Shed some light--share your story/stories

Okay so Ive been wondering this for sometime so I figured I'd ask some of you all.

For example, I went out yesterday with my husband. I used to go out all the time, now rarely for these reasons. Went to chilis, had a little appetizer and a raspberry margarita. Before I knew it, I was overwhelmed with exhaustion and the urge to go.    Said can we get our check and go get a redbull. I didnt want to ruin our night out, since we had a sitter. So we decide to go to Kmart to christmas shop and I ended up in the bathroom...urge to go 3 times---no results...UGH!  I get really tired and almost feel like I needed a wheelchair, from the pressure in my abdomen and pelvic area.

Then I sit for awhile, have to end shopping of course, and we ride around. Finally decide to try a nother place to grab actual dinner or maybe another quick drink. I go and feel better but still have to hit up bathroom several times.

Between the exhaustion, the pain, that bloated uncomfortable feeling....I dread going anywhere. It happens everytime! Anyone else avoid their activities---I feel like Im in denial about this chronic illness but tired of being a victim.

So many people say I know someone with Crohns and they work and they are fine...wth??

spookyhurst,
Don't let other people make you feel guilty for being sick. It is amazing how many times we all hear those statements. "I know somebody with crohn's and they are just fine" "I know someone with crohn's and they only need diet and exercise to control it, not medicine" Sometime when I hear these statements or others similar, I just want to hit the pause button and go up and slap the person.( I know, wishful thinking) It is amazing how many people say that they know someone else with crohn's, yet I have actually only met a few in person myself. Not one of them fit the criteria of statements and all feel pretty much the same as me about the these statements.
It is so easy to let others bring us down. For so long, I went through the phase that I should be working, I am only in my 20's and I should be able to tough this out. I still have a hard time not caring what others say and think about me, but I have reached a point that I realize that there are just some things that I cannot control. Yes, it hurts when I hear that some ones thinks that I am lazy, or when I hear that they are telling people that I am only doing this for the pain medication. People have said that I am faking all of this because Crohn's disease is supposed to make you skinny and I am not. I used force myself to go to the gym every day and lift weights with my friends, but stopped when I heard that some of them were talking behind my back because I was on disability but was still working out. It really hurt my feelings because they did not see my when I got home after working out each time and being in severe pain. They did not know that I was doing this so that I could go back to work and that arthritis has wrecked all of my joints. Eventually, I ended up having to have surgery on both of my rotator cuffs. (both within 6 months) I never went back and worked out with them, except for with one friend that supported me and my wife. I now can not work out at all due to having to stop remicade and am hoping that I can return now that I am on cimzia.
People have now idea what we go through. The best thing that we can do, is educated them in a way that they are not offended or grossed out. Sometimes, I read hear about people sharing all of the gory details of our disease with people, just to prove a point. I just don't agree with this philosophy, due to the fact that it is shoving it in their face and people can get standoffish or shocked to the point that they do not want to be around you. I have found that if I tell them in a way that tells them just the necessary info, that they will usually respond in a good way. In fact, this method usually leads to them asking some good questions that help them understand why I do the things that I do and help whenever I get sick in the future.
Please, do not tell them in a whining fashion. Most people get stressed when someone is whining or looking for sympathy and they do not know how to react. Just be straightforward with them if you are tired, sick, or need to go home. They will understand and not think that you are a hypochondriac.
I don't mean to sound preachy, but I noticed that you mentioned that you are going out for drinks. Alcohol is not a good thing for you crohns's and especially with the medications that you are on. Zoloft, loritab, and ambien are all supposed to be used without alochol. Ambien is the one that can really cause problems if you mix it with alcohol. Even though you may not take them together intentionally, ambiens does have a half life that can cause some severe side effects. I do not drink, but I used to take ambien. Once, I had a cold and took nyquill with the ambien. There are now 2 days of my life that I do not remember, but according to my family and wife, I was quite the funny person. I did and said some pretty embarrassing things. I also found out that this combo could have been deadly. Please be careful and do not drink while using these medications.
Stay strong and do not let people hurt you. There are so many things that you can not control, but you have complete control over your attitude. Attitude is %10 percent of what happens to you and 90% of how you react to it. Step up and show that you may be sick, but you are not dead. I am on Social Security Disability and I am not ashamed of it. I paid into it and I got sick. If I could work, I would. If someone has a problem with me and my life, then that is their problem. If I am mad and depressed about what they say, I will still be sick. If I am strong and defiant to these people that try to hurt me, I am still sick. It is my choice of which I will be. I choose to be strong.

Songstress--Do you keep a food journal? Do you think it was what you ate during the day or what you ate while you were out?

You may need to find foods that don't bother you and only eat them the day you plan a date with your hubby...that way you can still feel like a couple and date!! I had to totally change my eating habits to be able to get out of the house. Not perfect, but it helps to get out and mix with the rest of the world!! I like gardenlady's suggestion of only going when the stores are less crowded...to pressure if you do have to use the bathroom:)

Hey Song - I am one of those "active" crohnies but I think I am only more active because I have mild crohns disease. Like someone else mentioned I know that certain foods and alcohol trigger me a lot as well as anxiety. I think if it was my first time out in a long time and I drank a margarita and ate some Chili's appitizers I would be cramped and sick too! Oh and by the way, I have been sick in the Kmart bathroom after going to Applebees so I know where you are coming from. I would suggest that you have your next date not involve food. Maybe just go to a movie (no snacks or anything) - a mid day matinee so it is far enough after lunch and not too close to dinner. Next if you do go out to eat, try to identify "safe" foods. There aren't many at chilis b/c they like to make things spicier there. Have water or gingerale and a chicken and rice dish, or soup, or pasta without dairy sauce ... whatever you can eat at home and feel ok. Next, I would lose the mindset that you are going to go out and feel good. It sets expectations and makes you disappointed. Instead I adopt the mentality "yeah we can try that." And since anyone I go out with knows about my crohns they are ok with me making lots of bathroom stops or bailing all together.

I also get very tired very quick shopping. Recently I had drank a lot of wine at home over the weekend and was feeling kind of icky on Sunday but I had shopping plans. When I got to my friends apt I told her I wasn't feeling well and wanted to lay down on her couch until the feeling passed. I ended up having to kick her out of the bathroom while she was brushing her teeth to have explosive D. I laid back down for a bit and then felt much better and we went. But we went to stores I knew had bathrooms. When we eventually went to lunch I got ginger ale and squash ravioli and took a lactose pill to be extra safe.

I am by no means saying this is your fault but it is hard to get out there when you have been staying in. For big things like court days or job interviews I sometimes take a little xanax. I find it helps a lot.

We may all be different with the severity of our disease but we all have one thing in common. When we got to go we gotta go and that can put us in some embarassing situations. Don't let this one incident become a bad memory. "Get back on the horse' and try again soon. Take your child if you don't have a sitter but make sure hubby or whoever you are with knows he/she may be past off any second for you to bolt.

Finally when my crohns was pretty bad I never wanted to leave the house. I ended up creating a chart with four columns (or a paper foled into squares) - one was times I went out, not scared, feeling great and nothing bad happened. (very small list). One was times I went out, scared, something bad happened, and it was bad enough I wish I hadn't gone. (Also very small list). Then there was a list of times I went out and was scared something bad would happen and it didn't at all and I had a great time and felt so accomplished. (Pretty long list). Then there was the times I went out feeling sick, did get sick, but found a bathroom no problem and was able to go on with my day. Basically was scared to get sick, got sick, but it was no big deal. (Also very long list). On the back i made a list of things I would like to be able to do. When I am asked to do something and am scared I look at my list and see that my head is just remember those very few very bad times when I have a huge long list of successes. That keeps me going. And I love to add to the list and check off things I have done.

With the help of a coworker I also developed the "what is the worst that could happen mentality." I was so afraid of pooping my pants. Well he made me realize that if I did, the world wouldn't come to a screeching halt, it wouldn't be a breaking story on CNN, I would be very embarassed, people would feel sorry for me, depending on the situation I might get laughed at for awhile, but the sun would rise the next day, I would have fresh clothes and a shower, and life would just go on. He had over come bad PTSD from some Army injuries. And he told me that I had two choices " I could sit at home and feel sorry for myself" or "I could get out there and face the world and let the bad stuff happen, shake it off, and move on." With a lot of work I adopted the latter. I am still afraid of pooping my pants in public. But I am not going to let it hold me back. I am also VERY open with my crohns (but not a in your face way) so I always feel comfortable saying I need to use the bathroom now and being understood. And I find that everyone does know someone with crohns and in my case usually someone with it worse than mine.

First off many of us suffer with "anticipatory anxiety".  What is that, the constant fear of what if, what if.  I have had this dd for a very long time and just discovered that I had this about a year ago.  And thru therapy and the help of the occasional Xanax, I have been able to work thru it and identify when its coming on and to stop it in its tracks.  First off, I think for the majority of us, alchohol is a big NO-NO.  It just sends me straight to bathroom.  Also, like others have mentioned, I really stick to my safe foods when I am out and about.  Nothing like emergency bathroom visits to put a crimp in your plans.  If it is an activity that I feel a little anxious about I will take my Xanax and that keeps me less stressed.

As for the fatigue that seems to be part and parcel with Crohns.  Between the disease, medications etc that can make things harder on us.  Maybe plan on taking a nap in the afternoon before evening plans.  I try to keep most of my activities before 8 pm.  I know, I know, big party animal, huh???

I work fulltime, 40 hours a week.  But I also am in remission right now, but also have a milder case of Crohns.  Doesn't mean I feel perfect all the time, because I don't.  I have to get up a little earlier, because although I am in remission, my mornings are still very rough everyday, somedays worse than others.  But once my meds kick in I am good to go. 

In order to have any kind of life, I have to recognize that I do have a chronic health condition, and I have make sure that I stay on my safe foods and not eat or drink things that may upset the apple cart.  I have work with what I have so to speak.  Hope that helps.

nanners...I agree I think our nerves make the disease worse and we have that anticpating behavior-hard not to!! thats why Im trying theZoloft, my anxiety has gotten so bad I overanalyze everything that people close to me say, I freak out over everything. I almost feel like the meds they give us have made me a loon. But Im determined to be sane and not let this disease keep me down. My grandmother had Crohns and passed due to an obstruction, but she sure lived life and didnt let losing all her bowel keep her from it. lool

Hi Songstress,

about a year ago, when I first saw my Internist, she believed I had Crohn's and that it was a mild case.  As time has gone on, I have had good and bad days, but overall, I feel almost like it is gradually getting worse.  Every time I flare it takes a higher and longer dose of prednisone to get things under control and manageable.  Then shortly after I get off the pred, something flares back up and I end up back on it.

So far, I have been able to work but it is not always easy.  I am very fortunate, in that I have a desk job and the restroom  is VERY close to my desk. 

This flare I am in now has been rough.  The arthritis this time and the fatigue are about doing me in.  It has been very hard to be at work, even though I sit almost all day long.  I hurt so bad and I am so tired, all I want to do is go home and lay down.  On the upside, I am hoping to start Remicade soon.  I have tried MTX and Imuran and I am just not getting anywhere so I am hoping the Remicade will work!

It is hard to be out in public.  If I am not exhausted from being out then I am scrambling to find a restroom...seems like it is often one or the other. 

My anxiety tends to get the best of me...I have always stuggled with it and with Crohn's, it seems to get worse.  I often think and worry about the future and wonder what will happen.  Doesn't do me one bit of good, but I still do it.

I hope you start feeling better soon!  And please don't let anyone make you feel bad for not feeling good.  I think many do not understand this disease and think we can just make it go away by what we eat or whatever, and that just isn't the case.  If it was, we wouldn't have it! 

Chiming in.

First, alcohol is a BIG NO-NO, I test this every now and then thinking, one drink won't hurt. Well Friday night I had one (1) drink and started vomiting an hour later with D and pain.

Pain, D and nausea are the constant for me these days, and now my guts are all swollen up as well. I am on and off prednisone. I do not know how I am working, but I do what I have to do to support my child.

Stress (as I always say) is the enemy. Stress makes my symptoms magnified from mild to full-force flare.

I have a friend who I found out has crohn's. He had surgery five years ago and has had no other symptoms since. He gives me a hard time, telling me I need to have surgery. That's a tough one for me, because I know from being here that he is one of the lucky few that surgery has put and kept him in remission. I don't want to be cut open knowing that I have an 80% chance that it will return and result in more surgeries. But the daily runs to the bathroom (no pun intended) the D, Vomiting, Nausea and all the pain are getting more and more difficult to live with.

Word's out at my new job about my crohn's. I told my manager and she was real nice about it. Now my boss and the entire IT department in other states know... that stresses me a bit.

~sighs~ I'm still in the first year. I spend so much time at home it could be sad. I go grocery shopping. I like it and usually when I'm grocery shopping I'm hungry LOL. I know they say "don't go food shopping when you're hungry" but it helps me know I won't be going to the bathroom. I've also found that I'm really digging the Ensure drinks. I suppose one could say I'm still in a flare since I have to eat but don't feel like eating but its comforting to drink something and feel full and not fear it. If I take the Pentasa without enough food in my belly I've noticed that it can cause more issues with D. So I try to eat some yogurt. I don't do much else when I'm not working. I've been sleeping a lot and just tired but when it was summer, I enjoyed going for small walks around the block. I made a picnic for me and the hubby and we went to the park. We only got to enjoy the food before it hit. Then it was a quick walk home.

I don't drink. I have issues with my liver. It tends to have elevated enzymes so I may drink, once in every few years. Plus, I've never enjoyed the D I got before I knew of the Crohns, from the drinking. Never seemed worth it for the small headache and the D that came with it.

Go enjoy movies with no food, take some water or other drink to it. Go visit a bookstore (they always seem close to the movie theaters), and chat it up at the cafe. Avoid the drinks though 'cause of the caffeine. I would still go eat at the END of the date or the fun. I HAVE set up hubby-wife dates so that we eat at the end of the movie/bookstore. Since neither of us is a big drinker, we don't go to bars. If I could get him to dance, we'd go to dance clubs...we're relatively young but we also don't want to deal with people trying to pick us up. We like to go to this one bar for the pool tables. We're still in our twenties but we're just not like other people. After work, we want to veg to tv, internet, and sleep. On our days off, we used to go to parks and walk or swing. Haven't lately 'cause I'm so blasted tired but when I get some energy, we'll start making our holiday shopping trips. There's a life with the disease I suppose. You just got to figure that you can't hurt all the time even if it feels like it.

Joie1: Email me or something! spankysancho @ gmail.com

YES.  This is a big issue for me right now.  I'm on short term disability, about to transition to long term.  I look around at what I do all day (not much), and think "why are you so lazy?  You aren't that sick!"  And then I spend a couple of hours doing chores or running errands in an afternoon and feel like someone beat me with a stick.

I've got an appointment with a new GI next month, and I'm hoping that she'll help me get back to a more normal life.  My current doctors acknowledge that the meds aren't doing it for me, but they won't change them, either.  Their idea is to put me on a low dose of pred indefinitely.  I told them I wouldn't do it.  It's not a maintenance med, and it's too hard to get off again.  But I tell you what, on my lousier days it's really tempting.  I've got a bottle left over from the last time I was on it.  My joints hurt, I'm exhausted, my anus and skin tags are sore and inflamed, and I had a rather spectacular bathroom event this morning.  The pred would fix me.  At least for a little while.  Until it makes me worse.  It's a bad idea, but it would feel good while it lasted.  Gee, I don't sound like a junky or anything, do I?

spookyhurst said...

It's kind of hard not to feel like maybe my fatigue is just laziness. I always feel guilty about laying down for a nap, or when a day passes and I haven't got anything done.