Crohn's / IBD and social worries

[buashley]

Hi Folks,
I was diagnosed with crohn's in 2009 during my first university degree..lost 60lbs in 2 months and almost had to leave school. I got it under control fairly quickly after diagnosis and was basically in remission for about 4 years. More recently I've been quite ill (had a month of health!) and I'm really feeling the "social anxiety" part of the disease this round.

I'm worried everytime I leave the house that I will get sick. I am worried if I go for supper with friends, or when I go to work every day. I am scared to eat and I am scared to drink. I've cancelled plans because I've had a bad episode and am in pain and completely drained of energy.

I don't want this disease to ruin my life, but I can't help but "play it safe" at this point. Going to see dr again in 2 weeks and I'm going to make him give me something stronger (currently only taking Pentasa).

I'm sure there are more of you who deal with this same concern... any tips?
[emoji19] [emoji18]

 

[ronroush7]

Hi. Have you ever done a food diary to see what foods aggravate your system? I hope that your doctor can find the right mixture of medicines to get you in remission. I am sending my support. Keep us updated on your status.

 

[Cat-a-Tonic]

Anxiety can be a big part of the illness. I've found that, even though it's hard, it helps me to just "do the thing anyway". If I'm anxious about going somewhere or doing something, I just make myself do it. Almost always, things turn out okay, and that in turn gives me the confidence and lessens the anxiety the next time that I have a thing to do.

The anxiety never completely goes away - I will admit, I was extremely anxious before my recent trip to Japan. I don't speak Japanese and had never been so far from home before, so the "what ifs" would not stop going through my head. What if things take a bad turn and I end up in a Japanese ER, or even worse, admitted to a Japanese hospital? How do you even say "rectal bleeding" in Japanese, what if I can't convey to the doctors what my issue is? What if the food makes me ill? What if, what if? I honestly had many moments of feeling like, I don't want to go, I want to stay in my home and hide from the world instead. But I made myself get on that plane, even though it was so scary, and I ended up having a completely wonderful time. I didn't end up in the hospital, my body loved Japanese food, I actually felt really great the entire time, and I'm so glad I went. Now I want to go back! And since that trip went so well, I'm now actually looking forward to taking more trips in the future! I know that if I can not only survive but thrive for 3 weeks in a place that's halfway around the world where I don't speak the language, well my goodness, I feel like I can do almost anything and I don't need to worry so much. It gave me so much confidence!

So really, honestly - even though it's hard, make yourself do some of the hard things that make you anxious. When you see that not everything will turn out disastrous, it'll make future things much easier. You don't have to push yourself to do everything all at once, just pick one thing that you've been dreading doing and push yourself to do that thing. It'll be okay.

 

[Tuff]

Are you worried that you will have an accident? When my disease was very active, I wore adult diapers for a while, just in case. That helped my anxiety a lot. I carried a kit with me with some wet wipes, underwear etc. so that if the worst happened, I could clean up and go on with my day. They are pretty thin and don't show through your clothing. Hang in there.

 

[buashley]

Thanks for the insights and stories, folks. I am moreso worried that I will have to go to the bathroom for half an hour and make a smell, and then be in pain for hours. Not ideal when in public [emoji14]

I will try to chin up and not think about it. I have a beautiful life and can't let stupid disease get me down.

 

[nogutsnoglory]

Use all the tools at your disposal to help you live as Nirmal as you can. If that means taking an anti anxiety pill, taking anti diarrheah meds before, carrying pain meds, extra pair of underwear or diaper. Whatever it takes to give you qualify of life. Go out to eat, order what is safe, eat a little take the rest home so you can enjoy the company without running to the bathroom.