Am I a fraud?

[JenniferH]

Does anyone else sometimes feel like a fraud? I have Crohn's disease (that's a fact) but have been feeling ok the past few months so I'm sure everyone around me forgets. Not me. I ALWAYS know I have Crohns.
Now over the last week I have been feeling exhausted. I am suffering from severe bloating and constipation and having some quite bad pain. BUT I look fine. I'm still working, I'm still running the house, still cooking and looking after my 3 kids on my own all week while husband works away, still helping to care for mother in law, etc etc etc. How do I go to the doctor and tell him I really don't feel well and it's getting me down when I'm still doing all of the above?? Surely I couldn't keep going if I was REALLY sick?!
Sometims I really do feel like a fraud. Like maybe I'm not really that ill because surely if I was I couldn't keep going. It's 'easy' when I have D & V because I HAVE to stop what I'm doing while I sit on the toilet or hang my head over a bowl (or if I'm REally lucky I do both at the same time!)
Sorry to moan but feeling very sad, very fed up and just a tad frightened
I just don't know if I should bother my gp or go straight to my gastro doc. I really can't afford to be ill again:yfrown:

 

[Rebecca85]

I don't have any answers for you, but you do have my sympathy! Exhaustion is a real part of this illness. I presume that you have an IBD nurse since you are in the UK? If so I would speak to them, they can order tests or treatments through your GP, and if they decide you need to see your gastro they can get you in quicker.

It may take a while for the doctors to listen to you, so be prepared to keep going back if things don't improve. And in the meantime feel free to vent on here!

 

[Misty-Eyed]

I have one answer for you. You're not a fraud! I think when you've suffered from crohn's for SO many years, it's easy to lose touch with what it 'normal'. I know for sure that I used to feel like I was lazy. I didn't feel like doing anything and things were an effort. Built up over many years made me think that it wasn't the crohn's, I'm just lazy. I'm sure it didn't help that I was diagnosed so young and was really ill for quite a few years because I didn't get to learn who I was without the crohn's in my life. But anyway, the past couple of years I actually felt great and I could forget about the crohn's. I could be bothered to do stuff!! I could be away from the house and not need to go to the toilet for an entire day! I could go to work for a whole working day and then go straight out without needing to go home first. Then it hit me how ill I was before. I wasn't lazy. I was ill!

When I'm well I do forget I have crohn's. If you can't forget you have crohn's and you are having symptoms, which you are, then it's not normal and you're not well. You getting on with things just shows you are a strong person and have adjusted to life as best you can. I'm worried though that if you don't go to the doc now and get it sorted that you may get worse and then you won't be able to cope anymore. You know your body better than anyone. As it turns out I still had very active crohn's even though I felt so well. Tell the doc that you don't feel well and you want to do something about it to prevent it getting worse. If they don't take you seriously then they aren't doing their job properly.

 

[stratford]

Are you a fraud - NO.

Your signature says everything of your history with battling Crohn's.
ONLY a Crohn's patient fully understands dealing with daily life.
I've never met a Dr,IBD nurse,family member etc who Really understands.

Nobody on here will think you are a fraud

Best Wishes

 

[David]

Here is the multiple choice answer to your question:

A. No
B. Absolutely not
C. Hell no
D. &$^% no
E. All of the above.

Choose one.

 

[Carrie630]

I agree, you're not a fraud! I understand feeling like one though. On days when I'm feeling ok and walking at an almost normal speed I feel like a fraud. I feel like I shouldn't be parking in the handicap parking, etc. I have to remind myself that just because I'm walking ok now doesn't mean I'll be walking ok when I leave work. Same thing with bathroom issues. Just because I don't have a problem right at this minute, I might need to squeeze it and rush to the bathroom 5 minutes from now.

Just remind yourself, that just because it's not immediately obvious by looking at you, it doesn't mean you are free of health issues. Just because you feel like a million bucks one day doesn't mean you will the next. And do not let anyone give you crap about it. People need to be put in their place when they say things that are inappropriate. A random individual questioning your evaluation of your health is highly inappropriate.

 

[nobigjawnz]

In my experience , which is only 2 years now. the nature of the beast is too allow us to feel like we are normal. Then, for me anyways, the one second when i totally forget that i have crohn's , baam. Im in the hospital for a week on a bowl rest.( no food for a week ) it Sucks. I havent had a "flare-up" for almost 6 months now, i am eating whatever i want. Still cant drink alcohol though. But i am constantly fatigued tho. So hang in there definatly not a fraud. Goodluck.

Also wanted to Add: Are you on Maintenence Meds?? If so, "forget" to take them for a day and see how normal you are. If I forget even one dose of mine I start feeling it Immediately.

 

[Jessi]

Jennifer, you're no fraud... you're a superwoman! Throw these pains and problems on a "normal" person, and they will fall apart! You are an IBDoer! I'm proud of you. :hug:

Definitely bug your nurse, though. There is no need to continue to hurt just because you know you can handle your chores still.

 

[JenniferH]

Thanks everyone. It def does help to vent here. Everyone seems to know just the right things to say.

I've rung the gastro team and am waiting for them to call back which will probably be tomorrow. Hopefully I'll have 'been' by the morning otherwise I'll go to work looking (and feeling) like I've swallowed a beach ball!!

 

[Jessi]

Good luck.

 

[LindaS]

Jennifer, I absolutely, positively know you are not a fraud. I've been in a similar situation, right before I needed my second surgery. My husband worked nights, so I had to work full time, take care of the house and take care of my son. I started feeling not quite right, but I ignored it because I thought I didn't have time to be sick. Within a 3 month period I had 4 bowel obstructions and needed surgery. And at that point, my husband learned to appreciate all I did (not that he didn't already).

If you have an IBD nurse, contact her. Or your GP or GI. Don't ignore the symptoms, because they can quickly spiral out of control if you are not careful.

 

[Carolyn P]

Hi Jennifer

Glad to see you've got in touch with the proffessionals, hope they can sort you out soon as. Don't you even think your a fraud, you are coping because you have no alternative but there will come the time when you will have to allow yourself time to get better, whatever treatment path you need to go down. I myself have had 4 operations over the years for crohns. I often reflect about things that have happened and how I coped, I always do and so will you. It's amazing the strength us crohnies have when we need it.
Take care of yourself
Carolyn P x

 

[JenniferH]

AAaagghh!! I get so frustrated with this disease....and with my doctors....and with everyone around me!!
Got a call back from conultant today (5 days later) and they will 'try' to see me in the next few weeks. Great. So in the meantime I sit here uncomfortable, bloated, exhausted, and in pain. And to top it all off I was talking to a friend of a friend at the weekend and for some reason my Crohns came up in conversation. Then this person actually looked me up and down and asked me if I was sure I had Crohns because she had a cousin with Crohns who was much thinner than and looked more unwell than me!!!! To which I responded that she was more than welcome to follow me into the toilet and I'd show her proof!!
On another note. What sort of pain meds are people on? I never know quite what to take. Nothing seems to help enough and I know some drugs will make constipation worse. When I'm in hospital it's morphine or oramorph, which obviously help, but what should I take at home? I can't go on like this!

 

[Jessi]

I am so sorry that your doc is flaky. I'm blessed to have a GI that gets me in really fast if I need to be seen. I only hope the same for you. :hug: Tylenol-based drugs are the only pain killers that are safe. Stay away from NSAIDS, like Aspirin, Ibuprofen, and Naproxen.

 

[dragonfly]

that is the worst when someone compares you to someone they know with crohns!! dont these non-crohns people understand that the disease effects everyone in very different ways & stages???? i'd be calling the doctor back and telling them no i will not wait a few more weeks, my doctor used to do that to me before and when i'd finally get in to see her (weeks later) i had by then felt better or the "issue" itself had passed and she'd look at me like i just wasted what 5 mintues of her time! i have crohns & HS and when im not feeling well with the HS i take vicodin or tramadol to get me through it...i am no longer able to hold a job but i have 2 kids that keep me on my toes and my husband travels for work. i told my doctor in the nicest way i could that while i do appreciate everything she does for me that she herself does not have the disease (both) that i do and treating them and actually living with them are 2 complelty different things...i would glady trade her places for 1 week so she could actually "feel" what i tell her, since then i have no problem getting pain meds when i need them even over the phone now i dont have to make the 2 hour drive one way just to get a pain pill!
i always put everyone before myself and lately thats been catching up with me, ive started remicade and though i cant complain too much its very hard for me to keep going while i so badly just want to take a break!! my HS has been acting up every few weeks, not sure if this is from the remicade or what but it HURTS!! my oldest is in school and she brings home every bug that goes around there and we all just kinda pass it back & forth but being on this med i'm the only one who cant seem to shake it off!!

 

[muppet]

I don't really have any advice for you, but I often feel the same way. I keep on doing all of the things I do, maybe a little slower, and maybe I procrastinate a little more, but there's never any point where I just collapse and can't go on. Not often, anyway.

And I DO feel like I'm being a little melodramatic when I try to verbalize how sick I really am, despite the fact that I'm still doing more or less all of the things that I always do when I'm not sick.

 

[JenniferH]

oh dragonfly, that sounds awful! I must admit I get a little nervous as winter comes because of all the bugs that go around. I run a preschool so you can imagine the sort of germs I'm surrounded by!

I def need to get more assertive with my doctors. I think I have the mentality that my dr is the professional so he knows best....but actually I'M the one with the disease so only I can tell him what it's like. I'm very similar to you muppet (!). I hate feeling melodramatic and don't want people to start staying away from me because all I do is moan about this disease so I usually just carry on with life, perhaps just a bit slower.

Felt quite proud of myself yesterday. I decided to make a list of ALL the things I need to do this week. Both for my benefit, but also for my husband and kids to see how much has to get done. There are 18 things on my list and today I managed to cross off 4!! I have a real sense of achievement. I DID have to lie down and have a half hour nap this afternoon, but at least I accomplished something.