How do you live a normal active lifestyle with Crohn's??

[natgl]

This is my other forum if you want to take a look at my little story: http://www.crohnsforum.com/showthread.php?t=6434

I would like to hear your stories, how do you manage to live on an active lifestyle, go out with your friends, work, travel, when you are stuck with this debilitating disease? My biggest fear is not finding a bathroom in time. Last time I went for a 2 1/2 hour drive road trip, I ended up having to stop about 5 times on my way to go to the bathroom. I cancel out on my friends alot, I cant go to any outdoor events (as I fear using portable toilets), I cant go camping either. Basically I feel like this has taken control over my life. I used to be so full of energy and wanting to do so many things, travel the world and now I'm stuck home or doing things near home so I can run to the bathroom if need be. I'm always afraid that Ill have an embarrassing moment and wont make it in time so id rather stay closed up in my home. How do you live with a normal life? Trying to explain to your friends your condition, its not always easy because they don't know or understand what you are really going through. I often feel like I just want to be alone with this disease and live with it on my own. As bad as it sounds, Ive even lost my bf because of this. Because Im always sick, not feeling well and he thought I was boring and never up to doing anything. :ybatty: Yeahhh I feel like hitting myself on the head sometimes...frustrating!

 

[daisy_dueller]

Aw...sorry to hear you are having such a tough time...CD sure takes alot out of someone, and we've all been in the place where we feel there is no hope.

I found the best thing honestly for me has been my circle of friends, and my husband, who are SO supportive, and understand if I'm not feeling well, and don't want to do something.

I find it hard to plan around CD, as I never quite know when it's going to pop up! I guess I just try and stick to places I know have accessible washrooms, or if we go camping, I try to make sure we are near a toilet. I don't think I will ever do the backwoods camping with no washrooms...

If you are travelling long distances in a car, or plane, you could try taking some immodium to to try and get some relief for a few hours...thats what I've done in the past, and it works! I also take a little glade sprayer so that in the event I have to go in a plane, or a public washroom...it's a little less embarassing...

Hope this helps!

 

[natgl]

Thanks daisy for your response. You lucky to have friends and a husband that understand. I always find like Im a burden to everyone around. I always feel so tired, no energy (Ive been on iron supplements) for about 8 months now. For the pas month Ive been having severe diarreah to the point I just cant go anywhere by fear I wont make it in time to the bathroom. Im always so stressed going out with friends to places I dont know, road trips with friends I always want to be alone in my own car so I dont slow them down if I have to stop multiple times. Ive been very moody and irritable. I am having trouble holding a job because I miss so much for appointments or because Im so sick. I feel like its taken a tole on me this past month its just getting worst and worst. I was supposed to go see an outdoor concert yesterday, money down the drain "I didnt go". Id like to do sports roller bladding, bike...etc but I just cant , dont have the energy and cant leave the bathroom behind. I hope this is not how my life will be until I die. Im having trouble in the dating market (meeting guys) haha because of this disease. Any suggestions girls? should I tell him on the first date or let him figure it out? :ybatty:

Id like to hear your stories on how you cope with daily activities when your in a big flare.

 

[daisy_dueller]

Do your friends know you have Crohns?? Sometimes it helps them to understand if you talk to them about it, and help them to understand it's not that you don't want to go anywhere, it's that you can't go anywhere. I guess I've had times where I didn't really leave the house for much, especially the 3 months after my surgery (I had a re-section in November)...it was just too risky...Do you think asking a friend to go for a short walk with you once or twice a week would maybe alleviate some of the lonliness you are feeling? Or maybe having someone over for movie night, or tea? That way you are still in your comfort zone, and you get to see your friends.

how is your family with this? Supportive?

I think the dating thing is something that ALOT of people worry about. If it were me starting over in the dating world, i would probably be fairly open about CD...but that's just me because i'm fairly open about it with everyone that asks. I can understand how it would be awkward though for sure...nothing like talking about poo on a first date!!!

Are you on medication? Do you have a GI?

 

[natgl]

Do your friends know you have Crohns?? Sometimes it helps them to understand if you talk to them about it, and help them to understand it's not that you don't want to go anywhere, it's that you can't go anywhere. I guess I've had times where I didn't really leave the house for much, especially the 3 months after my surgery (I had a re-section in November)...it was just too risky...Do you think asking a friend to go for a short walk with you once or twice a week would maybe alleviate some of the lonliness you are feeling? Or maybe having someone over for movie night, or tea? That way you are still in your comfort zone, and you get to see your friends.

how is your family with this? Supportive?

I think the dating thing is something that ALOT of people worry about. If it were me starting over in the dating world, i would probably be fairly open about CD...but that's just me because i'm fairly open about it with everyone that asks. I can understand how it would be awkward though for sure...nothing like talking about poo on a first date!!!

Are you on medication? Do you have a GI?

Thing is... Ive been diagnosed with proctitis as of right now. Inflamation of the rectum with ulcers. The gastroenterologist says he beleives I have crohns because Ive been suffering for too long and am anemic and have been losing quite alot of blood for the past 1 1/2 year. My friends do know that Im not well, although I do feel like I put a burden on them alot. My younger sister and brother of 13 years old they always complain I never want to do anything, even if I try to explain why they dont understand and i feel so bad. My family do understand what Im going through, everytime I start a new job I have to tell my coworkers and my boss, I feel like I have too tell them because or else they will wonder why does my flu last so long. I had a bf (it lasted 5 months), it was very hard on him as he is very active and I unfortunately am not at the moment because of my condition. I tried explaining it to him but he keeps thinking this is a temporary thing when I told him its for life. I guess I scared him off, so now Im wondering how do I go about going back to dating someone with my condition? Last time I dated my now ex I remember it was awful, we went bowling and I told him I had the flu, eventually he thought it was lasting too long I had to tell him Ive been going through a hard time with my health. Still waiting for it to be 100% diagnosed. Waiting to be booked for a colonoscopy in 1-2 weeks. My 2nd one in a year. Im not on meds right now, I do have a GI but the wait is long. Usually to see him it can take up to 3 years but I was lucky I saw him took 2 weeks but I have a waiting period every time. Which slows everything down. Although he did talk to my doc (who is on maternity leave now) and my doc gave me Pentasa to try "from the GIs request" until I see him again. I tried it for 2 weeks and I didnt feel a difference, my diarreah seemed worst, I felt more depressed and no sex drive at all. I quit taking them after 2 weeks... should I have continued? So for 3 days Ive been trying to rest my intestines for a bit by eating jello, broth, saline crackers, bananas and tuna but Im feeling extremly week , have no energy right now. I get fainting spells. I was wondering, when you have a flare up... does drinking nutritional drinks such as "boost or ensure" good or make things worst?

Thanks

 

[beth]

There's no way Pentasa is going to work if you stop taking it... and just 2 weeks is way to short a time scale to see if it going to work. I'd have thought these things take much longer to get going.

Fatigue, as I'm also learning, seems to be a common affect of this disease. If you find a cure let us all know! The best I seem to manage is fighting it as far as possible, then go lay down for a bit. Rinse and repeat. Yesterday I managed to only need one half-hour doze! Much better than the 3 hours/all day dozes of other days lately.

 

[natgl]

There's no way Pentasa is going to work if you stop taking it... and just 2 weeks is way to short a time scale to see if it going to work. I'd have thought these things take much longer to get going.

Fatigue, as I'm also learning, seems to be a common affect of this disease. If you find a cure let us all know! The best I seem to manage is fighting it as far as possible, then go lay down for a bit. Rinse and repeat. Yesterday I managed to only need one half-hour doze! Much better than the 3 hours/all day dozes of other days lately.

Thing is, Im not being completely followed yet, Im being left there by myself. Fam doc on mat leave and Gastro waiting list is horrible. I so so fed up right now. The waiting list is just painful. I called the hospital this morning and asked when I should be scheduled for my 2nd colonoscopy as I was diagnosed with proctitis and Im told it wont be until probably oct/nov. Ive been left without treatment, in pain, Im feeling so week/faint from lack of energy, not eating very much (mostly liquid diet) and being anemic, losing so much blood and Im left like this for months just going down hill as days go by. Oh my!!! And if I go to the ER they will make me wait 16 hours like last time. Arrrg Im so angry right now and dont know what to do.

 

[daisy_dueller]

yikes...it's hard when you're in the limbo spot...as you seem to be right now...no real diagnosis, so they can't really treat it yet...

As far as Pentasa goes...I tried it for a while, and it made me SO MUCH WORSE. I stopped taking it about 2 months in, and told my GI I refused to take it anymore. I had been trying to control it with diet, and exercise, which I thought was doing quite well, then ended up in the OR in November...Since then, I am now on Imuran (150mg/day), and a multivitamin, iron pill, and B12...the b12 REALLY seems to help with the fatigue (which I'm afraid is something that will stay around - little naps here and there help). Do you have another Doc that you can go see while yours is on Mat leave?? GI's can be hard to see as well...they have such a long list of patients, so it's hard to just sneak you in for a quick visit.

For your own sanity, I so hope that they give you a definite diagnosis, whether it be CD, or colitis, or whatever...once they know wht it is, they can give you meds and get you back on the mend. Keep in mind that some meds take a while to start working properly (Imuran was 3 months I think).

I'm so, so sorry your friends and your brother and sister aren't being more supportive. I sometimes think that is the worst part of this for alot of people...the feeling that no one gets what you're going through. But...you have all of us here who know how you feel, and are always willing to offer advice, or just an internet (((HUG))).

 

[ErinDF]

Hi natgl...

Part of learning to live with crohns is just living with it...over time you get used to being tired and having to go to the bathroom alot. I know i can tell you almost instantly where to find a bathroom no matter where I am...you develop a sixth sense.

BUT, the but thing is that before you can live a normal active life with crohns, you HAVE to get your condition somewhat under control. Right now it sounds like you have somekind of serious, active disease. Maybe if you feel this bad and can't get in to see a doc, it is time to go and plop yourself down in the ER until you get seen (I know this isn't fun...but its got to be better then being housebound). A two week course of pentasa, followed by nothing, is not going to help. I know the Canadian system works differently then the American system, but I think you really need to try to get treatment soon. If you leave active illness to just fester, it will just get worse, not better.

As for the dating thing...I would not bring it up on the first date. It would be like talking about it at a job interview!

Plus...just remember that you WILL get better at some point. This is a crohnic illness, but most people have periods when they feel relatively normal (probably not perfect, but at least functional). Right now though, I think you should focus on three things (1) getting medical care, (2) resting, and (3) doing anything else you can manage to do. When I'm sick, I just try to make sure I get out of bed everyday, make it to work, and then go home and crawl back into bed. This is not always possible. But this is NOT how it always is. Just try to remember that...hope is very important when you have a condition like this.

Sorry if this isn't the most helpful post...but I hope you feel better soon!

 

[natgl]

yikes...it's hard when you're in the limbo spot...as you seem to be right now...no real diagnosis, so they can't really treat it yet...

As far as Pentasa goes...I tried it for a while, and it made me SO MUCH WORSE. I stopped taking it about 2 months in, and told my GI I refused to take it anymore. I had been trying to control it with diet, and exercise, which I thought was doing quite well, then ended up in the OR in November...Since then, I am now on Imuran (150mg/day), and a multivitamin, iron pill, and B12...the b12 REALLY seems to help with the fatigue (which I'm afraid is something that will stay around - little naps here and there help). Do you have another Doc that you can go see while yours is on Mat leave?? GI's can be hard to see as well...they have such a long list of patients, so it's hard to just sneak you in for a quick visit.

For your own sanity, I so hope that they give you a definite diagnosis, whether it be CD, or colitis, or whatever...once they know wht it is, they can give you meds and get you back on the mend. Keep in mind that some meds take a while to start working properly (Imuran was 3 months I think).

I'm so, so sorry your friends and your brother and sister aren't being more supportive. I sometimes think that is the worst part of this for alot of people...the feeling that no one gets what you're going through. But...you have all of us here who know how you feel, and are always willing to offer advice, or just an internet (((HUG))).

I feel so damn hopeless and I cant think straight lately I cant even make my own decisions. Im really upset right now, I just came back from the hospital, I felt like strangling the nurse, seriously. She asks "so why are you here"? I say "Well where do I start", then she sais "Well make it quick I dont have all day", then Im trying to tell her bits and pieces of whats wrong and then she tells me very rudely that their is nothing I can do, I have to wait till I see the gastroenterologist and that its normal if Im bleeding and anemic thats just the way it is and I cant put you urgent. Then I told her Im not well, I almost fainted this morning, Im losing my balance...etc I tell her "so basically, I should just go home and wait till I fall down or come by ambulance"... this is where I felt like strangling her.. she said "Hey, I dont appreciate your threats girl" Im like WTF... Grrrr... So I took my hospital card and left. No point in staying. Went to the pharmacy and got some "ensure", asked the pharmacist if it would irritate my intestines more and she said "shouldnt". I explained to her my case, that I just came back from the hospital blah blah blah and she said I should go to another hospital (I called and there is no point they have no specialist there). She said I do look very faint. I told her that Im on a waiting list, I wasnt given anything to eliviate my symptoms or the pain, so this is where I am in limbo with doctors and specialist. She said I dont want to scare you but I have seen patients needing transfusion because they lose too much blood.

Well thats my story for the day. I guess ill go drink some Ensure and by the time Ill have my appointment to see the gastro for my colonoscopy my Iron supplement prescription will be out!

 

[daisy_dueller]

That's awful!! Hospitals should NEVER be that way! I've only been to the ER once with my Crohns, and they treated it very seriuosly. Never was I made to feel I was unimportant. Honestly, if I were you, I would call the GI, and demand that you be seen sooner. Tell them exactly what's going on, exactly the aches and pains you are feeling, and tell them that you can't wait any longer. You ARE losing too much blood, and need to be seen. I would keep calling them and hounding them every day until they get you a date that is in the next couple of weeks. They might have to bump one of their regular appointments...but you really do NEED to be seen...and quick. Once they see you, and have some recent bloodwork, they may be able to fast-track you for tests and things. That's the beauty of living in Canada!! I know when I went to the ER, I got a CT scan after about 8 hours...which is actually pretty damn quick considering when they're scheduled they can take up to 6 months...so it IS possible...I would just be a pest until somebody does something. You can't keep feeling like this.

And PP is right...it will get better...it won't feel like this forever

 

[natgl]

That's awful!! Hospitals should NEVER be that way! I've only been to the ER once with my Crohns, and they treated it very seriuosly. Never was I made to feel I was unimportant. Honestly, if I were you, I would call the GI, and demand that you be seen sooner. Tell them exactly what's going on, exactly the aches and pains you are feeling, and tell them that you can't wait any longer. You ARE losing too much blood, and need to be seen. I would keep calling them and hounding them every day until they get you a date that is in the next couple of weeks. They might have to bump one of their regular appointments...but you really do NEED to be seen...and quick. Once they see you, and have some recent bloodwork, they may be able to fast-track you for tests and things. That's the beauty of living in Canada!! I know when I went to the ER, I got a CT scan after about 8 hours...which is actually pretty damn quick considering when they're scheduled they can take up to 6 months...so it IS possible...I would just be a pest until somebody does something. You can't keep feeling like this.

And PP is right...it will get better...it won't feel like this forever

Ive tried it all.. Im not able to even see my GI without calling his clinic and I must take an appointment to see him and just that can take 6 months. Its ridiculous. I guess illl just have to keep with my iron pills till I have non left then go see a doctor to get another prescription and eat lots of foods rich in iron to keep me going. Ive tried the ER alternative, calling my GI to book appointment, the wait is just too long and I cant personally talk with him. :ybatty: I live on the Quebec side in Canada so our health system sucks pretty bad

 

[bigtruck]

hi nat sorry your having such a rough time please understand it will get better,keep on at your gi's secretary till you get an appointment, failing that keep going to casualty,or er as you call it there till they take you seriously, take care and keep your chin up keep us posted how your getting on and don't let the old crohn beat you

 

[GoJohnnyGo]

Fellow Canadian here.

I was getting the run-around from the GI receptionist too. Took me 9 months to get an appointment.

I was told it was upwards of a 14 month wait. Finally I had enough, so in a firm, business-like manner I rang them up and informed them that I had no other choices but to either go out of the country for treatment, or turn to a quack. LOL, I got an appointment the next day.

Blackmail, yes. It worked though. Try crying. Show extreme anger (without being abusive of course). You deserve medical care. The means justify the end.

 

[ErinDF]

You told them that you were bleeding and they told you that was normal! And that you could wait six months to see a dr while you are bleeding! That is not okay.

I would definitely take GoJohnnyGo's advice. Seriously, especially for girls, crying can work miracles. Whenever I cry in the dr's office, I get a much more sympathetic advice.

And may I be the first to say that nurse sound like a bitch.

 

[natgl]

You told them that you were bleeding and they told you that was normal! And that you could wait six months to see a dr while you are bleeding! That is not okay.

I would definitely take GoJohnnyGo's advice. Seriously, especially for girls, crying can work miracles. Whenever I cry in the dr's office, I get a much more sympathetic advice.

And may I be the first to say that nurse sound like a bitch.

Yeah I have been bleeding for 1 year 1/2. I did have a colonoscopy last year, everything showed up Ok just a little inflammation but the gastro I saw said it wasnt anything to worry and the biopsy turned normal. Then I asked her well what do I do for my pain and my bleeding, she diagnosed me with IBS and its normal, it will eventually go away, take suppositories and thats that she gave up on me, till I went to my family doctor and told her that and she said thats not right. Got blood work, was borderline anemic, she referred me to a new gastro where the wait can be 3 years all depending on how urgent. I waited 3 months to just talk to him, then I saw a specialist who did a rectoscopy (protoscopy) and diagnosed me with proctitis (inflammation of the recum), saw the gastro 1 month after that and now Im told I can wait 4 months before I go for another colonoscopy. Thing is, when I call its not a receptionist, just some person who works at the hospital that schedules appointments for everyone, he has a pile of request and he calls them in order. Thats his job, he cant do anything... so no matter how often I call it wont change a thing, I even went directly at the hospital myself and got angry and that didnt work. now I have 2 months of iron supplements wonder what the heck do I do after that, seems Im stuck bleeding for a while , but its normal.......