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songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 11/14/2008 3:19 PM (GMT -7)   
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. cry    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??

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Currently on Humira every 2wks, Pentasa, Entocort, Phenergan, Lomotil, Celexa, Lortab, Ambien, and new this week Zoloft.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 11/14/2008 10:27 PM (GMT -7)   
How long have you been on Humira? It doesn't sound like it's doing a whole lot for you yet. I've been taking it since June, and started feeling quite a bit better by mid-August. The pain and most abdominal symptoms are gone, but the fatigue hasn't really let up. If I had to work, I'd probably end up hospitalized within a week. I do a little dog sitting, but thankfully, my clients don't mind curling up on the couch with me for a nice long nap.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 11/15/2008 1:33 AM (GMT -7)   
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.

gardenlady
Veteran Member


Date Joined May 2003
Total Posts : 3103
   Posted 11/15/2008 2:42 AM (GMT -7)   
My first thought...might want to dodge the raspberry margaritas for a little while! I'm not sure I'd try that now, and I'm doing pretty darn good. Another component of the trouble you're having may be psychological -- I hesitate to use the word psychosomatic, because of the implication that what you're feeling is all in your head, when I know good and well it isn't. But the anxiety can be sort of a self-fulfilling prophecy. You go out, you're nervous that you'll have trouble like you did last time you went out, and pretty soon, your guts are up in knots because you started out nervous and only got worse, then the guts feeling bad makes you even more nervous, and you've got a nasty cycle. It took me a long time to be able to go out and do stuff after flare ups. I actually started out just going out (late at night has its benefits -- if I wound up in teh bathroom, there was rarely anyone else in there, and everyone I hung out with understood) with a few friends just to hang out and talk like I used to. After a while, I stopped being as nervous. And as I stopped being nervous at Denny's or whatever, I could branch out and head to the grocery store, or to Target or something, without spending the whole time trying to play off an uppity, painful gut by sitting/squatting and pretending to study the stuff on the bottom shelf (always a good strategy, unless you're in the meat department. when they catch you huddled up to the bottom of a cooler at 2AM, it makes the staff worry).

Part of what also helped me, I'm sort of realizing this now as I write about it, is adopting a sort of gallows humor about venturing out. I knew I was gonna get gutty, so I went into the situation trying to find ways to laugh at it instead of agonize over it. It helps that Kerry is the king of potty humor, and we naturally gravitate toward humor in bad situations.
"Let me light my lamp,"
Says the star,
"And never debate
If it will help to remove the darkness."
-- Indian poet, Rabindranath Tagore


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 11/15/2008 5:13 AM (GMT -7)   
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:)

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/15/2008 5:58 AM (GMT -7)   
I think there are several different kinds of crohns and that it varies in how it affects in ways that cancer effects people. My Mom cracks me up, because she said "I am the one with stage four cancer, but my daughter's quality of life is much worse then mine." People understand cancer, they don't understand crohns. There are types of crohns that you can carry on with daily life and there are types of crohns that seriouslly effect your life. I have been known to use the carts in walmart. I personally do not drink alcohol, because like I need something else going wrong.


Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/15/2008 7:49 AM (GMT -7)   
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.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 11/15/2008 8:22 AM (GMT -7)   
gardenlady said...
But the anxiety can be sort of a self-fulfilling prophecy. You go out, you're nervous that you'll have trouble like you did last time you went out, and pretty soon, your guts are up in knots because you started out nervous and only got worse, then the guts feeling bad makes you even more nervous, and you've got a nasty cycle. It took me a long time to be able to go out and do stuff after flare ups.


That's so true. I used to be really terrible about going shopping, especially if I didn't know where a restroom was. CVS always brought that out in me, and whenever I went to Kohl's, I knew I would need to make the long trek to the restroom in back at least once. Even though I knew it was a self-fulfilling prophecy, I still had trouble getting over it.

People often ask me when I'm going back to school, and I always feel bad when I say, "not this semester." 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. I love your attitude Fitzy! Maybe I can adopt it too.

Post Edited (spookyhurst) : 11/15/2008 8:29:49 AM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/15/2008 10:34 AM (GMT -7)   

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.

 

 


Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 11/15/2008 8:33 PM (GMT -7)   
I guess I should have told ya'll I drink nonalcholic drinks...lol

thanks for all the suggestions---sometimes I feel like a diabetic with all the foods we have to avoid. :-)

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Currently on Humira every 2wks, Pentasa, Entocort, Phenergan, Lomotil, Celexa, Lortab, Ambien, and new this week Zoloft.


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 11/15/2008 8:37 PM (GMT -7)   
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

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Currently on Humira every 2wks, Pentasa, Entocort, Phenergan, Lomotil, Celexa, Lortab, Ambien, and new this week Zoloft.


potty pooper
Regular Member


Date Joined Dec 2006
Total Posts : 375
   Posted 11/15/2008 8:52 PM (GMT -7)   

Thank you for posting this subject.  I have been struggling with these issues for many, many, years (I was diagnosed 43 years ago at the age of 19).

I totally agree with FitzyK.  The right strategies can help us do the things we want to do.  I love her list of actions and consequences.  The same answers also apply to my situations.

I have found that planning accordingly helps keep my anxiety at bay when I need to be out and about.  The fear of pooping my pants is very real and has come true on some occasions.  I found that wearing a thick sanitary napkin helps if I should "loose it" before I reach a restroom.  I always make sure I know where the nearest restroom is.  I start taking immodium early in the day which often helps control the D.  I only go to restaurants that are comfortable for me.  Lucky for me, my friends are very understanding and cooperative and I never need to stress about where we go.

I always carry tylenol, immodium,  a couple of percocets and some ativan (just in case). Sometimes just the security of having these available eases the stress and helps me relax.

I recently was put to the test:  I had planned a trip to visit my daughter and granddaughters in Fla.  Turns out that I was hospitalized overnight 4 days before I was scheduled to fly.  I was feeling better but was extremely anxious about leaving the comfort and security of my home.  To make matters more difficult, I was flying by myself for the first time (I had always gone with my husband and/or daughter.)  It would have been easier just to cancel my trip, but I decided that I wasn't going to let this DD ruin my chances of seeing my children.  Well, with my strategies taken and an aisle seat on the plane I visited for 5 days and felt wonderful.  We even ate at a mexican restaurant one night!  My daughter spoke earlier in the day with the restaurant manager and he said he'd make me whatever I want.  So I enjoyed my plain grilled chicken and rice.  The trip was just what I need to restore my faith in myself and what I am capable of accomplishing in spite of this DD.

My advice is:  try to do whatever you want to.  It may work out fine, it may not.  But you will handle it and get stronger in the process.  Find the strategies that work best for you. And...live!  Sending you hugs and best wishes.

 


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 11/15/2008 10:03 PM (GMT -7)   

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!  :-)

 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/16/2008 5:29 AM (GMT -7)   
Hi I am lucky that where I shop the bathrooms arenear the door mostly I find having a routine help and I shop a hours drive away. One thing I do is shop and eat after everything else is done. As my health is improved now I don't have as much stress on shopping days although there are a few times I still need to go to the bathroom.I follow my routine though and plan ahead of shopping what I need at each store before I get there.Keeps my mind off things and bathroom trips can be planned to fit the shopping schedule.

As for going out and dating I don't do that but routine might help in that area too. Find a place where you are comfortable with the washrooms and not overcrowed timing is a factor too .Somtimes eating on the way home as in take out which I do sometimes. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 11/16/2008 5:41 AM (GMT -7)   
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.
Single mother of a wonderful daughter, care-giver to disabled sister and aging grandmother. Diagnosed with CD during second hospital stint in Jan of '07(??)
Tried: Asacol, Pentasa, Immurane, Entcort
Currently Taking: Prenisone (intermittently), Phenegren, Hydrocodone, Benetyl, Anti-panic medication, B12, acidolophilus, omga3 and multi-vitimin


gardenlady
Veteran Member


Date Joined May 2003
Total Posts : 3103
   Posted 11/16/2008 12:27 PM (GMT -7)   
You mentioned that the drinks you are getting are non-alcoholic...maybe try a different flavor. If they're using frozen raspberries in that margarita, it could very well be tiny little seeds that are helping set you off!
"Let me light my lamp,"
Says the star,
"And never debate
If it will help to remove the darkness."
-- Indian poet, Rabindranath Tagore


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 11/16/2008 2:18 PM (GMT -7)   
~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.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)


gardenlady
Veteran Member


Date Joined May 2003
Total Posts : 3103
   Posted 11/16/2008 11:27 PM (GMT -7)   
Joie1: you aren't so weird. Kerry and I are the same way. We like to go out once in a while, there are a couple things we like to do. This year, we actually went to the movie theater TWICE! Once for Hellboy and the other time for Batman. If we did go out, it would usually be to hang out with friends for a few hours at Denny's or Shari's or something. But really, for the most part, we're totaly homebodies. We like to have people come to us, and we've got the kind of home that people like to come to. Which is cool, and would be cooler if our apartment were big enough to accomodate more than three people comfortably at one time. But...ah well.

Even though we're in our thirties now, we've always been like that. I'd always have a book or some project, Kerry with his computer, and we just kind chill out on our own.
"Let me light my lamp,"
Says the star,
"And never debate
If it will help to remove the darkness."
-- Indian poet, Rabindranath Tagore


gardenlady
Veteran Member


Date Joined May 2003
Total Posts : 3103
   Posted 11/17/2008 12:57 AM (GMT -7)   
Joie1: Email me or something! spankysancho @ gmail.com
"Let me light my lamp,"
Says the star,
"And never debate
If it will help to remove the darkness."
-- Indian poet, Rabindranath Tagore


catpower
Regular Member


Date Joined Nov 2008
Total Posts : 192
   Posted 11/17/2008 11:22 AM (GMT -7)   
I too suffer from anxiety. Sometimes, I'll feel really hungry and excited to go out to dinner w/my husband, and then we get to the restaurant and I am so anxious that I'll get sick that I actually do get sick and end up ordering just a side of mashed potatoes. I am working on this and am starting to take the attitude of "so what if I get sick when we're out?" We'll see how it goes...

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 11/17/2008 12:12 PM (GMT -7)   

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.
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