this sucks

Maybe for the first time I'm not actually asking for help....but I'm just getting frustrated with the amount of time I'm going to the bathroom and the extreme urgency that sometimes comes on....I guess I'm at the angry at life and feeling sorry for myself stage right now.

I hate that when I'm out eating with people, everybody is talking about something (all of which seems so unimportant to me right now) but for me, my primary concern is do I stay for an extra few minutes in case I have to run to the bathroom, or is it safe to leave right now knowing I won't have access to a bathroom for maybe 30 minutes? Maybe I should go to the bathroom before leaving "just in case". I feel like every time I eat I'm just waiting for s**i to hit the fan, almost literally. It doesn't always happen, but it does sometimes....and it's either right away or within a few hours.

My 5 year old son knows how much I love chocolate and ice cream (and I do!)....every time he's eating a cookie/brownie or whatever, he offers me some and when I turn it down he keeps asking why (I usually just tell him that I want him to have it but he tries to insist that I take it), or sometimes I just take it and pretend to eat it, which makes him happy and we can talk about how good it tastes.

I have good friends coming to town that I haven't seen in a while...I should be excited, but I'm really nervous. Whatever "fun" thing we decide to do will not be fun for me...and I'm probably going to have to tell them (they don't know yet), I'm NOT looking forward to that at all.

I also hate not trusting my body anymore....lately there's times I run to the bathroom thinking it's an emergency and all I get is a little fart...i guess I'm happy I'm getting some farts now, maybe that's a sign I'm getting a little better? Still, I want to trust myself to be able to just let those little ones rip sometimes without having to run to the toilet.

And...holy crap do I miss coffee, and I'm so scared to even try it right now and possibly reverse/hamper any progress I'm making right now (I'm afraid to jinx it, but I DO feel like I'm making SOME progress, slowly).

I remember when I was younger and I'd get really upset at something, my mom would tell me things like "at least you have your health to be thankful for" and that meant absolutely nothing to me at the time...I took it for granted I guess. I wish I could just have my health now...

It scares the crap out of me that I could get worse...I may get better for a while, but it's likely that I will get worse later...and I will always have to worry about that.

Oh well, that's it, I'm done with this long rant, thanks. :)

Yeah....it does suck, and you're going through a pretty normal phase of having UC. It does affect our very being/existence...and it can take a while to get back on track for many of us.

If you were just diagnosed a year ago, you're still on the learning path.

It's so scary when we don't know what our bodies/disease is going to do, We start with medications, changes, adjustments in expectations and disappointments, etc.

You can't change what you had, but it doesn't mean you won't have it again. Regarding taking things for granted...try not to think of it that way, for it's not all or nothing.

Are your friends coming to stay with you? or will you be meeting them to do stuff? You could prepare them for the possibilities and be straight with them just in case. If all is good, that's a huge bonus for you all.

Remember...you're in the learning phase of what to expect.
Set up a few more options for yourself so that you won't feel stuck. That might save room for excitement to be with your friends. Tell they you don't know what's going to happen...that's the truth. Tell them they can ask questions if they like...at least you don't have them walking on eggshells in fear of what or what not to say.

Hang tough...this will be a huge leap for you. If this is something you would normally do socially...best find out what you're able to do.

Continue on this thread with venting...questions, etc...it's best to get it all out than keep it in.

q

It is always in the back of your mind, every move you make.
Yeah it sucks. Try to focus on what you can do, not what you cannot.

You do not have to tell them! None of my friends know. Nobody really pays attention when you use the restroom. Or just say your tummy is acting up tonight, whatever. That happens to everybody. Pass on the alcohol. I would rather not have anyone thinking about what goes on in my bathroom, it's undignified.

I hope you find remission soon!!

Honestly I'd be honest when my friends came around. What's with finding all the excuses. Just tell them the truth. It's not like you can change it, right?

I hope you get better.

Thanks guys. I hate for anybody to have this disease, but in a weird way it does make me feel better that people can at least understand what I'm going through....the closest thing in "real life" to me is my wife who SAYS she understands, but unless you go through you just can't possibly get it 100%. She's very supportive though.

My friends that are coming are very close, I've known them all my life. They're not staying with me, but I think I will have to tell them, and I'm probably better off doing that anyway. They know me too well, they'll see something wrong. They'll for sure ask how I lost so much weight...it wasn't by hitting the gym. I'm back to my college weight. :)

And you're right Quincy...this probably is a big step for me. Who knows, maybe I'll even enjoy myself. Though I'm worried I'll be a little disconnected since I'll inevitably will be worried about getting that "urgency attack", that always comes right when you feel like everything is great, and 10 seconds later you turn into the hulk and just smash your way towards the bathroom before it's too late, god help anybody who gets in the way!

Anyway thanks for reading and the responses, it does make me feel better...I hope we all get our break sooner rather than later!

I can sympathize with being offered cookies and not being able to eat them. I told my son I was trying a new diet to try to get better and so I wouldn't be eating anything with sugar or bread. He says "does this mean no more homemade chocolate chip cookies?" I about cried. I love baking cookies. Then when I get him a Happy Meal he asks "Can you have just one of my fries?" or "How about a little piece of my hamburger without the bun?" It's nice he's so thoughtful but sometimes I just wish I could order a #1 or #2 at McD's and eat my lunch without planning and scrounging around for something.

I feel your pain! I am also newly diagnosed, and it has been very tough for me too. It's hard not to get depressed and angry. People really don't understand because how can you when you don't have UC?

I was hospitalized last year, and ever since have been terrified of it happening again, to be honest. It's just a tough disease to have 😢. I hope you feel better soon, and I totally understand needing to rant. It really is so hard to have UC. But, it's good that there are people out there who do understand. And that's good your wife is supportive, that is really important in something like this. 💗

Yeah, this disease can be a real mind-f0ck and I think that is the hardest thing to overcome. Just don't let uc become so overwhelming in your mind that it robs you of everything else that you have. Like a chance to have a great time with your buddies that you haven't seen in a while; go out and have fun and perhaps you'll forget you have uc for a while. Just bring an emergency kit (change of underwear, some wipes and whatever in a ziplock bag), just in case things turn for the worst. It is great for your piece-of-mind and you can easily conceal it baggy clothes, in a backpack, purse or whatever.

And I must concur; eat the frigg'n cookie; sames goes with the coffee. Sure refrain from eating the whole sleeve or package of cookies in one sitting (hard to resist sometimes I know). Everything is fine in moderation. There is a lot of superstition, that if I break one golden rule than big bad uc will come back to haunt me with a vengeance; a lot of which (in my humble opinion) is nonsense. We're no different than a superstitious baseball player who has to touch his hat, tighten his left glove, look right, and then touch his nose before swinging or else he'll ruin his batting average and miss. Uc goes through periods of calm and activity and even the most devout among us get stung; in the end I think it is just dumb luck.

Maybe its something that you are eating?? I love mushrooms but if I eat them I'm running to the bathroom. When I was diagnosed and friends and family wanted to go out I explained to them that I had a limited diet. So we would go to restaurants that we all could eat at. Or if there was a cookout I would talk to the people before hand so there was a couple things I could eat or bring my own food. And you could have a spastic colon. Elavil and Bentyl can help with that. And probiotics can help too. So you may want to talk to your doctor about having to run to the bathroom all the time.

I relate to everything you said. I was thinking this morning how nice it would be to go through the day without thinking or worrying about poop! Hope you find relief soon.

Sorry to hear you are feeling rubbish at the moment.

I don't know if you are religious but even if you aren't, it helps me to count my blessings every day. We have a challenging and distressing time, especially during a flare up but when you go to the flare up clinics at hospital, there are patients with really dreadful illnesses and young children too who will be more frightened than we are.

If I am worried about attacks when I am out, it helps to minimise food intake before, check out the toilet location etc and then eat really light foods. I know it's not much fun at times but be strong and in time they will come up with a cure for IBD. Also maybe be choosy about who you are socialising with when it is making you feel vulnerable so that you are less stressed and embarrassed. I've been up most of the night so far with a flare that is taking its time to respond to medication and really wish I didn't have the condition either.

Not eating foods like ice cream and cookies isn't such a bad thing when you think of all the calories and most people who don't know anything will just think you are being healthy. You are blessed to have a little boy, maybe plan something nice with him every time you feel down x