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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Please help me: undiagnosed, thinking Crohn's


12-02-2015, 08:51 AM   #1
cdnjourno
 
Join Date: Dec 2015
Location: Toronto, Ontario
Please help me: undiagnosed, thinking Crohn's

Hi everyone,

I'm a 22-year-old Canadian woman who has been going through an incredibly rough patch for the past few months.

About two years ago, a GI specialist diagnosed me with IBS. He told me because I didn't have blood in my stool, I wouldn't need to do a colonoscopy or X-ray. He suggested I start a fibre regimen, which has helped a slight bit. I also visited a dietician and cut out certain foods that upset my stomach.

Things had been going about as well as they can when you're diagnosed with IBS. I had diarrhea regularly, even with the fibre, and would often have stomach aches. I would usually have to go to the bathroom right after eating.

But then things started to get worse. I started a new job, and the stomach aches got worse (which I am sure is attributed to stress). Getting ready for work in the morning was miserable, but I forced myself to go anyway. I often didn't eat much there in fear of getting sick. I have been losing hair quite a bit—if I run my fingers through my hair, I'll lose a clump of it. Even if I sleep for 8 hours, I'm exhausted in the morning.

For five days now, I have been out of work because I can't leave my house—I have diarrhea and stomach cramps that have been persistent. I usually take public transit to work, and I know I wouldn't be able to make it to my workplace without having an accident. For these few days, the pain has been far worse than it ever has been before: I have stomach cramps in my lower abdomen, and my stool is a 6 on the Bristol scale. Yesterday, I noticed it was all floating, quite foul-smelling and looked as those there were some red streaks of blood in it. I usually don't have blood in my stool, but it is almost always mucus-y. No matter what I eat, it comes right back out. And because I'm hungry, I'm getting lightheaded and nauseous. Upon inspection, I see I have developed a small anal fissure.

I don't know what to do. I can't go to work, and it's taking a toll on my mental health—I'm the type of person who likes to keep busy and stay ambitious, but it's hard to do that when you feel like, well, crap. I feel too ill to go to the doctor, but I'm not sure if I have another option.

I also fear colonoscopies because I've heard horror stories about the drink they use to cleanse you before it (some of my friends became violently ill when they had to do it).

Please help me. Even if it is just some reassurance that things will somehow get better. I hate this feeling of helplessness.

Thank you.
12-02-2015, 09:52 AM   #2
Cat-a-Tonic
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Join Date: May 2010
Location: Madison, Wisconsin

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Hi, welcome to the forum. I have a few thoughts for you - first of all, do not be afraid of having a colonoscopy. It's a very worthwhile test to have and it's not so bad. The prep isn't fun, but it isn't horrific either. There are multiple different preps out there, and while some are disgusting, others aren't too bad. Personally I'd recommend either Pico Salax or the Gatorade & Miralax prep, as both of those are palatable and easy to keep down. Neither made me violently ill. And remember, most people don't tend to talk about the good times - people vent about the horror stories, so you might hear a disproportionate number of colonoscopy prep stories that are bad, but it's only because people aren't talking about that time that prep went fine. Take the horror stories with a large grain of salt.

Also, can you change to a different GI doctor? The doctor you described, who dismissed you as having IBS without doing any testing, sounds like a pretty awful doctor. IBS is typically a diagnosis of exclusion - meaning, they've done a bunch of tests and haven't found anything, therefore it's probably IBS. It sounds to me like you haven't had any tests done yet though? Have you had things like bloodwork or stool tests done? That's a good place to start.

And as for taking public transportation - I realize this isn't a super fun idea, particularly for a young person like yourself, but a lot of people on the forum do use pads or diapers in situations where they fear they might have an accident. I've used pads myself on days when I was dripping blood out my backside. There's no shame in it, and if it allows you to work then I do encourage you to give that some consideration. There are pads and diapers out there that aren't super bulky and shouldn't be obvious under your clothing.

And as for your last couple sentences - yes, it can and does get better! But, you have to fight for it. First things first, you need to work towards a proper diagnosis (it sounds like you're not accepting IBS as a diagnosis and I think you're right to do that, you know your body best and it sounds like you know that there's something more than IBS going on). So, get yourself to a better GI doctor and ask for some tests. While you're awaiting diagnosis, they should also be able to at least give you some medication for symptom relief - ask about things like Lomotil for diarrhea, or Zofran if you're having a lot of nausea. Once you get diagnosed properly, then you and your doctor can come up with a treatment plan and hopefully get you feeling a lot better. Good luck! And keep us posted on how you're doing and what tests you're having.
12-02-2015, 04:47 PM   #3
buttER
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Join Date: Feb 2015
Location: Netherlands

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Hi there
I know what you mean, too ill to go to the doctor! But.....you really do have to go. You have to help yourself get better. You are young and the future should be bright. It is especially hard to fight for a diagnosis when you are feeling bad and tired tired tired, so feel free to come and vent away here if you are getting frustrated. But it is rewarding when you do finally find a doctor that takes your issues seriously. It might take time but it is worth it. Do you have someone nearby who understands your situation and can also go with you to Dr appointments? Apparently you will also get taken more seriously if you have someone there with you to fight your corner.

I agree on the colonoscopy prep. I have had a few different ones and it is not pleasant but it has not yet made me violently ill. There are various tips and tricks (discussion threads on this site) to make the prep easier. Some people are real experts!

By the way, if your bowel is irritated/inflamed you could try going on a low fiber diet. For me, fiber causes pain and bleeding. What foods do you now avoid? And have you tried probiotics?

Good luck and let us know how you progress.
12-02-2015, 05:53 PM   #4
ronroush7
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Welcome. I myself found out there was stress around public transportation. That was the only option I had. About being tired, have you had blood work done?
12-05-2015, 03:19 PM   #5
buttER
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hi cdnjourno

Are you feeling any better? If not, please make an appointment to see a doctor. And please insist that they take your gastro issues seriously. The sooner you get tests done the sooner you will start to know what is going on. If you are scared about any tests then share your anxiety here, we can all relate to your feelings.
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