What's Worse?

In talking to a lot of other Crohn's patients around the forum and about, and in considering my own experiences - I became interested in the commonality:

It seems that many describe their feelings at the time of diagnosis as 'relieved'. I would as well for the same reasons; people now know I am truly ill, it's not an eating disorder, I really CAN'T live up to your expectations, that's why I'm absent so much, etc. It was disappointing news but it got me thinking...

What was worse for you guys? The time period you spent before diagnosis in anxiety, wondering what's wrong, having no excuse to the impatience of your friends and family, feeling off your axis and wondering why, going through all the same embarassing symptoms without an excuse?

Or do you feel worse now that you can identify with a disease, that it has a name, that people may judge you for this, and now your countertop can rival a pharmacy?

What's worse?

I felt worse before dx, I wasn't anxious, cos of symptoms
I WAS BLOODY FURIOUS!!!
This is because quack after quack kept telling me I was depressed or had IBS.
I was so relieved when I found a gastro man who believed me
And I wanted to go to the old GP and shove my dx up his arse!
But unfortunately, he was dead anyway!
And nowadays, cos I've got a name for my symptoms, I'm chuffed, not embarrassed, and I don't give a flying frig if anyone judges me, let them walk a million miles in my shoes first, before they open their big fat gobs!

It sucks having an incurable disease. However, it was worse suffering through the symptoms and not knowing what was wrong. I definitely felt a relief once I was diagnosed.

I agree with you both! Living with restrictions you know are there but you can't validate to the world SUCKS. Diagnosis at least gets people on your side.

i hated it,bein told i had an incurable disease at 20... n i have to give up the 2 things i really liked doin...eating and drinking!!

I'm still undiagnosed and I dream about the day that I am told the name of my illness. At this point I don't care what it is, even if it's really scary, I just want a name for it already. From my prerogative, even though I haven't gotten a diagnosis yet, I would have to say that being undiagnosed is worse.

My illness was so short (3 or 4 weeks) my initial thoughts were relief, thank god they know what's wrong and could treat it, but that soon turned to disappointment? I guess that's the closest term, why couldn't it have been appendicitis or gallbladder troubles after all? something that could be fixed. I mean I was so jealous of the girl opposite me on the ward, she had her gallbladder out the day I got my CT results, she was in surgery and they came and moved me with no warning. Visiting hours the next day I went to see her. She had already gone home.

I'm still waiting to be diagnosed and nothing can be worse in my view, the day I am will be the happiest of my life and celebrated every year just like a b.day!

Crohns hit me suddely when i was seriously stressed. Was so ill i was admitted as an emergency. My family and friends were told i was having tests for bowel cancer amongst other things. Was diagnosed on the operating table. My family was delighted to hear it was "just crohns" which perplexed me very much at the time, but now i accept that there are much worse situations i could be in. Like "no longer alive". Ho hum!!

I think it was worse before my dx, everyone always thought it was all in my head, or I was making out to be worse than it really was.....I should be able to take some immodium or previcid....atleast now I know whats wrong and I can work on treating the actual symptoms, and not just bein made to feel like crap because something was always wrong with me....and for no apparent reason~

before was worst, definitely.

i felt like the lonliest girl in the world, even though i was surrounded by family. everyone believed my gp when he diagnosed spastic colon, umbilical colic, active imagination, and finally, anorexia. all i knew was - it hurt when i ate, so i stopped eating.

i was pale, my lips were tinged with blue, i was tired, weepy, in pain, having night sweats - and he convinced my family it was in my mind.

this went on for years.

there was no internet forum to come to, no-one to compare symptoms with.

my feeling of relief and victory actually came just before diagnosis.. eventually i got taken to a gastro specialist.. he simply put a stethoscope on my stomach, listened, then said "you've got an obstruction". i knew then i was on my way to 'it' having a name, and hopefully a cure..

living with Crohn's has not been easy - it's stolen a lot from me, but i've never felt alone with it since the day of diagnosis... and certainly not since joining this forum. when you've got people who understand - it's so much easier to face & accept.

It seems like Crohn's patients (though not the only ones, I'm sure) get treated like finicky crybabies and first class overreactors!

For me, the undiagnosed part of my journey was in early teen years - and so of course I got: "you're so lazy and antisocial, what's wrong with you?"

>_< grr! Well take that! I have Crohn's! Haha, everyone sure shut up after diagnosis...

Shannon said:

It seems like Crohn's patients (though not the only ones, I'm sure) get treated like finicky crybabies and first class overreactors!

For me, the undiagnosed part of my journey was in early teen years - and so of course I got: "you're so lazy and antisocial, what's wrong with you?"

>_< grr! Well take that! I have Crohn's! Haha, everyone sure shut up after diagnosis...

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Shannon, I know exactly how you feel. You wouldn't belive how angry I became when in 2007, my brother would come in and say to me "You're like an old man, look at you", because I was wrapped up in a blanket, lying on the sofa in summer, with the heating on, because I was so ill. Last year he was talking to me telling me that the rest of the family were lucky that I became ill, so they can "take steps to make themselves healthier" and that "Crohn's is one of those disease you would choose to have", if you were forced to pick one.

Just ignore the ignorant people.

I was "lucky" in that my youngest sister had Crohn's long before I did. When I started having some symptoms, I had a fairly good idea where these symptoms were going to lead me and I was scared of going to the doctor to get it all sorted out. Then everything just blew up all at once and I was forced to go to the doctor. He did a blood test, and four days after I got my blood test results, I had a colonoscopy and the GI confirmed it was Crohn's. I was really bummed. I had hoped it was just some bizarre bug I'd picked up and needed a good dose of antibiotics and I'd be back to myself again.

If I didn't have my sister's experience to guide me, though, I'd say that it would have been a relief to be diagnosed rather than sitting around scared, in pain, and wondering if I was slowly losing my mind and my body.

Amen to that. Yeah, all my life it seems that my family kind of thought I was one of those kids with no motivation for life, especially a social one. Not true! Who knows what kind of person I would have been if I had the energy to have priorities other than, "Rest, Try to eat, Try to get dressed today"
But I'm thankful for who I am regardless.

My situation was very similar to what Joan had described. I went from doctor to doctor who all told me, "You're fine. It's all in your head. You have irritable bowel syndrome. You need to change your attitude, try being happy." I was much younger then and more patient and understanding toward mankind in general. Experiencing this disease and the pain that goes along with it, as you all know, was not easy. When I received a diagnosis, I was very angry, upset, and hurt. I was treated like a hypochondriac, a whiner, and a crazy woman. For a very short period, I was even doubting myself.

Since then, I have stuck up for myself and advocated on my own behalf. Any test that they do on me, I ask to read the results. There were some indications of Crohn's Disease on several tests that were done a couple of years before I was diagnosed. After demanding to see my test and lab reports this is what I discovered: Some thickening of the bowel in the sigmoid colon, with one to two diverticula. Multiple adhesions made it very hard to look in the terminal ileum. Biopsies indicate unidentified inflammation in the ileum. After going through those tests and meeting with the doctors, I was told, "You're fine. Things look good. There's no reason why you should be feeling so much pain." I wouldn't believe it myself, had I not gone through it.

My blood was sent to the Prometheus lab and after pointing out the findings that I thought were abnormal (the ones that I mentioned), I was diagnosed with Crohn's Disease. The blood test helped with the diagnosis, though the gastroenterologist said that many of the so called small findings, were common among patients with Crohn's Disease. I was very angry and in shock. I could go on, but I'm working harder on keeping a positive outlook. I wanted to share my experience in hopes that others do not go through the same thing.

What I learned:

* Pain after eating is not normal, especially when it's on a continual basis.
* Sharp burning pain in your gut, with the feeling of digesting glass shards, it not normal.
* Having to use the bathroom up to 10 times a day is not normal.
* Having aches and pains all over is not normal. Good grief, I'm still young!
* Experiencing nausea on a regular basis is not normal.
* Cramping and bloating pain on regular basis is not normal.

I'm sure that if those doctors' wives or children had those symptoms, they would do all in their power to diagnose and treat them. Why should anybody else be treated any different?

This is one of the more disturbing threads on this forum, in my view. (Important, but disturbing.)

How badly do a group of people have to be CONSISTENTLY treated to then actually be RELIEVED to have a diagnosis of a serious illness?

At one point along the road to diagnosis, I remember going in to hear test results and thinking, "please let the test show that it's probably Crohn's." I was disgusted with myself for having these thoughts, but that's how desperate I was to be believed and taken seriously. I think I'd have a pretty hard time understanding people's stories in this thread if I hadn't experienced same. It's kind of unbelievable, don't you think?

For me it was the actual diagnosis. Being 9 years old when I was diagnosed, I couldn't just tell the other kids what was wrong with me for fear of being made fun of or feared because they thought they might catch it. So I got to have the anxiety of living in fear with knowing that I had a disease and what was my life going to be like from then on? It was a scary time for me cause I was hospitalized for 2 months while the doctors tried to figure out what was wrong and after that I had a Central IV put in place for a year just in case I collapsed on the playground. My parents, teachers and any adult treated me like I was going to break at any moment and the other kids never understood the special treatment I got and I'd hear whispers behind my back constantly. The disease itself ripped away my childhood in all honesty.

I find it alarming that there is no diagnostic criteria as such for IBD. You have the ROME criteria for IBS and there should be another one entirely for IBD. You know, like the weight loss, inflammation in blood, blood in stool etc.

My original DX in 1995 was Ulcerative Colitis. When I had my colon removed in 2002, I was disease free! Hurray! I had done my time and now I was cured! I lived happily for 6 years.

When I started having issues again and was eventually re-DX with Crohns in 2009, I was crushed. Devastated. Depressed. In disbelief. I kept thinking they had made some sort of sick mistake. I was done - my disease was gone, right? WTF?

So, for me in my very specific situation, it was way worse after diagnosis.

I still struggle with accepting that I actually have Crohns.

-Amy

Stargirl- there are no criteria like that for IBD because it's a physical thing that can be pinpointed- like with swine flu, you have the symptoms that mean you *may* have it, but you can't say for definate until you test positive for the virus. With IBD, it's the inflammation in the bowels they're looking for. Whereas IBS is a functional problem, there are no physical changes in the bowels where they can say 'aha that's the problem'.

And also, while I did have weight loss, I vomited every day for a week so not surprising really, my bloods were fairly normal (nothing particularly indicative of IBD, just raised WBC which occurs with most illnesses) and I never have blood in my stools. So you can't come up with a definative set of symptoms that point to IBD.

So much easier after diagnosis.
I think before hand I pretty much kept it to myself, I still probably do, but less so, maybe its a male thing but before diagnosis i would never discuss any issues i was having with my mates or work colleagues, perhaps even family. Still not easy now but when it does come into conversation or if it means i'm not available to go somewhere, well of course they now know its my health thats getting in the way whereas before i would probably have made excuses for myself.

Hey Amy, thats a pretty tough road you've been down, must be hard coming to terms with, take care.

Well, I received a true diagnosis fairly quickly, like with 6 months. 6 months of hell but better than most 26 years ago. I had never heard of Crohns. I though, okay give me a pill, get me out of here, I am 19 years old, just got married and want to party! The diagnosis for me was so hard to take.

So short answer: the right after diagnosis.

Rebecca85 said:

Stargirl- there are no criteria like that for IBD because it's a physical thing that can be pinpointed- like with swine flu, you have the symptoms that mean you *may* have it, but you can't say for definate until you test positive for the virus. With IBD, it's the inflammation in the bowels they're looking for. Whereas IBS is a functional problem, there are no physical changes in the bowels where they can say 'aha that's the problem'.

And also, while I did have weight loss, I vomited every day for a week so not surprising really, my bloods were fairly normal (nothing particularly indicative of IBD, just raised WBC which occurs with most illnesses) and I never have blood in my stools. So you can't come up with a definative set of symptoms that point to IBD.

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The problem is so many cases are fobbed off as IBS despite abnormal symptoms and/or even tests. In the 21st century this is unacceptable and as such some guidelines need to be issued. There is always someone like yourself that wouldn't be a "fit", but there is always someone sadly who slips through the net, (with any illness this can happen). For IBD, cases such as yourself could be worked into the guidelines, so if some presented with your symptoms IBD should be one of the things to test for to exclude.
We can't go on as we are with people suffering so much needlessley, things have to change.

(and sorry to OP if I have hijacked your topic!)

But the guidelines are there... You should only be diagnosed with IBS if they have not been able to find any organic cause for the symptoms. If any diagnostic tests are abnormal, then IBS should be automatically excluded. And in order to diagnose IBS, the doctor should exclude a diagnosis of IBD. The problem is docs are ignoring the guidelines. Putting more guidelines in place will not fix that!

In regards to what Kelly said, I AGREE - it is very concerning that quite a lot of us suffer to the physical and social extent that we consider diagnosis relieving.

There are guidelines for diagnosis but what really stumbled me and probably a lot of other young ones out there is that the more invasive, telling procedures are DELAYED in pediatrics, which in my case, only worsened things. Not sure if the adults experience that as well, but for me, I wanted someone to give me definitive results and no one could, they stuck to feeling my stomach, taking my temperature, and giving me antibiotics. ??????? Seriously. If it takes a large needle, or a large scope, or a large scan, let me have it! Just so I can give this a name.

Shannon said:

There are guidelines for diagnosis but what really stumbled me and probably a lot of other young ones out there is that the more invasive, telling procedures are DELAYED in pediatrics, which in my case, only worsened things. Not sure if the adults experience that as well, but for me, I wanted someone to give me definitive results and no one could, they stuck to feeling my stomach, taking my temperature, and giving me antibiotics. ??????? Seriously. If it takes a large needle, or a large scope, or a large scan, let me have it! Just so I can give this a name.

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I was never given antibiotics for my symptoms. Right away the hospital I was at knew that there was something wrong that they had never seen before. I was actually the first person to be diagnosed with Crohn's in my county. I had blood tests, CT scans (with and without contrast), barium x-rays (both swallow and enema), an MRI done and they tested for all allergies. They contacted specialists from around the country and I got a diagnosis over the phone from other GI docs. I was then sent to a GI specialist to seek further treatment where I got my colonoscopy and endoscopy done and was then treated with medication (took two months to get treated with meds).

All I know is that the hospital staff back then were on the ball when I got sick.

What a blessing! Not so with my area, they were sure I had IBS from stress. They even tried to separate me from my mother and ask me if there was abuse going on. Way off. I wish things would have been explored earlier because all this had to go down my senior year, which severely delayed my college preparation and basically enjoyment of senior year in general. But you know, I've been blessed not to have any operations so far so I will take it.

I've been through the diagnosis process far too many times in recent years, as I have several chronic autoimmune diseases. The anticipation is absolutely the worst part. I was terrified of Ankylosing Spondylitis and its related diseases pre-diagnosis. Post-diagnosis, I know the likely treatments I'll encounter, the possible quality of life as time goes on, and can research the hell out of it and feel empowered in that way. Pre-diagnosis, it's all a big unknown, with each plausible condition scarier than the last, and overall it's just overwhelming. I can't research much until I get a diagnosis... I just freak myself out and feel like every possible complication for every condition is an unavoidable eventuality for me. Not rational, but I think pretty natural. To be fair, I've been struggling quite a bit with depression post-diagnosis for my arthritis because I'm still getting worse rather than better, but I think the looming unknown of my GI problems is definitely contributing.

Lorraine, I hope you find the strength, it sounds like you're going through so so much and my heart goes out to you. No matter what you have support here, and if you get up every day and give your body one more chance, you might find a blessing. It took me months before my first good day, and even though that is a very hard way to live, I'm glad I didn't give up.
Thinking of you and sending positive thoughts your way!
Shannon

I honestly think that knowing was worse. Before I just thought that it was IBS...that sucks, but it's bearable. Crohn's is forever, and it isn't just symptoms but there is actually something really wrong with your body and possible horrible problems.

Thank you, Shannon. The support I get here and in my spondy forum is truly the best medicine I've found yet.

With no side effects!

Thanks everyone, I am sitting here crying because I am wishing my 9 year old was diagnosed with Crohns or UC or something that they wouldn't keep taking back. When he was born it was colic, or not colic maybe a lactose intolerance, or then later no it was an immature GI system. When he threw up everyday between the ages of 2 and 3 years old it was behavior. At 4 it was GERD. Then it was food allergies. Later at 5 years old, no he's not allergic to any foods except eggs, but he'll grow out of it. Then it's don't worry he's just a picky eater. At 6 years old he has growing pains he doesn't grow out of. At 7 years old when he has bloody D and sever pain, we see a Doc have a colonoscopy and the diagnosis is now CD. Goes into remission on Asacol. have to changes docs, now its not CD only IBD, they can't be sure. Now its indeterminate bowel disease because the prometheus test is negative. My son has not been able to stay at school for an entire week since Thanksgiving, and no one can give a diagnosis to stick too. Iwould be so relieved to just have a diagnosis.

To top it all my husband has Autoimmune ITP and neutropenia, and is diagnosed with "Undiagnosed autoimmune disorder"

Trina