps you get through all of this. Believe that you will get better, have kids, and live a happy life.

Hope this helps.
Dx'd Crohn's disease of the terminal ileum and colon.

Runner (Completed over 15 5K's, and one half-marathon!), Horseback Rider, Lover of the outdoors (especially when restrooms are around, wifey and Mama to two rescue dogs.

4G Pentasa/day
40mg of Humira every week
175mg of Imuran daily
Prenatal Vitamin, Calcium/Magnesium, Iron/Vitamin C
01-28-2014, 07:14 AM   #3
Senior Member
Join Date: Nov 2013
Location: Monongahela, Pennsylvania

My Support Groups:
Your not alone. its not easy. the mind does a lot on our thinking. When I feel good I wonder how long will it last. then when I feel bad I wonder how long will this last. over and over. keep busy helps. but you feel tired. I play games on line, or watch(really) listen to dvd movies I like .Or put podcasts, for positive words. also so have some one talking to me so donot feel alone and work on myself. take care

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